Hi all --

This is a new topic since the old one "About to start treatment" didn't quite fit anymore, since Barry started treatment yesterday!

Barry had his amiphostine, and had no problems with it -- of course he had drunk about 32 oz. of water in the 90 minutes beforehand like they recommend, and took a Zofran and 1/2 an Ativan. In fact, after the injections (2, one in each arm) his blood pressure went up very slightly (but still fine) which was a relief since BP drop is one acute side effect. Put cortisone cream on the two injection sites and no skin reactions. He did feel a bit queasy later in the day and took a Compazine; also one this a.m. He didn't get amiphostine today as he got his first chemo and they are trying to avoid his getting sick.

The radiation went OK -- yesterday it was long as they rescanned to check adjustments made Tuesday (rad oncologist said it was "perfect") and today it was only 20 minutes in and out. He put radiacare gel and biafine cream on neck afterwards and swigged some cold aloe vera. Barry brought CDs (classical blood and thunder) as he doesn't want to fall asleep -- afraid he will wake up and not know for a second where he is and have a panic as he's a bit claustrophobic. They pipe in whatever music you want...

The chemo went OK too, he fell asleep with his CD player and never turned a hair -- he had eaten a good lunch beforehand. Of course the nurse gave him an IV anti-nausea drug as the carboplatin is a powerful emetic. When he got home he felt a bit queasy so took a compazine. I think some of this is adjusting to the PEG as he felt a bit "off" in the stomach earlier in the week -- before treatment -- not really nauseous but burpy.

We got the thera-bite system and he's been using it, to get familiar with it and also for baseline.

Well, that's enough for now -- will update every so often and Barry will also chime in -- but right now he's trying to rest. We are both pretty tired as it has been 4 very long days this week...

Gail

Gail and Barry
I sincerely wish for both of you an uneventful, unchaotic, peaceful journey though your treatment protocol.
Best wishes to you both, we will be thinking of you.

MArica

Gail and Barry,
I too wish you both well. We are about a week ahead of you in treatments and are having similar experiences. Fun - not!
Peace,
Janet

Gail and Barry, Ditto the above sentiments.

Gail and Barry
Looks like I am just about on the same schedule as you guys. 3 radiations so far and first chemo on Monday. I am feeling pretty aprehensive about that. I was told I will return the next day for IV fluids to protect my kidneys. Where did you get the radiacare gel and biafine cream and what form or product is the cold aloe vera. I have had no information on any proactive techniques to reduce the effects of radiation. Seeing comments on this site you can bet I am going to ask on Monday.

Hi Paul. My rad nurse gave me all my creams and such. The Biafine, the Vigilon pads and later the triple antibiotic. The only thing I had to buy was the Miles Mixture and the 5% Cortisone cream for the itching. They even had the Ensure and the Boost but none was sugar free or they would have supplied that also.
Ask when you go. I am sure they will supply it.

Good luck Barry,
Barb~

Hello Gail,

Spunds like things sre progressing in a normal range for his treatment. I slso had Carboplatin
& Taxol for over a year.had no side effects other than being a littlr tird someday days. Nothing a good nap wouldn't cure.
Hoping he sails through his treatment with as little side effects as possible.
Take the advice of the above postings and use the search engine to look up just about anything on oral cancer you can think of. It will have been discussed in detail in the past. if not ask on the forum and someone with similier treatment should respond.
You are now part of one huge international cyber family with one goal of educating people about the diaease and another of getting the word out "Early Detection Saves Lifes"
The road ahead will be rough at times but many of us have traveled it and survived, He can to!!!

All my best, Danny Boy

Hi all --

We are chugging along -- Barry was somewhat more nauseous yesterday (after the amiphostine) -- kicked in later in the day -- just a bit queasy so he took some more compazine and sipped flat ginger ale. And ate lightly. I am going to try to find some ginger tablets as they work well for mild nausea without the side-effects of the other drugs. (I have some experience with this being a marine biologist by training and having to deal with students with sea-sickness -- if you want to talk about *nausea*!) -- it is also good to nibble on dry saltines -- of course this is out if someone has mouth sores -- to not let your stomach become empty nor over-full etc. Ginger ale (the real stuff with actual ginger in it) helps as well.

He is not sure how much of his nausea is the ethyol, how much the lingering chemo (although he is getting strong IV anti-emetic with his carboplatin and he's getting 6 small doses rather than 3 larger ones) and how much is due to having the PEG inserted Monday. He had his gall bladder out a few years ago and since then has found that his stomach is more sensitive to certain foods (esp. fatty foods) and more inclined to burp -- occasionally uses Prevacid for this -- and since the tube insertion has felt much more "gurpy."

I did have two questions -- any other tips for mild nausea and also, the relative effectiveness of Zofran, Anzemeb and Kytril? He doesn't have prescription coverage yet (on Medicare so their prescription coverage won't kick in until after his treatment is over) and we were a somewhat taken aback at the cost of these meds. Roche (Kytril) has a program for seniors on Medicare so if this works as well, we may contact them. We do have some Zofran for next week.

Well, a weekend off and a chance to catch up with all the garden chores -- miserably hot and humid (and polluted) so not anxious to go out!

Thanks to everyone for the encouraging thoughts,
Gail

Gail
Pete suffered from what they classed as intractable nausea, after trying all the usual Zofran, reglan , anzemeb etc we ended up with a compound suppository. That was the only thing that worked for him.
I will reiterate , nausea control is absolutely essential. The resulting dehydration and weekness can lead to a hospital stay and you don`t want that.
All the best
Marica

Hi --

Barry's nausea was mild, that is, no vomiting or even feeling like he was about to vomit -- but churny and queasy as if he *could* be sick to his stomach if the feeling persisted or got worse.

Today he is fine -- has been eating regularly. I did find some ginger tea and also, crystalized ginger at Trader Joe's. The latter is very strong, you only take a tiny bit and swallow it. It would probably not do for anyone with mouth sores but it is good for nausea. I think the ginger tea has possibilities.

Marica -- sounds as if your Pete had same stage and treatment as Barry is having (chemoradiation, no surgery). It is encouraging that he is doing so well now. I will keep your advice on the suppository in mind in case Barry does start to develop nausea that canno be controlled by oral meds.

Gail

Gail,
My husband found that peppermint tabs - even just smelling them when he felt nausea from the Ethyol and chemo - helped. Also found pressure points to the wrists to help.

Anita

Has anyone tried those wrist-bands they sell for seasicknesses? (Of course not as primary anti-nausea treatment but as a back-up). I have always been a bit skeptical of them but I do know acupuncture works so who knows...?

Gail

Gail,

I've used one for mild sea-sickness on a cruise (haven't tried them for other types of nausea, since I rarely get those). It did seem to help in that case -- several other people in my family also had good results with them.

It may be worth a try -- you have to get it positioned in just the right spot on the wrist, but once you figure out where that is, it's pretty easy. If it helps, you've got a "solution" that doesn't involve one more drug in your system.

Cathy

Gail, my husband got them but didn't think they worked for him. Acupuncture did the trick though. He used it all through radiation and had very little trouble with nausea and not that much with mucositis for that matter. He still uses it now for pain relief, xerostomia, and a few other issues. His acupuncture doctor is on staff at our cancer center's integrative medicine unit. Unfortunately, its not covered by insurance and he pays $80 per appointment (once a week). I think it can be even higher. I remember he stopped going the last week of his radiation treatment for a week and started getting nauseas and then resumed the following week and the nausea went away. He didn't have chemo, so I don't know how acupuncture would have done for the combined treatment. Jerry never had to take any medications during treatment except a pain medicine. He attributes it to the acupuncture, but who knows, maybe he was just lucky.

Hi all --

Just an update -- Barry finished his first week treatment today, 5 1/2 to go and they will be the hard ones! So far so good -- we did get some help on that heartburn and burpy feeling which was making him feel slightly nauseous -- spoke to RO and nurse and they prescribed Reglan (metoclopramide) which stopped it. Took it 15-30 minutes before eating and it did the trick; this and Zofran before the Ethyol and he only felt a little queasy so nibbled some crackers on the way home. So far he's eating fine and maintaining weight but we know this won't last. The hardest thing is for him to continue drinking after swigging down 24 oz. water in 90 minutes for the Ethyol injections but you need to do it to get it out of your system (plus for the other benefits of being hydrated.) We've found Edy's fruit ice bars to be a good "liquid" -- also Jello.

Tomorrow his daughter is driving him up for chemo and rads as I have to take my older dog in for surgery -- it will be good for her to meet his team and also, see first hand what he is facing in his treatment. I only hope they don't get lost in Baltimore! (I lived there for 5 years so know it well).

