Posted By: PaulB Proton Therapy Treatment - 11-13-2013 01:55 PM
I opened up a new treatment phase for me I will most likely begin on 11/25/13, and that is Proton Therapy, which is new to me, although I heard of it, I never figured on having it with the very limited treatment locations with only 11 in the U.S. so far. It's expensive to build. like 100-200 million, and treatments I believe are twice as expensive as IMRT, and will soon find out.

This. ProCure, NJ, is the only Proton Therapy Center in the NY/NJ and metropolitan area. It's a joint venture also with top hospitals in NYC like Continium Health Care Centers, MT. Sinai, NYU, NY Presbyterian, and MSKCC, so I guess these hospitas are not building any anytime soon. That's why my hospital has a doctor working there.

My consultation is on 11/25/13, and will have a CT scan this same date, hopefully non contrast due to my kidneys.

Other than that, I would like to learn more about it, and will, and Protons are not really new, about 50 years old, but the technology the past few years has let this new technology take off.
Posted By: davidcpa Re: Proton Therapy Treatment - 11-13-2013 02:02 PM
I first read about IMPT appx 7 years ago. I posted about it on this site back then and was excited about it's potential for hard to reach cancers and eventually oral cancer due to the reduced cellular kill zone.

Paul, obviously I'm sorry that you have to undergo further treatment of any kind but please share your knowledge and experiences.
Posted By: PaulB Re: Proton Therapy Treatment - 11-13-2013 03:04 PM
Thanks David. I went to search, and read some of your posts with IMPT, and it was helpful. I think IMPT is just a type of delivery system for Proton Therapy, Varian maybe I just read. I don't think mine is, and may be more propriety with ProCure. I forget their acronym, PPT or something. A few here on OCF had it at the same location, which only opened in spring 2012. The hospitals venture that I mentioned, created their own New York Proton Therapy Group, which just became effective September 2013, so I can see more of these hospitals sending patients there.
Posted By: Maria Re: Proton Therapy Treatment - 11-13-2013 04:18 PM
There is also information on sciencedaily if you search for 'proton therapy'. It sounds like the targeting is much better.
Posted By: PaulB Re: Proton Therapy Treatment - 11-13-2013 05:23 PM
Thank you Maria. I like sciencedaily.
Posted By: donfoo Re: Proton Therapy Treatment - 11-14-2013 03:28 AM
Keep posting your experiences with PT as it is so new. Might give others more options for advanced cases. As long as the healthcare system does not completely buckle under the massive obese costs. It will be more than interesting to see how such high end cutting new tech becomes available to more than the fortunate few.
Posted By: Tom O'Sullivan Re: Proton Therapy Treatment - 11-14-2013 01:14 PM
Your timing is perfect. There is a very detailed explanation on proton therapy in today's medical news today website.
Posted By: PaulB Re: Proton Therapy Treatment - 11-14-2013 02:22 PM
Seems like Medicare is pushing this new, and expensive technology, and is approved, and being used often for prostrate cancer. I'll have to check that out Tom. Thanks.
Posted By: PaulB Re: Proton Therapy Treatment - 11-18-2013 01:52 PM
I added the Proton Therapy locations to another post, but I figured to add it here also. I read with only the current treatment centers, only 6,000 patients a year can be treated, so there is a selection basis.
Posted By: donfoo Re: Proton Therapy Treatment - 11-19-2013 08:39 PM
Thanks for the link. Surprising to learn Loma Linda center has been open for 20+ years. It seems new but maybe the limited operational centers make it just seem that way.
Posted By: PaulB Re: Proton Therapy Treatment - 11-19-2013 08:59 PM
You're welcome Don. I think that was the first Proton Treatment Center? Funny, I always skipped reading about Proton Treatment, figuring I would never have it, few locations in the U.S., not even MSKCC, and NJ just opened in 2012, but now I'm going to have it, not this its an award or something I'm getting lol. There seems to be several types too, Gantry, incline fixed beam, fixed beam Proton treatment, which I'm not all familiar with, and as David mentioned IMPT too, which is supposed to to the latest precise delivery. I'll find out soon enough, and maybe I'll finally meet the elusive Wizard smile
Posted By: PaulB Re: Proton Therapy Treatment - 11-26-2013 03:02 AM
I had my consultation at ProCure today in NJ, and then onto Manhattan to see the oncologist. I met an angel on-line in the head and neck cancer website(s) who drove me, so thank you for that, and really do appreciate it.

ProCure is huge, but quiet compared to manhattan hospitals, and looks like a club, which I don't wan't to join for too long. Anyway, the radiation oncologist, who is from my hospital, wants to do 5 weeks Proton Treatment, so I was surprised it was longer, but not really knowing it takes 50Gy gentlly to kill HNSCC. CT simulation took an hour, and must have been scanned, re-aligned a dozen times or so. A mask was made, my 4th, and is a little further down the shoulder than my others, which I never kept, and will use the rubber band type straps in my hands, around feet, to pull my shoulders down. The Dr. wants to start as soon as possible, maybe two weeks, depending on the chemo. We went over the usual radiation effects, but one thing with Proton therapy is the entry burn, my word, is worse than IMRT, but there is no exit burn out the back, and more radiation is concentrated in the tumor, less elsewhere. Asked about carotid blow out, and he lowered my risk to a little over 5%, being my carotid was removed, which is still high, but sounds better than 20%.

Onto the medical oncologist who has been treating me since last year. He wants to do carboplatin being it's less toxic than Cisplatin, and I never had it yet, unlike Erbitux, Taxotere, last year, and Cisplatin, Taxotete, and 5-FU before that, and knows my concerns for an adverse reaction, and kidneys, so it's a once a week hour infusion with low dose carboplatin, probably with ant-nausea meds. Went over the possible, less common side effects, which to me, is more likely. One is the effects on blood counts, which Hemaglobin is always below normal, but not that bad lately after two transfusions in May.

Seeing my local oncologist, who treats my anemia, and is like my primary care doctr, and other doctors as well to get their blessings since they would be treating me if hospitalized locally. Already saw my Opthomologist last week, and all is fine or as good as it's gonna get.

Posted By: tamvonk Re: Proton Therapy Treatment - 11-26-2013 07:25 AM
All planning going well then Paul.
Great news about your driver. There are indeed some special people around.
So, I guess treatment will be over the Christmas period and into the New Year.
You can do this.
Posted By: PaulB Re: Proton Therapy Treatment - 11-26-2013 01:52 PM
Thanks Tammy. There are 3 type of Proton treatment delivery machines there, using the same principle or protons, and one is the big round machine called a Gantry, then smaller fixed beam, and an incline fixed beam. My RO thinks he may use the Gantry.
Posted By: Maria Re: Proton Therapy Treatment - 11-26-2013 02:00 PM
It sounds like they are being very careful about the positioning with the hand and foot strapping - all to the good, and I know you will be careful about managing the 'entry burn'. I am glad that it sounds like you will be able to get started before the year-end holidays.
Posted By: PaulB Re: Proton Therapy Treatment - 11-26-2013 02:51 PM
Thank you Maria. Yes, seems they were being very careful, and Proton treatment is very precise, more so than IMRT, maybe even Cyber knife, I'll find out. I sort of suggested, "Maybe we'll start after the new year?" Doctor says, asap, probably in a week or two. Now I have to figure how I'm getting there daily, which will be just as hard as the treatments.
Posted By: Cheryld Re: Proton Therapy Treatment - 11-26-2013 03:34 PM
Good luck with it all, my dear... and kick it in the butt.
Posted By: PaulB Re: Proton Therapy Treatment - 11-26-2013 05:10 PM
Thanks. I'll probably kick the butts of all these so called social workers first who do crap, other than not help patients, and some don't know their jobs or give correct information either, showing they are not on top of their game, from all my experiences recently, and in several hospitals, nursing homes in the past, who btw, can be evil as far as long term adult care settings. Everyone just refers you to someone else, including many of these cancer organizations getting millions of dollars.

Funny that no one tells you about anything until you ask specifically about it. Now I'm getting a grant application for reimbursement from $50-$4,000 max because I asked, doesn't mean I'm getting it. I also asked about staying at hope lodge in NYC take NJ transit to treatment. Was told you have to have daily treatment in NYC, not chemo once a week there. I called hope lodge NYC, and they said I can stay there even if going to NJ, btw, there are no Hope Lodges, and I'm a little too big for Ronald McDonald's House.
Posted By: Uptown Re: Proton Therapy Treatment - 11-26-2013 09:59 PM
It all sounds great Paul! Of all the things related to radiation, all the machines, the bling, the facilities, etc., it never seemed right to have me hold on to a rope around my feet to pull my shoulders down. Not very scientific. My shoulders were very square back then and both ac joints were burned up. I had one taken out in 2004 and they insisted no sign of ORN, just osteoarthritis. Funny it was red, bloody and brown later on the skin above them both.

Posted By: PaulB Re: Proton Therapy Treatment - 11-26-2013 11:48 PM
This is the second jump rope radiation treatment I'm getting, but I've been tied up many times before that lol. Actually the hospital I was in once, for several months, tied my hands on the bed railing after being bad. I couldn't move my legs anyway, so they didn't bother with them. I don't know how you do it, but keep it up. I'm only 2.5 years out from my first radiation.
Posted By: PaulB Re: Proton Therapy Treatment - 11-29-2013 08:20 PM
I met with my local oncologist on Tuesday, who offered to do Carboplatin, once a week, where I live, locally, instead of me going into Manhattan, which can be a nightmare to get to during the holidays, and in opposite direction of New Jersey where I need to go for Proton Treatment everyday. Considered staying at Hope Lodge in Manhattan on 32nd street, if available, and commute to NJ by foot, train, taxi. which would be a trek, and costly to boot, and nothing is free, cheap, except Hope Lodge, with any option, but my oncologist didn't think staying, commuting by myself was a good idea anyway. Planning is worse than treatment sometimes.

Blood work shows my hemoglobin is dropping from 11.5, my highest in years in September, after being transfused in May, and now is 9.2, but still no need for an injection or transfusion, but the trend has been, I will, especially with rads, chemo, and neither is good for cancer, so they usually wait until it gets below 8, 7, but really anytime under 10, if the patient in distress, like shortness of breath, etc., and is considered an emergency. Mine was 7.5, last year during treatment, until I had two transfusions, and really felt I needed it! During my acute kidney failure in May, my hemoglobin was 6.2, and didn't know I needed one, I didn't feel in distress.
Posted By: samkl Re: Proton Therapy Treatment - 11-29-2013 09:57 PM
Bless you, Paul for the time you give to us in answering questions and support, when you have so much on you own plate. YOU are an angel. Good luck with it all.
Posted By: PaulB Re: Proton Therapy Treatment - 11-29-2013 10:50 PM
Thank you Samkl. It helps me to help others, and basically why I post, and for future reference, and hopefully doing so will help others now or in the future.
Posted By: PaulB Re: Proton Therapy Treatment - 12-03-2013 02:46 AM
I had a swallow study done today, modified barium swallow, which SLP, actually a Phd, and Radiologist, found that some food does get caught up around my epiglotis, due to radiation, and goes into my windpipe causing my chocking, and right side was working fine. The SLP had me turn my head to the left, my most radiated, and only surgical side, to swallow, and swallowed perfectly. In fact, it worked so well, the SLP, who also a researcher, done many studies, abstracts, book collaborations, wants to use my video to show how well this technique works, which I had no problem signing away. SLP also commentated that my swallowing is quite good with all I went through.

I'm also in a follow study for Proton Radiation, and have to do nothing. There are so few studies with Proton therapy treatment that they want to follow patients until 2017.

I told my hospital social worker, and oncologist's secretary that I wasn't going to have chemo at the hospital, and opted for local treatment instead since the commute would be too much, and take 4 hours minimum turnaround, and still need to get to NJ for radiation, and both understood. Hopefully the doctor will too, and the SW said to do what works for me, not the hospital. He did say he will be in contact with ProCure's social worker in regards to housing, transportation, and hopefully the 5 major NYC hospitals involved will come up with alternatives, and said I was the first patient from my hospital being sent to NJ for Proton treatment.

Th next week will be busy. I have a blood test tomorrow. On Thursday I have appointments to see the dental oncologist since my teeth are hurting, and just want him to take a look at everything being I'll be doing Chemoradiation soon, and for him to know HBO, and extractions will be on hold since that was supposed to be done after surgery. The same day, same offices, I will see my ENT, probably look at the swallow study, give his blessings for radiation, but my case(s) are often brought up at the tumor board meetings, but when I last saw him three weeks ago, radiation, chemo was not mentioned yet. On Monday, I see my PCP, Tuesday my local oncologist, who is also my hemotologist for 6 years, I have chronic anemia, and then on Wednesday, I have chemo orientation with the nursing staff, and to sign papers.

I still want to see the cardiologist before treatment starts, regarding my dissected carotid, high Bp, and with my nephrologist, although my kidney levels are improving, they are still high, and at my base levels now with creatinine at 2.3 and GFR at 31, but not 7.2 they were in May, 8 GFR, I was lucky not to be put on dialysis, and have chronic kidney disease anyway, so I can see chemo effecting them, other blood levels too, and another reason feeling comfortable having chemo close to home with all my other doctors around.

One question, what additional anti medications do they give you with weekly Carboplatin?
Posted By: Uptown Re: Proton Therapy Treatment - 12-03-2013 04:45 AM
I don't have the answer to your Carboplatin question. I'm glad the swallow test went well and best wishes for everything else to flow smoothly this week and into treatment soon!

