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?