Gail

Hi, just a little update -- now finished day 7 treatment and so far so good -- the Reglan seems to have pretty much solved the nausea problem as it stops Barry getting that "bloated" feeling which, exacerbated by the peg, was causing a lingering queasiness. Today no problem. I am still amazed as to how well he's doing with the chemo-- that was yesterday, so he didn't get amiphostine, just the carboplatin -- came home all bouncy (his daughter took him in) and ate a huge supper. Our neighbor had baked him a fresh peach pie and he really enjoyed that -- he is trying to eat all the stuff he likes now as he knows he will be losing his taste fairly soon and won't be enjoying food, even if he is able to continue eaing some by mouth.

We have spoken to various others getting radiation at Hopkins for HNC and it seems the intensity and duration of the mouth problems vary a lot -- many people don't do anything until problems develop whereas Barry's been doing stuff all along (aloe in mouth, l-glutamine and salt/soda rinses, as well as our little Manuka honey "experiment"). However neither of us is naive so we are just waiting for that shoe to drop and enjoying the "calm before the storm" so to speak...

Barry's kids bought him a portable DVD player (a belated birthday present) to use while he waits for chemo, which can be quite a while -- also his daughter brought over the humidifier we bought her for Xmas as she says he needs it more...

Would be interested in others' experiences as to when they atrted to get mouth sores, thick mucous/phlegm and loss of taste...

Cheers,
Gail

Gail,

I managed to coast through the first 2 weeks or so with very little noticeable impact, other than the fact that during that period I started to detect that my taste buds were deteriorating a bit. In general, I felt so good and upbeat at that stage that I thought all the advance warnings about radiation had been over-blown. (I was 39 and otherwise in good health at the time.)

There was a good team of oncology nurses at my radiation center who monitored me closely and kept track of my nutrition and medication, but even with that, I was surprised at how quickly some of the nasty side effects kicked in around the third week or so. From then on, until a good many weeks after the end of treatment, it was an ongoing battle against mouth sores, occasional infections, evil phlegm and swallowing problems. The good news is that over the years, many of the specifics have become a rather dim, distant memory for me.

Good luck to you and Barry as you keep going -- it sounds like you have a good routine set up to get through these next few weeks.

Cathy

Oh, Gail. Well, we were coasting along well into the second week of treatment. My dad was eating pizza with us on a Saturday and by Monday his mouth was sloughing off. I don't say this to scare you, I just wish we had many stories that could have prepared us. With this mouth sloughing came 102.1 fever spikes, a week long hospitalization and a delay in treatment. Having said all of that icky stuff, I am elated to report that the week break and antibiotics brought my dad a whole new mouth!! He is 100% and is finishing his 4th week tomorrow. His spit is almost normal too...
So, in preparation for the worst-I PRAY you don't go through what we did--
Get a suction device for the icky thick junk from a Medical Device company; stock up on viscous Lidocaine and magic mouthwash (have them add Karafate); get your pain drugs (Fentanyl patch for long acting relief and liquid Oxycode for short-for example) ahead of time. Take great caution when he starts taking them if he has no tolerance to narcotics-like my dad didn't.
What happenens is that the sores brew from the inside out then, BLAMMO...
It was a blessing for my dad that he got the break because then he experienced how fast the mouth can heal. It gave him new strength. By the way, I don't think he would have been in the hospital for so long, but that is also when he got his PEG inserted. I am so excited to see how your Honey trick works. I have read many things about that. Unfortunately, we tried the aloe swish too late and it burns my dad's mouth.
It is so funny, when we go in for the chemo (overnight) we bring in our DVD player with funny movies--it is a good thing!
We know we will have another bad wave before this is over--but, HIS TUMOR IS NOT EVEN DETECTABLE!!!!! Went from huge lump to----GONE in 4 weeks! Hooray chemo/rad.
Oh-his neck is starting to have that radiated look too--
Good luck, I will be looking for yor posts!
Shawna

Hi Shawna --

Glad your Dad is doing better and that the tumor is going away! Wonderful! Chemoradiation really does work -- someone we know in Australia two weeks ahead of Barry had same experience, they had to make a new mask as his tumor went down so fast.

I had heard how quickly the sores can hit -- will be sure to ask Rad nurse tomorrow for oxycontin and/or Duragesic script as we have a weekend coming up -- know someone else who got caught at the weekend and WOW! Pain city!

Barry does have his peg already in so at least we are prepared in that fashion...

Thanks everyone for the suggestions and inut -- we are forging ahead!

Gail and Barry

Hmmmm...I will have to inquire about the new mask, it makes sense. Good about the PEG, good about everything. Hang in there and have a nice weekend! Will send some prayers. Go HONEY and Aloe!

Hi all --

TGIF! Barry went through 8th treatment today, he didn't take the amiphostine -- was all prepped (hydrated, Zofran) and our nurse came in with the shots, and checked him out. She didn't like the fact he had a reddish area around yesterday's injection (she didn't do it, another nurse did, and -- for the first time -- Barry said it "hurt" -- it was given on his upper arm and not in the fatty area which our nurse prefers). She felt that this indicated a mild skin reaction which, if it becomes widespread, means the drug has to be stopped. She also said she's seen these small reactions never amount to anything -- but after some deliberation we all decided, what with a weekend on hand it would be better to skip a day and do it Monday (assuming the red area went away) when he would be seeing Dr. and nurse. He's getting pretty good parotid-sparing with the tomo and the Ethyol is just a "boost" so not as essential as it might be with less targeted radiation.

So toss one Zofran and 2 Ethyol sticks -- heck, it's only $$!

But without the amiphostine Barry had none of the mild "off" feeling which seems to accompany the drug for him, and was able to go to Hopkins cafe and get an excellent lunch.

Our nurse weighed him and he seemed to be down 3 pounds from yesterday, which none of us could fathom -- so I got on the scale and it read -- 3 pounds low (hey, I *like* this scale!) -- I weighed him at home and he is same weight on our scale as yesterday. So holding his own. Mouth OK as well but he thinks it does feel more "puffy" inside so we are waiting for that mucositis shoe to drop...

Did discuss pain plans and scripts today -- thanks to all for suggestions.

Have a great weekend,
Gail and Barry

My dad used the Ethyol for 2+ weeks then began to get site irritation. He had pretty big patches of irritation. He has stopped taking it. We are hoping the IMRT can spare one of his parotids-as he said to his parotid gland: "You're on your own now buddy." He felt awful from the Ethyol-fluish.
Have a nice weekend break!

Barry's irritation spot was only on one side where he was stuck, and about 1.5" in diameter if that -- pretty well faded now, we shall see about Monday. I gather if he continues to react they will stop it, if not, will proceed with caution. We do get a mid-week break as they don' t give it on chemo days.

Have you seen your Dad's IMRT plan? We looked at Barry's with RO, he wanted to show us how much of his parotids were being spared with the tomo -- to reassure him in case he couldn't continue with the Ethyol. I know the RO who did Barry's plan (whose specialty is parotid-sparing and also, amiphostine) said the drug adds about a 9-10% boost to the sparing possible with IMRT or tomo, (this from my consult notes, I do not have the reference). So it is not the "be all and end all" -- the radiation plan is more important. We will also meet with dental onc on the 30th, whose specialty is saliva and radiation dentistry, to evaluate Barry's status. He is rather keen on the newish drug Evoxac, as is Barry's ENT who uses it herself (she had HNC 18 years ago).

Gail

Gail and Barry, it sounds like you are doing weel at this point. I had a little grin at the "whose scale\what weight" issue. On the 4th week of John's rad tx, he weighed 152 on our scale at home on Mon. nite, 157 on the rad.dept scale on Tues. and 160 1\2 at the oncologist's on Wed. One day at the rad dept., he weighed back in the rad waiting room and then 35 min later on the scales down the hall in the Doc's exam room-3 lbs difference between those 2 scales! He just chose to believe the reading he liked best. Have a good weekend . Amy

Hope everything cont to go well.Jerry just came out of the hospital Weds.He was in 15 days.Rad is finished and chemo is on hold for now.He had a staph infection in his port and it was removed,plus dehydration,kidney failure.In the last 2 weeks he has recieved 4 units of blood and enough IV antibiotics to kill every germ on earth.Good luck and I hope you have a wonderful weekend.

Hi people,
We all seem to be at about the same level. I have had eight radiations, taste issues have started and the Ist Chemo on Monday left me feeling icky but not too bad. I was given a steroid, Compazine and Ativan. The Ativan works well just sends me to lala land I am not too sure what the other stuff is doing. I feel bloated. One little hiccup my front ttoth chipped today so I do not know if I can get that dealt with or have to wait. I know I am right at the start of all this and I can only take my hat off to those of you that have made it through..heres counting the days....

