Hi - new to posting (anywhere - I work at a computer all day, but never joined forums or "chatted").

Trying to educate myself quickly on chemo-radiation options before I meet with RO. Am in between walking around in a cloud, doing whatever I'm told and freaking out.

Just read through my post and it's looong. Sorry to be windy, but I'm stressing again. Am hoping for tips on how to choose an RO and info on chemo-rad options (induction vs. no induction).

Recently dx Stage 4 BOT + 1 node. Tonsillectomy 10-26 with open biopsies (tonsil was clean; tumor was pressing against it). ENT referred me to surgeon, whose associate at first said they'd operate, then radiate with chemo. A few minutes later, the surgeon I'd been referred to said it'd be 6-7 weeks of chemo-radiation, then I'd see them again. Still in a daze, and asked questions, but (unfortunately) hadn't been doing enough digging to know which questions to ask. ENT set up appt with local RO (I'm trying to learn abbreviations)for Monday at a local RO (just a few minutes from home, affiliated with hospital with cancer center minutes from home (almost all hospitals in my area are with the same group - monopoly or better collection of resources, it's a matter of opinion). Surgeon (1/2 hour away at the University of Cincinnati Barrett Cancer Ctr.) set me up with a University of Cincinnati RO Friday (I asked if it would be better to see an RO with the same center). I have no clue how to choose between the two (both, of course, are well-recommended). Any suggestions? I tried to see what technologies are offered at the two centers, but couldn't find enough info online.

Also, read a member's post saying that they did induction chemo followed by chemo and radiation because it greatly increases success rates. Any ideas on how this works, and why my surgeon said nothing about it?

I've been reading A LOT of posts on this site - even when I wasn't reaching out, it made me feel good to see the way you people are putting care out there to the people whose questions I followed.

Any light on the subject would be appreciated.

Be well, do good.

- Pam M

Hi Pam,
Unlike you, I happened upon this site when my husband was reaching the end of his treatment. Initially we were in a similar state of mind and researching treatment and hospitals seemed overwhelming. I think a lot of decision making in health care is based upon available resources and access to care. In our case, we chose a local cancer care center with experienced staff who came up with a treatment plan and were able to implement each aspect of treatment quickly and efficiently. It was a simple treatment plan (radiation and chemo) but there can be a lot of complications, Looking back, the most important part of the treatment plan was the ability of the team to coordinate the care and communicate with each other and most importantly, with us�an unusual experience given the number of specialties involved�from oncologists to pharmacists to nutritionists to the guy who delivered the cans of liquid nutrition

Cjack,

I feel lucky to have stumbled on this site before I went into my first RO appt clueless - sorry it wasn't the same for you.

Thanks for your reply - I'm amazed at how I'm not familiar with anyone in my area who's gone through this sort of thing (well, within the last 18 years or so).

Am I correct in thinking your husband's treatment began with radiation and chemo for 7 weeks, and the current round is chemo? Was this your original plan? The other posts I've seen looked like they started with Chemo alone, then moved to radiation with chemo. Is your cancer center part of a local hospital?

I have a KY hospital (Saint Elizabeth) with cancer center about seven minutes away from my home. The other RO I'm considering is at UC in Cincinnati, OH (about 25 minutes away). So far, my only game plan is to talk with both ROs and ask about available technology and recommended course(s) of treatment.

Regarding your treatment team ["an unusual experience given the number of specialties involved�from oncologists to pharmacists to nutritionists to the guy who delivered the cans of liquid nutrition"] - do you have a doctor co-ordinating all the movements? I feel like everything's very disjointed already, and I've only made appts with an ENT, Surgeon and two ROs. I'm hoping that I'll see more of a "team" approach like I see in cancer centers' websites.

Again, thanks cjack - my best to you and your husband.

Hi Pam,
I sounds like a good game plan to me.
In our case the Dr.s seemed to reach a consensus easily about the timing and length of treatment. Things moved very swiftly once treatment was initiated. Most of the treatment took place at a local hospital cancer center. The CO's nursing staff coordinated the other services which included a dietician and home health nurse. Our dentist worked with the RO. We used the same pharmacy to monitor possible drug interactions. Our choices were guided in part by insurance, location and a gut feeling.
I wish you well on this journey--it sounds like you're off to a good start already. Please keep us posted.
Pat

We used a Comprehensive Cancer Center. The Medical Oncologist (MO) is the team leader. He coordinated with the Radiation Oncologist (RO) and ENT surgeon to rather quickly come up with the treatment plan. The ENT enlisted a general surgeon to install the feeding tube (PEG). All three doctors shared all notes and test results, and coordinated their appointments so that someone was always checking Dana's progress. I would suggest that you take someone with you to appointments whenever possible to take notes. If you're alone and emotions take over the notes really come in handy! Also, if you go in with written questions, the doc will take you more seriously, and you won't forget to ask something because your emotions are taking over. We didn't find this site until Dana was almost done with his radiation. Count your blessings that you found it early on. There are many people here who can answer your questions, so ask away. I wish you the best on this journey.
Diane

Thanks to both of you ladies - I feel like I want to trap several of you in a room and bombard you with questions. I'll try to look up as much as I can on my own.

Once you met with a RO, how long 'til treatments started? I'm returning to work tomorrow (after RO appt) after two weeks off for tonsillectomy, and need to get my ducks in a row while I'm working.