Did you by chance ask about the air bubble thing with your SLP?
Posted By: PaulB Re: Proton Therapy Treatment - 12-03-2013 05:45 AM
No. I forgot. I don't like early tests, 9:30am, and arrived at 9am. I need breakfast to function, a few cups of coffee, otherwise that's all I think about. I have to keep that in mind for treatment. No early appointments 10-11 is good.
Posted By: tamvonk Re: Proton Therapy Treatment - 12-03-2013 08:01 AM
Wow Paul. That sure is a busy week they have planned for you. All necessary to ensure the curative treatment gets done right first time.
Hope you get some breathing space to just rest and relax. And of course eat.
Keeping you in my thoughts and prayers,
Posted By: PaulB Re: Proton Therapy Treatment - 12-03-2013 02:14 PM
Thanks Tammy. This has been my schedule basically for four years, sometimes with even more visits, sometimes less, depending what's going on, and does get tiring with 8 specialists. Last night I had to take a pain pill, Oxycodone, and Gabapentin, since by the end the day my feet hurt more. That was from standing to take the test, and traveling to my hospital, a four hour turn around, but was quick compared to other times. I'm used to it, sort of.
Posted By: Cheryld Re: Proton Therapy Treatment - 12-03-2013 03:13 PM
father in law had weekly carbo in addition they gave him...

benadryl (loading dose)(only through IV)

Ondasetron HDL
Posted By: PaulB Re: Proton Therapy Treatment - 12-04-2013 04:08 AM
Thanks. I had these before, and didn't think I'd get away with none this time either.
Posted By: Cheryld Re: Proton Therapy Treatment - 12-04-2013 04:42 AM
He didn't have a lot of side effects with them. smile
Posted By: Carpe Diem Re: Proton Therapy Treatment - 12-05-2013 06:25 AM
PaulB simply reading your profile has made me gasp, but to read about the hurdles you go through daily makes me wish, so badly, that I could do something to help you. Thank you for all the work and help you put into this site. Good luck with all your treatments. You are a leader.
Posted By: PaulB Re: Proton Therapy Treatment - 12-05-2013 06:30 AM
Thanks Carpe Diem.
Posted By: PaulB Re: Proton Therapy Treatment - 12-10-2013 11:18 PM
Still waiting on radiation treatment to start, but still no word, probably due to all the radiation, surgery I had, and continue to see my other doctors. I have three teeth infected in the gums, and nothing the oral surgeon can do, no extractions until HBO, no HBO until there is no cancer. The oral surgeon put me on three weeks of antibiotics, and hopefully that will help, and go back on Thursdsy for follow-up. Needed some scripts from my PCP, and blood pressure was 179/93, and saw my oncologist today, and was 150/100, so I have to see the cardiologist before treatment. My hemaglobin went up to 9.9 from 9.2, in a few weeks, which usually goes down, but it could have been lowered by surgery, radiation, and is recovering from that, and not being killed off. Tomorrow, I go for chemo training with the nurses, I guess to review side effects, nutrition, hydration, infections?
Posted By: Ambra Re: Proton Therapy Treatment - 12-10-2013 11:27 PM
Urgh Paul, this is so beyond my knowledge that I can not say anything constructive. Just wanted to say that my heart goes out to you and that I can not even imagine what you must be going through. Your courage is an inspiration. Sending all the healing thoughts and positive vibes I have.
Posted By: Tom O'Sullivan Re: Proton Therapy Treatment - 12-11-2013 03:00 AM
Hey Paul, I second what Ambra has said. You are an inspiration. I realize sometimes it is almost overwhelming to me, but to hear your ordeal is a whole new level. keep fighting the fight, I hope you get your HBOT dives in soon and you have slayed the beast. Ambra, congrats on finishing your rads. hope you are doing okay.
Posted By: PaulB Re: Proton Therapy Treatment - 12-11-2013 03:25 AM
Thank you both.
Posted By: tamvonk Re: Proton Therapy Treatment - 12-11-2013 05:15 AM
Paul, I'm sorry the dental issues continue and really do hope the antibiotics settle the infection down.
Can you ring the radiation doc and push to get this rolling for you? Though of course you may want to wait until after Christmas.
At least your haemoglobin is trending in the right direction. The BP still needs a bit of fine tuning, guess the Cardiologist will sort this for you.
Hope you get all the reassurance you need from the chemo Nurses to be relaxed enough and calm for the chemo. I understand your worries given your previous history.
You are like the energiser bunny - just keep on keeping on.
Posted By: PaulB Re: Proton Therapy Treatment - 12-11-2013 07:02 AM
Thanks Tammy. I spoke with the radiation oncologist last week, and the physicist is still working on the treatment plan which takes 3 weeks, so it's almost that time next week, but feels longer. My oncologist is going to be in contact with the RO. I previously asked about starting after the new year, and said, no, ASAP? I can wait too. Calling tomorrow for a cardiologist visit, and have one I've seen before for a stress test for surgery, and hope to get one next week.
Posted By: Cheryld Re: Proton Therapy Treatment - 12-11-2013 04:31 PM
Paul... clean is your friend. I an not sure how sore things are in your mouth. But if you don't own a waterpik... try and get one. Even if you spritz on the lower setting.

After each and every meal.. brush rinse and spritz.

antibiotics will help, and then keeping the area clean will help.

It's the same premise as flesh wound. It's a slow process but your mouth carries mega bacteria etc... so keeping the area clean will minimize progression of the infection. Rinsing with the baking soda etc.. should help as well. You want to rinse out any particulate and gunk. If you are using the waterpik clean along the gum line and make sure to angle it away so that you are not pushing bad stuff under the gum. You mostly want to clean between your teeth and along the gum.

Be meticulous.

take care. Hugs.
Posted By: PaulB Re: Proton Therapy Treatment - 12-11-2013 06:34 PM
Thanks, I do all that, and rinse with aloe Vera juice, coconut oil too, and use biotene mouth wash, toothpaste, after each meal, gum, but returned my water pic since it hurt too much, even on low. Radiation just wreaked havoc on my teeth, in a short period, but what was probably worse was the chemo, which caused worse dry mouth, mucocitis, infection, and other side effects, than radiation, and was in ICU for two months, and no oral care was done, and for a god four months after that. I just remember them using the sponge brushes, suction machine, once in a while, and couldn't even drink water or have ice in my mouth nor cold get out of bed without two nurses, a Hoyer lift. The teeth, if you call it that now, are beyond repair, and past the gum lines, down to the roots, and there is no between the teeth.
Posted By: donfoo Re: Proton Therapy Treatment - 12-11-2013 07:51 PM
Hey Paul,

Finagle your way to arrange a visit with the Wizard. Maybe you will be the one to pull the curtain like Toto. Still a question in my mind is how the analysis and strategy is developed for each treatment plan. How much input does the RO have, is the dosimetrist there to just carry out the orders from the RO, how collaborative is the process, and the Grand Wizard (medical physicist) - how much do they get their hands dirty in individual cases rather than managing the facility's equipment and processes, etc.?

I never really had the chance to get all my questions answered at the time and at some point did not really care, just wanted to get past the rads.
Posted By: PaulB Re: Proton Therapy Treatment - 12-11-2013 11:07 PM

The gantry Proton machine is huge, and proton equipment is a city block long, so we'll call that Emerald City lol. Seems this RO was out of the loop, as far as knowing when the treatment plan would be completed, and said it takes three weeks. It probably didn't help I had 18 PET/CT, CT and MRI's discs to give them, and determining dosage from prior radiation. From what I know, the RO has to approve all treatments plans, and is overall in charge. The RO knows the formula the physicist or dosimetrist it's uses, but hear a computer does it now, at least for IMRT. After I saw my RO, different from Proton, last year, he said, now the difficult part of his job begins, treatment planning. He isn't taking orders from no one, and calls all the shots, pleasant enough guy though, and is the Physician in Chief for their 5 hospitals, Chairman of Radiation oncology, Co-director for Head and Neck Cancer, so can't see the physicist being above him. I still would like to meet the Wizard, kind of like, where's Waldo in the picture.
Posted By: donfoo Re: Proton Therapy Treatment - 12-12-2013 05:54 AM
Here you go. I posted this on my journal site. It covers the roles and relationships between the radiation oncology professionals. You are probably signed up but if not, register and I'll get you access. You need to register to see the contents.
Posted By: PaulB Re: Proton/Carboplatin Chemoradiation - 12-14-2013 05:07 PM
My oncologist wants me to see the cardiologist before chemo, carboplatin, treatment, whenever that is, and still no word on radiation yet, so I doubt it's next week. I'll even be fine if they say I can't have anymore radiation, and roll with the dices. I have a doctor appointment on Tuesday. My blood pressure was one day 179/93 and then 153/100, which is high for me, normally 130/80, and heart has been racing.

Thanks Don, good account of your Tx, and read the different roles.
Posted By: donfoo Re: Proton Therapy Treatment - 12-14-2013 10:30 PM
[quote]read the different roles[/quote]I did go back and reread that doc and it was still unclear how they are organized.
Quick google found this how Vassar Brothers Medical is organized:

The staffing of the four centers is managed centrally and assignments of personnel to clinics remain relatively static. This strategy affords stability and continuity in the practice of each center combined with the significant advantages of built-in peer review and cross-coverage as well as centralized administrative control.

The physics division of the group comprises six full-time licensed Medical Physicists, including one Chief of Physics, plus two Medical Physics Residents. All four centers are served by a single physician group that currently comprises six ABR-certified Radiation Oncologists; all of them are credentialed at all sites. The Dosimetry section, which also reports to the Chief of Medical Physics, comprises five CMDs including one Chief Dosimetrist. The therapists report to three site supervisors, one is responsible for FROC and PROC, another for VBMC, and the other for UROC. All of the above are involved in some capacity as rotation supervisors or teachers in the Medical Physics residency.

The Chief Medical Physicist, whose base office is at Vassar, serves as Director of the Physics Residency program. Those duties are part of the job description, and are a key element of the recruitment process if/when the position is filled.

Found this this too about specifics of job of dosimetrist
Posted By: PaulB Re: Proton Therapy Treatment - 12-18-2013 09:02 PM
Seems like I will finally start radiation on January 6th. The radiation center called me today that my treatment plan is completed, and wanted me to start tomorrow night at 8pm lol. First I have to see if my driver is available for transportation, which I'm paying $75 a day for, and have to contact my oncologist when I can start chemo. Then the scheduler said Sunday night at 7:30PM lol, but agreed after the New Year. No sense ruining my holidays at this point, and having missed days from the holiday closings, probably having to be made up on Sundays.

Contacted my oncologist's office, and will start carboplatin on January 8th, and once a week thereafter. They have to get copies of my EKG from my cardiologist visit yesterday, and I have an echocardiogram on the 30th, a stress test in February, but was given an all clear to start chemo anytime.
Posted By: Maria Re: Proton Therapy Treatment - 12-19-2013 12:40 AM
Hi, Paul
I'm glad the schedule is set. I don't know if missed sessions are as bad with the proton therapy as they are with IMRT, but scheduling so you can go straight through without holidays getting in the way sounds sensible to me.
Posted By: PaulB Re: Proton Therapy Treatment - 12-19-2013 12:54 AM
Thanks Maria. Planned breaks are another story maybe, just like weekends, but yes, I would rather go straight through. I would think Proton is the same as far as tumor kill, cancer regeneration or repopulation, as IMRT.
Posted By: donfoo Re: Proton Therapy Treatment - 12-19-2013 05:39 AM
That machine must be expensive. Treatment slots on Friday and Sunday nights! They are paying mucho overtime for the techs. I'd be signing up for Sunday nights for 2x plus I suspect. :-)

At least you have things pretty settled now and your time window for treatments. Enjoy the holidays! don
Posted By: Waldeau Re: Proton Therapy Treatment - 12-19-2013 06:21 AM
Paul, it's good to hear that all is scheduled. Know we'll all be pulling for you.
Posted By: PaulB Re: Proton Therapy Treatment - 12-19-2013 01:52 PM
About 200 million. You enjoy the holidays the same.
Posted By: PaulB Re: Proton Therapy Treatment - 12-19-2013 04:38 PM
Well, January 6th didn't go over well with my two radiation oncologist's overseeing my care at the hospital, who don't want to wait any longer being I had a neck dissection on October 24th, with positive margins, so now I'm starting radiation this Sunday, December 22nd at 7PM. This was the schedule coordinator idea at the private radiation center that came up with the January date, which I happily agreed, but should have checked first with the doctors before I started calling everyone, and this morning, I had to call everyone back to re-schedule transportation, and chemo, which will be on December 26th at 9am, which is going to be more of a inconvienance to go there, which is not easy for me not driving, getting back home, and then going to radiation later in the day. Now they say only night positions are available for radiation, and there was no mention of this previously, and hours of operation were Monday through Friday 8am-4:30pm, but they are closed on the 24th and 25th, so those days will have to be made up, and is going to be a problem for my driver driving at night, including myself. Plus, the concierge who handles booking restaurants, hotels, told me three weeks ago, it looked like in the computer I was starting on December 19th, which proved correct, but when I spoke to the schedule coordinator that same day, she said she has no idea yet, is the one who schedules, and treatment plan wasn't completed.

My cardiologist, who I visited on Tuesday has to send a clearance letter that I can start chemo, which he verbally gave me the ok, so had to call his office too, and the oncologists doctor's office manager said she was going to call yesterday, and today I have to do so.

As I already learned, you have to do the work and coordination most others in the medical profession should be doing, and are either too lazy, not competent enough or playing stupid to do themselves. Getting tired of this nonsense, and I didn't even start treatment yet lol. I just feel sorry for the next person that steps out of line with me cause their going to get a mouthful from me. I already don't like the schedule coordinator, and haven't even met yet, based on their doings, availability, demeanor, and tone of voice on the phone.
Posted By: tamvonk Re: Proton Therapy Treatment - 12-20-2013 08:39 AM
Oh Paul. This is so frustrating. However I admire your self control. I would have lost it long ago.
I hope your driver is organised and you get some assistance with all these costs.
I also want to wish you a happy Christmas. I don't suppose it will be too merry. I will think of you on the day and say a silent toast , praying too that this treatment does what it is supposed to do.
Happy Christmas and here's to a Healthy 2014.
Posted By: PaulB Re: Proton Therapy Treatment - 12-20-2013 04:11 PM
Thank you for the thoughts, Tammy. I think I'll be ok for Christmas eve, day, at least, with only two radiation treatments under my belt by then. Still concerned going into something that has a 20% risk of death for me, basically from carotid bleed, aka blowout, but another RO, with lesser experience, says it's a little over 5%. Both are stil high to me lol, but really have no other choices, except do nothing, which is hard for me to do, and I like to strike back first!

Happy holidays!
Posted By: Doolittle Re: Proton Therapy Treatment - 12-20-2013 06:09 PM
Good luck Paul happy holidays looks like we will have a white Xmas up here
Posted By: donfoo Re: Proton Therapy Treatment - 12-20-2013 06:23 PM

Keep up the good fight and enjoy the holidays as best you can. Don
Posted By: PaulB Re: Proton Therapy Treatment - 12-20-2013 08:10 PM
Thanks Don, I will! Lining up my menu already lol, all seafood on Christmas Eve, linguine with octopus puttanesca, Caesar salad, bacala salad, fried calamari, and shrimp. For breakfast Christmas Day, Panettone eggnog French toast, bacon, bagels with smoked salmon, cream cheese, onion, avocado, juices. Maybe ham or duck for Christmas Day, lasagna, if I feel up to it, mashed potatoes maybe with carrot or turnip or just roasted, shrimp cocktail for appetizer. I'll probably wing it, and like the soup Nazi sometimes, "No Food for You!" If anyone acts up lol.

Enjoy yours as well, Don, and Doolittle.
Posted By: Cheryld Re: Proton Therapy Treatment - 12-21-2013 07:36 AM
Dude I like your rads dr. I was about to say the same thing he did... The minute they offered it tomorrow - I woulda been there with bells on even if I had to kidnap one of santas reindeer to do it. this is NOT something you wait to do - because it's inconvenient. No one wants to go through treatment during Christmas I totally get it but I'd be willing to forfeit this one to live to see another one. Kudos to him. And as always hugs to you.
Posted By: PaulB Re: Proton Therapy Treatment - 12-21-2013 12:09 PM
Thanks, it was much more than the holidays, if at all. My oncologist has to approve my getting chemo, and with a days notice, I didn't know what was possible, when I could start, and asked to call back, but person was impatient, plus I'm having an echocardiogram on Monday, as part of my chemo check-up requirement, and still need a stress test, and cardiologist had to give approval to my oncologist. Also, I have no way of getting there, and have to pay someone, have to come up with $375 a week on a fixed income, and give them notice also, and didn't know their availability at the moment, and already told my driver it didn't look like I was starting next week, and been doing this week to week. All was needed was a little cooperation, and coordination from the radiation center, and funny how the concierge knew when my start date was 4 weeks ago.

After 8 different cancer treatments, 8 recurrences, 4 years continuously having something done, hundreds of doctor visits, tests, it is and has been an inconvienance for everything, hurry up and waited plenty.
Posted By: n74tg Re: Proton Therapy Treatment - 12-22-2013 02:05 PM
Hello Paul:
I've been meaning to read your thread for a week now. A bridge partner giving me a newspaper article about proton therapy sealed it; I read your thread same day.

