Jim, God Bless to you and your family. Your son is lucky to have such loving and devoted parents.
Marcie Sent from my iPhone > On Apr 30, 2016, at 8:40 AM, 'Jim Sago' via CMLHope > <[email protected]> wrote: > > 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. -- -- [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.