A comprehensive center would have been my first choice, but it looks like that won't be an option for me (if I can't get to treatments, I can't take them).

Again, thank you - keep trooping

Hi Pam!

It took two weeks from Dana's first RO appointment until his first treatment. There are many calculations that need to be made to be sure the radiation is reaching the right area in the correct dose. Dana had had a previous neck reconstruction surgery with plates and screws in his neck and this was a challenge...how to get the proper radiation delivered without it being sheilded by the hardware in his neck. It took two dry runs before the RO was satisfied with everything. They will also have you come in to have a mask fitted. This is an open-weave plastic custom-fitted mask that will keep you in exactly the same position for each treatment. After reading several posts here, I would suggest taking a low dose xanax before donning the mask. Anything to make this more bearable, you know! Also, eat all of the foods you like and don't be afraid to gain a little weight. Dana lost 30 lbs. during his treatment. Your body will consume calories like crazy as it heals from the chemo and radiation, plus swallowing will become difficult toward the very end of radiation and for a couple of weeks after. Please ask any questions you think of. Everyone here will answer truthfully. The specific type of oral cancer might be different, but the initial treatment seems to be pretty much the same. Come here often for support!
Diane

Pam,

I used this site constantly during my treatment and let my team at the CCC know it. I always had questions on our team day (every Thursday) and days in between with individual nurses and Doctors. Most of those questions originated at this site.

I chose to travel to a CCC 1 hours drive from my house even though there was an option closer. I wanted the CCC approach. I was also on Ethyol so I had to add an hour to treatment time. This really screwed up my work schedule and I had to put in extra hours at home at night but it was worth it. My wife went to every meeting and took notes and then made sure I could get every opportunity I could for rest.

I have a 12 year old son and made sure I kept as close to our regular schedule as I could. I scheduled my treatments so I could drop him at school on the way and made all the Boy Scout meetings and even showed up at some of his camping events (didn�t stay over night).

I had some mouth pain from ulcers but never had to get a PEG. I was back to 6 hours of work a day a week out of treatment, and am now back to 8 hours three weeks out (I still sleep a lot). I am working my way past soft foods slowly. My Saliva is lower then previous but not gone and I can eat some bread with water (had a small burger the other day). My taste left me but I am slowly getting some of it back.

I�m not one of those who �Breezed Through� but I did very well and consider myself very lucky so far.

This is not easy by any stretch of the imagination, but you may find that it is not as hard as your imagination may lead you to think.

Keep your chin up and best of luck.

Kelly

Kelly,

I'm glad to hear you were spared some of the horrors many of the other posters had to go through, even if it was still anything but a walk in the park. Here's hoping your follow-ups are clear. Hearing your experience gives me something to shoot for - thank you for letting me know how a tiny bit about what you've gone through. I am glad to hear that you don't seem to have suffered as much as most others. Assuming having a 12 year old to tend to and a supportive wife helped, too.

OK - just looked up Ethyol. So it was given in hopes of protecing your salivary glands, and it sounds like it did help you - great. I've read that you may recover more, that'd be wonderful. I've been reading (and agonizing over) several posters' descriptions of the pain of inadequate or non-existent saliva production.

So, were you able to eat at least soft foods throughout, or did you need to resort to liquids?

I really was pleased to hear from someone who has fared relatively well through treatment. My son is older, and I was afraid that I'd have to ask him to move back in with me for most of the treatment period (he has a live-in, college, and work, so it would be a hardship for him). Your post helps me think I've got a shot at self-sufficiency.

Thanks - my best to you and yours - do well.

Diane,

It really helps me keep my head, getting pearls of wisdom from those who've gone before.

Thanks for the xanax advice - I've never taken it before, but have to agree that it sounds like a good idea.

I, too, had a right tonsillectomy - it was clear, but my tumor was touching it, so it came out when I got biopsied.

I just did some looking, and read that your husband's PEG tube came out at one point. That must have been terrifying! I'm not really sure what they're like (one person I read somewhere likened it to a button on his stomach with a tube coming out). When did Dana use it - the entire time, or beginning at a certain point? It looks like he had it in for 8 months. Did it take that long for treatments to complete, then his throat to clear enough to eat?

Appreciate everything,

- P

Pam:
I haven't been on this site in awhile so I'm sorry it taken some time to answer your posts.

I had a PEG. I went under a mild anesthesia when it was inserted. It looks like a small plastic disc with a tube coming out of it. I had it in the whole time I was in treatment, but never used it. But as I said before, I was a very unusual patient, most people have trouble swallowing.

I would definitely advise getting a PEG.

Sandy

Pam: I been reading over your posts and have some comments.

First, you will need some assistance during treatment most because of the fatigue. I think I slept 20/24 hours a day. So you'll probably need some help with preparing foods you can eat, and other household chores.

Second: Ethyol is a drug used to help protect your salivary glands, but it has really nasty side effects.

Sandy

Sandy,

Thanks for the tips - I didn't even look up side effects for Ethyol - I had checked out Amifostine earlier, and was going to ask about it (truthfully, I saw "protect salivary glands", and I was all about it).

Have you heard anything on IGF-1 (Insulin-like growth factor)? I'm looking at it now.