Hello Gail and Barry...just wanted to let you know that there is a fellow Hopkins patient out here. I had my neck disection on July 18, 2003 and finished my radiation treatment October 31 (Haloween, thought that was appropriate for how I felt)...you are coming up to the rough part of the road but you are in great hands at Hopkins and they'll take good care of you. Oh the memories of driving down into that parking lot every day....hang in there, you'll be fine. Wish I would have had a peg...lost 50 pounds...sounds like you have everything planned. Be glad to answer any questions you may have...best of luck....Gary

Hi guys,

Just a little check-in -- still plugging along. Barry is up making himslef a smoothie with chocolate Boost Plus and French Vanilla ice cream, also 2 tbsp of coconut milk (megacalories) -- he is keeping a food and water log today as yesterday he realized he didn't meet his water intake "prescription" nor as many calories as he probably should eat (now while he still can). Neither of us are big eaters normally and it was hard for him to force all those heavy foods to gain weight -- Now his body wants to get him back to his nice "perfect" weight which unfortunately is 12-14 pounds below his current weight.

Major symptoms are an intermittant sore throat -- he has a base of tongue tumor so that area getting hit hard -- which so far can be relieved with mouth rinses, and (as he describes) a weakening of the taste of some things. However sweet things still taste good at this point. However, obviously this is all going to get a lot worse over next few weeks. His energy level is good and he is using his Thera-bite and mouth opening fine. Trying to rest some today for another week-- argh!

Gail

Enjoy these moments and remember them. Thinking of you 2.

Just keep doing what you're doing, Gail and Baryy, sounds like you are doing great. Who knows, maybe Baryy will be one of the lucky ones who has an easy time overall through the whole treatment. Definitely enjoy the sweet stuff while you can though!

Hi guys --

One-third through radiation today!! YAY! And also, one-half way through chemo! DOUBLE YAY!

So far so good, everyone is saying how remarkably well Barry is doing, considering, but of course it is still a long way to go...One recent bump, he got a thrush (yeast) infection in his mouth which they caught on Monday, he's been on Diflucane since then, it seems to be getting better but back of soft palate (where most of the infection was) still pretty sore although the white patches seem to be gone. He can still eat OK just has to be careful, and is using Gelclair which helps. We are keeping a food/water diary and that has also been useful to try and reach his goals of ~2000 calories a day and at least 72 oz. liquid. Just soft foods now. No mucositis yet, thank God, tho the nurses say they usually see it from 10-15 days and we are only at day #12. He is seeing some taste changes, not loss of sweets just mostly an "off" flavor to things. Some other things still taste good -- like vegetable soup and rice pudding.

One interesting thing, both medical onc. nurse and nutritionist said that they are seeing less severe mucositis and thick phlegm since most of the HNC patients have been put on the tomo machine. Not NONE (that would be too much to ask!) but less...and more manageable. So we are keeping our fingers crossed.

However, not being foolish, we have ordered the PEG food, they do not use Boost at Hopkins but a formula specially developed for gastric feeding with less sugar and without the fake flavor. I bet we will need it, even if just to supplement caloric intake. I can see how hard it is to stay on top of that. Barry's normal daily caloric intake (pre-diagnosis and treatment) would have been only about 1800-2000 calories tops and that is without the need to rebuild tissues damaged by radiation and to fight the cancer.

No issues with the chemo -- they give IV Anzemet and that seems to last a full day, by which time he's taken his Zofran for the next day's amiphostine. His blood counts still look good although some are dropping -- next week we get vacation from chemo to regroup.

We emjoyed our new "toy" today while waiting for the chemo nurse -- a mini-DVD player with twin earphones -- Barry's kids' belated birthday gift, very appreciated.

Well, need to go finish watching the movie -- which they interrupted to give him his chemotherapy -- no consideration!

Best., Gail

Thanks for the update, keep truckin'! Hey, I just thought of something. Someone on this site had suggested that my dad use Biafine Cream for his neck, it is starting to get that look and feel. I was pretty disappointed that the manufacturer advises using it from the beginning of treatment and we just got it now?? So, if you guys aren't already lube-ing up the outside of Barry's neck with something, that may help as a preventative type thing? My dad had thrush too. He squirts Fluconazole in his tube. It cleared up very fast. We don't use Boost either-
Again, another week almost finished!!

Hi --

We started the aloe and Biafine week before treatment, thanks to the "Image Recovery Center" at Hopkins which sells a lost of the anti-radiation etc. supplies. The gal there advised us to do this. Barry's skin looks very good, considering, so it probably helped.

Bit of a disappointment today -- got all the way to Baltimore and the tomo machine had just gone down after about an hour's treatments. Everyone sat and waited for the engineer etc. and finally, it was apparent that it wasn't going to happen today. Luckily Barry didn't take the amiphostine (they don't give it until they know the schedule is on time) but he did pop another Zofran 90 minutes before so more $$$ down the drain! Bit of a downer, once you are "ready" you want to get it over with -- all the folks waiting looked unhappy as they all love to go home and cross one more D----d treatment off the calendar!

Gail

Hi all --

Just a little update, Barry is doing okay but has a pretty sore mouth -- well, back of throat really where the thrush is (it is going away but slowly and area still very sore-looking, while front of mouth, gums and tongue OK). I would not be surprised if this darn infection is going to end up being full-blown mucositis in a few days as it seems to have caused a lot of tissue damage on top of that caused by the radiation. Still using GelClair (it does help) plus various rinses and aloe.

He did take oxycodone when it was worst and is now constipated. One symptom after another! Taking Senacot and but chemo nurse recommend "Smooth Move" herbal tea so will try and find that locally.

He's still eating by mouth but not fun so we are ready to supplement with g-tube when he feels he needs to do it -- Hopkins sent two cases of their preferred tube-feeding formula last night, plus big box of other misc. supplies so we are ready. He vows to keep swallowing some however, no matter how much it hurts, based on our ENT's warnings (recall she had HNC radiation 18 years ago so speaks from very painful experience) -- she is seeing a number of patients who relied 100% on their tube and now cannot swallow anything. Right now water and liquids are not a problem.

Well, maybe things will quiet down a bit over the weekend. Next Wednesday is 1/2 way through....

Gail

Good for you for being almost halfway through! Week 3 was the week when I suddenly got mucositis sores all over my mouth so it sounds like Barry is at about the same spot though doing a little better than I was (I was glad to hear they loosened Barry's mask slightly so his lips weren't pressed onto his teeth. Where I went, they would not try to loosen the mask around my mouth, where it pressed my lips into my teeth, even though I asked, and of course that's where I got the sores first and they STILL haven't completely healed in those spots). Week 4 was when I got my supply of Jevity (is that the precription stuff you got or does Hopkins use somehting else?) and by the end of week 4 the pain had gotten bad enough that I was pretty much using the tube for all my nutrition.

If he keeps taking oxycodone, be sure to keep giving him senesol or something like that. My medical oncologist, who was at sloan-Kettering , swears that the number 1, 2 and 3 problems associated with pain meds are constipation, constipation and constipation!

You've actually reminded me I have a bunch of Gelclair left and since I'm still having bad mouth pain, maybe I should start using it. For some reason which I still don't get, the onc. nurse I saweveryday for the amifostine shots said maybe I should stop using Gelclair during my treatment so I did. I wish I hadn't. But I'm still having mouth pain and it can't hurt to start using it again-it cost enough!

Nelie

Hi --

Just an interesting little update -- Barry got a call from the HPV study nurse -- they had requested his tumor (right tonsil) from hospital where tonsillectomy was done and tested it for human papilloma virus -- it showed "strongly postive" for HPV-16. This is actually supposed to be a positive prognostic factor, an on-going study at Johns Hopkins is showing HPV-positive HNC patients show a better response and there is some evidence that these tumors are biologically different from ones in smokers. (Quite a bit on OCF web site on this, btw).

I am now going to get tested as well as it can be transmissable and of course, primary cause of cervical cancer. These HPV tests are being done fairly routinely now...

Gail

Gail, Very interesting information-makes me wish they had tested my tumor....

Thanks for that HPV info-it's amazing the things you learn from others when you keep an open mind. Today I called to see whether they had tested the tonsil tissue for HPV when they did the biopsy. The "computers were down". Thank you so very much for bringing that up...I watched the on line lecture. So interesting, sounds as though Barry has an even better future--wooo hooo! 9 more rads for us to go!! I can't believe we are in the single digits.

Hi --

Short but interesting meeting with our medical onc today-- Barry's at the half-way point Thursday (YAY!) although he will just then be hitting the 35 Gy cumulative dose at which a lot of nasty things start to happen (like salivary glands shutting down). So we are ready for things to start getting worse, maybe pretty quickly.