All I can say is your spirit is amazing. We all get caught up in the details of our own case, thinking how bad we've got it, until we read about someone else who is fighting a so much tougher battle, and for maybe the 7th or 8th time. Several times during your thread I thought how does this guy keep going on, never giving up, a true never-say-die attitude. But, every day you just seem to wake up, put on the armor and go back out to slay the dragon.

I don't have any words of knowledge to give you. I just wanted you to know that I am amazed by your stamina and spirit and that your continued writing and sharing when it's the last thing you probably have the energy to do is so much appreciated.

I hope you enjoy the Christmas meals you outlined above; I just wish I had some taste so I could enjoy something/anything similar.

Merry Christmas Paul


Posted By: PaulB Re: Proton Therapy Treatment - 12-22-2013 08:55 PM
Thanks Tony. Just doing what everyone else would do in the same situation, and getting ready to leave by 5pm, and already nauseas, vomiting lol from taking Oxycodone since my teeth decided to act up since yesterday, but my oncologist gave me anti-nausea meds, and taking them now. Anyway, enjoy your holidays as best you can also, and I will update soon if I have anything newsworthy.

Merry Christmas!

Posted By: Carpe Diem Re: Proton Therapy Treatment - 12-28-2013 05:05 AM
Wishing you the best Paul. My admiration for you grows. This dude's fuse is about the thickness of the cursor line when it comes to these medical aparatchiks who seem bored with you trying to save your own life.
Posted By: PaulB Re: Proton Therapy Treatment - 12-28-2013 03:46 PM
I have 4 proton treatments under my belt already, and the weekend off! It was an odd week, going in on Sunday, Monday, and then off Chistmas Eve and Day, which was the good part, and cooked up a storm, which made me tired for chemo by Thursday, but that went well without incident. I think the decadron, a corticosteroid given, kept me up the whole night, but I enjoyed watching on AMC the Godfather movies for the holidays, bringing back old memories.

I'm pretty much in and out of radiation in 40 minutes. The set-up time with the 'snout', positioning, repositioning takes the longest, and Proton Treatment can hardly be heard, but there is a slight sound in the distant like a radiator pinging or submarine sonar, and it's over before you know it, but they do two locations on me, change my position, brass snouts, I guess made for my tumors. I'm not receiving the large Gantry Proton machine, but a smaller "Incline Beam" machine, which may be proprietary, but uses the same protons. They are 4 treatment rooms, Gantry, incline beam, fixed beam, and other is incline or fixed beam, and protons can only go to one machine at a time, being it all comes from the same sub atomic machinery, which is probably the whole length of this very large facility, which is very upscale compared to other places I've been.

Using the same Aquaphor, Cetaphil on my neck, and they gave a sample of Medline Remedy, with olivamine, skin repair cream.

My hours were odd, at first, 7:30, 6:30 and 5:30pm, but on Tuesday, New Year's Eve, I'm moving to 9:30AM, due to request of the person driving me to New Jersey, and then off NYD. NYE I hope to have lobster, lots of butter, other fine food, and Prime Rib NYD.

This Monday I'll have my heart checked, really lol, with an echocardiogram. The abscess, tooth infections seems to be held at bay with the antibiotics.
Posted By: davidcpa Re: Proton Therapy Treatment - 12-29-2013 02:30 PM
Really interesting.
Posted By: PaulB Re: Proton Therapy Treatment - 01-03-2014 07:53 PM
I couldn't go to radiation today due to the snow. I go back on Monday, so I have a three day weekend! I'll probably see my RO on Monday, and will ask about the days being made up, and about any percentage survival loss. Definately not gong in twice a day, if it's done with Proton Treatment. Have to have my blood work faxed to him since I can't get a copy until I see my oncologist later that day, they are not associated. So far, everything is gong well, minus transportation, and mixed treatment hours. I did have dry mouth once my air conditioner broke down, I use it during the winter sometimes, so I bought a humidifier, and that helped, along with biotene spray, water, sparkling juices, soda, and brushing during the night. I have more mucus since my surgery/radiation in October, and coughing from the vagus nerve removed, and do aspirate from from swallow study. the neuropsthy inmthe hands and feet worsened sincevchemo, so takiing gaopentin mre often. 7 proton treatments down, 2 chemo, 18 and 3 more to go...whose counting lol.

Cooked up a storm Christmas Eve, Day, NYE and NYD as planned. I made crab and lobster imperial with leftovers yesterday, and today beef pot pies, so the swallowing is good, supposed to turn my head and swallow to prevent aspiration, but sometimes I forget, food gets caught, and have to hack it out. and get into a choking fit. Better to turn and swallow.
Posted By: PaulB Re: Proton Therapy Treatment - 01-12-2014 04:18 PM
I finished my 12th radiation treatment on Friday, and was my first full week without a holiday or interruption. I saw my RO last Monday, and starting to get mucocitis, so I'm getting the saline spray rinse everyday prophlatically, but since my 3rd chemo infusion on Thursday, my taste is mostly gone, maybe developing thrush, and neuropathy is worsening. My MO gave me a prescription for Lyrica, but is too expensive right now, $166, so sticking with the Gabapentin until I'm in the catastrophe phase with Medicare, and then may be only a few dollars.

Sometimes I forget I'm diabetic, and let my glucose get out of control, the decadron, corticosteroid, may be a factor with diabetics to increase it, and wasn't feeling well yesterday, blurred vision, frequent urination, thirst, and upon checking my blood glucose it was a whopping 575! I almost went to the ER, but I would probably be there a few days. I understand they don't let you leave until it's under 200. I've been taking long term, short term insulin, and got it down to 333 today, but also effects thrush I Believe. I bought a bp monitor with health concern now, since it's been running high. and is 140/92, pulse 89 this morning, but was higher, and reason my MO sent me to the cardiologist, and did the EKG, echocardiogram, and still have to do the stress test, chemically.

The Proton center had a graduation party last week for all prior patients, at least 100 people, staff. It was a catered affair witj pasta, salads, sandwiches, meatballs, chicken, and more. The food looked good, but I wasn't hungry after being bolted down for 30 minutes. They gave out certificates, had speeches, and have these gatherings several times, so no ringing the bell here.

Tomorrow I see the RO after Tx, so I'll see what he has to say.
Posted By: Maria Re: Proton Therapy Treatment - 01-12-2014 04:54 PM
Gracious, Paul, that glucose level is pretty scary - glad you were able to get it back into the stratosphere at least.
The graduation party that the proton center sounds encouraging if less musical. Keep us updated!
Posted By: Uptown Re: Proton Therapy Treatment - 01-12-2014 05:42 PM
Sorry to hear about some of the challenges building. I never made the connection before but I believe your diabetes may have played a part of your system candida problem during treatment before.

Hang I there, Paul, you are seeing the top of the hill soon.
Posted By: PaulB Re: Proton Therapy Treatment - 01-12-2014 08:39 PM
Thanks all. Definately, Ed, I think so too. The antibiotics for my tooth infection may not be helping either. Darn yeast lol.
Posted By: tamvonk Re: Proton Therapy Treatment - 01-12-2014 09:56 PM
Goodness me Paul. Drama follows you. Yes the steroids will definitely increase your blood sugars. You will probably need to increase the insulin while on the steroids. Of course, higher blood sugars are a wonderful environment for yeast, they love it. A vicious circle all right. I am really quite impressed by how you do manage all this. It's a case of having too isn't it.
Do You take Beta Blockers to control your heart rate? They also help with BP control. I'm sure the cardiologist has this all under his watchful eye. When is the dobutamine stress test? All ensuring that you have good coronary blood supply. Unfortunately diabetics are all prone to cardiac issues as well, but I'm sure you know all this.
I hope the neuropathy does not get any worse, and I curse your health system where you have to make do due to cost.
Take care, keep warm,
Posted By: JMKramer Re: Proton Therapy Treatment - 01-13-2014 03:22 AM
The Hospital at the University of PA (HUP) also has proton therapy. I am three weeks in. Proton, as we affectionately call it, has not been tested in head to head with IMRT but anecdotally and logically it has less toxic than photon therapy. Mainly because there is less collateral damage to non-target cells. The beam is tighter and can be more precisely focused. The beam drops all of its energy at the site determined by the treatment plan and does not pass through the other side.

I wouldn't say Medicare is pushing it so much as is willing to pay for it. I am at 15 of 33 Gy and generally feeling ok. My mouth is painful, I have thrush and swallowing is becoming a problem. But my energy level and appetite are good and I still have some taste left. There is no apparent damage other than a bit of skin reddness at the radiation site.

I'd be interested in knowing how this compares to someone receiving IMRT.
Posted By: PaulB Re: Proton Therapy Treatment - 01-14-2014 11:19 PM
Thanks Tammy. I don't remember as much with the chemo brain and carb fog lol. I didn't know the name of the drug, now I do, used for the stress test, which is scheduled on January 24th the same day as radiation and chemo. I think I'm going to reschedule, and ask my RO his thoughts if it creates more pressure on my carotid artery stubs, which is where my radiation is directed at. I take a low dose Bp medicine, Amlodipind, prescribed by nephrologist, so it may be kidney related too, and was like this before my recent surgery, except for racing heart.

My RO gave me a prescription for nystatin, swish and swallow, for the thrush, and nurse gave me samples of NeutraSal (Supersaturated Calcium Phosphate Rinse), a FDA reviewed product, indicated for the treatment of Xerostomia (dry mouth) and oral mucositis, and signed me up for the direct access program, so I should be getting more delivered. It's a little powder, pretty tasteless, to be mixed in a cap, swish and spit 2x.

As far as Protons vs IMRT, Protons takes longer to set up. My first round of IMRT in 2011 was bilaterally, from bridge of nose to the shoulders basically, 17 zaps, and took 17 minutes from start to finish. With Protons, I'm getting two locations, and this usually takes 30 minutes, but the zaps you it really don' hear, but some slight clinking in the background. The mask is the same, some UFO looking contraption hovering over your head, is the same for both. Also, there are not many studies to compare IMRT to Proton Treatment. In fact, from my understanding, there is no need for any clinical trials like chemo needs to have before FDA approval, and medical technology just needs to show it works just as well or better then the current technology, under 510(K) to get FDA approval. There are newer Proton Treatment machines being approved that have less footprint than the larger gantry type. Mine is a smaller incline beam proton machine, although they have two other types, flat beam, and large gantry, all using the same protons.
Posted By: PaulB Re: Proton Therapy Treatment - 01-17-2014 11:02 AM
Yesterday, my glucose shot up again after the decadron infusion, aka prednisone, to over 600. It was so high it only registered Hi on my two glucose monitors, meaning it's over 600, and doesn't read anymore. I had to inject myself with short and long term insulin all day, night, and It's down to 422 now, still high. I'll see what my radiation center says, and didn't want to miss a day to go to the ER, but have the weekend off in a few hours to decide.
Posted By: tamvonk Re: Proton Therapy Treatment - 01-18-2014 03:44 AM
Oh dear. Had your team not thought of the repercussions on your blood sugars.
Would it be possible to get them to do what we call a sliding scale of insulin ?
So that the amount of insulin you give depends on your blood sugars. Use your normal long acting, but if your sugars are high give a rapid acting like Novorapid to quickly reduce the BSL. For example, if BSL 6 - 10 use 4 units Novorapid, if 10 - 16 give 6 units, if > 16 give 8 units. I'm sorry but we use different blood sugar measurements here. Normal is 4 - 6 for us. We would get you to check your sugars 4 times a day. Before and after meals and last thing at night.
Whoever manages your diabetes must be able to come up with a plan Paul.
Hope you get some help with this.
Be careful and take care,
Posted By: PaulB Re: Proton Therapy Treatment - 01-19-2014 01:06 PM
Thank you Tammy. I use both the short term insulin, Novolog, 4 units, and long lasting, Levemir, 10 units, although was using lantus for years, but insurance doesn't cover that anymore, and I do use some sort of sliding scale when my glucose is high, but this did hardly anything to lower it from the decadron. My oncologist just prescribed Glipizide, so will see if this helps. I was able to bring it down to 350 this morning, but I do have another, and final decadron infusion on Thursday again. I used to see an endocinogist, prior to cancer, but will all my other doctors, recurrences, treatments, I never went back, and his wait time for an office visit is 6 hours lol. I did get the insulin pump from him back in 2009, which was supposed to be started after my induction chemo, but things didn't go well with chemo, and I get recall notices for the uninstalled insulin pump, so maybe things worked out. Basically, my PCP, other doctors, somewhat manage my diabetes, prescriptions, but should see a endocrinologist, and manage it better myself.

I do have an early radiation graduation party on the 22nd of January being my last day of treatment is the 29th, hate celebrating before completion, somewhat superstitious lol, but it's a nice catered luncheon once every few weeks, with prior patients invited, short speeches, and certificates being given to graduating patients in their beautiful lobby floor with fireplace, two story ceilings, leather furnishings. On your last day they do play the theme song to Rocky, "Gonna Fly Now", staff, whoever is waiting for treatments participate in congratulating you. I guess I didn't do bad, so far, for someone who was told I stood a 20% chance of bleeding to death from my carotid artery stubs from this treatment, and can't wait to punch my mask like Rocky!

I mentioned NeuraSal (Supersaturated Calcium Phosphate Rinse) prescribed to me, and works well, and use it instesd of the salt water, baking soda rinse, which I always disliked, and it cleared up my mucocitis, dry mouth, and able to eat better now. The company sent me my refills, express mail, for a month or so, and a complimentary bag containing dry mouth gum, with Xylitol, and sore throat relief lozenges, cherry flavor, not that I have any taste these days. I did look into the NeutraSal, and found positive findings, and an article below from Oncology Nurse Advisor, if it may be of interest to anyone.
Posted By: Uptown Re: Proton Therapy Treatment - 01-19-2014 02:01 PM


That's the word that fills me each and every time I see anything from you!

I'd say take care but I know you are like a cat...and an entire medical team.

I share superstitious perspectives with you. I remember in college taking advanced open water cert and we chartered a 55 ft motor sailer out of Miami and lived on it for 10 days, scuba diving the Bahamas. We got our grade about 3 wks before the trip. I was only thinking, not really worrying about what if that jinxed our trip. We were almost 100' down and I looked over at something touching my shoulder. It was the Divemaster asking for air! We shared and he emphatically motioned to surface now. As I went through (safe) ascension all I could see was those huge eyes through the mask looking at me. I surfaced, gave the all clear and heard people screaming orders. They were yanking everyone out, frantically ripping off gear and even throwing tanks below.

I put in a shirt that said "I Survived the Devil's Triangle". The captain grabbed me by the shirt, pulled out a knife and cut it off, tossing it in the water and screaming expletives at me. I was almost in shock as I looked over and saw two huge water spouts bearing down on us. As a male, I of course grabbed a camera and started snapping as the rest were getting in. One was so big and so close you could actually see fish coming up on both sides of the bottom of the water spout. I took a roll and actually caught both of them next to each other. I even won a weather photo contest with that picture!

Bring it on home Paul! You are the greatest!

Posted By: donfoo Re: Proton Therapy Treatment - 01-21-2014 03:45 AM
"them" = whales? sharkies don't spout water. what kind of whales in the Bahamas? Here along the Pacific I know about whitey and all the whales, etc.