Thanks for the tip on probably needing someone to take care of me. My son is in the "of course you'll be fine, the doctors will fix you" frame of mind and probably horrified at the notion of having to tend to me (he does love me, but nurturing is not part of his makeup).

Oh - gotta run - need to finish getting ready for MO appt.

Thx,

- Pam

Pam,
The most important thing of all that you need to know about a PEG tube is that it can save your life - literally! Even with Dana's unusual issues with his, he always has said that without the PEG, he wouldn't be here. At one point it was the only way he could take nutrition and the necessary hydration. His first PEG was the button-type. (Do an "image" search on Google to see exactly what they look like...it's not scary, I promise!) It was installed the same day as his tonsilectomy and radical neck disection. From the very beginning, we maintained it by flushing it with water. This made handling it, maintaining it, and using it later on no big deal. He is diabetic and the edges of the hole never looked quite right. We kept showing it to doctors, and they kept telling us to keep an eye on it. We had decided to be more proactive about getting something done about it - right after his cousin's three day visit. The day she arrived, we went out to dinner. He was having soup, as that was the only thing he could swallow at the time. All of a sudden, he got up and went to the restroom. He's not sure if he got sick because the button popped out, or the button popped out because he got sick, but we wound up in the ER, where the ER doc said he'd never seen anything like it! The docs played "pass the buck" on who was responsible for replacing it. Four days later, the original general surgeon came in and replaced it with the balloon type PEG. Lesson learned: ALWAYS list your MO as your primary doc if you need to be hosptitalized. If we had, he would have been handled differently, and put on the Oncology floor, and had better care. (This info was from the patient advocate at the hospital.) Anyway, a few weeks later, Dana was late taking his liquid nutrition, and his stomach tried to digest the balloon on the inside! Off to the Dr. again to get the balloon deflated, the PEG adjusted, and the balloon re-inflated. By this time, we were laughing with the general surgeon about Dana's unusual PEG tube adventures.
He had it in for several weeks before he used it to supplement the food he was able to take orally. For the last couple of weeks at the end of radiation and a couple of weeks after the end of radiation it was his only was to get nutrition and hydration. At one point, the RO wanted him to consume 3000 calories/day just to maintain his weight. There was NO way he could swallow that much food! He went back to work with it still in, and was able to function just fine. He had it removed after he was able to consume all calories orally for a whole week. We kept a calorie diary to ensure that he was getting enough each day. We lined up the day's bottles of water (8) and made sure he finished them each day. Now that he's past that, it seems like we have nothing to do!
Everyone has different PEG stories-some get them and never use them...But we are huge supporters of using them. Using one doesn't mean that you've failed in some way, it just means that you've got a way to save your life!
Hope your visit to your MO went well. Hang in there!
Diane

Pam,

First off Ethyol and Amifostine are the same thing, Ethyol is the brand name.

The side effects can be nasty and the shots sting a bit. A lot of people get nausea when taking it (I didn�t) the other problem is with skin rashes. I got this near the end of treatment and had to stop the Ethyol for the last two weeks. The rash I got was not very bad at all but the RN and the RO both wanted to stop because they said it could get much worse very quickly.

My Saliva is probably at about 60% and gives me no problem when I am up and active. When I sleep I tend to wake up with dry mouth on my right Side (treatment side).

I went to all liquid diet for two weeks. My last week of treatment and the week after that. I am still on soft foods three weeks out and take the Unsure twice a day to boost my calorie intake.

I was with others at the CCC who had the PEG and they said they worried about it way too much before getting it. After they got it they found it was not as bad as they thought. I was always prepared to get the PEG and was weighed every session. If I dropped more then 5 pounds the agreement I had with the head RN (She was tough as nails) was that we would do the PEG. I also had my wife riding me every meal to get those calories down.

Good luck and get the PEG if you think it will help in the least, Remember, I did not have chemo so I had little nausea.

Kelly

Pam,

This is a VERY SERIOUS disease. Don't take it lightly. Many people die.

First things first. H&N cancer is a different animal. Its substantially less common than breast cancer or prostate cancer, to name just two, and it occurs in a part of the body that is very difficult to treat. Its crucial that you have a medical team (led by an MO you trust) that is highly experienced in treating H&N cancer. I'll say again, your most important decision is which medical team you choose for treatment. In my opinion, the 4 best places in the USA for treating H&N cancer are: John's Hopkins University (Baltimore), M.D. Anderson (Houston, not Orlando), Massachusetts General Hospital (Boston), and Dana Farber Cancer Institute (Boston). They are the best because of the experienced medical teams they have, not because they have fancy equipment or nice corridors or low prices or whatever. If you want to live, talk with staff at these places and find a way to get treated at one of them; these centers have specialized staff who will help you find low-cost accommodation for yourself (and a willing friend) while you are being treated.

Next: Treatment Plan. My expectation is that any of the four places mentioned above will recommend a plan that starts with Induction Chemo (IC) and then moves on to concurrent chemoradiation treatment (CRT). Since I live near Boston, I visited both MGH and DFCI... they both recommended the same treatment plan. Having now had time to research this, I would INSIST on having IC and I strongly recommend that you do the same... if your doctors refuse to offer IC (or if they demur, saying they don't see the benefit), hold their feet to the fire and ask them to show you the studies that say there are better outcomes without IC (they won't be able to do this because they don't exist).