MO thought he was doing very well at this point, his weight is still above when she first saw him though he's lost maybe 6 pounds (depending on whose scales we use!). She confirmed that HPV-16 positive HNSCC patients do better than smokers after treatment -- a 2000 paper by Gillison found 59% better survival -- MO also cited a Swedish paper that showed some evidence of transmission of the virus between partners so maybe a reason to get myself tested.

Since Barry's blood counts are holding well we are going to have another chemo tomorrow rather than skip a week -- keep those cancer cells jumping! He's had no problems with the carbo at all, the ethyol is more of an issue. But today we noticed that he didn't have any residual queasiness afterwards which we thought due to 1) his getting a good lunch of soup and 2) being too darn busy with doctors' meetings to sit and think "hmm, I feel a bit off..."

Also, his thrush is really abated - thanks to the Diflucane and also, probiotic kefir which a friend ( a virologist) recommended. But it will probably be a constant battle as his mouth gets worse.

Gail

Gail, my experience with carboplatin plus taxol was completely free of side effects, except for hair loss due to the taxol, so I don't think you need to worry about that part of his treatment. Was not nauseated at all, which is always a plus.

Joanna

Hi Joanna --

Barry's (and his MO's) concerns with the Taxol was since some peripheral neuropathy occurs in over 60% of patients, and he has benign essential tremor (a hereditary, progressive condition that his dad and unfortunately, his daughter, also have) -- they could not be sure that the taxol might not exacerbate or hasten the deterioration. Since the trembing of his hands and arms (now controlled somewhat by medication) greatly interfers with his ornithological work he opted to forgo the taxol with MO's concurrence. She also said she had no hard data to show it gave a significant (that it, statistically significant) improvement. He is getting 7x carbo treatments and like you, has had zero nausea!

When he told his 98-year-old mum in England about his illness and upcoming treatment, she took it very coolly, first asking "are you going to lose your hair?" She is 100% "there" mentally and so asked about radiation damage to other organs and what his overall prognosis was -- she said, "well you are in good shape and have never smoked so you should do OK" We were very worried about telling her but Barry conferred with his brothers and they all decided she needed to know. She was suspicious anyway -- about the tonsillectomy - you know how mothers are...

Gail

Hi all --

Well, we are now past the half-way point and on the count-down to the end of treatment -- 16 down and 16 to go! Barry's doing remarkably well -- according to his RO nurse -- still eating by mouth 100% though he has lost quite a bit of taste and that makes it hard -- some things are still good such as most soups, strawberry (go figure!), *good* but not cheap chocolate (read: Godiva ice cream) but it does change from day to day and will probably get a lot worse before it gets better. He actually gained some weight since last weight-in *if* you can believe the scales <gr>. This is mostly because we followed the nutritionist's advice and started to substitute caloric liquids for the water he was drinking before each amiphostine shot. He is also meticulous about mouth care and uses the aloe vera, honey and now a probiotic cultured product ("Kefir," which comes in about 8 flavors none of which he can taste very well except strawberry) to help keep his mouth and throat flora intact (and defeat the yeast infection). Oh, and also salt/soda and Gelclair.

If we can get through this next week without it all going pear-shaped (as the Brits say), we will be very happy...

Best, Gail and Barry

Gail,
Am I reading your post correctly when you say that oral cancer patients whose cancer is attributed to HPV have a 59% better chance of survival?? Or are you saying that their five year survival rate is 59%. I would understand 10 even 20 percent higher survival rate, but that 59% seems awfully high. I also thought that people who came by this cancer with no risk factors had a more difficult time? I would love to hear that this is not true.

Hi Gail,
I am amazed that Barry is still able to taste so much, but what amazes me the most is that strawberry is his favorite. Now I absolutely love strawberries, but could not taste or tolerate the strawberry flavored drinks of any of the protein products. Maybe it is your honey and aloe that is allowing him to keep his taste and still eat so late in the game. Glad his treatment is going so well and hope it continues to do so.

Take care,
Eileen

PS. I didn't find the Hagan Dass dark chocolate until years after treatment. I might have be able to live on that alone

Hi -

No, it was clearly less chance of dying from their cancer: "all patents with HPV-positive tumors had a 59% reduction of risk of death from cancer when compared with HPV-negative HNSCC patients." Gillison et al 2000. J. Nat. Cancer Inst. 92 (9). There have been other studies (several in Sweden) showing similar improved prognosis -- HPV-tumors appear to be different biologically. However there is still a lot to learn about the mechanism of how the virus induces cancer (is it similar to cervical cancer, for example), and could an HPV vaccine help in treatment?

Barry's in two HPV trials, which are double-blind so we will not know the outcome for his specific case, but one will follow viral load in his tissue and also, serum, as he goes through treatment. They take a lot of blood every two weeks!!

As to eating, it is a culinary challenge to make something Barry can taste and enjoy, tonight it was Maryland Cream of Crab soup -- packed with calories (all that cream) and he tasted it fine. I had read on the forum that seafood is often tasted while other things are cardboard. Anyway, when it gets to all taste like cardboard to him (we have no illusions that that won't happen eventually) not sure what we'll do...
(At least it doesn't seem to taste foul, like some people report.)

Signing off, another day another fine trip to Baltimore...oh well, gas is 40 cents cheaper there than here!

Gail

Gail, Congratuialtions on Barry doing so well. I'm sure it is partly due to all the preparations you amde and to your keeping up on what he's doping every day to be sure he's doing all that he should do.

Cream of Crab soup--yum. Though I don't know if it would BE yum for me now, and it certainly wouldn't have for me by the time I was halfway through rad. I was still enjoying the gourmet veggie cream of mushroom soup, I think, around then but everything else did have a bad "radiation" taste by then. Maybe he will be lucky and never have to do the PEG or have the bad taste at all--with al the honey and aloe as well as the other stuff you're doing. I'm glad it's going so smoothly.

Can any tumor tissue that has been frozen be tested for HPV? I have been wondering if I should request that test anyway since as you say it is linked to cervical cancer as well.

Nelie

Nelie

Gail and Barry
As a Brit I can relate to the pear shapped comment very well. I am receiving Rad 16 tomorrow and will also be at the half way mark. I was not given a peg and I am finding it very hard to keep up my calorie intake. Loss of 15lbs in three weeks but I was heavy to start with. I have no real throat discomfort but have terrible mucus prodution which causes dry retching from time to time (not pleasant at all). It really interferes with my hydration efforts. I am pretty fed up with boost and any vanilla flavoured nutritional drink right now. My second cisplatin treatment is on Sept 6th so that is something to look forward to after the holiday weekend! Keep posting it is good to read about another at the same point.

Hi Paul --

Yes, Barry is definitely British -- despite being in USA for 30 years -- his consult report starts off "Barry Cooper is a 66-year old British gentleman..."

I don't know why he is doing so well but we are grateful -- maybe it's all the good wishes from his many friends. Maybe it's the tomo machine. Maybe the aloe etc.?

Paul, are you using Difflam? Over the counter in UK and supposedly the best thing for mucositis and sore throat available so far.

Bank holiday (again as the Brits say) Monday (Labor Day) so we have three days to rest and maybe he can take in some calories and do more on getting this thrush infection gone.

Gotta go, TGIF!!
Gail

Paul, do you have a suction machine at home? You can suck that icky junk out--
Hooray Gail and Barry! I am so happy for you 2! Have a nice, relaxing w/e. Keep lubing up that neck!
Only 7 more tx for us-wooo hooo.

Gail
I am an Englishman in New York (State)so no I am not getting Difflam.
Shawna (my wife's name is Shauna) I don't have a suction machine, where should I start looking?

You need to get a script for both Diflucan (drug for thrush) and a portable suction machine from your dr. A medical supply house delivers it. Doctor can probably order it for you. Insurance should cover it or most of it. Mine is $41.xx a month.

Take care,
Eileen

Paul-Sting rocks and so does your wife ; )

What I meant to say in all seriousness is that yes-you need an MD order for insurance to cover. My dads suction machine is covered 100% by insurance. Med supply companies will rent to you if insurance isn't ivolved. Basically, exactly what Eileen said.

First problem is getting the medical staff to agree that it is necessary. The nurse said it was only used by patients with a trach. No thrush apparently in my mouth at this time, actually they are very pleased how well the mouth looks and little or low pain issues right now still swallowing pretty good.

Hi --

Are you trying guaifusein syrup? (sorry, I can never recall how to spell this stuff!) Barry uses it at night and also sleeps with a humidifier and so far the mucous problem hasn't really surfaced -- although the nurses say they are seeing much less of the ropy mucous with the tomo machine as more of the salivary glands are spared high dose of rad. Hopkins will prescribe a suction machine if needed and have a couple of HNC patients using one. No arguments, if you need something you will get it -- per our RO.

