Hi Sue, Of course I wouldn't mind. I first started this in trying to share to of our members especially the "new-bees" and I am praying that a lot more become members of the group that Zavie first started.
18's, Marty 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 On Sun, May 1, 2016 at 10:37 AM, Sue <[email protected]> wrote: > 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:* [email protected] [mailto:[email protected]] > *Sent:* Sunday, 1 May 2016 6:21 PM > *To:* Digest recipients <[email protected]> > *Subject:* [CMLHope] Digest for [email protected] - 7 updates in 3 > topics > > > > [email protected] > > Google Groups > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> > > > <https://groups.google.com/forum/?utm_source=digest&utm_medium=email/#!overview> > > Topic digest > View all topics > > · Zavie's Zero Club.xls <#m_-2080131056668791499_group_thread_0> > - 2 Updates > > · Our son Alan Sago <#m_-2080131056668791499_group_thread_1> - 3 > Updates > > · Prayers are offered. <#m_-2080131056668791499_group_thread_2> - 2 > Updates > > Zavie's Zero Club.xls > <http://groups.google.com/group/cmlhope/t/cb7384fbaba8c8a7?utm_source=digest&utm_medium=email> > > Marty Gartenberg <[email protected]>: 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 <[email protected]>: 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 <#m_-2080131056668791499_digest_top> > > Our son Alan Sago > <http://groups.google.com/group/cmlhope/t/e439a90bcd00102c?utm_source=digest&utm_medium=email> > > Jim Sago <[email protected]>: 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 <[email protected]>: 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 <[email protected]>: 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 <#m_-2080131056668791499_digest_top> > > Prayers are offered. > <http://groups.google.com/group/cmlhope/t/8e2290e2ac226652?utm_source=digest&utm_medium=email> > > Marty Gartenberg <[email protected]>: Apr 30 12:29PM -0400 > > Just one thing to say Richard H. Your like the rock of Gibraltar. > > 18's to you! > > Marty > > > Icandoallttc <[email protected]>: 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 <#m_-2080131056668791499_digest_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 [email protected]. > > > > -- > -- > [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.