After this, its all details. Which chemical cocktails they'll use and which radiation treatment they'll use. [They use IMRT at both MGH and DFCI. I actually liked the fancy/newer Tomotherapy technology better but, after lots of research, I concluded that a radiation planning team using Tomotherapy needs to have MORE experience than one uses IMRT in order to get as good of an outcome. Further, I scoured the USA and could not find an experienced team using Tomotherapy to treat H&N cancer. JHU uses Tomotherapy only for prostate cancer and their doctors (who are proponents of the Tomotherapy technology) told me I'd be better off with IMRT because I'd have a better medical team for my cancer. The H&N doctors at JHU and MDA (Houston) don't use Tomotherapy; some H&N doctors at MDA (Orlando) do use Tomotherapy but they're not as experienced as my H&N doctors at MGH. So I ended up getting all my treatment at MGH.]

Beyond treatment details, there are many details about how they'll keep the treatment itself from killing you and how they'll keep you reasonably comfortable throughout the process. No matter what they do to make you comfortable, it will be miserable. Focus on getting through all the misery knowing that it does come to an end; you will eventually feel better and enjoy life again... and if you've made the right decisions on the big items (above), you'll probably live a long time. Don't let the small detailed decisions sway you on the big decisions.

Best, Rob

Rob,

Thanks for the info. I just asked you (in a message)some of the questions you've just answered.

Unfortunately, I have very limited financial resources, so would not be able to travel for treatment. I'm glad you had access to one of the best centers. Even the RO I saw did say that there were much bigger and more comprehensive centers than his, and that he would have advised me to go to one of them if he thought it would mean a better outcome.

Luckily, the first thing the local RO I spoke with said was that he would definately recommend Induction chemo (before I had a chance to bring it up).

The surgeon I spoke with a couple of weeks ago said that treatment would be radiation with concurrent chemo, then surgery to remove my lymph nodes (one involved that I know of). The RO said that he hopes to avoid the need for surgery.

Can I ask - did you use a PEG and port? Which parts of treatment were the most difficult for you?

- Pam

Pam,

Yes. Both a port and a PEG. Here's my story:

My first round (out of three) of IC was done on an in-patient basis and without a port because they were eager to get started. So they put an IV in my arm and pumped in the drugs. I had the TPF cocktail: Docetaxol (T), Cisplatin (P), and 5-FU (F). They get the T&P into you in only a few hours but they take several days to get the F into you. The F is very unpleasant (many bad side effects) and its rough on your tissues as well. In particular, because the F was going into my arm (through small veins), it caused really bad marks all along the inside of my arm which made me look like a drug addict for a couple months. Once they finished pumping these chemicals into me, they sent me home. I was feeling sick as a dog after this and, at my first follow-up appointment, I threw up in front of the nurse (fortunately, I got to the sink and didn't make a mess... but I was embarrassed).

Toward the end of the first round (each round was 3 weeks long, and you feel pretty much okay during the 3rd week), the gave me a fancy Dual-Lumin PowerPort. The "Dual-Lumin" aspect means they have two little wells to stick needles into and so can have two different streams of stuff flowing into you at the same time; this can be very handy. The "Power" aspect of this means they can put some things into you under pressure; I'm told this is useful when they want to give you contrast agents for CT or other kind of imaging scans. So the port can save you from getting all kinds of needle sticks (blood tests, imaging exams), not just for the chemo. But the best aspect is that it causes the stuff to flow into a huge vein (not a small one, like in your arm)... so when they gave me the 5-FU later, it had a chance to mix with a larger volume of blood (and get diluted) before coming in contact with the walls of the veins and this means your tissues don't get hurt as much by the 5-FU.

So they started the 2nd round of chemo on an out-patient basis using the port. I got the T&P while still in the hospital (for just a few hours) but they sent me home with a portable pump full of 5-FU that dribbled into me over the next few days. Fortunately, my MO reduced my dose of 5-FU by 20% so this 2nd round was a LOT more tolerable than the 1st round.

At the end of the 2nd round, I was complaining of some pain in my arm and my MO sent me for an ultrasound exam. This exam found I had a blood clot in my arm which they said was caused by the port. So they postponed my 3rd round by 1 day while I got the port removed and they started me on twice daily injections of a blood thinner; I had to give myself these sub-cutanous (not intravenous) injections for the next 3 months. So I was bummed out to lose the port and I was bummed out to have to give myself all these injections.

I forget how we managed the 3rd and final round, it must have been intravenous again and I think it may have been on an out-patient basis. Anyway, we got through it; then they gave me a few weeks break before starting the chemoradiation treatment (CRT).

I pushed to get the PEG installed as soon as they started CRT. I wanted it in before I needed it so that I could practice using it. That turned out to be a good idea because I had become comfortable using it by the time I needed it. There were three ways to use the PEG: (1) in the "bolus" approach you put the liquid into a huge syringe which you attach to the PEG and "push" the liquid into our stomach; the first time I did this too fast and went into a cold sweat - I had to lie down for the next few hours; (2) I soon learned to use a gravity bag; you just hook a tube from the bag to the PEG, place the bag on an IV pole, and fill the bag with liquid... then I would go lie down and let the liquid flow into my stomach. This was the method I used for all my nutrition for the next 3 months. (3) I heard about, but never tried, a 3rd method similar to the gravity bag but it uses a pump rather than rely on gravity.