Barry had an "off " day yesterday -- first day he has been actually sick to his stomach in afternoon -- he ate at the hospital after treatment and the soup didn't agree with him and he had failed to take his Reglan. In any case, the end of the week is always the hardest for him as it is post-chemo and also after 4 days of amiphostine. And of course he is tired. Thank God for a long weekend, he ate well this am and hopes to get back to snuff by Tuesday.

We meet with dental oncologist then to review salivary and dental status and whether he needs to start taking anything now for xerostomia or whether it can wait. He doesn't have much dry mouth but he is just at the 35 Gy point where RO says salivary function starts to fail. Luckily most of his left and somewhat over half his right parotid are getting under that (in fact most of left is getting under 15 Gy total) but expect the right one will start to act up. It is already somewhat tender and inflamed which RO says is expected.

Well, hope everyone enjoys the three days off treatment --!!

Gail

Hi all --

Saw dental oncologist today -- he was very happy with Barry's progress -- lots of saliva still and no "ropy" stuff -- some mucositis at back of throat (as well as some thrush though that's on the wane for now) but not really nasty. Barry still eats 100% by mouth and has no swallowing or trismus issues yet -- Dr. said he felt that having gotten so far along (almost into 5th week) swallowing he should be able to do it all the way through. We shall see -- it IS sore when he eats (not when just sitting around) and he takes pain-killers before eating -- if it gets too bad we will at least supplement with the tube -- this is not a "iron man" contest, after all!

Still taking amiphostine, which dental Dr. says he thinks also helps with mucositis. He also thinks the tomo is a big breakthrough in avoiding oral cavity and jaw problems -- much more precise focus of radiation.

Chemo tomorrow -- #5 of 7. Then week 5 starts.

I'm getting to be an expert soup-maker ....Maryland cream of crab still the favorite.

Cheers, Gail

Gail, I know you've said that Barry is not taking Cisplatin and the chemo he is taking is not causing him many problems. Jerry was able to eat soft foods up until the beginning of Week 6 and then he switched to shakes with Boost. He was also able to eat Dole Diced Peaches which he said were almost somewhat soothing in his mouth. He had to take pain medicine about 20 to 30 minutes before eating. The peg actually came in handy for him to take in extra water because he ended up having a worse time swallowing water than the food-based liquids.

Connie

Hoi Connie --

Barry now is pretty confident he will be able to eat *something* by mouth all the way through BUT also thinks that last couple of weeks he probably will have to use the PEG to keep calorie intake up (or hydration). He is not resisting using it, just doesn't feel he needs it quite yet. He is eating soft stuff, soups, mashed potatoes, noodles, shakes made with Nutren and flavoring, yogurt, etc. -- as well as some canned fruits.

He has grade (2) mucositis on soft palate but not rest of oral cavity, but is being bothered by thrush which makes swallowing painful. He's trying a nystatin rinse to kick it back as it is not being completly knocked out by Difucane (waxes and wanes). Some yeasts are resistant, as we women know! Like your Jerry, he's found the pain meds help if taken before eating. Also using GelClair helps with soreness.

However they are all happy with how well he's doing -- as am I. We even went out birdwatching a few hours Sunday and Monday though his energy level is not up to a lot now.

Week 5 starts tomorrow -- 13 more treatments (out of 33) -- our check-off sheet now has more boxes "x'ed" than not! YAY!!

Gail

Gail,
That's really great! Hope the next 13 go as well as the last 20. I'm curious about the difference amiphistone makes. We asked for Jerry to get that as well, but his R.O. told us that there was no proven statistical advantage regarding dry mouth (and also mumbled something about it costing as much as the radiation). He said that because IMRT physically spares the parotid glands (or in Jerry's case, all of one and much of the other) that the amiphistone wouldn't add any benefit. Of course, this CCC still does conventional radiation for post-operative H&N patients. He said if Jerry had been given the standard radiation, he may have given him amiphistone. I found the whole experience confusing because we spent a lot of energy early on trying to get both IMRT and then amiphistone for him since neither were initially offered up by the R.O.

Are there any studies showing the statistical advantage of IMRT + amiphistone over just IMRT?

At any rate, it certainly sounds like its working well for Barry. Jerry definitely ended up with some dry mouth, but maybe it will be resolved between the hyperbaric oxygen therapy and the acupuncture treatments.

By the way, if you like bird watching, you ought to do it in Florida sometime. Every day, I pass Sandhill Cranes, Wood Storks, ibis, Great Blue and White herons, an occasional roseate spoonbill, and a host of other beautiful birds. The 'big birds' are really magnificent, some with a wing span of six feet.

Connie

"mumbled something about it costing as much as the radiation". It's true the cost is really high. Its interesting that your RO thought that with IMRT it wasn't needed though. Maybe it depends on where the cancer is and so where they are focusing the most beams of IMRT, but my RO told me that even with IMRT, my left parotid and a piece of my right would still be damaged so that the amifostine still can help save salivary function there.

Gail, I can remember marking big Xs on the calendar and how happy I was to sse so many. I think a check off system should be mandatory for every rad patient.

cclark, I had IMRT X 37 with no amifostine because of where the rad was aimed. More than three years later, I have probably 98% of pre-rad saliva. It took a couple of months to kick in, and probably 9 or 10 months to reach full capacity, but I only notice a diference now if the humidity is very, very low in the middle of summer. So if Jerry's rad onc says he doesn't need amifostine, he most likely does not. I was told that I would lose the parotid glands on one side, but they survived quite well. I went in thinking 50% was good enough, so was pleasantly surprised. Hope my experience helps you a bit.

Joanna, That's great to hear. I think I have read others say that it often takes a year or so for the saliva to get back to normal or somewhat normal. Congratulations, too, on being cancer free for 3 years. That's one of the really encouraging things about this site - seeing that quite a few people are surviving and with good quality of life afterwards.

Connie

You might ask your ENT about Evoxac -- Barry's ENT (who had HNC 18 years ago and had the old-fashioned cobalt radiation so has bad xerostomia) is very enthusiastic about it. She takes it regularly, and says it works especially well at night-time (no more waking up in the night to sip water). She prescribes it for her patients with dry mouth and says it's a lot better than Salagen. His dental oncologist also is a fan.

Gail

I guess different people react differently to Salagen. I also had conventional radiation (16 years ago), and some of my salivary glands were taken out during surgery as well, so the dry mouth problems were pretty bad for quite awhile afterward. However, I've been taking Salagen steadily for the past 15 or so years and have seen noticeable improvement over time. I can't remember the last time I had to get up during the night for water -- it was certainly many years ago. In fact now I keep catching myself drooling on my pillow at night!

Cathy

Pete tried both drugs and said he found no noticable difference when using them.
He is not a very patient man so, maybe if he had stuck with them a while longer they would have helped more.
His salivary function is greatly improved this past 6 months or so.

Marica

Hi all --

Just a quick update -- Barry's still holding up well, back of his throat is pretty red and irritated but no open sores -- the major concern is the thrush which gets worse for a while (and then causes more pain on swallowing) and then wanes -- he's using nystatin and diflucan to keep it under control. Rest of his oral cavity is good and the RO showed us his lateral plan to indicate that most of his jaw and all of his teeth are out of the high radiation field, which is probably why he's had very little gum, cheek or tongue soreness. His skin is remarkably good which I think is due to his aloe pre-conditioning and careful 3x/day treatments with aloe and Biafine. Of course he is tired and tries to rest in the afternoon. He's still eating by mouth, lost about 2 pounds last week but is still above his weight at DX.

We are both very very happy that there are only 11 more rad treatments and 2 chemo to go, hope things continue to be bearable. Soon he will be in the single digits 9..8...7..etc! YAY!

Gail

Hi all -

After the little peg-falling-out excitement Thursday we are pretty much plugging along. Barry has 7 more radiation treatments (and one chemo) and two other folks here are at same stage so they all felt pretty happy yesterday -- TGIF and light at the end of the tunnel! All three look pretty good externally (skin etc.) which is a credit to the nurses who are at the patients about using the creams and they are all talking and walking but of course getting pretty fatigued and ready to be finished!

The Ethyol make Barry nauseous again yesterday despite trying Anzemet so he will not do it again next (his last) Friday. In fact, he has just 3 more amiphostine treatments as we are running out of Zofran and don't want to buy any more if we can help it! (Expensive!!) I think by the end he will have done 22 or 23 treatments which is apparently some sort of record at Hopkins but I think Nelie did the same #.

