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#22688 03-30-2007 07:36 AM
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ken k Offline OP
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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.

#22689 03-30-2007 05:43 PM
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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. :-)


Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee
#22690 04-02-2007 03:49 AM
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ken k Offline OP
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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.

#22691 04-02-2007 01:39 PM
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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


JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
#22692 04-05-2007 05:12 AM
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ken k Offline OP
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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.

#22693 04-05-2007 05:20 AM
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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


T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.
#22694 04-05-2007 05:26 AM
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ken k Offline OP
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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.

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