Paul - glad to hear things are progressing and tracking well for you.
Posted By: PaulB Re: Proton Therapy Treatment - 01-22-2014 12:07 PM
Thanks Uptown, Don. Good point with the shark. Dolphins spout, and out of curiosity, I looked up whale sightings the Bahamas, and they do occur. Up here in the North East we have them.
Posted By: Uptown Re: Proton Therapy Treatment - 01-22-2014 03:09 PM
After a wild night, I am struggling with vision and processing so give me a pass guys...till noon at least.

Don, I think you are asking me about the water spouts. If so, here's my answer...if not...never mind. wink

The water spouts I refer to are tornadoes on the water. One was a rope and the other fairly large with water flying up on the sides of where the spout was touching the water. Out of 30 snaps or so, I caught them both crossing. It is a lovely photo. I used 4 rolls trying to catch the sunset after the storm as it was between the masts of the boat. I thought it would win the contest but I entered the water spout one too just because I thought it was cool. Apparently the judges did too.

I will have to scan the photo.
Posted By: donfoo Re: Proton Therapy Treatment - 01-22-2014 03:55 PM
That is hilarious! Your kind of water spouts is VERY different than the water spouts I think of. Probably a lot closer to the truth of the Bermuda Triangle as well.
Posted By: Uptown Re: Proton Therapy Treatment - 01-22-2014 10:14 PM
Exactly, Don, although a whale would have been more fun to ride. smile

I loved that shirt, too. frown
Posted By: PaulB Re: Proton Therapy Treatment - 01-24-2014 11:58 AM
I'm just getting back after a few days having to reset my password, darn iPad. I too thought it was a whale lol.

I didn't go to radiation on Wednesday, due to the snow, so another day will be tacked on at the end of the day, and as a result, will need another carboplatin infusion next Thursday, and would have finished already if it were not for the days missed with the snow, and holidays. I previously spoke to my RO about missed days, cancer regeneration, and loss of survival rate, 1.7 days for each missed day. He said its true, but is not that concerned with me being my tumor was removed surgically, and is what's left is microscopic, but still best not to miss any.

I couldn't go to my early Proton graduation party yesterday since I needed to go to chemo right after, but will be invited back one I finish. As mentioned, it's a cratered affair with prior Proton radiation patients, staff and any other current patients there. For a child, they gave him a sponge bob cake, and a few days ago had a consumed dressed sponge bob there, and looked good. I don't know how this place makes money with its football field sized facility, staff out numbers patents, which is not busy like others I've been, graduations, gift bags, prostrrd patients get a $100 white robe, and if there is delayed treatment from technical problems, they order pizza for everyone lol.

The decadon, aka prednisone, dex given by IV prior o chemo, once again raised my blood sugar over 600 last night. Working on getting it down with medications, and is at 450 this morning, and have bern up since 3am. It like your mind is racing after drinking 20 cups of coffee, but still being tired.
Posted By: PaulB Re: Proton Therapy Treatment - 01-27-2014 12:02 AM
A basic video overviews of Proton Therapy, and the cyclotron.
Posted By: donfoo Re: Proton Therapy Treatment - 01-28-2014 01:26 AM
Hey. Got stuck viewing a few of those videos on proton beam therapy. Amazing technology. No wonder why it is still so rare and costly. Unless someone with sufficient curiosity did the research they have no clue how much machinery and technology surrounds them and beside them to create and deliver the dose.

Also very comforting to know there are techniques like this to deliver such precise dosage within the body while sparing the other non targeted areas.

Posted By: PaulB Re: Proton Therapy Treatment - 01-31-2014 12:28 AM
Today I graduated from Proton Therapy at ProCure's Proton Therapy Center in Sometset, NJ, and finished my chemo too! I received my certificate, as thier 507th patient, my mask, which I will decorate, and a ProCure commemorative challenge coin, which history, significance, dates back to WWI, so there is no ringing bells here, which also has history, significance. I can also attend a catered luncheon for graduation, and all future weekly graduation luncheons as an alumni. Free food forever lol. and a classy place!
Posted By: PaulB Re: Proton Therapy Treatment - 01-31-2014 12:30 AM
You're welcome, Don. I thought you would appreciate it. I never got to meet the Wizard, who is still elusive!
Posted By: tamvonk Re: Proton Therapy Treatment - 01-31-2014 01:16 AM
All good news Paul. You look like you have come through this treatment unscathed. Now to get on with life , and wait for the scan I suppose.
Hope your blood sugar levels are back to your normal.
Posted By: PaulB Re: Proton Therapy Treatment - 01-31-2014 01:49 AM
Thanks Tammy. Not yet. After the recent surgeries, treatment, chemo, I was almost knocked out this morning after radiation by low blood sugar! I felt it, had white patches in my vision, so knew what it was, and asked the nurse for orange juice, who had me sit down. Now it's on the way up hign again fro. decadon I had after. At least it's all over, but both radiation, and chemo effects, are still working for a few weeks.
Posted By: Mary40000 Re: Proton Therapy Treatment - 02-01-2014 03:21 AM
Congratulations Paul on conquering the Proton! I love that you are a perpetual lunch guest if you choose to be. Take care, and, of course watch out for water spouts--now that we all know what they are (I thought whale too)

Best wishes,
Posted By: donfoo Re: Proton Therapy Treatment - 02-01-2014 04:47 AM
Yes. Glad to hear treatments are done and now the process of getting better. Tough as you are, it will be like a weekend hike. Best to you, Don
Posted By: PaulB Re: Proton Therapy Treatment - 02-01-2014 02:27 PM
Thanks Don! Day two of freedom lol!
Posted By: Maria Re: Proton Therapy Treatment - 02-01-2014 10:13 PM
Glad to hear your treatments are done in good order. When my husband was having his IMRT treatment, he and his RO (both physics geeks) would chat about the proton technology. It really is pretty amazing.
Best wishes as you recover.
Posted By: PaulB Re: Proton Therapy Treatment - 02-01-2014 10:49 PM
Thank you Maria. It is amazing, including the size of the facility. I don't know if it was this for profit center, but the staff had to be at least 4 to 1.
Posted By: donfoo Re: Proton Therapy Treatment - 02-02-2014 04:05 AM
[quote]I don't know if it was this for profit center, but the staff had to be at least 4 to 1.[/quote]After viewing those videos, there is NO way on earth those facilities run in the black on their own. There must be government and private subsidies to keep them afloat for now.

The 4 to 1 is those you SEE. There must be a number of them like the wizards and other specialist techs who keep all the proton machinery running and monitored.

It really looks like a science lab experiment that somehow got loose and got permits to treat humans. lol
Posted By: PaulB Re: Proton Therapy Treatment - 02-02-2014 01:01 PM
I know the Proton Center they are building in Manhattan has an investment opportunity for foreign investors starting at $250,000, who will get Visa's under a government program for them and their family. Forget what else it included. Not sure if it was the case here. 4 to 1 is just a guesstimate since that's the most patients at anyone one time I see, 4 machines, 30-60 minutes per patient. I would probably see about 20 employees, and this is just a radiation center. When I had IMRT at another private radiation center, which was twice as busy, there were 8 employees. In total, with all the Proton Centers in the country (11) only 6,000 patients can be treated each year with Protons. At my location, which opened in 2012, I believe, I'm their 507th patient. All the centers are pushing to treat prostrate cancer noe, someone said as prostrate mills lol, since it's easy money. I read that it cost $49,000 to treat prostrate with protons vs $43,000 with IMRT, which wasn't wha I read before that Protons was twice as expensive as IMRT. I'll see when my bill comes in lol.

One question I have now, and will ask on follow-up, is about re-irradation with Protons, its frequency, like it's done with IMRT. I would assume it may, based on the patients total Gy, organ toxicities, etc? I gave the center about 26 disk copies of all my PET/CT, MRI, and CT scans at my initial consultation to map my treatment plan. I don't know which ones were used, but it took 3 weeks.

All in all, it was an educational, visually appealing, and an amazing experience.
Posted By: neversmoke Re: Proton Therapy Treatment - 02-02-2014 04:22 PM

to answer your question, two of the members are lined up for IMRT treatment. One is (user name Fish, feb 6) and myself by end of feb.
So you can expect more responses to your questions in coming days regarding IMRT post experiences.

Hope fully, I am starting new topic on that soon.
Something like "Post IMRT treatment effects and experience"

Posted By: PaulB Re: Proton Therapy Treatment - 02-02-2014 07:48 PM
I think you posted on the wrong thread?
Posted By: PaulB Re: Proton Therapy Treatment - 02-13-2014 02:52 PM
I'm two weeks post treatment today, and everything is fine as they can be. I saw my oncologist on Tuesday, had a prior blood test, all which was in the usual range, although some are out of range as expected, like my hemoglobin dropped to 9.5 from 9.9, but still good enough not to need a blood transfusion or shot, whole CBC is low, although platelets are fine, creatinine 2.1, which has been my new base line for several years, and CEA 2.6 slightly high above the normal range. My doctor takes a CEA tumor marker test, which can be used to monitor head and neck cancer recurrence, but is not a sole indicator.

As far as energy, I have none. I have breathing distress standing for an extended period, my head gets heavy for my neck, which is in the minutes range, and could be partially from the low hemoglobin, treatment, surgeries, high, low blood sugar, but not really new after all the treatments, surgeries, which send you back to where you started. I may, when things settle down, see about PT or just go back to the gym, although I'll ask my doctors fir any restrictions, especially with the carotid artery removal, which reminds me I have to see the cardiologist to do the stress test I canceled.

Taste is still minimal, but for a while during treatment, I could eat spicy foods that was not possible for a few years. Not anymore, so that may be a sign my taste buds are going back to the old new normal lol. Teeth are getting worse, so there at foods I stay away from that are difficult to chew.

My neck is fine, the redness from treatment turned brown, with some skin peeling, nothing raw, probably from wearing a collared shirt rubbing against it, and still using Cetaphil, which I find less greasy, actually none, compared to Aquaphor, I can see a difference in this treatment vs. last year with the same 50Gy, which last year had minimal redness, no browning, skin peel, but is difficult to measure since I had more rads since, but they do say the entry wound with Protons is higher than IMRT. I have an appointment with the Radiation Oncologist in early March.

Posted By: Cheryld Re: Proton Therapy Treatment - 02-13-2014 03:05 PM
SO glad you are getting on... The hemoglobin is likely the cause of your lack of energy and the fact that your body has been through a lot. It also effects your breathing as you know. You've been through a lot. I know you have no energy and it's cold in NYC right now, but bundle up and try a little walk - it may help just a change of scenery and to stimulate your metabolism. Do you have someone you could walk with? Just a block even. It would help with O2 exchange. Though I suspect you may have to wait for your hem to get up a bit more to feel better. It does effect your healing so maybe talk to them about a transfusion? Also your diabetes issues do have bearing but you know all this.

I'n not surprised after having more rads your skin is having a bit more trouble this time around. You've cooked it a few times. Again I am sure none of this is new to you. Do they have you on iron?

Hopefully you heal and then get back to almost normal. Hugs.
Posted By: PaulB Re: Proton Therapy Treatment - 02-13-2014 04:33 PM
Thanks Cheryl. I'm like the lone ranger, I do everything alone lol. My hemoglobin may go lower based on past experience, current treatment, and my last transfusion was in May when it was 6, with transfusions usually lasting 5 months, longer than the shots last at three months I found, and as you probsbly know, RBC continiously die off, are replaced, and have a cell life between 90-120 days, so it's due, and with surgery, radiation in October lowered it also. My iron is ok, it's my hemoglobin that's low. As far as transfusions, it's a catch 22, injections of procrit, epogen, similar also, which run the risk of recurrence, speeding up cancer. I saw a study regarding HNC with transfusions, non transfusions, and risk of recurrence was 35% for those not receiving blood transfusions, and around 75% risk of recurrence for those that did. Then anemic patients have less survival rates, then those that aren't, plus being more radio resistant.
Posted By: Cheryld Re: Proton Therapy Treatment - 02-13-2014 09:34 PM
Yikes... !!!! Do you take b12?
Posted By: PaulB Re: Proton Therapy Treatment - 02-13-2014 11:13 PM
No. My B12 is in range now, and I get tested for that too. It's from the chemo I had in 2009, and the bone marrow suppression it caused, Chronic Kidney Disease from chemo, plus I have an inherited metabolic disorder, G6PD, whereby my RBC get destroyed faster then they can be replaced, called hemolysis, causing hemolytic anemia, from certain medications, foods, illnesses, stress, anything oxidative, even chemo, radiation, which can be mild to life threatening, which happened a few times.
Posted By: Cheryld Re: Proton Therapy Treatment - 02-15-2014 04:41 AM
We need to put you in a plastic bubble dude...
Posted By: Uptown Re: Proton Therapy Treatment - 02-18-2014 03:29 PM
Paul, don't forget the whole vagus issue. Your breathing is compromised and one very good thing is "stacked breathing" on an ongoing basis. Keep an eye on serum chloride, O2 sat and CO2. The chloride can indicate long term CO2 exchange issues from shallower breathing and O2 sat/CO2 from the lungs is the best place to measure that early, much like reticulocyte counts for (immature) red blood cell production from the marrow. Load up on grass fed lamb marrow or wagyu marrow for the CLA punch you need for healthy marrow. It's the tastiest source.

Maybe a baseline lung capacity study via spirometer would be in order? Breathing issues can creep up and the lungs and/or kidneys can easily be the casualties long term. Very little of this is understood beyond neuromuscular breathing specialists such as those used by ALS patients.

Your Friend,

Posted By: PaulB Re: Proton Therapy Treatment - 02-18-2014 11:19 PM
@ Cheryl, thankfully I don't get sick often, if at all, but when I do, I make up for lost time lol.

Good one Tonto Lol. I'll keep this in mind. This occurred before my last surgery too, but doesn't mean the vagus nerve wasn't effected by radiation. Probably a combination of factors, the septic shock too causing critical illness myopathy. I still have muscle loss, control in my legs. I need to add a few doctors to my specialist list, but already have 8, so in no rush.

I received Medicare statement, and Proton Therapy cost $7,151 a day, not including the $6,000 for the Mask, CT simulation. Glad I have no deductibles, co-pays or any out of pocket expenses, but do pay $600 a month for full Medicare coverage.
Posted By: Uptown Re: Proton Therapy Treatment - 02-19-2014 04:54 AM
I can give you my neuro-pulmonologist if you like, Paul. It seems to be a race to see if he retires before I no longer need him. I think my lungs are giving out now. Sure snuck up on me, just since November. Transplant may be one of the only options, just not for me. We talked about a trach and ventilator a year ago but I'm not sure that is even an option now. I sure liked it a lot better when it was just muscle weakness and I worked awful hard to regain incredible lung capacity and even built the diaphragm back to near complete capabilities.

Oh well, I guess we see what tomorrow brings. I still have a freezer full of ribs ready to smoke when spring finally gets here. O.o
Posted By: Cheryld Re: Proton Therapy Treatment - 02-19-2014 03:33 PM
Yoga? deep breathing exercises? push yourself. Will they give you a transplant with a cancer history? Hopefully. Hugs and feel better - both of you.

Paul Don't wait... do what you can. NOW.
Posted By: Uptown Re: Proton Therapy Treatment - 02-21-2014 05:17 AM
[quote=Cheryld]Yoga? deep breathing exercises? push yourself. Will they give you a transplant with a cancer history? Hopefully. Hugs and feel better - both of you.