Barry's throat (soft palate and uvula area) are pretty darned sore and red, no open ulcers but painful to swallow food or liquids (hence he takes pain-killers or a numbing swish before eating) but doesn't hurt just sitting around. The thrush is still there as white patches which come off on a q-tip, in fact, the infection is in one of its "waxing" modes do he has to step up nystatin rinses this weekend. The front of his oral cavity looks amzingly good, actually a fairly sharp demarkation from the back (which reflects the tomo plan we saw) but it is a bit puffy. Mouth saliva amount OK, but definitely thicker -- still clear however. He has some phelgm in throat and (he thinks) chest, which looks like the stuff you cough up when you are recovering from a chest cold -- but using the guafenisen syrup at night and also, sleeping with 3 pillows and humidifier have made this more of an annoyance than a serious issue. Food-wise he is pretty much restricted to juice, smoothies, soups with soft ingredients, eggs, noodles, mashed potatoes, jello and puddings, ice cream, etc. -- I have been eating a lot of the same and admittedly am a bit sick of it so am sure he is as well! (Too guilty to sit down and eat a steak or chop in front of him!). He's lost maybe 11-12 pounds (all of which was weight he gained post-dx) and I have lost 5-6, the only positive thing from all of this. The peg stoma is already closed up and I assume eventually will fade away.

We have an appointment with Dr. Maura Gillison (assume it's OK to mention her name, Brian has posted often that she's the human papilloma virus/cancer expert at Hopkins and is on OCF board) next week to discuss Barry's participation in her current HPV trial and also, future research (which might involve trialing a vaccine) -- will let everyone know if any of this sounds feasible and what long-term implications might be.

Friday Barry told our radiation nurse (whom we are very fond of) -- "no reflection on you, Marian, but I will be very good to see the back of this place!"

Amen!

Gail

Gail, I did do the same number of Amifostine and apparently really impressed the radiation technician and the rad. oncologist from Roswell Park. I had one gap of five days when I didn't have any shots, though, after the second chemo because I was so sick from that. I worry that long a gap that may have negated all the rest. I am having really horrendous drymouth at night right now. Hopefully it will get better.

Anyway, I hope Barry does better and given how well he is doing in other ways I suspect he will! (I also suspect that ebcause his tumor was on the lower tongue, they might have been able to spare more of his parotid glands than they were with me--I know the one on the tumor side for me was not spared and I had my submandibular gland on that side removed when I had surgery so that might make a huge difference)

Aren't you a sweetie to not eat other stuff in front of Barry. You really are. My husband (who has not turned out to be a particularly sensitive caretaker in all sorts of ways but that's another story) gave me two choices--he could sit in another room and eat the nice dinner he cooked for himself by himself, leaving me alone for even more of the day than I was already alone when I was in treatment or he could eat it with me and in front of me. I chose the latter ebcause I wanted company when I could get it at that point and I guess the one benefit it has had is keeping me wanting to be able to eat normally again!

Yeah, I told the radiation techs that I couldn't wait to see the last of them too--but they just laughed because, of course, I still have to go back for breast radiation!

Hi Nelie --

Well, I had to go to a dog club meeting at a friend's house and they had pizza brought in and I have to admit I pigged out! PIZZA! YAY!

I came home and asked Barry what he ate -- 3/4 can veggie soup, two glasses of mango juice and for a snack, half a Boost. He will never want to see another Boost after this is over, I am sure...Or any more soup, I am afraid. However almost up to 2000 calories today so he's been good! (Don't ask how many pizza calories I ate....!)

Gail

Boy it would be a horrible thing to come out of this having formed a taste aversion to Maryland crab soup though (any chance you can post the recipe for that?)

I'd say you earned the pizza calories.....

Hi --

I'll post the soup recipe on another forum topic (hmmmm--medications? adjunctive therapy?) -- made it again yesterday. MMMMmmmm...

Now only 6 more treatments -- three more regular, then Friday, Monday and Tuesday radiation only to the primary target area (same Gy dose) which is tonsil and base of tongue. One more chemo on Wedesday.

Barry is holding up well though his throat is more sore (still eating) and he is being more careful about pain management. His skin is still good tho a bit right under his chin looks sun-burned, so it may blister or peel. Has anyone tried tea tree oil for this? (I know it is good for regular sunburn).

ROs very pleased and encouraging. But of course we are starting to wonder -- did this work? Will be 2 months before they will want to do the scans, to avoid being "scared by remaining inflammation" as RO said.

Count-down...

Gail


Gail

Yay! Six more treatments--that really is light at the end of the tunnel. I hope Barry's skin stays OK. I think whenI had about that time left I just ahd what looked like a sunburn and it turned so quickly RIGHT at the end into a really bad angry red peeling burn and skin infection. If he starts peeling, try the silvadine ointment that they use for serious burns in the hosptial. It works miracles.

Thanks Nelie, I am watching it carefully and really appreciate the warning. (As they say, forewarned is forearmed). It is mostly a strip sort of below his chin and that is where normally his skin is rarely exposed to the sun, so probably is particularly vulnerable.

Gail

OK guys, only FIVE more treatments to go (oh, and one last chemo tomorrow). Then it will be OVER! Well, for a week, then Barry meets with dental oncologist and HPV expert and maybe some others medicos, and then we really can rest (for a month) until a round of other appointments with his MO and RO. However, no scans ("no peeking") for at least two months to allow inflammation to subside.

Then we shall see what all of this accomplished....keeping our fingers and toes crossed!

Gail and Barry

p.s. "Soup du jour" is my grammie's pea soup...mmmmmm...

Last chemo today, the nurse gave Barry a hug -- but be assured he was not sorry to say good-bye. Four more radiations, the last three are just focussed on the primary tumor area (right tonsil and base of tongue) and will not hit anything else (thanks to the tomo machine). Barry's platelets were up again this week which I find amazing, they're now back in normal range though his hemocrit is still a bit down. Throat is pretty darned sore, and still some thrush present but manageable -- he just needs to time his pain-killers for meals.

The RO showed me how the tomo scans are meshed with the simulation scans to ensure 100% concurrence and overlap and thus very accurate targeting and sharp margins. We feel this technology is largely responsible for his relatively localized problems with mucositis (none in mouth proper) and phlegm. The rest of his good performance I attribute to his excellent health and condition going in and his upbeat and positive attitude throughout.

He is my hero!

Gail

Gail,
I'm glad Barry is also almost at the end of his treatment. It has been amazing to parallel Barry's treatment with Michael's where Michael is so ill from the treatments and Barry is not having the horrible side affects so many experience. Since both guys were in good health when they went into treatment, it must have to do with the differnet chemo they were receiving and maybe the new machine at Hopkins.

Come up with some way to celebrate not going to hospital for treatment and enjoy your first day off and many more.

Take care,
Eileen

Hi Eileen,

I think there are a number of reasons Barry is doing well. But having said that, it has certainly not been a walk in the park for him and he is dealing with a number of unpleasant side-effects as he finishes his 6th week today, very sore throat and soft palate with mucositis and thrush (mouth is still pretty good, however), phelgm at night, need for oxycodone to eat etc. It does seem as if the tomo-therapy machine produces less severe problems, and this is from the horse's mouth, the oncology nurses, doctors and nutritionists -- and carboplatin appears to be better tolerated than cisplatin, at least based on what I have read on this forum and again, from the nurses and doc's.

However Barry is also doing better than anyone else at Hopkins who is getting tomo and carbo (so say his RO's) . We think this is due to several things: 1) being in very good shape before treatment -- we had been hiking in Himalayas this spring and he was just back from trip to England where he spent a lot of time doing bird surveys with his brother in very steep terrain. He's been on this prostate-healthy diet for two years which means his cholesterol, weight, etc. etc, were excellent. In fact, Barry said he felt as fit as he ever had in his life when he was diagnosed. Plus he has a great "this is not going to defeat me" attitude and lots of support from family and friends. 2) Not having really debilitating surgery beforehand -- recall Michael had a neck dissection and a woman here at Hopkins who is getting the exact same treatment as Barry is really wiped already (only 1/2 way through) as she was so weakened by her neck dissection (not done at Hopkins, they wouldn't have done it first). Barry did have removal of his primary tumor (tonsil) but ENT wouldn't touch the base of tongue. It takes a long time to recover from surgery and sometimes your body is just not ready for the stress of chemoradiation. 3) Finally, Barry's been absolutely meticulous about his mouth and skin care, using various things which we had seen recommended (e/g/ the aloe in mouth, Therabite etc. ) and also, being very serious about continung to eat and drink. We see a lot of people who come out from their radiation treatment, pick up their things and go home. Not surprsigly, their skin is not in great shape. Or the ones who won't eat "because it tastes like nothing" -- Barry absorbed the warning that "food is medicine" well and his calorie intake has stayed stable, although he has gradually lost the weight he gained beforehand. He also heeded the warning from his ENT (the one who herself had HNC) to "keep swallowing" and he was determined to do this, which became a moot point when his peg fell out last week (!) and they didn't want to replace it. Also, he has continued to exercise, albeit modestly, and says his energy levels -- which fell intially -- have been stable for last three weeks.

