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.