Paul Don't wait... do what you can. NOW. [/quote]

Unfortunately for a small number of people, Cheryl, rads causes neuromuscular problems that include compromised breathing to the degree it literally destroys the lungs. It presents similar to COPD but if treated early like COPD it can cause sudden death. As it progresses, late stage COPD and the lung issues are the same. Transplants are not an option partly because of the cancer and partly because of issues with heart rate, blood pressure and breathing from vagus nerve/medulla oblongata issues.
Posted By: Uptown Re: Proton Therapy Treatment - 02-21-2014 05:19 AM
[quote=Lisacamp007]I am glad to hear NeutraSal is helping. [/quote]

Lisa, I was too lazy to go back and look who mentioned this because the subject contains so many pages. From the website, it's hard to determine exactly what it is prescribed from. It sounds pretty versatile and can help with several things.
Posted By: PaulB Re: Proton Therapy Treatment - 02-21-2014 02:02 PM
Thank you for responding Lisa. I was going to make a post in another section specifically about NeutraSal being I found it helpful, convienant, and read a few positive studies about its use.
Posted By: ChristineB Re: Proton Therapy Treatment - 02-21-2014 11:08 PM
The post about the product has been deleted.... this was nothing more than an attempt to sell this item to our members which is strictly against OCF rules.
Posted By: donfoo Re: Proton Therapy Treatment - 02-22-2014 04:52 AM
I have a big problem with posts just going AWOL especially if the post was offering information about something that helps with side effects of rads.

Can't you allow a single inline post? Maybe ask the OP to revise so it is less "selling" and more an info post or press release sort of thing.

Do whatever but don't just delete something that might actually help members suffer the ravages of rad treatment.

Posted By: ChristineB Re: Proton Therapy Treatment - 02-22-2014 04:55 AM
The post in question was written by a member who joined OCF for the sole purpose of promoting their product. The post contained no beneficial info and was removed.

As per OCF board rules, commercial posting is strictly prohibited. The rules are available at the bottom right of the page.
Posted By: donfoo Re: Proton Therapy Treatment - 02-22-2014 05:13 AM
Maybe the rules should be reviewed so members can at least be aware of new therapies and products. A cautionary note can be added what state of trial or testing or vetting by a credible entity should be included.

Just wiping the entire mention just seems like it servers the community less than the mention of it along with the caution message.

Posted By: Uptown Re: Proton Therapy Treatment - 02-22-2014 05:24 AM

You bring up an interesting point. How do we, as a community, offer things like this? I, for one, have found many opportunities for products that have been found to be successful for me and I get special deals or incentives but have yet had anyone here even make an attempt to take advantage. I know this because I even post promo codes at times to track and check back with suppliers to discover no one moves forward.

There has to be some more defined process that takes into consideration the rules of OCF, the advantages to members of the forum and yet still provides a potential benefit to survivors. I realize it is a fine line but Brian cannot be the sole person to try everything and make recommendations. For one, he doesn't have the time but, more importantly, the products in question may work for only a small group similar to medicines.

As a user of the forums, I have not had any of my recommendations deleted in 10 1/2 years. I fully understand having controls in place to prevent us from being advertisement driven and a willing pool of consumers for any company to just take advantage of.

We are a bunch of pretty intelligent people and between all of us we should be able to come up with something that works. After all, we are all in this together.
Posted By: PaulB Re: Proton Therapy Treatment - 02-22-2014 02:01 PM
I'm offended that a response was just deleted, wham bam mam style, from my thread, which has been ongoing for months, which I started about my Proton Therapy, and I did mention NeutraSal in one post after it was prescribed to me, and found it helpful. I was going to make a separate post anyway after seeing three members recently mention having difficulty with mucocitiis. By coincidence, a women, who is a distributor in Michigan for NeutraSal, joined, and responded to my post about NeutraSal, and I thanked her for a response, being the same few or three only respond to my posts anyway. I didn't get the feeling she was trying to sell anything, and was just adding to my post, anyway, whatever. I didn't get an apology or sorry for interrupting, a knock on the door first.....not even a congratulations on finishing my treatment or anything, saying more about why it was deleted, whom was involved, and by just reading it seemed like I was the violator. My thread was just hijacked, and there seems like a Gestapo style to its administration sometimes, and not supportive.

Don, I did made a separate thread in Adjunctive Therapy, since it warranted more attention. Actually, a NeutralSal thread was started on 6/2012 by lefty57, and davidcpa was the first to link the NeutraSal website shortly before that, but I figured it was too old to bring up that post again. Hopefully it will not be deleted.
Posted By: Uptown Re: Proton Therapy Treatment - 02-22-2014 03:18 PM
I can certainly understand your ticked Paul. No one wants to feel they were censored or their thread was. Christine has a much bigger job than anyone really appreciates. She has to make some judgement calls that are never going to be popular with everyone. Her role is so much bigger than the "meet and greet" it may appear. She has to be the bad guy or gal just because of her responsibilities. With the number of people here she could easily be a whole army and not get everything done.

Think of our lawmakers in our great nation. A law is passed and then challenged for decades, sometimes over turned. It is never popular by someone when enforced.

You handled this exactly how it should. You brought it back to a separate thread so others can see what it did for you and even the site to get some samples. That's probably all any of us can do when recommending things. Even if one person goes forward and tries it, your I out was valuable.

Thank you for never giving up but especially for always considering everyone here when you try to add to your toolbox! I, for one, have benefited many ways and many times from your suggestions.

Some don't understand this but what we suggest is NOT because we read something and it looked good. We recommend everything possible because of EXPERIENCE and the things that don't work are never mentioned.

Don't stop trying things and please don't stop recommending what works. We are in this together and the doctors aren't filling that need. The major cancer center here has done almost everything I have suggested in almost 11 years. I just found out they are now sending people to Livestrong at the Y and I've been on that for 3 years, taking literature and spreading it around. They support me on OCF walks and may even send someone to walk with me.

Remember, it's a process, not an event. Don't stop Paul. I hope I speak for everyone when I say we listen.

Posted By: PaulB Re: Proton Therapy Treatment - 02-22-2014 03:50 PM
Sorry, I don't buy it. There is no excuse for rudeness, and it can go both ways, if that's what it is. I had a number of posts deleted.
Posted By: Uptown Re: Proton Therapy Treatment - 02-22-2014 05:55 PM
If it was a wham, bam, THANK YOU, would it have been different for you Paul. For me, the respect thing really stands out because of my Japanese heritage. We lived so close to our neighbors back in the 50's I could touch their house through the window yet there was no such thing as a squabble.

Don't lose sight of the greatness here but we all really need to figure out how to coexist. We all have pretty much the same goals but much different deliveries.

I'm really sorry this happened in a way that leaves a bad taste in your mouth Paul AND Don. You guys have helped me through it when I felt the same way. I owe it to both of you to pay that back.
Posted By: Brian Hill Re: Proton Therapy Treatment - 02-23-2014 03:05 AM
I am out of town at a cancer conference and I was just asked to review this thread. I'm in the middle of the conference doing 12 hour days. So until I understand what transpired here, and why this thread is becoming insensitive I need everyone to quit posting about what was done, what OCF should and should not do. I have read this briefly, but don't have all the facts. IF anyone wants to PM me with their take on please do, I'll look at things Monday morning when I get back in town. In the meantime, change the subject that has spiraled this thing into a negative thread.
Posted By: Brian Hill Re: Proton Therapy Treatment - 02-23-2014 11:01 PM
OK, so with a direct ask of the moderators - I asked if any post OTHER THAN the salespersons post had been deleted, and that was a no. I have no reason to think otherwise as I know how even keeled Christine is. Regarding the removal of the salespersons post. These forum are for survivors, patients, family members and occasionally a medical dental professional (who we ask not to identify themselves as such for liability reasons). Unless OCF has OKed prior to any posting, what a company, university rep, researcher, media person, or anyone outside that group is going to put up, this forum is not for their input. Their posts will be taken down.

The participants of the forum are encouraged to speak from their personal experience. This is a different thing. It also infers that their comments are not an absolute, but their singular experience, which may or may not apply to a biologically different tumor, etiology, or human being. They may be enthusiastic about the outcome for themselves, and others may have anecdotally similar outcomes, but they are not versed on what is happening with that drug, technology, etc., what interactions it has with other protocols, what populations or etiologies is does not work equally well for, and the list goes on. Therefore, while they certainly can make others aware of something that they found useful, once they become advocates for it, their role has changed. They are advocating for something that they do not have all the information about as I just stated. This is a razor's edge. If it worked for you it is appropriate to say so, and suggest others talk to their treating professionals about it, as those patients and their treatment team will have all the information necessary to decide that it is or is not appropriate for them, none of us do. This is how we learn from each other.

We take down and ban posters EVERY WEEK that have an agenda to promote something. It can be as crazy as you can imagine, or it can be a rep from a legitimate dental or medical company. We don't let salespeople, who have an unknown basis of knowledge, post opinions, suggestions, or comment on these forums. That is a hard line in the sand. They are not someone that has been through it, they are not doctors, and while they may be well versed on their product, they are not experts.

I have just spent the last four days with researchers at the Head and Neck Cancer Symposium in Phoenix. There was a ton of new information presented - and some things we thought we knew about H&N cancers, HPV, and certain drugs, we actually had wrong. This is the nature of medicine and research. It is ever evolving. This is one of 9 cancer conferences I will attend or speak at this year. This does not make me an expert. I will also every week be interfacing with researchers that are funded by your donations, and I will be interacting on 7 oral cancer task forces that I belong to from the government to professional medical dental societies. What it makes me is someone that understands completely the long road to know something for certain, and how many ways there are to get it wrong. This boils down to one idea. These forums are read for content. We try to correct things that are scientifically inaccurate, and remove things that potentially are harmful. To do less would be irresponsible. Again, I am not an expert, but at the end of the day I am responsible for defining what has efficacy and we will discuss (with the backing of OCF's Science Board) or what topics and information is too thin scientifically to be appropriate for us here. You can see how seldom I intervene in the discussions. That is because we have a group of people that appreciate the nature of these boards, and understand that they belong to a group in which scientific rigor is important, and they like that. They also behave accordingly.

IF something is taken down, unlike if a post is edited, there is no mechanism to leave behind the comment that that has taken place, the post is just gone. It takes many hours a day to monitor these boards, greet every new comer, edit, answer questions, and wear a black hat occasionally. My personal policy for this I have asked Christine and any other monitors to adhere to. The first rule of which is regardless of being right or wrong, posters who are rude get their posts taken down. Period. Civility reigns here. Disagreements like the PEG wars, (more on that later since some interesting new data has just emerged) are fought here, without name calling, snide remarks, or passive aggressive behaviors. I usually have had some PM time with someone that has become a problem tone-wise or information-wise, and there are several posters here that know this to be true, but if they do not listen to reason, the bottom line is that these boards are not a democracy. Repeat offenders, your posts will be deleted. There is too much important work going on to have a multiple posts back and forth with someone for the umpteenth time arguing about if something was stepping out of bounds or not. Luckily this whole thing seldom comes up, and with this group of supportive and knowledgable people, it is a rare occurrence.

Anyone who would like to have it be a free forum, please note that there are now three on FB, (which will catalogue and sell everything they learn about you to anyone willing to pay for it) one of which was run by a friend of mine Mike, that have imploded because there was no control of what the content of the room and forum was. Mike finally just walked away from his group of several hundred people, fed up with the bickering and how much work it was to keep things on track. A couple others have sprouted up, but they are in arguments about science, attitude, appropriateness of what is being put up and so much more already. When you are hiding behind a screen name on an unmoderated forum, I do not believe that it is a healthy environment, and it sometimes brings out the worst in people. If you like that confrontational environment, please feel free to join those groups. There are other boards from other organizations you may choose to join as well, but we have watched them ouselves, and had others tell us how poorly they are monitored for correctness of information being put out. This is a difficult task as you have to be on top of what the current information is, you have to know how to dissect a published paper to decide if it is biased, or so much junk science paid for by a commercial company in the background, and much more. Our posters here are really good at sifting out the marginal stuff, and we don't see so much of that. Kudos to those of you that are the backbone of good info, you know who you are without my pointing to you.

So there you have it. Long winded as usual. I would hate to loose any posters over these rules, but we may. Bottom line the foundation has rules because they are necessary. We tried it without so many restrictions in the beginning, and I was not proud of what we had. It has taken 14 years of evolution to get to the rules that we have, and for the most part they work. They will not be an environment that everyone can live in. But no person coming here will be spoken to in an inappropriate manner, no sales person will post on these boards, no one will try to persuade you to buy anything, no privacy that we can control will be breeched. We will all do our best to help those who need it at the level that we can even if it is just moral support; which while I have spoken a great deal about science, is vitally important.

I would like to thank the people that watched this threads spiral downward and took the time to PM me with their candid observations.
Posted By: Uptown Re: Proton Therapy Treatment - 02-24-2014 03:54 AM
We have revisited all this at least a few times over the decade I've been here and you know why OCF gets my support, Brian, and that's the science behind everything. That is why I send people here. I appreciate you taking the time to reiterate all this and I'm looking forward to hearing new information on the PEG debate, although I've steered clear of those wars for a long time. I think that discussion is the only one I have not been a part of.
Posted By: wlildebill Re: Proton Therapy Treatment - 02-24-2014 09:56 PM
Brian, fully support Christine and your handling of this " deletion issue".
Look forward to your report on new findings about H & N cancers and HPV.
Posted By: donfoo Re: Proton Therapy Treatment - 02-25-2014 04:41 AM
Thanks for taking the time to reply and it demonstrates your commitment to keeping OCF a forum of the highest caliber. As you state, there is a tremendous amount of effort expended behind the scene to ensure the forum remains a viable and credible place to learn and exchange ideas about oral cancer. Keep up the great work.

Ditto on any information you have about PEG usage during treatment and short term post.

Posted By: PaulB Re: Proton Therapy Treatment - 03-06-2014 07:23 PM
I had several follow-ups with my RO, ENT, and Proton Radiologist the past week or so. The first two doctors, who did my carotid artery resection, IORT, were happy to see me post treatment, and still call me miracle man, I guess from not suffering a stroke or death from the several surgeries, procedures, and radiation, and be walking around seemingly unscathed. I guess I'll have to live up to their expectations, and is difficult to complain of anything minor, but my ENT asked about the coughing, change of voice, and said we can deal with that after the scan, which is the collagen injection to the vocal cord. All were happy with my neck healing, and scheduled my three month post treatment PET/CT on May1st, and will see them soon after to go over the results. Knowing myself, I'll probably go in the next day to get the written report, and CD copy of the scan from the outside radiology center. My RO asked about my teeth, and said I was waiting to do HBOT, before the extractions, and said I'll have to wait a few more months for that...meaning after a clear scan.

My taste came back fully two weeks ago, and would say it is on level what it was prior to this last Chemoradiation, meaning it's not great, but doable, and working on my food bucket list, which can be surprising to some even with my tooth loss, and severe trismus, which is about a 12mm mouth opening.

Tomorrow I'll have blood test, and see my MO next week. I bought a wrist BP cuff and see my pressure drops when standing, Orthrostatic Hypotension. Yesterday, it was 115/80, 90 pulse rate while sitting, and upon standing, it dropped to 80/50, 101 pulse rate. This has been gong on for a while, so I feel, and was thinking my bp increases, but instead it drops, and heart rate goes up, even before my last treatment, surgeries, and could be related to dehydration, anemia, medications, combination, and so on, but will mention it to my MO next week, and cardiologist, when I get a chance to see him. I still have to follow-up with my PCP, nephrologist, and Opthomologist since I haven't seen them in several months, but in no rush either to do that.