Whether the fact Barry's never smoked and has no associated co-morbities also contributed, I am not sure but interestingly most of the people we see daily at radiation have also never smoked!

Anyway, he has 3 more treatments which will only hit tonsil bed and base of tongue (of course, just where he is most sore!) and then he has to heal. We were encouraged when we met a guy yesterday who had been 2 weeks' ahead of Barry on tomo/carbo and he said he is feeling much better, no more phelgm, mouth recovering a bit and he's starting to eat more things.

Will keep everyone posted ...

Gail

Hi all --

Well, the first act at least of the "show" is over -- Barry finished his radiation treatment at noon today, it was a very short one as just a boost and then only 2/3 of the field as 1/3 had been done Friday before the tomo-therapy machine went down. (It is still down, the guys are getting used to working on it until 3 am, then staggering home -- they think they've now have solved *the* problem but too late for us).

The only little wrinkle (well, two) was that the RO asked him to take the Ethyol again for the last three treatments as the radiation field isn't as tight with the older machine (and of course, that meant taking Anzemet and drinking 20 oz. water in 90 minutes, not easy to do with a sore throat) and also, after the first treatment Tuesday his neck got quite red, much redder than with the previous 30!. Why? Well, we read the "cautions" on the antibiotic he's taking for his staph infection and it clearly said if you are taking gadifloxin, "stay out of the sun as you will get sun-burned." OK, what's a linear accelerator but a giant photon source? It does seem to be fading already but I bet he will peel...

Barry says he will get on-line this weekend and give you his thoughts...right now we have to wait for the 2-month mark when they check things out. (RO says "no peeking" before then as it leads to false positives and a lot of anxiety for oncologist and patient.)

So I guess the next couple of months are the "second act."...

Gail

Congratulations to Barry and to you for finishing the first act so gracefully....now you both have some time to rest and recover without those trips every day...enjoy it.

Nelie

Gail,
I hope that this isn't true for Barry, but in my case and also for many others, the hardest part began when treatment ended. I rang the bell and headed for home, delighted that the radiation was over. However for the first time during my treatment I got depressed, and, along with feeling lousy,there was also a feeling of hopelessness. When you go in for treatment every day one feels like you are being pro-active and you are interacting with people working to heal you. Once I got home I just felt like there were a lot of hours in the day and nothing to look forward to but the next tube feeding.
The good news was that I found ways to cope and began to feel much better as things steadily, if gradually, improved.

I think it is great that the two of you are so well-informed and that Barry came to treatment with such an active, healthy life-style. In my case one of the ironies is: now that my swallowing finally seems to have really improved, many of the foods that I find easy to eat are not particularly healthy, like steaks, fried shrimp, mexican food,lasagna, french fries, etc. but at least I no longer need the milkshakes that I used to drink a couple of times a day for sustenance. Of course certain vegetables are easy to eat as well.
Best of luck with this new phase.

Danny G.

Hi --

Barry is overjoyed that he is no longer having to go up to Baltimore every day and wants to concentrate on getting better. His energy level is pretty good, he cooked his and my dinner tonight (he had to eat soup, I had a chop -- and yes, I felt guilty!) but maybe with not having to be out of the house 1/2 the day he can eat more regularly as he needs to put some weight back on (he's about 5-6 pounds down from his regular weight). He is pretty tired of soup and shakes, however <gr> though he realizes it will be a while before he can handle other foods. As you may know, he never used the tube. He is far from depressed, but rather pretty happy about getting through the ordeal and being relatively, although not completely by any means, unscathed.

We went up to Hopkins (again!) today to meet with HPV oncologist to find out about a new trial with a HPV-16 vaccine (this is not the vaccine about to be released as a prophylactic inoculation, but one which has been shown in animal trials to eliminate HPV-induced cancer.) She had some interesting things to say about rate of recurrence in HPV+ SCC (quite low) and also, how long it can be between initial HPV infection and the cancer showing up (up to 20 years).

I tell you I am also happy about not going up to the hospital every day, I can assure you! However, we still have appointments....

Gail

Gail, glad to hear how well Barry is doing thus far. I've been reading all of your posts, but you are so well informed, I haven't had anything to contribute except best wishes to you both. Amy

Hi Everyone:

This is Barry posting. My wife Gail usually posts on my behalf as she is a lot better and quicker on e-mail than me. If you have been following her posts you will see I am through the treatment stage [with final treatment last Thursday] and now in the R&R (rest and recovery) phase.

First I would just like to thank everyone who sent me their best wishes and words of encouragement. These were all very special and while I seldom post I have read all of the e-mails and appreciate very much all of your kind thoughts.

The first few days of R&R, not unexpectedly have seen some of my side-effects get worse. I think this is in part due to the last three days being on conventional external beam rather than the tomo, as the latter was down and the RO didn

Hi again --

Thought folks would like an update -- I am now one week out from treatment. My throat is still very sore and mouth also, though this last has eased some in the last day or so. Still on the patch and taking Tylenol if I need to before eating (with med onc's permission, as long as I check my temp beforehand). Today however was the first day that it didn't feel worse than the day before, but a tiny bit better. Hope this is real -- my dental onc whom we saw Tuesday said that one week out is when tissue healing starts but that it might be a couple weeks after that before I actually am aware of any change. He has just written a paper for Lancet on side-effects of head/neck cancer radiation so has been studtying this a lot.

Still eating soft foods -- I am getting tired of soups and shakes but taking in about the number of calories they want me to eat (at least 1800/day) so maybe I will regain some weight. I was losing very gradually through the first 6 weeks of radiation, only 1-2 pounds/week, but when I got the staph infection and then the serious mouth soreness from last three conventional rad treatments, I lost almost 5 pounds in a week! My energy levels are not bad and have never dropped as low as I expected -- we took the dogs for a walk in the woods yesterday (although only 1/2 the distance I would have gone pre-treatment) and I am starting to exercise a bit with light weights for my upper body which is looking pretty thin!

Still taking Mucinex as I get occasional bouts of deep chest phelgm which looks like the stuff I had when the infection was active. They did another blood culture Tuesday but results not in yet; hope the staph is gone! Haven't been sleeping too well (which might be due to the patch, when I first used it it made me a bit agitated and I had weird dreams!) so am taking 1/2 Ativan before bed-time and that has helped (MO suggested this).

Had good consult with my medical onc Tuesday as well. She says they are getting really excellent results from the IMRT and now, the tomo-IMRT re control of HNC cancer -- significant improvement on older machines -- and that the tomo seems to give much fewer side effects though she is not sure there's any long-term clinical advantage (too soon to tell). She encouraged me to go into the HPV-16 vaccine trial but that will be 4 months from now.

Our RO nurse called yesterday and said my WBC was now in normal range and RBC/hemoglobin almost there so I am not as concerned about catching some illness from other people . Other than the blood count depression my chemotherapy was really a non-event; very happy I opted for the carbo as opposed to the cisplatin.

Will meet with RO in one month to look at recovery from side effects, and then again in 2 months for exam for response of the cancer to treatment. After that I will meet again with the surgeon and he will decide whether he needs to do a PET scan or a biopsy; it is unlikely I will need further surgery (per my MO and RO) but it is too soon to address this. The dental onc did check BOT area and also felt the lymph nodes on right side and said everything looked/felt very small which is encouraging.

We are starting to plan a bird-watching trip to Brazil in March so I have something to look forward to!

Cheers,
Barry

Dx 6/21/05 Stage IV SCC right tonsil, base of tongue & 2 lymph nodes, HPV-16 + tumor, tonsillectomy + 33 days radiation (30 on tomo-therapy machine) and 7 weekly doses carboplatin, finished treatment 9/29 at Johns Hopkins

Hi all --

Just another update -- well into second week after treatment and I can definitely see a positive change inside Barry;'s mouth (once-red areas are now deep pink, once deep-pink areas are now pale pink and look normal) and the little uvula that was swollen and bright red is now normal size and pink. But he still has a lot of sore areas -- mucositis, and probably still some thrush -- at very back of mouth, base of tongue on each side, soft palate and back of throat, the areas which got the most radiation. He continues with his aloe, rinses and coatings and has added an l-glutamine rinse and also, Vitamin-E capsule crushed in mouth and spread over sore areas a couple of times a day (MO says this is OK to do now as radiation is finished). Both have been shown in some studies to speed healing. He had stopped the Manuka honey for a while as the taste really got to him (it is very medicinal in flavor, not like "Sue Bee" honey) but will be resuming it today.
He is taking Mucinex for phlegm, which keeps it under control -- it is really more of an issue at night; certainly not as bad as a week or so ago but still an annoyance.

