Alan has CML since September of 2001 and is doing well with Glevleec (I'm not sure of the spelling). I joined this group shortly after that and have mostly just read the post. Alan is Zavie's number 524. He has been very lucky to have little or no side effects from the drug and has been on 400 daily. It was started after he failed with about 7 miserable months with chemo injections. Night sweats, fever, nausua, cramps, and on and on. He became so depressed and his personality changed from a sweet boy to the point that one might fear for the safety of a Grizzely bear left alone with him. Then came the permission to try the new drug. I think it was called STsome number and later named gleveec. He stopped all treatment for two weeks and then started the oral pill. Wow, the symptoms stopped. In 6 months little or no phillys in the blood and in a year little or none in the bone marrow. After two years none detectable in the marrow. Twice he saved cells for marrow transplant; but, was doing so well with the oral pill that he did not have the transplant. We think the CML is as good as can be expected and the doctors in Cleveland tell him that his CML would not even be found by a doctor if they were not told of it. No more bone marrow samples and apparent smooth sailing future.
In late 2013 he reported a sore on his tongue to his dentist. It was ignored. Later, because of pain he demanded a biopsy and it came back cancer. He then saw a cancer specialist in oral cancer and it was determined that he need a major surgery very soon. On Jan 2014 three surgeons removed about a third of his tongue and about 3 by 4 inches of the right inside of his throat. They used a large area of his left inner forearm muscle, circulatory and nerves to rebuild the removed tumor. The forearm wound (it looked like a shark bite) had to be covered by skin from his thigh. He had a trach tube and feeding tube when he was released from the hospital. Much to our surprise he could speak when the tube opening was blocked with his hand. It was poor - but we could understand him. The trach tube was removed a couple of months later and the feeding tube was moved to directly enter the stomach. He could talk but not eat. About a month after the surgery he was given 60 targeted radiation treatments to the mouth and throat. Now he has been stated to be cancer free in the mouth and throat. After about a year more the feeding tube was removed and he now survives on Ensure and some soft mushy foods that it is very difficult to get the tongue to process correctly. He was strong enough to go back to work last June and is still working. The radiation destroyed his saliva glands and his mouth needs extensive repair to allow better speech and feeding. Even though the medical treatment caused the mouth damage - INSURANCE WILL NOT COVER THE NEEDED MOUTH REPAIR as it is consider a dental problem. The repair is estimated to cost up to $20,000 out of pocket. The to date medical and care expenses have been overwhelming. My wife and I are retired and living with SSI and consuming what we were able to save with our living and helping him as much as we can. Two days ago I started a GoFundMe campaign to try to get money for his mouth repair. Please consider prayers for him and his mouth repairs to heal. If you are interested in viewing the funding page or chose to donate anything the page is *gofundme.com/2w8gspvw*. There are pictures and more details there. The fund seems to be a good beginning as it has already received almost $2000.00 from our friends on Facebook and them sharing it on their friends pages. I hope that I am not breaking any rules of the group to report this information. Thanks for any consideration. Especially the prayers and the donations if any will be sincerely appreciated. Jim (78yrs) and Judy (73rs) Sago -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout.