Attended a SPOHNC meeting, and the guest speaker was a dentist who is a tonsil cancer survivor having gone through the same misdiagnosis as many here, with antibiotics prescription, and spoke about oral care, answered questions. A few things I highlighted, among many things discussed, was recommendation for:

Soft or extra soft tooth brush. brush 3 minutes, 3 times per day gently without a lot of pressure. If you see the bristles start to spread you're brushing too hard.

Fluoride toothpaste, gels are helpful to prevent cavities, and believe Prevident 5000 was mentioned. Using a high pH (9.5) water to rinse with.

Floss, gently flossing 2-3 times per day, after every meal is ideal.

Fluoride Trays, best used immediately before bedtime, and after brushing, flossing. Trays should be left in for 10 minutes being careful not to swallow. You may expectorants any excess saliva. Thoroughly clean and dry try's. Do not eat, rinse or drink after using the trays, and is better to go straight to sleep.

Physical Therapy, if you have bern given muscle or jaw exercises or massage, or Therabite has been prescribed, try to comply.

Things to Avoid, alcohol. Including mouthwashes, caffeinated beverages, acidic, spicy or salty foods, chips, and other carbohydrates that might stick to your teeth.

See you dentist 3-4 times a year for examination, cleaning, and consider fluoride varnish.

Posted By: donfoo Re: Proton Therapy Treatment - 03-07-2014 12:31 AM
Glad to get the update. Been wondering why you been laying low. As to all the dental maintenance stuff. I guess I'm just going to get them all yanked and get back a half hour every day to do something else. Doing all that is just way past where I can go - giving up coffee??? Really???
Posted By: PaulB Re: Proton Therapy Treatment - 03-07-2014 01:29 AM
I'm not giving up coffee either. I have a Kuerig, a Nespresso, and a stove top espresso maker! That's one thing I can taste. Remember the report that says coffee may prevent oral cancer by 50% lol.
Posted By: Ambra Re: Proton Therapy Treatment - 03-07-2014 01:35 AM
Congratulations of finishing the treatment PaulB! And thank you for the dental updates, very helpful. Best of luck with everything!
Posted By: Waldeau Re: Proton Therapy Treatment - 03-07-2014 02:11 AM
Paul, You've convinced me - a toothbrush goes to work with me form now on.
Posted By: PaulB Re: Proton Therapy Treatment - 03-07-2014 03:26 AM
Thank you Ambra, and for taking the time to write even with your own troubles, surgey, and hope you feel better. Waldeau, I used all the Biotene products, but was not given prescription fluoride, dental trays by a local dentist with my radiation in 2011, I should have known better, maybe there are other contributng factors, but I need all my teeth extracted now, three years after radiation to the mouth, plus having to do HBOT again, but I'll prefer that over a recurrence, if only I can choose so.
Posted By: tamvonk Re: Proton Therapy Treatment - 03-07-2014 03:48 AM
Glad to hear all is going well Paul.
Take care.
Posted By: Mamacita Re: Proton Therapy Treatment - 03-07-2014 05:38 AM
Paul, you ARE the miracle man. Thank you for posting the dental info; this is a topic my medical team shortchanges a bit. Fingers crossed that you have a squeaky clean scan in May!

Posted By: Uptown Re: Proton Therapy Treatment - 03-07-2014 05:51 AM
Good news, Paul. I hope your cooking time is ramping up well. I'm glad your taste is better.

I never got the trays and all in all, dental seems to be the least of my concerns. I do use a Sonicare as was recommended years ago. It keeps me from brushing hard and helps keep the plaque buildup around the gums. I had 8 back teeth crowned at the first signs of problems around year 4.

You are doing remarkably well, given all you just went through, much less what you had already made it through. I would probably lay down and die if it weren't for people like you with a never ending drive to survive! Keep giving me something to shoot for, my friend. If my docs even suggest giving up my daily lattes, there would be a Texas Death Match. Espresso helps ward off prostate cancer, even. I saw that on the news plus I now have you as additional proof, if I may quote you. Plus bike riding may increase the risk of prostate cancer. o.O

Posted By: PaulB Re: Proton Therapy Treatment - 03-09-2014 11:03 PM
Thank you Tammy, Lynn and Tonto. Spoke too soon, have an abscess, infection in my mouth again probably from eating abrasive foods...I try everything lol. Taking antibiotics, and being more diligent in mouth rinsing. This soon shall pass, but I see my oncologist on Tuesday.
Posted By: Mamacita Re: Proton Therapy Treatment - 03-11-2014 05:55 PM
Ouch Paul, sorry to hear about the painful setback! I had smiled to think of you returning to your free-tasting foodie ways...You will get there, my friend. I sure hope you mend soon.
Posted By: PaulB Re: Proton Therapy Treatment - 03-11-2014 09:20 PM
Thank you Mamacita. Not much holds me back from food once I got my food game on lol. I made seafood paella yesterday, and bought some donuts to wolf down with some coffee tomorrow. My oncologist didn't want to prescribe any more antibiotics since the abcesses subsided, I can understand that after having C-Diff in 2010, and to continue rinsing several times a day with salted warm water. She gave me the ok to start gong to the gym (YMCA), which sounds more than what I will do to start off with, and to start some walking outside. Spring gives me energy anyway.
Posted By: PaulB Re: Proton Therapy Treatment - 03-12-2014 01:31 PM
I never did go to my graduation party, never will lol, since I don't like celebrations for myself, but I am going to my friend's next week, who I met during our treatments. His is prostrate cancer, and had to go through 44 treatments, ouch! They have to drink at least 16 ounces of water, if not more, right before rads, and some other maneuvers. I guess sometimes we are happy with our own treatments, side effects, then someone else's, and he felt the same for me lol.

Anyway, I mentioned them giving the ProCure Challenge Coin, instead of ringing the bell. On the last day they play the theme to Rocky, "Gonna Fly Now" to strut your stuff, and then present you with your graduation certificate, Challenge Coin, but take it back if you're gong to the graduation luncheon. Here is the history of the challenge coin since many are unfamiliar with it, including myself, as presented to us, which I now carry in my pocket.

"The history of the Challenge Coin dates back to World War I when American Volunteers filled up the newly formed flying squadrons. Some of these volunteers came from wealthy families, mostly students from Ivy League schools. In one of the squadrons, a wealthy lieutenant ordered emblems I solid bronze and conferred them to his own unit. One of the pilots placed the medallion in a tiny leather pouch and wore it around his neck.

Just a couple of hours after the medallions were conferred; ground fire seriously damaged the aircraft of the pilot. He was compelled to set down just behind enemy lines and was captured by one of the German pilots. Placed in a prisoner-of-war camps, all of his personal belongings and identified were taken. He was left only a small pouch that was hanging around his neck. Shortly he was transferred to an occupied French town a few kilometers away from the front line. Taking advantage of the situation, he managed escape, without his personal effects and identification.

He succeeded to escape the Germans by disquieting himself in civilian clothing at the front line. Although it was easy for him to elude the patrols, the difficulty was in crossing the no-man's island, but he eventually succeeded. He then made his way to a French outpost.

Unfortunately during that time. German Soldiers dressed in civilian clothes had been sabotaging the French sector. The French soldiers, believing the American to be one of these German soldiers, prepared to execute him. The only thing that he had was the pouch that contained the medallion.

He showed the medallion to them and one of the French captors recognized the insignia. After long deliberation, they released him. Soon the pilot was back with his squadron and the medallion became a tradition. It was then that the members of the squadron carried the medallion with them anywhere they went, thus giving birth to the Challenge Coins.

When it came time for the leaders at ProCure to think about something we might give patients at the completion of treatment, the decision was made to give a Challenge Coin. There is no great story behind why we chose this. Our patients are living the great story. The coin represents our unity and passion--both patients and ProCure team members.

As you accept this coin, as you take hold of it and keep it with you daily, may it be a reminder. It is a challenge to ourselves and those we serve: the patient, the family, and each other. May the words written on the coin act as a reminder of the unique journey which brought you to this moment: for it is your inspiration, your strength, your spirit and your dignity which encourage hope to blossom when it is shared."

Posted By: Mamacita Re: Proton Therapy Treatment - 03-12-2014 02:14 PM
NYC does know how to celebrate! I would have loved the Rocky music, challenge coin, all of it. My caregiver even more so.

I did get to ring a wind chime that hangs in an alcove near the exit to the lobby, but no one is with you and there's no hype. Later, they sent me a "Challenge Invoice" which will indeed be around my neck for some time to come smile

Paul, until I read about your events I was content with mine!

No longer feel guilty for all the kleenex I used there.

Posted By: Mamacita Re: Proton Therapy Treatment - 03-12-2014 02:20 PM
p.s. I am wondering what's served at the Graduation lunch. Picturing buffet with Jevity, jello, mashed, yogurt, ice cream for dessert.
Posted By: PaulB Re: Proton Therapy Treatment - 03-12-2014 02:30 PM
Lol...It's from an Italian restaurant. Variety of sandwiches from 6' heroes, meatballs, chicken Parmesan, pasta, salads, cake, cookies, soda, water. This treatmnt would even be harder to swallow costing over $7,000 a day.
Posted By: Mamacita Re: Proton Therapy Treatment - 03-12-2014 02:36 PM
Fabulous! I need to get a purse-size blender for such occassions.
Posted By: PaulB Re: Proton Therapy Treatment - 04-29-2014 04:09 PM
I have my 3 month post treatment PET/CT scan on Thursday. I have no scanxiety and not thinking much about it other than during this post, and need to follow the pre-testing diet, fast, and activity. I have a follow-up with my RO on Monday, and ENT on Tuesday to discuss the results, but I'm going to get a copy of the scan report on Friday by going to the testing center. They always say we sent it to your doctor, but I tell them I'm seeing someone else lol, and get a copy of the report, and CD disk. I have no patience once the test is done, and want to be prepared for the doctor meetings, do my own research beforehand, if needed.

Anyway, not saying it will be, but the majority of post treatment scans are clear, and all my previous ones were, but what followed wasn't. Hopefully history repeats itself for the post treatment scan, and Proton Therapy lives up to its expectations. Then I'll be free for 6 months until the next scan, but if clear, I still need to have my teeth removed, do HBOT once again, due to the radiation damage to the teeth. HBOT couldn't be done with active cancer, so this has been delayed for some time.

Other than that I'm doing fine with recovery. I still have many side effects from the many treatments and surgeries that I had and just deal with being my main concern has been cancer treatment, recovery, Dr follow-ups, testing, and most everything else took a back seat.

My doctor visit last week, and another yesterday showed my weight increased from 170 to 180, my blood work improved or is stable, although I still have chronic anemia, hemaglobin is 10.9 the best in a while, normal is between 13-18 for males, have CKD and creatine is stable at 2.2, still high, but lower that it was after the kidney stone, but that's my new baseline. Ferritin levels are high 1300, was higher, and doctor said it is from inflammation from disease processes, as I thought.
Posted By: tamvonk Re: Proton Therapy Treatment - 04-29-2014 06:18 PM
Thinking of you Paul. Positive thoughts for clear scan results.
Posted By: Bart Re: Proton Therapy Treatment - 04-29-2014 07:17 PM
I'm with Tammy Paul, thinking of you and sending positive thoughts for clear scan results.

I have my own scan on the 12th and will get the news on the13th (from my MO and the 14th from my RO; everybody wants in on the fun.)

I'm fairly sure that I'll be clean, only question is how long before the music starts up again and the dance resumes. And if not, meh. This remains an adventure of exploration and it keeps me from getting bored.

That's not a problem at all, every day I check the obits, and so far so good, I haven't seen any with my name on them yet. Woot!
Posted By: PaulB Re: Proton Therapy Treatment - 04-29-2014 07:30 PM
Thank you Tammy and Bart. It will be ok, for now lol, and Bart is a true inspiration having somewhat of parallel outcome as myself, only his are distant metastases while mine are local regional recurrences. Good luck with your scan, and results also
Posted By: gmcraft Re: Proton Therapy Treatment - 04-29-2014 08:42 PM
Paul and Bart, wishing the best outcomes for both of you. Your courage and persistence is such an inspiration.
Posted By: PaulB Re: Proton Therapy Treatment - 04-29-2014 09:14 PM
Thank you Glora!
Posted By: Uptown Re: Proton Therapy Treatment - 04-30-2014 02:36 AM
Like a BOSS, Paul!

Beat wishes on your scan Thursday.

Best wishes to you, too, Bart!
Posted By: Bart Re: Proton Therapy Treatment - 04-30-2014 02:39 AM
My thanks to you both, Paul and Gloria!

I truly appreciate the kind words, and Paul, they have special meaning from you, my incredibly durable friend!
Posted By: PaulB Re: Proton Therapy Treatment - 04-30-2014 12:59 PM
Thanks Uptown!
Posted By: Mary40000 Re: Proton Therapy Treatment - 04-30-2014 11:04 PM
Paul, All my best wishes for clean and clear on Thursday!!

Posted By: PaulB Re: Proton Therapy Treatment - 05-01-2014 12:51 AM
Thnk you Mary. Doing my no carb diet. Each center is different, This one says no carbs after 7PM, others say low carbs 24 hrs or no carbs. 7PM sounds better! My test is not until 11:30AM.
Posted By: PaulB Re: Proton Therapy Treatment - 05-03-2014 12:56 PM
I went all the way into Manhattan yesterday to pick up my PET/CT report on the sneak, and left or dropped it in a coffee shop. Anyway, I read it before that, and looks good with my interpretation, no new metastases, other than the sinutis disease, which I have, and the uptake in the left lung, which they attribute to being pneumonia, which I thought I may have also due to the chronic coughing, mucus, possible aspirating, and previously having pneumonia after surgery in October. I'll see my Radiation Onclogist on Monday, ENT on Tuesday, and had faxed a copy to my oncologist at another location, and reserve further findings, results, until then.
Posted By: gmcraft Re: Proton Therapy Treatment - 05-03-2014 05:44 PM
Good thing PaulB that you have all kinds of backup.
Posted By: PaulB Re: Proton Therapy Treatment - 05-03-2014 06:48 PM
I always try to have a plan B lol. The coffee shop is keeping it for me on Monday, but it wouldn't be a problem getting another copy, plus I faxed it locally. I'm glad I don't need to research anything over the weekend since it was pretty basic.
Posted By: donfoo Re: Proton Therapy Treatment - 05-04-2014 02:14 AM
Good to hear the good news! I trust your ability to read them reports is pretty good by now. Don
Posted By: PaulB Re: Proton Therapy Treatment - 05-04-2014 01:11 PM
Thanks Don. I do what the doctors do, just go to the end of the report for the conclusion lol. The recently treated area with metastases was obscured by inflammation for any detection, so I don't know if they will want another CT or MRI with my cancer background, but I can't do CT contrast unless I'm prepared by IV flushing before/after due to my kidneys, as my Nephrologist says, if necessary, otherwise don't do contrast or they may just follow-up in 6 months with another scan. The pneumonia in the lungs may require a CT scan, a sputum test, antibiotics orally, hopefully, or by IV, which may be administered in the hospital then. I'll probably have to see my local oncologist, who I see anyway next week, and or my primary doctor. I'm always thinking lol.

