Has anyone used Caphasol? If so, does it help?
I have researched it but, would like to hear from anyone who has used it.

Thanks,
Pam

Haven't tried it yet but when I asked about it Friday at Jim's visit with the radiation oncology nurse on Friday she gave us some samples to try.

Will let you know what he thinks if he agrees to try it.

Jim's experience was 'so so' nothing to rave about . Used it for awhile but stopped.

I can't get my husband to do the 10 recommended daily doses. And, since he's so tired and he can't eat or drink for 15 minutes after...it messes with the whole fluid and calorie intake issue.

My husband doesn't see the benefit so far...at most he has done it 4 times per day. I just read more about it on line, and it seems to be a good thing. But, I'm pushing so hard on required medication, and eating and swallowing...I'm on the fence on this.

We just were given this last week, during treatment week 4. I'd be interested in anyone else's experiences too.

Caphasol is a calcium-phosphate rinse. I have not heard of anyone using it much, would be interested in feed-back. Is it prescription or over-the-counter (OTC)?

I found a good web site with a summary of oral agents for patients receiving cancer therapy:

http://www.contemporaryoralhygieneonline.com/content/COH/2006/07/img/preventive.pdf

It contains the old standbys such as salt/soda rinse (and recipes) and also a description of available OTC products for dry mouth and mouh sores.

One product missing is Difflam mouth rinse, which is available OTC in UK and many other countries (in Canada as Tantum, a prescription drug still I think). This actually does help control mucositis as shown in double-blind clinical trials but is not yet approved in USA. However Can, UK, Aus, & New Zealand oral cancer patients should use this to reduce severity and duration of mouth sores due to radiation.

Gail

Hi Gail,

For us Caphasol is an Rx. Sine Difflam is OTC elsewhere, can it be ordered on-line. The Caphasol doesn't seem to be doing anything to relive the mouth sores. In fact, it just doesn't seem to be doing anything. Our site gave us a huge box to try, but they don't have a lot of experience with it since it is relatively new to them.

What a wonderful link you had on your post...I am going to go through the list and see if there is anything else we can try to help get Dan more comfortable.

I just paged the doc, I think thrush set in over the night in a big way. To be honest, I don't know what it is, just that I was supposed to be on the look out for it...and what they told me to look for is definitely there.

It appears that any discomfort is amplified greatly during this treatment process, as he is feeling very distressed about it.

I can't wait until these treatments are done.

By the way, I took your list to my doctor of things that helped your husband. Dan is finding some relief from items I never heard of...like Kiefer. And, we do have some RX aloe mixture that we are going to try today. They wanted us to use the Caphsol first and then try the Aloe so we could separate out how Dan reacted to each.

I haven't been successful about getting the Ethyol...I read about it early on and keep asking. They told me they, and the other docs in our state, don't believe it works and that the studies have only been done on the old RT systems and not the IMRT ones. I think if it worked on the old RT systems...it should be even better on the IMRT...but, they feel the IMRT deems it unnecessary.

I have been looking on pub med for more data...do you happen to have any? We have 3 weeks to go, do you think it's too late to keep pursuing?

M-

Hi:

My husband Ken is 2yrs. out of treatment for SCC of right tonsil amd aside from still having no taste or saliva, is doing very well. He has just recently started using Caphasol. He only uses it at night before he goes to bed but he claims it does help him get through the night without gargling as much as he used to with other products. I don't know how well it would have worked had he tried it right after his treatments but it does somewhat help him now. He also chews gum during the day which helps keep his mouth moist. Hopes this helps a little.

Linda (caregiver of Ken).

Thanks for the feedback, Linda. Two years out...will his taste buds and some saliva return eventually?

Hi Margaret,

We have no idea if either will return but we sure hope eventually both will. He has been taking Salagen but think he may go back to taking Evoxac. RO said sometimes it takes as long as 5 yrs. for saliva/taste to return. There are very few things he can taste but he never complains. He's been a "trooper" throught it all.

Linda

The rule of thumb is that what saliva you have at 24 months is about as good as it is going to get. Radiated salivary glands do not regenerate, but if some of the cells are not completly destroyed they come back partially. But by 2 years after radiation what you have is usually what you have.

The info on Ethyol not working with IMRT is wrong -- our first radiation oncologist (now retired) was an expert on salivary gland preservation and also, use of amifostine. He did a lot of comparative in-house studies. His statistics were (this from our initial cnsult notes):

"IMRT -- can preserve about 50% salivary function
adding amifostine -- increases to 60-65% -- using tomoTherapy IMRT (most precise targeting) -- up to 75%. "

(Note that use of IMRT is actually the most important factor, the Ethyol only adds 10-15% improvement).

Our current RO says that he can, with careful planning, do almost as well with IMRT sans amifostine as with it (he finds a lot of people can't take the Ethyol or can't handle it for the full treatment course). He uses tomo whenever he can, but has had some problems with machine reliability.

Here is one study which looked at amifostine in a clinical setting: Antonadou et al. performed a randomized phase II trial of chemoradiation therapy with or without amifostine in 50 patients with advanced head and neck cancers.Chemotherapy consisted
of weekly carboplatin .The radiation dose was 2 Gy/d,to a total of 60