During Induction Chemo, I lost 25 pounds because I never wanted to eat anything but the biggest problem I had was dehydration. The dehydration would weaken me to the point where I could barely stand up. So I was going to the hospital almost every day to get fluids pumped into me via IV. It was common that they would wheel me into the hospital in a wheelchair (because I was so weakened by the dehydration) but, after 4 hours of getting fluids pumped into me, I would bound out of the hospital feeling filled with energy.

During CRT, the PEG helped me keep hydrated and I never again needed to go to the hospital for hydration. I would typically mix 1 can of the nutritional fluid (called Jevity) with 1 can of water and I would do this 6 times a day. I didn't lose any weight and I never got dehydrated. By comparison to my experiences in IC, this was great. I finished CRT on 26 August and had mostly weaned myself off use of the PEG (and back to eating orally) by 30 September... which is when I returned to work.

I still have the PEG in place, but I haven't used it at all for over a month now. The only reason I haven't had the PEG removed is because I'm now about to undergo surgery (neck dissection) and there's a chance the PEG may be useful during my recovery from the surgery.

So I highly recommend both the port and the PEG. They are very useful.

Hope that helps, Rob

Rob,

Thank you for being so detailed in describing your experience -I feel it helps me prepare myself. I understand everyone has their own experience, and mine may not be the same, but I like knowing how the process went for someone who probably had the same drugs I'll have.

You got dehydrated during IC? Did nausea keep you from being able to get in enough water?

I actually have no appetite whatsoever now, so have been getting used to eating when I'm supposed to eat vs. when I want to eat - here's hoping nausea doesn't keep me from following feeding timelines.

Was your CRT more or less trying than your IC?

- Pam

Hi Pam,

I think your questions are getting harder for me to answer, but I'll try.

I think I had a lot less nausea than the doctors expected me to have. They gave me a bunch of anti-nausea drugs. In fact, one of the hard parts of the entire treatment was keeping track of all the different drugs I was supposed to take (and the schedule for taken them, etc). Its nightmarish. I kept charts on graph paper where I would list all the drugs down one side of the sheet of paper (top to bottom) and I would list the days across the top of the paper (left to right)... then each day I'd go down the list and mark which drugs I'd taken when. Maybe you'll have somebody take care of this for you and just tell you to take this pill or whatever; but I only have myself to rely on, so I needed a system to help me keep track of it all. I was having trouble remembering which drugs are for what purpose; and the doctors would often refer to a drug by its brand name while the pharmacist would label it by its generic name... so I'd keep lists to enable me to translate back and forth. It was all a bit of a zoo because the things that were bothering me (the side effects) would change every few days, so the drugs one needs to take would change as well. The whole purpose of all these drugs and regimens is just to minimize the side effects of the chemo, or the side effects of the other drugs. So you take narcotics to reduce pain but the narcotics cause constipation so you take laxatives to reduce the constipation... but then they tell you to take some mineral (because your blood tests show you are low on this mineral) and that turns out to have its own laxative effect so now you have diarrhea and you figure out you should ease up on the laxative.

Anyway, I don't think it was nausea that kept me from drinking enough water. I'm not really sure what it was. I just didn't want to eat or drink anything. On some days it was a struggle to force myself to get 150 calories (one can of sliced peaches). I had several flavors of Ensure and would feel proud of myself to drink one small bottle (as my entire day's worth of food and drink). It was at these times that I was not only getting dehydrated, but I was shedding weight like mad. [Silver Lining: I'm still 25 pounds lighter and now I fit into a bunch of very nice old clothes that hadn't fit me for ten years.]

The first round of IC was harder than the 2nd and 3rd rounds for two reasons: (1) I was so miserable during the 1st round that my MO dropped the dose of 5-FU by 20% for the other two rounds, and (2) I didn't know what to expect during the 1st round but it taught me a lot... within each round, there was a progression of different symptoms; I learned to recognize them and what I had to do to cope with them.

The chemo kills fast-growing cells. That includes cancer cells but it also includes the cells that line your mucous membranes. You have mucous membranes lining your entire oral cavity, your nasal cavity, your throat, your stomach, your intestines right on down to your anus. Everything is affected. All the cells that line these mucous membranes die and eventually grow back, until they do you are in misery. I developed painful sores inside my mouth, similar to canker sores. I got a fungal infection, known as Thrush, which is common in babies. My tongue and soft palate would swell up and cause me to gag, unless I sat upright... but sitting upright would keep me awake, so I stayed awake for 48 hours (and killed the time on the Internet). The constant gagging was unbearable and would cause me to run to the bathroom to spit up into the sink (eventually I just kept a bowl next to my bed that I could spit into; gross but effective).