His skin is fine, maybe like he had a slight sunburn a while ago but mostly normal-looking. Some rough areas with dry skin so still using Biafine. (His skin never got broken or blistered). The hair at the base of his hairline (which had broken off) has started to grow and is about 1/3 inch long now; I noticed stubble starting on his cheeks in areas which were beard-free for weeks.

I think Barry is a bit disappointed that pain-wise things have not really gotten better but we were warned by the dental oncologist (who has just done a big study on side-effects of HNC radiation) that the end of the first week after treatment is when tissue healing begins, but that it takes at least another week and most probably two more, before the patient really feels a difference. That is, things are happening at the tissue level that will lead to resolution of the sores but that it takes a while for this to progress far enough to for the person to start to feel more "normal" in the mouth. So patience is the watchword! (For me too, I am getting tired of trying to make innovative soups etc.!)

The last two days we have had drenching rain (much needed, but...) however it's looking nice this morning and we will soon take the pooches out for their walk. It is important to continue to exercise and Barry is also using some of my (very) light weights to maintain some muscle tone while recovering.

It will be 4 weeks from next Tuesday before we see any of the Hopkins folks again (barring emergencies!) and Barry hopes he will look and feel a lot better by then!

Gail

Barry and Gail,

I am happy that you are now on the "brighter" side of treatments. Perhaps you already know this but the daily recovery may seem slow (or non-existant) but when you look back one week you will recognize progress.

It is also a time where I had difficulty because there is no active treatment happening. A person has to "fly alone" wondering if it all worked. I mention this not because I have a solution, but to give you a heads-up. I found that supporting others was theraputic. We had several people at our church in various stages of various health issues. This group got together regularly and had discussions. I also noted that if I was busy with manual projects My body seemed to respond better. I split firewood, dug up gardens etc. (yes I was slow)

Hi Mark --

I think you are right -- get out and get going, as much as you can -- I know my mom did this even though she was on chemo (of f and on) for 5 years with leukemia -- we went to Tahiti on a cruise and California and Maine. She stayed active until her last summer and enjoyed as much as she could -- went to the store, etc. -- and tried to stay upbeat.

Barry's a pretty upbeat person and he does try to stay active as well, he's always hated just sitting around. But we had another little "bump" Sunday when he got a temp of 102+ and the hospital wanted him back in. Since it was one day after his oral antibiotics (for the staph blood infection) ended they were very concerned, but it appears to be a secondary respiratory infection - a mild "walking pneumonia" - he actually feels fine but does have unstable temps between normal and 101+ -- recall someone else complained about this sort of thing post-treatment. Your body is cerainly more vulnerable (though he has never been leukopenic and his BC is OK, though WBC down from last Tuesday). Anyway, back on IV antibiotics!

On the plus side, his throat is getting better daily and he can eat and taste more -- managed the hospital's idea of "whipped potatoes and gravy" last night. He is in a really posh room, donated by a grateful family to the hospital -- it has a *plasma* TV (!), DVD etc. -- he said "maybe I won't rush coming home this time"-- almost a vacation if it weren't for the IV's and the constant interruptions to be sure you are still breathing!

I also think it is important to look ahead, and not just to upcoming tests etc. -- we are actively planning a trip to birding Brazil in March with friends.

Thanks for the good advice,
Gail

Gail Mac,

I was in a week during chemo for low neutrophils. Radiation and chemo can reduce the numbers of neutrophils so that formerly harmless bacteria begin to become a big deal. They kept me in until they were up to full numbers, it sucked because my fever was gone in one day.

Apparently he isn't neutropenic either, according to most recent bloodwork -- maybe just overall run-down (who wouldn't be!) -- the good news is his throat looks a lot better and he is eating better, last night a full bowl of cream veggie soup plus a large serving of mashed potatoes and gravy, also a custard I made him (which he could taste!). He is also drinking lots of mango juice, which doesn't burn his throat.

The nutritionist came in and said his weight, though down from his weight pre-infection (that is, his first staph infection) is OK for his height and she's not worried. He is still on 25 mcg Duragesic, and takes 2.5 mg oxycodone 2x a day pre-breakfast and pre-supper (this is a reduction from last week). I looked in his mouth yesterday and the whole back of palate (uvula etc.) are now pink and free of the white "pseudomembranes" of mucositis, but the back of throat is still very raw and sore.

However progress is being made....his energy is pretty good and he is walking up and down the hospital halls to try and stay active.

Best,
Gail

Gail, I had a very unstable temp like that for about two weeks following the end of rad and chemo. They kept me in the hosptial for a week and 1/2 just to be safe--because I was also neutropenic when they admitted me--but they never really located the cause of the fever down to one specific infection. When I was admitted the burn on my skin was very inflamed and peeling and they thought that might eb the cause, but they treated that with sivadene cream and the spiking fever persisted long after the skin had peeled off and the neck ahd healed. So I never really knew what it was due to but they ended up concluding they'd eliminated all the bad stuff it could be and I wasn't neutropenic anymore so they sent me home. By about week 3 out of rad/chemo the fever disappeared.

Hi Nelie --

I thought it was you who had had the fevers post-treatment -- and I believe I read someone lese's ad was hopistalized woith same sort of thing.

Anyway, thankfully, Barry's temp is now normal and has been since Monday -- we spoke to the doc today and I think they will "spring" him tomorrow. The blood culture was negative so no staph, he definitely had a slight pneumonia per xray and chest sounds but still waiting on sputum/nasal cultures.

I can't believe how much better his mouth has gotten in last couple of days (maybe the three antibiotics have helped, if so, how much of folks' post-treatment mouth problems and slow healing involve latent infections for which they are never tested?) In any case, he ate mashed sweet potatoes for lunch with no gravy, which he never would have been able to handle this past weekend. But the spicy soup they gave him was out....

This all might be his body's trying to deal with healing and recovering from the radiation...we are not expecting immediate results and are taking things as they come...

Thanks for the help,
Gail

Just a short update, Barry home yesterday, feeling fine but having to swallow two HUGE Augmentin tabs every day. Doc said that his pneumonia was improved in chest xray taken Wednesday but that it might be some weeks before complete resolution --

They thought this had been around for a while but kept "down" by the gatifloxacin he took for blood infection, and they further felt it might have started by aspirating food or fluid back when his throat was worse. Which is a problem, esp, if folks gargle with rinses containing numbing materials.

Well, have to go as we have to call Barry's mum in England, who is celebrating her 99th birthday today!

Best,
Gail

Hi --

It's been a while since we had an update -- it is one month exactly since Barry ended his treatments. He is gradually improving, really the only thing that remains a problem is pain when eating -- he is eating well but sticks to soft and bland things, quiche, soups, eggs, mac and cheese, etc. Maybe he has an unhealed area further down his throat than I can see using a tongue depressor and light (the upper oral cavity is nearly 100% healed). Guess they will check that out in early November when he goes for an evaluation and swalloqing test. But he is eating much faster and more easily every day, not needing to wash things down so progress is certainly being made.

He has no coughing or phelgm to speak of, and his energy, although not up to pre-treatment levels, is good -- Friday we went to a seminar and expo on the Medicare prescription plan and then went home and off to chase after a rare bird that had been found about an hour away (we saw it).

His goals for the next month is to get his weight back up (which he's started to do a bit, since he's eating more), and to get out more for exercise, yard work and just regular stuff.

Our next big milestone is December when they check to see how well the treatments worked so keeping our fingers and toes crossed!

Happy Hallowe'en!

Gail

Gail,Hi.Good to see your post.Good for Barry! A non cancer question-did you learn anything good at the Medicare prescription seminar worth repeating? I am trying to find the time to evaluate the plans and am realy struggling. Need to decide next month. Wonder if there are others here old enough or otherwise to be interested in this.? Amy

Maybe we should start a topic in the "insurance issues" forum -- anyway, in Maryland the state will pick up some of the monthly premium and they have a computer program where you enter your prescriptions and it tells you which ones are covered in each of the 22 (!) approved plans in the state. For Barry it was only 2-3 of the plans that covered all of them, and for these, each had some of the drugs in a different "tier" -- that is, how much he has to co-pay. He doesn't take many prescriptions now that he's essentially through with the treatment, the one drug that a lot of the plans do not cover is primidone which is for his benig essential tremor, nothing to do with cancer. It is a Medicare-approved drug, so not sure why...

You may wish to check with your state to see if they have information available on web or in hard copy which will help oyu sift through ll the options...

Gail