Posted By: donfoo Re: Proton Therapy Treatment - 05-04-2014 08:28 PM
If only they had a frequent doctor club - you'd have enough points to get to the front of the line going on that space trip. lol
Posted By: PaulB Re: Proton Therapy Treatment - 05-04-2014 08:58 PM
I have 8 or more specialists, but really need to add two more. I have a local team, and ones in the big city at the ready. My hands got cramped writing them all holiday cards lol.
Posted By: AndrewL Re: Proton Therapy Treatment - 05-05-2014 12:52 AM
Good news to hear Paul!
Posted By: PaulB Re: Proton Therapy Treatment - 05-05-2014 12:57 AM
Thanks Andrew!
Posted By: ChristineB Re: Proton Therapy Treatment - 05-05-2014 01:58 AM
Paul, I have been reading your posts thru out your battle. Your resiliency is amazing! Congrats on the good news with your scans! Hopefully your recovery will be an easy road for you. After everything you have already endured, you deserve to have an easy time.

Best wishes with your upcoming appointments, hoping its nothing but more good news at each one.
Posted By: PaulB Re: Proton Therapy Treatment - 05-05-2014 03:04 AM
Thank you Christine, I appreciate the positive thoughts.
Posted By: Mary40000 Re: Proton Therapy Treatment - 05-05-2014 10:09 PM
Hooray. Great to see NED at the end of your signature!!

Posted By: PaulB Re: Proton Therapy Treatment - 05-05-2014 10:52 PM
Thank you Mary. I saw my radiation oncologist today who gave me the official news. On a sad note, my doctor is leaving the hospital in July, I said, "I'm coming with you", but he is going out of state, so I won't be seeing him after July, but have an appointment then, and is going to give me his contact numbers incase I need anything. A real shocker!
Posted By: tamvonk Re: Proton Therapy Treatment - 05-06-2014 02:33 AM
Fabulous news on the NED Paul. It was all worth the effort and angst.
I'm sure you will develop a good rapport with the new Dr, but I know it's disconcerting. I'm sure you will bring him up to speed.
Posted By: PaulB Re: Proton Therapy Treatment - 05-06-2014 02:55 AM
Thanks Tammy. I have the radiation oncologist, same hospital system, who did my Proton therapy who will probably take over my care. I see him in a few weeks as follow-up also.
Posted By: Cheryld Re: Proton Therapy Treatment - 05-06-2014 06:53 PM
YAY~ so glad you are doing well... now keep it up!!! ;o)
Posted By: PaulB Re: Proton Therapy Treatment - 05-07-2014 11:53 AM
Thank you Cheryl!
Posted By: ChristineB Re: Proton Therapy Treatment - 05-07-2014 12:18 PM
Congrats Paul on getting the official word of NED!!! Hopefully this will be the end to all the treatments. Best wishes for a happy, healthy future smile

Posted By: gmcraft Re: Proton Therapy Treatment - 05-07-2014 12:42 PM
Congratulations, Paul, such good news!!!!!!!
Posted By: PaulB Re: Proton Therapy Treatment - 05-07-2014 12:58 PM
Thank you Christine and Gloria! Now I hear my ENT, in addition to my RO, is leaving too. Maybe I'll be switching hospitals again. I'll find out in July on follow-up, further details.
Posted By: Uptown Re: Proton Therapy Treatment - 05-07-2014 01:42 PM
Great official news, Paul! I hate your doctors are leaving but it's yet more proof life is moving on. Congratulations on some good news.
Posted By: PaulB Re: Proton Therapy Treatment - 05-07-2014 05:16 PM
Thanks Uptown!
Posted By: PaulB Re: Proton Therapy Treatment - 05-29-2014 04:20 PM
Study suggests Proton Therapy may be effective, less toxic treatment option for head and neck cancer.
Posted By: tamvonk Re: Proton Therapy Treatment - 05-30-2014 02:54 AM
A good read. Thanks Paul.
Posted By: donfoo Re: Proton Therapy Treatment - 05-30-2014 11:01 PM
[quote]Study suggests Proton Therapy may be effective, less toxic treatment option for head and neck cancer.[/quote]Ditto that. Given the benefit of PT is to more precisely target the rads to the tumor, it makes sense it would be less toxic as less rads are hitting unintended areas.
Posted By: PaulB Re: Proton Therapy Treatment - 06-23-2014 05:34 PM
I've been following up my doctors since May, probably around 10 visits lol, but it seems after a few days of visiting is when you develop problems that could have been addressed by one of them.

Currently, I'm dealing with chronic tooth, gum infection, abscesses. I saw my oral surgeon who prescribed a different antibiotic than PCP, who also prescribed Motrin 800, but wouldn't give me any oxy meds for the pain, so he is on my hit list to change! The oral surgeon, who I've been seeing for the chronic infections since last year, was waiting for me to come back after completing my recent treatment, which was in January, and was further advised to wait by my RO's for healing, clear scan, 6 months to do anything. I was to enjoy a few weeks break, minus other dr appoints, but my mouth, gum was irritated eating food, and developed an abscess in the chin, jaw area, so had to deal with that.

The oral surgeon is afraid to do anything now with all the radiation I had. He said whatever is done won't be easy, and needs to check with my RO, so have to go back on June 30th, and need to get rid of the infection first with the antibiotics. The good thing is the panoramic x-ray shows no change to my jaw since last October. My last visit was the first time I was asked if I had Medicaid, which I don't, and have Medicare, and was told it doesn't cover extractions, which I knew, but thought I was under a special program, never seen any charge, but the hospital was recently taken over by another, so they probably want a profit. The oral surgeon said I can't stay like this, and will, I guess we, have to find a way.

The teeth issues were somewhat under control, but then my shoulder decided to act up and be a bigger problem. My oncologist wants me to see a neurologist, and could make the appointment for July 30th, the earliest, and didn't ask or any pain meds, only ambian since I thought I would get something appropriate from the neurologist. My lyrica prescription ran out too.

My previously prescribed physical therapy for all around strength never happened, canceled 3x due tooth pain, nausea from the meds. I finally scheduled an appointment on Thursday, and can add the shoulder problem to the list.

I don't know what initiated the problem, surgery, treatments, injury or combination. It could be from the radical neck dissection, whereby the left neck muscle was removed, another surgery with a left pec flap, the carotid artery removal, and all the radiation, one which was in level V on the brachial plexus nerve, and often bounce off/hit the wall, door frames from lack of vision in the left eye, and unbalance from neuropathy.

I have noticed more numbness to my hand, arm, in addition to the already present neuropathy since 2009. I have limited arm raising ability from surgery, but never pain, and movement is even more limited now, and feels like pulling from my back, shoulder, and think the trapezoid atrophied. If I do raise my arm. I kind of swing it and or use my right arm to raise it like when I shower, and using a heating pad and tiger balm, which somewhat helps.

I may see pain management again for the neuropathy, teeth issues, and shoulder pain being many doctors are afraid to prescribe oxycodone or similar, which is a problem here in nyc with addiction, and black market selling. In fact, where I live the doctors have to check a database, I guess input too, to tract your controlled substance prescriptions records. It's ironic when you can get anything you want in this city, and never wanted any, and now I can't even get pain medications when you need them or it being a hassle. I can go to some of my other doctors, but I've just seem them, and no controlled substance can be telephoned in or by computer. You need a written prescription, and is only prescribed for 30 days, no refills. I guess it's the same all over.

To be continued lol. Maybe I'll post again in after treatment in the future.

Posted By: Bart Re: Proton Therapy Treatment - 06-23-2014 06:13 PM
PaulB, you are one tough cookie, that's for damn sure! I salute you, my friend!

You set and example of class and strength for all of us to benefit from; and I admire you for it!
Posted By: PaulB Re: Proton Therapy Treatment - 06-23-2014 06:31 PM
Thanks Bart. For almost 35 years, all my jobs invloved protecting people. Now I can't even protect myself lol. I met lots of celebrities, public officials, dignitaries, and most Presidents, mostly old school, under various circumstances, not that we were buddy, buddy lol, well, Christine Brinkley did kiss me twice, and Jerry Lewis once did in his comical way, Frank Sinatra knew me by name, and had a cocktail with Glen Cambell, to name a few.

I write for the record in hopes it will help someone. I meant to add that my eating has been compromised, and my oncologist wants me to use three cans of protein a day through my tube, there was a reason I kept it lol, in addition too, my oral intake which is mostly carbs, but I'm not inept in the kitchen, and can whip up lots of things. I just don't have the energy, and some medications make you dizzy, which you probsbly know. I cook sitting in my walker, which I no longer need, unless I know I would need to stand for a long duration, and that wont't happen!

Speaking of dizzy, there is a recent report that Taxotere can cause intoxication, so thier advising to use caution in some. Got side tracked here lol.

Part of the problem is the Orthrostatic Hypotension that I self diagnosed with my BP monitor. This has been ongoing for a while feeling faint, dizzy, out of breath upon standing , and I thought it was High BP. Sometimes it is, but when I stand from sitting, it drops more than 20. Most, if not all, doctor offices check your BP sitting, so mine was never seemed bad. I never made it back to the cardiologist to complete the stress test, but will have to review that soon. I guess do what I can do now, and hopefully will help later on.
Posted By: donfoo Re: Proton Therapy Treatment - 06-24-2014 05:12 AM
[quote] I can go to some of my other doctors, but I've just seem them, and no controlled substance can be telephoned in or by computer. You need a written prescription, and is only prescribed for 30 days, no refills. I guess it's the same all over. [/quote]Schedule II drugs are under lock and key out here too. They only fill with a hard copy script that is written from a book with special anti-fraud features.

Glad to see you post again. Seemed like you went on vacation or something. lol

Posted By: PaulB Re: Proton Therapy Treatment - 06-24-2014 01:31 PM
Thanks Don. I wish I was on vacation. My iPad kept resetting my passwords, and I didn't know it off hand to log on, plus been a little under the weather with the pain, medications for the past few weeks. I turned down scripts for pain meds previously after several surgeries being I had some left over at home, if needed, since I only take them as necessary. Won't do that again.
Posted By: tamvonk Re: Proton Therapy Treatment - 06-25-2014 01:29 AM
Paul, I am really sorry to hear that you are having pain issues that are not resolved. I know you have been through a lot. I hope that there is also joy in your life and that one of your docs prescribes for you soonest.
Take care,
Posted By: PaulB Re: Proton Therapy Treatment - 06-25-2014 01:40 AM
Thanks Tammy. I have an appointment to see the Pain Management and Palliative Care doctor next Tuesday. I've seen her last year, and was helpful for the neuropathy.
Posted By: PaulB Re: Proton Therapy Treatment - 07-17-2014 10:17 PM
I haven't been able to update my thread since June 23rd, but have responded to many posts, which is sometimes easier than collecting thoughts about myself. I probably had 8 doctor visits since, and a lot has happened in the medical front, but not social, so I'll stick to that.

Finally, I went to PT last month, after canceling 3x, for an evaluation, a little exercise, and was scheduled for bi-weekly visits, but haven't been back since due other appointments and issues.

Seen the Oral/Maxillafacial Surgeon three times. Still has me on Augmenton 875mg antibiotics (sp), and told me to stay on them until he says to stop! I had the abscess in my mouth/jaw area again, and had to see him a week later, and discussed the HBOT, and had to speak with my RO and ENT. Finally, with the cancer being clear, he called my local hospital to set up an HBOT consultation. I'll do the Marx Protocol, and have my teeth extracted, after 20 dives, and 10 after.

Had to see my ENT twice. As soon as my abscess was resolving my left shoulder/arm got worse with severe pain in the deltoids, traps had atrophied, more arm, hand neuropathy, and head becomes heavy after a while, and starts dropping, "Head Drop" like, but not as bad. He ordered a MRI to rule out cancer, and heard him say he suspects brachial Plexopathy (neuropathy). The MRI came back clear of cancer, although they couldn't do any contrast due to my low GFR, high creatinine. The same with a CT scan. My ENT is leaving, and invited me to folow-up with him at other top CCC after he leaves. We got busy talking other things, one being to a fellow saying I'm one of the few prople in the world walking around with no carotid artery! i was so happy for the NED, I forgot to discuss my shoulder/arm issue. This is actually my first scan, besides 3 month post Treatment scans, that I am clear of cancer in 5 years, so is monumental to me.

Saw pain/palliative management doctor the same day. She had no problem writing a prescription for oxycodone, lyrica and Voltaren Gel, an antiiflammatory. Problem was having it filled. Three pharmacies in manhattan didn't have, couldn't place an order or didn't carry the oxycodone. The same with about 7 local pharmacists. Went back to pain Management, so she wrote a new prescription for Percocet, Gabaoentin, figuring it would be easier. Wrong, no one wants to fill Percocet either. Gabapentin was filled instead of Lyrica. I met an old friend who made a phone a phone call to see who fills these prescriptions, and finally found one! The medicine helps relive the pain, nut makes me nauseas,and vomit, and usual stuff that goes with it. Taking colace, drinking more water, and the e-bag lol. I may have to take anti nausea meds once I'll be on this long term.

I saw my RO for the last time the other day. He is leaving too, but to another state. He is sending me his contact info if ever needed, and told me to follow-up with my ENT. My Proton RO will take over my case, but there is no one like him, who saved my life when others didn't want to treat me three years ago.

Met with the Hyperbaric Chamber doctor, staff, who remembered me. Said to say hello to a fellow oral cancer patient, OCF member! I asked about the carotid artery issue or lack thereof, and said he hasn't come across or read about that yet, so it's new territory, and now I have to get clearance from my surgeon lol. Had a chest x-ray after, and hope the Aspirational pneumonia is gone, so wasn't unhappy to have that done.

With all this my energy level is 0. My mom and I decided to get "meals on wheels" again, and started yesterday. It helps save us energy cooking, and cleaning up afterwards.

Monday I see my optomolgist for follow-up, need blood work, and then probably will hear about the HBOT, and doctor visits start all over agin with others I haven't seen..oncologist, nephrologist, neurologist.

Other than that, nothing new lol.

Posted By: ChristineB Re: Proton Therapy Treatment - 07-17-2014 11:54 PM
Paul, thats quite a hectic schedule you have! Even someone who is perfectly healthy would struggle to keep up with you. No wonder you have no energy!

Best of luck with HBO. Personally I greatly dislike HBO for the time it takes. It make me crazy laying in that tube watching tv thinking of the million other things I should be taking care of instead. Did your HBO doc's mention getting tubes put in your ears? I remember you mentioning you had done HBO before. Many facilities now require tube get placed prior to doing HBO. At least in my area they do. If you need them, thats one surgery that is very quick and easy.

Thanks for always helping others. Take good care of yourself with everything you have going on.

Good luck and be well!!!
Posted By: PaulB Re: Proton Therapy Treatment - 07-18-2014 12:46 AM
Thanks Christine! They didn't mention the tubes this time. I did HBOT 3 years ago, and had no problem equalizing my ears by swallowing, probably from all the swimming, diving I dd, but who knows now. I have a collection of DVD's to watch, but have to remember to bring "G" rated movies. I brought Gladiator once, and not sure it was up to my fellow HBOT roommate's taste in the 2nd bed during the gory scenes lol.
Posted By: Uptown Re: Proton Therapy Treatment - 07-18-2014 04:07 AM
I'm sorry to hear some of your news, Paul, although I know you aren't looking back! I was a little worried about the traps and the rhomboids. Did they address something for the head drop. It often happens when the sternocleidomastoid muscles fibrose or "cord out" like strands instead of muscles. When that happens it continually tightens and pulls the head forward more and more. It's called spasticity. Then the long muscles in the back of the neck get too weak trying to fight the head dropping forward.