Has anyone told you to have your teeth checked!!! Before you start treatment, go directly to your dentist and get a RECENT set of full mouth X-rays. I was lucky that my teeth were in very good condition. I've heard of lots of people who needed to have teeth pulled prior to treatment... some people needed to have ALL their teeth pulled. Get yourself some prescription fluoride toothpaste. Get some ultra-soft tooth brushes. Get yourself some custom-moulded trays. Once you are in treatment, do NOT floss your teeth... carefully and very gently clean them with the ultra-soft toothbrush (careful not to hurt the gums and to avoid those mouth sores). Discard any alcohol-based mouthwash. Once treatment is over, and your gums get back to normal, you can start flossing again. You should also fill the custom-moulded trays with fluoride gel and place this on your teeth daily for a minute or two... for the rest of your life. This is because the radiation will give you dry mouth which will make you prone to dental caries (especially on the roots of the teeth, where they are hard to fill) and the fluoride treatments will help you avoid dental caries. If you don't do this, you'll lose your teeth in the years after treatment. If, after treatment, you do need a tooth pulled (or a crown), you might want to have this done in a hyperbaric chamber; the hyperbaric chamber infuses the region with oxygen during the procedure and, hopefully, prevents osteonecrosis of the jaw (ONJ). What's happening here is that any radiation that hits the bones makes those bones susceptible to "bone death" (osteonecrosis) if they become traumatized; so pulling a tooth after radiation treatment will traumatize the jaw and that might cause ONJ. You don't want ONJ.

The actual radiation treatments were, for me, relaxing (almost pleasant). I'd lie down on the table, they'd place my custom-moulded mask over my face, and I'd just nap for about 30 minutes while the IMRT machine did its thing. The worst part was that the machine made some noises, which would interfere with my ability to listen to the music I had playing in the background. Really nothing to it.

And, compared to the chemo given in IC, the chemo that accompanied the radiation treatments were (in the words of my MO) a "walk in the park". I had so few side effects its hardly worth mentioning.

But the effects of the radiation treatments were cumulative. The first couple weeks weren't so bad, but things got worse as treatment progressed. From the start, I put lotion on my neck 3-4 times every day... at first this seemed pointless, but my nurse was doing a study and I wanted to help out... toward the end it all made sense and I was glad I did this, because the radiation burns on my skin were MUCH milder than some folks had. Still, there were a couple weeks around the end of treatment where the skin on my neck was quite painful and I was applying an astringent to keep the area dry until it healed itself. The insides of my mouth developed sores (sides of tongue, insides of cheeks, gums) and I had swollen soft palate, tongue, esophagus. Thick gobs of mucous would develop in my throat and it seemed impossible to clear it out (although I was desperate to do so). Although I was told that carbonated beverages would be intolerable (due to the mouth sores), I found that Coca-Cola had an almost magical ability to cut through the mucous and temporarily restore a reasonably normal mouth feel. So, to control the pain, I'd load up on narcotics & swish some 'Triple Mix" (aka "Magic Mouthwash")... then, to restore my mouth feel, I'd wash my mouth with Coca-Cola. This would bring some temporary relief and I'd be happy for awhile.

There are other mouth washes that can be useful at different times. (1) Salt Water, (2) Salt Water with Baking Soda, (3) a product called Alkalol, (4) Biotene, (5) Tom's of Maine. Try different things and see what works for you. Your mouth and throat will be changing constantly through this process... the problems (and solutions) you have one day will morph into a different set of problems (and solutions) a couple days later. There is no one answer.

Hope that helps, Rob

Pam,

It will help all of us answering your posts if you include your particulars in your Signature Line especially dates. That way we know where you are in your Tx without having to search your previous posts.

David,
Thanks for the posting tip - I've been reading everyone else's signature, and never looked at my own. Updated.

Still in a quandary over the ROs. Don't know how to pick.

I met with a local (7 mins from home) RO earlier this week. He recommended Induction chemo followed by chemo-rads with Amiphostine (sp?) to try to protect some salivary function, then surgery only if needed last (probably just to clear out nodes). Today, I went to a larger cancer center (not CCC, University of Cincinnati Barrett Cancer Ctr) to meet with another RO (and an intern, and two med students). Recommended plan given was rads w/out chemo ("we've got a good shot at taking care of the primary with radiation alone"), then surgery to clean up the nodes - no amiphostine. He was not against the chemo-rads, but thought it would cause much more damage to my body. He would only consider induction chemo if the cancer had spread beyond locally, and said this type of cancer does not typically do that. He said there was more than one road leading to where I wanted to be. Both doctors are highly recommended, seemed competent, and were likeable (as were their staff members).
The larger center is 25 mins away, not an issue now, but I'm wondering if I could make all the treatment dates in the middle of winter (we usually get a couple of semi-bad patches, and one bad storm a year that limits interstate access).

I'm beside myself - the ROs each think the other is a fine doctor. The MO I'm seeing Monday (16th) has offices at the Hematology-Oncology ctr with RO #1, but has also worked with RO #2. Both ROs agree the MO is great. So, I'm still where I was a week ago, agonizing over 2 ROs, and still not feeling up to the task of making this huge treatment decision. For whatever reason, I'm not suffering over the MO.

My PET was yesterday - MO will give me the results Monday. I've been making myself crazy, certain that I have obvious symptions of cancer in other locations in my body, and hyper-sensitive to anything that anyone could possible suspect was the slightest bit abnormal. I have NEVER been a hypochondriac, so this is bizarre - trying to breathe and wait for Monday - I dread it, but can't wait 'til it's done with.

So, there that is - feel like I'm exactly where I was a week ago - running myself in circles in my head.

Be well,

- Pam

Pam,

If you miss a date (bad weather) you can always make it up. One day here or there is not going to make that much of a difference.

