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.....