There's a great brace that helps the head stop dropping and gives a lot of relief to the back of the neck. One is called the Headmaster. I have one if you would like me to send it to you.

The most popular one now and used by ALS patients is Shane's Neck Brace. I'm not sure I would suggest it because of your neck surgeries.

As far as brachialplexopathy, been there done that, too. The ART people completely resolved it. I guess I forgot to out that in my signature. If decided to limit that to just the terminal diagnoses, which reminds me I need to add Life to the list of those. I just don't know what date to out on that one. lol

Hang in there, sir! Nothing but love and respect for you. I've said it a number of times, but I would never have tried as hard without being inspired by you. If there is anything I can do for you I hope you know I would, will and am here.
Posted By: Uptown Re: Proton Therapy Treatment - 07-18-2014 04:08 AM
Btw, I have a few "G" movies if you like Shrek. smile
Posted By: tamvonk Re: Proton Therapy Treatment - 07-18-2014 08:34 AM
Thinking of you Paul. It seems a daily struggle.
I heard the NO Cancer loud and clear. Really fantastic news.
Posted By: PaulB Re: Proton Therapy Treatment - 07-18-2014 12:35 PM
Uptown, my sternocleomastoid muscle was removed during the neck dissection in 2011. They haven't decided anything yet, I guess too much going on with the teeth issues. I see a neurologist at the end of the month, so I'll take it from there.

I'll pass on Shrek! Hard to believe Midnight Cowboy was X-rated when it came out. That's considered G rated these days.

Thanks for the offers!
Posted By: PaulB Re: Proton Therapy Treatment - 07-18-2014 12:39 PM
Thanks Tammy, it is a struggle everyday, but that's the way it is. I'm sort of used to it after 5 years, but definitely tired of it. Things could be worse, and better too. Still being clear helps!
Posted By: davidcpa Re: Proton Therapy Treatment - 07-18-2014 01:03 PM
Glad you have time to post here.
Posted By: Susan2992 Re: Proton Therapy Treatment - 07-19-2014 07:34 AM

Wishing you the best on your next round of treatment. At least it is "only" dental issues! Although what you've been thru I know that isn't a minor issue. Really happy to hear that you are in the NED category - that is fantastic!

Last year I had to have 4 teeth removed due to RT damage and went through HBO for the 2nd time. I did not require tubes either time and it was not a requirement at the treatment center I went to. I had some issues with my ears during round 1 of HBO, but after I got the breathing technique master, it wasn't a problem. Just the thought of another surgery (tubes), regardless of how minor, wasn't something I wanted.

The only issues I had as a result of HBO was higher BP during treatment and blurry vision towards the end that lasted a few weeks.

The biggest issue was boredom! Fortunately the facility I went to had a large screen TV mounted on the wall and the screen was big enough that I could see it without my glasses. The first time I went through HBO I watched the Sopranos - not exactly a G rating, but I got no complaints from the others in the room, and I found the staff was watching it along with me. The last time I watched the series Lost for the 2nd time (still confused as to what happened). I found watching a series like that made me actually look forward to going to treatment and made the time pass quickly!

Wishing you the best!
Posted By: travelottie Re: Proton Therapy Treatment - 07-19-2014 11:54 AM

Just read over your recent post with NED update! Now wishing you improvement of your pain and symptoms.

My husband had a dental consult last week with Dr. Buchbinder at Institute of Head, Neck & Thyroid Cancer, Mt. Sinai/Beth israel Hospital. Do I remember correctly that you have seen Dr. Urken?

Thinking of you,

Posted By: PaulB Re: Proton Therapy Treatment - 07-19-2014 12:12 PM
I was there last Tuesday, 5th floor. I've seen Dr Urken, Bushbinder in passing lol. I go to this center, and often, read up on all, but see other doctors in otolaryncology, radiology and oncology. I was going to mention Dr. Buchbinder, but being you were already seeing Dr. Urken, he would say what was best. Hope they were helpful.

Thank you for the NED recognition.. It feels good to have two scans in a row, two months apart, that are clear!
Posted By: PaulB Re: Proton Therapy Treatment - 07-26-2014 06:53 PM
Thank you Susan. I read your post before, but somehow missed replying. 1st day went well, no problems. Forgot my DVD at home, but they had some available to choose from. I'm gong to bring some of mine in, donate, since I haven't watched any in several years, but a series sounds good. I do have the first year of Seinfeld.
Posted By: PaulB Re: Proton Therapy Treatment - 07-27-2014 02:47 PM
Getting back to the Proton Therapy Thread. Here us a recent article that Proton Therapy may have advances over IMRT for advanced head and neck cancers.
Posted By: BrianPK Re: Proton Therapy Treatment - 07-29-2014 02:40 AM
Congrats on the NED, what a tremendous battle you've had. I hope you get a serious long term (forever) break from this!
Posted By: PaulB Re: Proton Therapy Treatment - 07-31-2014 03:23 PM
Thanks Brian. Unfortunately, cancer aside, I will have no breaks for a while with HBOT, tooth extractions, hopefully dentures, and now with my left arm paralysis, which in my books, is nothing lol.

HBOT, 5th day. So far, it's the same as before. It lowers my BP somewhat, which was found to be very high, and blood glucose. I have to keep my glucose at a higher range since it can go from 130 to 105. No problem equalizing my ears, but makes me tired enough to take a nap when I arrive home. I brought a bunch of light hearted DVD's to watch, chose one, and was embarrassed when suddenly there was a sexy scene, cursing. I should have expected that with a movie titled, "The Matador." I thought they would tell me don't come back lol. Sticking to Seinfeld today.

Saw a neurologist yesterday for my shoulder issue. Nurse had to call the doctor in sooner since my BP was 193/130. It was funny when reviewing my history, after my first cancer, and treatment, the doctor thought that was the extent of it, but said, no, and continued on to the 2nd recurrence, and after that, thought the same, but said no again, and went to the 3rd to the 7th saying not finished yet lol, and when I said I have no carotid artery, the doctor did a double take to look at me, and when I finally finished, said , "wow!" My ENT did say to his colleague my last visit, my carotid was removed, and told me I'm one of the few people in the world walking around without a carotid artery. I guess that's why he calls miracle man.

Anyway, after my history, physical examination, mentioning possible brachial Plexopathy, the doctor said she thinks it's more than just that, and has to conduct some tests to have a better idea, so I'm scheduled to have an EMG and an EEG test next month.

Hope to have a blood test done tomorrow before HBOT, and see my oncologist next week about the high BP. I don't think they may do surgery with it so high? Have to schedule an appt. with the Oral Surgeon too, as far as surgery for the tooth (all) extractions, and was told by HBOT it usually is done immediately following the 4 weeks, which is the 21st of August, have extractions, and continue HBOT the next day lol. We'll see about that.
Posted By: PaulB Re: Proton Therapy Treatment - 09-07-2014 02:55 PM
Intensity Modulated Proton Therapy reduces the need for feeding tube by 50% in oropharyngeal patients.
Posted By: donfoo Re: Proton Therapy Treatment - 09-08-2014 05:46 PM
[quote]MD Anderson researchers evaluated 25 OPC patients treated with IMPT and 25 OPC patients treated with IMRT as part of the study. Five patients treated with IMPT required the use of feeding tubes (20 percent) compared to 12 patients treated with IMRT (48 percent).[/quote]I'd not see a hard number assigned to people on PEGs.
I wonder if "required the use of feeding tubes" counts those having them inserted or those who actually used them? Do they count those getting them early then not using them?
Posted By: PaulB Re: Proton Therapy Treatment - 09-08-2014 08:39 PM
I would think the notation, "required the use of feeding tube..." means to have required the need to have used it for nutrition. It didn't say if they already had one inserted prior to treatment or needing one placed during treatment or if used solely, partially, as the only means for nutrition, but at some point it was required to use. It's a small study, but not surprising findings, to me.

The article also mentions an ongoing randomized phase ll/lll trial at MDAnderson during the next 5 years with IMPT vs IMRT.

Posted By: PaulB Re: Proton Therapy Treatment - 09-23-2014 01:58 PM
Proton news, insurance coverge...Interesting, Indiana University's Proton Center is closing, and one way to have Proton Beam covered is through a Clinical trial like MDAnderson's. I don't know if the articles will open, but can be searched.
Posted By: donfoo Re: Proton Therapy Treatment - 09-23-2014 10:17 PM
Hi Paul,

Thanks for the links. The second link you post does not open but going via search I got to it. Below is the article text.

From this article it is hard to draw any conclusion on the state of PT. We all know it is costly as reiterated in the article and fewer insurance companies are authorizing such treatment yet more centers are being built.

Must be more to the story (financial) for such investments to be made unless they see profits somewhere. It does state exclusion for prostrate cancer but not others.

As a proton therapy center closes, some see it as a sign

By Jaimy Lee
Posted: September 18, 2014 - 5:15 pm ET
Tags: Costs, Indiana, Insurers, Medical Technology, Reimbursement

The Indiana University Proton Therapy Center will close in December, marking the first time a proton-beam therapy center in the U.S. has shut its doors since the rapid proliferation of the costly treatment centers began about a decade ago.

University executives and an independent review committee attributed the center's financial losses to a range of issues, including the cost of maintaining its aging cyclotron, but the committee also suggested the industry may be on the verge of a “proton bubble” as the centers struggle to serve a sufficiently large patient population.

Many of the centers have based their volume expectations on treating prostate cancer patients, but insurers have increasingly started to push back against providing coverage of proton therapy for these patients because of a lack of evidence proving superior benefits over other treatments.

Blue Shield of California and Aetna last year said they would no longer cover proton therapy as a treatment for localized prostate cancer. Cigna Corp. does not cover proton-beam therapy in the treatment of prostate cancer either.

“I look at this closure as a sign that insurers are finally empowered to say this is a dubious medical technology” in the treatment of patients with prostate cancer, said Amitabh Chandra, director of health policy research at the Harvard Kennedy School of Government. “The 'build it and they will come' philosophy around these centers is being questioned.”

The IU center, located in Bloomington, Ind., was the third in the U.S. when it first opened its doors in 2004. It's jointly owned by the Indiana University Research and Technology Corp., a not-for-profit that handles IU-related business development, trademarks and intellectual property, and IU Health, an Indianapolis-based health system that owns 15 hospitals in Indiana.

“Unfortunately, rapidly advancing technology and changes in the dynamics of cancer treatment have left us with a dwindling patient base and a facility that is many times more expensive to operate than most of our competitors in this field,” Dr. Jay Hess, vice president for clinical affairs and dean of the IU School of Medicine, said in a statement announcing the closure in August.

There are currently 13 proton centers, including the IU center, operating in the U.S. and at least 12 more facilities in development, according to the National Association for Proton Therapy. A facility can cost more than $200 million to build. Even the least costly proton centers still have price tags of around $30 million each.

When faced with the prospect of spending millions of dollars to update the IU center's equipment, the university called for an independent review of the facility.

The review committee unanimously recommended closing the center. In the committee's report (PDF), the reviewers highlight many of the issues affecting the proton industry as a whole, including the lack of completed randomized clinical trials, improvements in alternative treatments, changing care patterns for patients with prostate cancer, and the rise in new payment models, such as bundled payments, that may remove incentives to use the therapy.

“It is, therefore, quite possible that we are on the verge of a 'proton bubble' with the more indebted centers or those without a strong patient supply line closing,” the committee said in the report.

While proton therapy has been most widely used in the treatment of prostate cancer, it also can be used to treat lung cancer, pediatric tumors and cancers of the head and neck. Using protons to treat pediatric cancers, for example, is considered effective by many practitioners. Among the IU committee's recommendations was a suggestion that the hospital system consider building a single-room proton facility at the Riley Children's Hospital in Indianapolis.

“It became clear that there is no overriding drive to maintain this facility in the face of mounting losses and required investment to maintain operation,” the report said.

The losses and challenges were clearly outlined in the report. The IU center requires 63 people to staff the cyclotron, spelling high labor costs. The technology, which was adapted from a research cyclotron, needed a $30 million upgrade. The Bloomington site, which is an hour's drive from Indianapolis, is not ideal for clinical-trial participation because it requires most patients to travel.

The center reported a $3.5 million operating loss in fiscal 2013. Another challenge it faced: newer centers are expected to be opened by University Hospitals in Cleveland, Ohio, and by the Mayo Clinic in Rochester, Minn., key referral markets.

The closure will have “minimal to no impact on the proton community outside of Indiana,” said Leonard Arzt, executive director of the national association.

The IU center is not the only proton therapy facility to struggle financially. ProCure, a Somerset, N.J.-based private-equity operator of three proton centers, in 2013 sold its stake in a proton center in Warrenville, Ill., to its partner, Cadence Health, after undergoing a financial restructuring.

Some experts say they don't expect more closures. “I don't get that sense,” said Dr. James Yu, assistant professor of therapeutic radiology at Yale School of Medicine.

But he does anticipate more reimbursement pressure and pushback from insurers for proton treatments beyond prostate cancer.

“As insurers become more restrictive in paying for prostate, I hope they also become open and supportive of agreed-upon treatments rather than restricting proton treatments across the board,” Yu said.
Posted By: PaulB Re: Proton Therapy Treatment - 09-23-2014 10:28 PM
Don, thanks for posting the text. Seems to be lots if interest in the Proton subject with over 30,000 views, so just posted some recent news. I think they want to restrict more of Prostrate treatments as you say. Other reports mentioned some centers being built as prostrate mills. Where I went, I think there were more prostrate cancer patients than any other. They even received a nice white robe, and I didn't lol, but what they have to go through, I wouldn't want to do, but maybe some of it are just rumors.

I wondered how many employee's worked at some facilities, and 63 is a good estimate where I was, and seemed to be more staff than patients, but the facility was luxurious, top rate, very calming.
Posted By: donfoo Re: Proton Therapy Treatment - 09-23-2014 10:57 PM
I found another article with more detail

In fact, 115 employees are losing jobs from the shutdown. 65 at med facility and 50 at the cyclotron. And doing 2000 treatments in 10 years. This must have been tough but easy (financial) decision.
Sounds like any technology. Obsolete the day you get it. Walk around the block and get gen 2 for half as much and does twice as much.
Posted By: PaulB Re: Proton Therapy Treatment - 09-24-2014 02:19 PM
Here is the OCF posted article:
Posted By: PaulB Re: Proton Therapy Treatment - 09-25-2014 01:01 PM
Proton Therapy: Progress with a Price Tag
Posted By: donfoo Re: Proton Therapy Treatment - 09-27-2014 09:14 PM
No kidding
[quote] Pericak says, “We’ve seen that the cost of investing in protons is actually decreasing in some respects. Historically, you’d have to [spend] $200 million for a four-room center that takes up the size of a football field. Now, hospitals can buy a single-room system for about $30 million in their current space.” [/quote]
Posted By: PaulB Re: Proton Therapy Treatment - 09-27-2014 11:47 PM
A single institution, except a top CCC, just to stay on top of the competition, probably wouldn't even want or can't afford to invest 30 million into technology. One top hospital, forget which one, is building two centers! What places are also doing, like the Top CCC in NYC such as MSKCC, NYU, NY Presybetrtian, Mt. Sinai, Continuum Health Care (Beth Israel), and Montifiore, joined together and formed NY Proton Therapy Group, which joined up with ProCure Proton Center in Somerset, NJ, to use the proton center there with their own radiation oncologist's. This group is also building a large center in NYC, site was changed from West 57th street to the East side, 1st Ave, around 120th street, which didn't break ground yet.
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