I did Radiation only. I read here about those who did Rad and Chemo to make sure they did as much as possible and brought that to my ENT�s and RO's attention. "Shouldn�t we be as aggressive as the folks on the OCF?� I asked.

RO said he would have gone that route if my original tumor was invasive (it was minimally invasive) and or if it had metastasized to the nodes (CT was clear).

I think most here who had both BOT and nodal involvement had chemo too.

Anyone else want to comment?

Kelly

I would avoid the ND if at all possible and I don't agree that our chemo really messes up your body.

Here I am again, probably being really stupid, but I have yet to learn the abbreviations you "pros" use. E.g., what is MO? What is ND? I printed the List of Abbreviations listed at the top of the main forum page, but these aren't on there, and I don't think I got a complete list. Is there another list somewhere? Thanks.
julieann

Julieann

MO = Medical oncologist (chemo doc)

ND = Neck dissection

I dont know of any other list around, maybe someone else does. You will get the hang of the abbreviations. If you dont know, just ask and we will help.

Thanks, Christine:

I'm slowing learning, s-l-o-w-l-y.

julieann

Julieann,

The second part of this blog site is "Frequently Asked Questions". A thread in that forum is "Abreviations for common terms" where you will find the meanings of abreviations used in our blog. That is how it helped me when I started here.

Jojo

Pam
Chemo, depending on what you have is no all that bad. It also depends how (i.e. how many you get). At this point I have no long term effects from my chemo (as far as I know), the lasting effects (to date) are from radiation and surger
The way I see it: surgery purely local, radiation, local + regional (depending on the irradiated volume) and finally chemo which is systemic to kill of stuff that escaped (and which you do NOT see yet by a PET).
As far as Ethyol is concerned. This really depends on where you irradiate, especially with IMRT. You may not need it. There are 3 pairs of major glands (sublingual, submandibular and parotid). You need to talk with your RO (not MO) about this, the RO knows what structure/volume gets nuked and by how much. To give you an idea, my sublingual and submandibular glands are toast but the both parotids survived. I did not have it.
Re location of RO..... once you have set your radiation plan there is not real need to have this done is a big center. The question is where is the IMRT (not the RO) because you need to go there 33+ times.

Best

M

Pam

Have to agree with DavidCPA and Markus on this. Chemo is no big deal when compared with Surgery and Radiation since both of those are the gifts that keep on giving, while Chemo (with the exception of possible high tone hearing loss with Cisplatin)runs its course rather quickly and then lets you go about your business.

Charm,

I would argue that the drugs used for oral cancers may not have long term effects, but other chemotherapy, for other types of cancers most certainly do. I suffered premature ovarian failure after high dose 'ChoP' when I was 28, in other words, I lost the ability to have children, which isn't insignificant.

Just to clarify...

Team,

I appreciate your comments - they give me better food for thought than my own back-and-forth.

OMG! While reading the post by Markus, I just realized that I made sure each center had a linear accelerator (both do), but did not ask if they utilized IMRT, and if that would be the proposed plan for me - I just assumed.

Each of the ROs is in a center (again, just cancer center, not CCC) with diagnostics, chemo and rads all in different departments or offices within the same bldg.

Now I'm wondering if RO2 automatically goes with radiation alone unless mets, or if he was concerned I would become too physically vulnerable during chemo process.

Now I'm having more fun - after bronchitis just before open biopsies and rt. tonsillectomy (got steriods and meds 2 days before surgery), hospital noticed high glucose level - did another test, and doctor's office let me know today I have diabetes. I have always been on the "healthy as a horse" side, and am just amazed.

Oh, and Julieann - I'm with you on the learning s-l-o-w-l-y.

And Davidcpa - you're who I want to be when I grow up - it eases my mind a little each time I read you signature line (dx similar to me "riding my bike . . .")

Be well,

- Pam

Sorry, I hope I did not confuse you. A linac (lots of cool physics in there) just makes the Xrays, the IMRT part controls the intensity and area resulting in a selected volume.
My guess is that they both use IMRT or similar. I ended up getting IMRT in a small place in GA. They did have a brand new IMRT (and knew where what they are doing).
I did not have mets and still had chemo, on the other had you need a big enough number of (active) cancer cells to show up in a PET, so if you SEE mets you know what needs to be done.
To chemo or not to chemo depends on how local the cancer is how paranoid you and your RO/MO are and last but not least how well you can handle chemo.


M

Can I ask, Markus - am I right when looking at your signature to think that your first rad and chemo were on the same date, then a couple of weeks later, you switched to a wider rad field, and switched from Erbitus to cisplatin, then added in carbo (is that carboplatin?) Was this your plan from the start, or did you change the chemo drug and IMRT field based on ongoing diagnostics?

Did you see people in treatment who were unable to complete planned chemo? Do you know why (I'm assuming side effects, but which is my question)? From what I've seen, a couple of places around here have what I'd call some sort of chemo "lounge", with several people in comfortable chairs receiving treatment in one large area. I have no experience to draw from, just what I've seen on a couple of centers' websites and on TV/movies. Did you see/communicate with others in/during treatments?

