Hi All
Thank you for the support of finding Zavie Miller Zero Number Participants What great success we have had >From Number 1 [Marty G] to No 1381 Alison ? from the UK Ms Fran Mauri Comment in 2010 1366 Entries (zero number presentations) 947 valid Email Addresses 260 Invalid Email Addresses [European Addresses?] 149 No email Addresses ________________________________________________________________ >From 2010 to 2011 there were 9 Zero numbers presented to # 1375 >From 2011 to 2012 there were 6 Zero number presented to # 1381 # 1381 is the last Number of the Zavie Zero Club Member List " Colour code : Member is deceased Administrator Same person/2 numbers 2 names for same number Number checked on web Entry in red Info to be checked Even though there are 1381 Zero Numbers We have been able to find and verify and cross check 1000 presentations as being correct Some names such as Alison – we have not been able to find her surname – but have info that this is the last number We have the facebook page - https://www.facebook.com/groups/1673390782910601/ Named ZAVIE - CML ZERO CLUB MEMBERS - WHERE ARE YOU ? We have four adminstrators from around the world (Two in Australia) (one in France) (one from the UK) We also have a Registrar and keeper of the Zavie Zero List – we are still updating – with new surnames, people who have passed, where people are now living Also the facebook page is able to reconnect people with each other – The Zavie Miller Zero List has been downloaded on a file from this page We are vetting any new members to the page to ensure they have CML and a Zavie number I am also sending Marty a Zavie Zero List that we currently have so he can share with you guys if you request from him Other than that – please join facebook link attached Sue Hurt #1197 From: cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com] Sent: Sunday, 1 May 2016 6:21 PM To: Digest recipients <cmlhope@googlegroups.com> Subject: [CMLHope] Digest for cmlhope@googlegroups.com - 7 updates in 3 topics cmlhope@googlegroups.com <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> Google Groups <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> Topic digest View all topics * Zavie's Zero Club.xls - 2 Updates * Our son Alan Sago - 3 Updates * Prayers are offered. - 2 Updates <http://groups.google.com/group/cmlhope/t/cb7384fbaba8c8a7?utm_source=digest&utm_medium=email> Zavie's Zero Club.xls Marty Gartenberg <wa2...@gmail.com <mailto:wa2...@gmail.com> >: Apr 30 12:36PM -0400 So Joyce, you say that "I just don’t have anything worth reporting" Well you just did. A family all getting together especially a now member of your family who you haven't seen as yet. A lot to think about isn't it?💟 18's, Marty . Marcie Goodman <margoo...@aol.com <mailto:margoo...@aol.com> >: Apr 30 06:26PM -0400 Susan, the feelings are very mutual. You are an inspiration to me. I am indeed blessed with a wonderful support system. Hoping that Monday or Tuesday my husband will head to inpatient rehab. He's a good patient, never complains and is so gracious and kind. The nurses love him and go out of their way to ensure he is comfortable and taken care of. I expect there will be bumps in the road ahead but nothing we can't get through together. Just like you and Roy and all of our dear friends on this site! Much love, Marcie Sent from my iPhone Back to top <http://groups.google.com/group/cmlhope/t/e439a90bcd00102c?utm_source=digest&utm_medium=email> Our son Alan Sago Jim Sago <jas...@yahoo.com <mailto:jas...@yahoo.com> >: Apr 30 05:40AM -0700 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 Marty Gartenberg <wa2...@gmail.com <mailto:wa2...@gmail.com> >: Apr 30 12:26PM -0400 Hi Jim, I am truly sorry to hear of your son's problems and I know that they will get better. I am sending a prayer for him. To explain, I had a bone marrow transplant way back in 1989 as well as removing my spleen and many more problems followed almost twenty years afterwards but I have dealt with all of them including my kidneys failing and on dialysis for four years then finally getting a kidney transplant following a stroke two years later then a prostate operation then A severe MRSA infection then a CMV infection, then A-fibs that would make me faint so I now have a pacemaker and a whole lot of other drugs, as well as many other things. The reason that I am telling you this is because no matter how much you your wife and your son goes through, and some may be very difficult to go through you are still alive and you must enjoy each and every day of your lives because there is always a shining light in your paths. Now I know Zavie and his wife Ida very well and he actually gave me the first Zavie's zero hat marked number 1 and I still have it today. Zavie always believed that he was able to help other people with CML as I always did and still do today. By the way the drug that was discovered by Dr. Brian Druker was first caller STI-571 then when the FDA approved it, then was called Gleevec, but it is also called Gleevic in some of the countries "beyond the pond" Now this is the prayer I was talking about, It was pasted on the outside of the plastic bubble that I had to live in for seven months in the hospital by a friend of mine. So I am now passing it on to you so that you can read it every day of your life. Just look at what it and continues to do for me when ever I really need it. 18's, (meaning life) Marty On Sat, Apr 30, 2016 at 8:40 AM, 'Jim Sago' via CMLHope < Marcie Goodman <margoo...@aol.com <mailto:margoo...@aol.com> >: Apr 30 06:19PM -0400 Jim, God Bless to you and your family. Your son is lucky to have such loving and devoted parents. Marcie Sent from my iPhone Back to top <http://groups.google.com/group/cmlhope/t/8e2290e2ac226652?utm_source=digest&utm_medium=email> Prayers are offered. Marty Gartenberg <wa2...@gmail.com <mailto:wa2...@gmail.com> >: Apr 30 12:29PM -0400 Just one thing to say Richard H. Your like the rock of Gibraltar. 18's to you! Marty Icandoallttc <icandoall...@aol.com <mailto:icandoall...@aol.com> >: Apr 30 04:58PM -0400 I'm sorry too. With illness it's like taking one step forward and one step back. The good thing is that we are all still stepping. Our stories can be someone's uplift for the day. Let's hear from everyone and keep our stepping stone well. Each day is a treasure and God will see us through the rough ones. ❤️❤️ My Motto: Faith and Pills❤️ With 💗Jeanie 🐟🐟18,s Chi Dx 1/2004. CML Leukemia Started Gleevec 2/2004 Started Tasigna 9/2009 Started Sprycel 11/2009 Started Ponatinib January 2015 Dr Balducci Moffitt Cancer Center Back to top You received this digest because you're subscribed to updates for this group. You can change your settings on the group membership page. To unsubscribe from this group and stop receiving emails from it send an email to cmlhope+unsubscr...@googlegroups.com <mailto:cmlhope+unsubscr...@googlegroups.com> . -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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