Hi:

My husband was diagnosed with SCC of a left tonsil & neck mass, Grade 3 (of 4,two neck lymph nodes back in June of 2005. His treatment was 6 wks. IMRT, 4 treatments chemo (Cisplatin) and modified radical neck dissection. He was treated at a cancer clinic who also treats patients with alternative treatment, i.e. supplements (vitamins intravenously). They believe in treating the whole body, not just the cancer which is why I feel he did so well. He had CAT scans every 3 months for the past 2 yrs. He will now be scheduled to have scans every 6 months. In this time frame, he has never had PET scans except in 2005. His latest reports mention lesions on the liver and 3mm. noncalcified lung nodule. No one seems to concerned about this but I wonder if he should be having a PET scan now? Maybe this is something I should not be to concerned about. I don't know.

He is working and seems to be doing fine. But just recently he was diagnosed with a 4mm acoustic neuroma which, I assume, has nothing to do with his SCC as this is a benign tumor. Since it is so small, doctors are just taking a "watch & wait" approach for now.

He does suffer from lack of saliva & no taste. I am wondering how many of you have tried either Salagin or Evoxac and how long it took to get results, if any?& He has been taking Evoxac once a day for at least 6 months but no luck yet. He never complains though.

I'm so thankful for this forum and being able to read about others in the same situation and how you have all handled it.

Just thought I'd share his experience and any input is appreciated.

Linda K. (wife of Ken K.).

Linda,
My husband was diagonosed about the same time and similar diagnosis. He has had 2 pet scans- the first 6 months after treatment ended and also 1 yer after, I would advise you to ask for this as there is is no watch and wait where SCC is concerned.

Paula

Hi Linda,

I have been taking Evoxac for about 4 months and I think it is helping (at least a little).

However, I take it 3 times a day, and maybe that makes a difference.

Best wishes,

Chris

Hi Linda,

My husband takes Salagen 4x a day, and this seems to make quite a difference for him in terms of dry mouth. And of course he drinks tons of water - tries to get in 64 ounces a day. Now 3-1/2 months out from radiation, his taste is coming back and is about 50% now.

Good luck to you both.

-Tricia

Chris:

Do you think it was the Ethyol daily that helped save some of the saliva? I wonder if there is a big difference between Salagen & Evoxac or are they about equal?

My husband doesn't go anywhere without his water bottle - constantly drinking!

Linda K.

My husband did take a full course of Ethyol (35) and that may have helped his saliva, but of course it's impossible to know where he would be without having taken it. As for the differences between Salagen and Evoxac, one thing I have read online is that Evoxac seems to last longer for some people, so it can be a help especially at night for people who are being awakened by dry mouth.

I went through pretty much the same thing except no chemo and 7 weeks of IMRT. It took 14 months for my saliva and taste buds to return to post-surgery, pre-radiation stage.

Water has to be a patients best friend at this point. Saliva is also the primary carrier of flouride in the mouth. So, if you have not seen your dentists, you should be using flouride trays/rinses.

Jim

My MO thought the Ethyol would help improve the functioning of my saliva glands. My RO seemed quite a bit more skeptical, and always advised that if I started having trouble the Ethyol would be the first thing to stop using. My dentist, who specializes in H&N patients, says I have more saliva (even though it's not that much) than many of his other H&N patients. And my saliva production has definitely improved somewhat (but maybe that's not saying much when it started out so low), and does seem to be getting better. Every now and then my saliva production even seems quite good (very relatively speaking, and never near enough to avoid drinking water when eating), and I wonder if there are things I occasionally eat or drink that cause a temporary increase.

Between Salagen and Evoxac, what I'm told is that Evoxac has less side effects and is thus the first choice for trying to stimulate the saliva glands - I have had no side effects. My dentist said he would try Salagen if the Evoxac wasn't working - but my impression is not that Salagen is better than Evoxac, but that it simply may work better "for me" than Evoxac. Since the Evoxac appears to be helping, I plan to stick with it. I've never tried Salagen.

So, is it the Ethyol, the Evoxac, personal constitution? I really don't know (pretty long explanation for an "I don't know" answer, huh) - but I'm glad things are going in the right direction.

I also carry water wherever I go.

Chris

From what I've read here over the past several years, and from conversations with my RO, it sounds as though individual results can vary a lot with Salagen and Evoxac. However, I've had a great deal of help from Salagen -- I take 5 mg doses, 3x a day, and have been doing so for 15+ years. When I had radiation, IMRT wasn't even around (and neither was ethyol), so there was nothing that could be done at that time to help my salivary glands. It took a very long time for me to see improvement, but it definitely did get better, bit by bit.

Cathy

Thank you all again for your responses. My husband will have to decide whether it will be the Evoxac or the Salagen he will want to continue taking.

I forgot to mention that he did try acupuncture (including herbs) for at least 12 treatments (maybe more) and that did not help.

Linda K.