Pam,
I had surgery first. (minor, 1/4 glossectomy). Then radiation and chemo, the idea was to use something more modern... I.e. Erbitux. well he problem was I had an anaphylactic shock. So that was a no go (long story). We changed the MO and started with cisplatin, which caused ringing so we switched to carboplatin). So you can see we adapted. I still say that my first MO was an idiot. I and my wife (MD) told him that we suspect that I might not tolerate Erbitux because of prior exposure to mice, so we wanted a small dose.. that did not happen.. (funny in retrospect, as many things are).
The reason why the field was widened was because the guy who put in the peg saw a bigger area, so he ratted on me (good man) and talked to the RO and the rest is history. Re chemo, some people have 3x while I had weekly treatments (7). I think this makes more sense and is tolerated better (lower dose).
When I was in the chemo lounge my first though was, goodness, they all look sick (and old)!! WTH. I was the only one in my "lounge" 5 minutes from home treated for OC. I did not much communicate much with others during the chemo, everybody was reading, watching movies (laptops, TV) or working. I had absolutely no idea what to expect beforehand.... so you are way ahead there.
...... The point is, stuff happens and there are very few people where everything happens according to plan. It is probably better to be prepared to change treatments as things develop... not really a bad thing.


M

Markus,

"The reason why the field was widened was because the guy who put in the peg saw a bigger area" - does that mean he looked at your CT or PET, and thought the treatment area was too narrow?

Exposure to mice? Wow. As in, consistent caregiver, or occassional exposure? Stupid question, but was it mice in particular, or any rodents? My son and his girlfriend had a gerbil "village", and I did play with the critters a few times. Did your MO bring up the mice issue, or was it good research on your end (OK, MD for a wife would be very handy, I'd think).

Hey Pam,
The PEG man (gastroenterologist) saw white patches and he communicated that to the RO. There was nothing on the pet, then again you need a sufficient cell mass for it to show up. Realistically, it was just a suspicion without any additional biopsy. For all we know it may just have been leukoplakia. Whatever this was, all of that is gone now. Widening the filed was the conservative thing to do.

Re mice. I used to work with mice in the lab eons ago. (basically the type of mice they use to make MAB's... ie. Erbitux). I would suspect that this is very very rare and you also need a specific mouse strain. We told the MO that I "might" be allergic... call this paranioa on my side (I just hate to be right). So we agreed on a small trial dose, which did not happen. In any case if you get Erbitux or anything else (chemo) the first time you want to be careful.

MD wife... it is very handy but can also be a problem. When you take her to visits the physicians tend to talk with her ... not me. WTH! So we stopped that and I went by myself (.... after some discussions..). Also, when they (MD-wife) are not upbeat, you just know that now you are going to kick the bucket!

M

Pam,

Thanks but I want to be Bill Gates if I ever grow up. At my age I doubt either will happen though.

Hi Rob,
I had an ugly experience with JHU. My brother new a guy in high places who recommended I call a surgeon from JHU. I paid for it on my own nickel and met him. I wasn't even aware that I should have tried to see an ONCOLOGIST, not a surgeon; I was so green I didn't even know what an ONC was.

He just pushed surgery the whole way. It was a turnoff. He even said he'd present to the tumor board (a group of diff docs who make a group decision) and he didn't. However, in looking for an ONC at JHU after that, I found out that they only have ONE H&N one there as the other one had retired. She supposedly came out of retirement but only took appts one day a week to help out.

So although JHU gets high marks for Cancer research and expertise, I am not confident that they're experts in the H&N field.

Joel

Hi Rob,
What was the lotion that you used for your neck? Also, if anyone else has recommendations, they're greatly appreciated.

Joel

All,

The jury's returned. I met with the MO (first time) yesterday (Monday, 16th 2009), explained the three different opinions I'd gotten from the surgeon and two ROs and pulled the "What would you say if it were a family member of yours sitting up here on the table?". After getting the "there is no wrong approach" speech, I got the feeling that he did agree with the IU to be followed by concurrent chemo and rads, and commited myself to the plan. I go in tomorrow a.m. (oops, not tomorrow - 7:30 this morning now - arghh, too wired to sleep, but know I should)to get a PICC line at a local hospital, then it's 9:30 Emend by IV (super anti nausea med), followed by taxotere and Cisplatin for a few hours, then back home where a nurse will hook up my 5-FU pump for the 5-day release. My insurance doesn't cover the pump being set up at the center where I'm already getting my treatments, but will cover a travelling nurse coming to me, go figure.

Very nervous, funny that after all this time of being frustrated that we weren't acting NOW, I feel like it's all a rush. I though day one would be Thursday, but got the call Tuesday that we'd do it all Wednesday (so I'm not really prepared, despite hitting the drugstore and dumping a goodly amount of money on bits and bobs I'll need (hand sanitizers for home, work, and car, bathroom products, etc.).

Now that the decision's made, I've got a couple of new contestants on what to obsess over - hmmmm.

Wishing you all the best,

- Pam

Hi Pam. I'm also in Cincinnati. My ENT is Dr Hellman in Anderson Township, off of Five Mile Rd. He was awesome. I don't think he could have done better with me. He did a biopsy on my tongue (stage 3) and set me up for surgery 5 days later (Sept 11, 2008). I went with everything he had to say. He also did a partial neck dissection on me and it was great that he did. He found that 3 of the 14 lymph nodes he removed, contained cancer. Five weeks later I started treatment at Anderson Mercy Hospital on Five Mile Road. I went through a lot and am in the area. Feel free to ask me any questions that you may have. Good luck and God bless. Deron