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.

Hello again:

Just want to share some info. Spoke to my husband's oncologist today. Actually, he called me after asking for a prescription for Salagen. We decided on Salagen because there is a generic for this drug and much less costly for us than the Evoxac.

Anyway, he (the oncologist)called to tell me about something new on the market called Caphosol. It is intended as a mouth wash and suppose to loosen tough mucus & prevents mucous membranes from sticking together. I looked it up on the net and it is manufactured by a company called Cytogen. It is sold by the box (one box contains 30 doses). It is expensive through the pharmacy but we are going to get it through our mail order company and will try just one box to see if it helps. If it seems to help, we will order more. Worth the try and I just wanted to share this bit of information with all of you. Once my husband starts using it, I will let you know if it helps in any way.

Linda K.

Hi Linda, everyone addressed the saliva issue very well. I just thought I would give my opinion on the petscan. I am 1 week post Tx. I should have some scans in about 3-4 weeks to see how effective the Tx was. I intend to have ct sans, as well as a petscan. Used together they seem to be quite effective if you have experienced people reading them. Why not, it's a full body scan that has proven itself to be quite effective at showing cancer. My ins. covered them so far and I hope they will atleast one post treatment and then I would probably save for one per year or two after that. I hope I never have to pay for one I'm just trying to express how important I find the petscan.This is all my opinion, maybe it will help you and your husband with your decision. I hope all scans no matter what they are remain to be good news. :-)

Thank you Lee33:

We will be seeing my husband's oncologist this month and I am defintely going to request he have PET scans for his next follow up. His oncologist is very accommodating so I don't think there will be a problem. I am concerned about the differences in the interpretations of his liver lesions by different radiolosigsts which is why I want him to have a PET scan.

I had another doctor on another web site say that with his patients, he alternates with CAT scans, then PET scans every 6 months. PET scans are very costly & may not always be covered by insurance which is why he alternates between the two. Makes sense to me.

Hope all goes well with your next scans and that you get nothing but good news!

Linda K.

Hi Linda,

I'm just catching up with your post, it sounds similar to my husband who also had surgery, radiation and 4 cycles of cisplatin. Jack is 6 months behind Ken.

I am glad that you are requesting the PET scan, they pick up different things than the CT and it's reasonable to get one at this point. It does need to be precertified with the insurance but it gives you peace of mind. See if they can do one of the combined PET/CT scans, that way you get the best of both.

For dry mouth the surgeon referred Jack for acupuncture and he was one of the ones that it worked for. It's probably 50/50 in results and doesn't help everyone. I think it's good to try the salagen since the other medication hasn't worked. The usual tips about drinking lots of water help. There was a product that Jack used called Entertainer's Secret and that helped his dry mouth. Someone gave it to us but it's available online.

What are they saying about the taste for Ken? Do they think it's going to come back over time? Good luck with the MO appointment.

Regards JoAnne

Hi JoAnne:

Thanks for the tip on the "Entertainer's Secret". I was thinking of ordering it for Ken but I had a question. You said the acupuncture worked for your husband which means he got his saliva back? So as far as the Entertainer's Secret, did he use that before the acupunture or during/after? I'm wondering if I should even order this for Ken as he has no saliva or taste yet.

The radiologist cannot say for sure if his taste/saliva will come back. Sometimes, he says, it takes as long as 5 yrs! I'm just wondering why his radiologist never suggested the use of Ethyol during his radiation treatments? Maybe that would have saved his taste/saliva somewhat.I think this is a question my husband should ask him next time he sees him.

Linda K.

Linda,

Most doctors check your insurance to see if it will cover the cost of the Ethyol shot before they offer or even mention it to patients. In my case, my insurance did cover it. The out of pocket cost 4 years ago for a daily shot was around $720. Take that times 35 treatments for me and most people fighting cancer don't have that laying around as pocket change.

Jim

Thanks J. Malone:

But who knows if this doctor even checked with our insurance. Our BC/BS insurance just about covered everything else for him. But it's to late now to be concerned I guess. It's in the past.

Thanks again.
Linda K.