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