Dear Beth, About your friend who has GVHD, do you know if she or is it he had a T cell depleted BMT? in my time only one hospital was doing T cell depleted BMT's. As it ended up most transplanted patients at that hospital had it done because there would be no GVHD but a lot of them relapsed, I would say over half relapsed.
It was then discovered that if the donor would give the patients I believe were Lymphocytes they would unreaps or something like that. That was in my time and I asked a few Oncologist' what would they have done, but at the time there was no conclusive evidence of which way to go, but no GVHD. There were some other problems at that hospital so I decided to go to another transplant center after asking one of the people that I helped who did have a T cell depleted transplant and he did relapse so he was given his donors lymphocytes and he is still fine today with no GVHD. This is just a piece of information that you may give your Oncologist. GVHD sucks and I have it to this very day but it really beats the alternative now doesn't it? 18's, Marty On Thu, Feb 18, 2016 at 4:10 PM, bkbarney via CMLHope < cmlhope@googlegroups.com> wrote: > Dear Susan, > > Thank you for the kind words. As I just read Jeanie's post...and Marty's, > and yours and Jon's, .....etc...I feel blessed that we all have access to > good docs, who seem to care a lot..even if they cannot always solve or > figure out what the problems are..(Jeanie's pain).and that we have each > other...companions on this journey,,,,,I am beyond grateful for each one of > you... > > Jeanie, I so hope they can figure out where this pain is coming from and > help ease it for you... It's miserable to always walk in pain like > that...although you have a great attitude as always!!!!. > > Jon, wow...no blast phase...I am relieved for you and happy that your > counts are coming down... seems like you are well watched over...hope you > are on your feet and feeling better very soon!!! > > and Susan, so glad you are smothered in love and valentines by your > sweetie...at the end of the day...somehow, I think that is what sustains > us... love, and hope for another day of loving...of hoping for a cure, or > just a "good" day...I think everyone here knows what that means... > > and Marty...I wish you respite from the enormous trials you have been > going through...that you continue to send positive uplifting emails that > make us hold hope...well, it's awe inspiring.. > > my best friend is now two and a half years out post bone marrow > transplant...she still struggles mightily with graft verses host...but has > a resiliency and endurance that always astounds, inspires and humbles > me....still..she has her good days and her "darker days" as she calls > them...she just wrote a lovely piece on Lent......wish I could find a way > to share it with you..it's on a private blog....anyway,it was about the > darkness and the light, choosing to go without something for 40 days...and > then return to it...with deeper appreciation....so I am focusing on what I > do have, rather than what I don't.... > > as for my check in....the New Year has been a hard one for me thus far, > filled with insurance challenges, actually nightmares..but at least I have > insurance..so my BCR-ABL was pushed back three weeks so I have never gone > so long without..but will do one in March. Back on sprycel for 7 weeks now. > more muscle fatigue and weakness than ever before... > > I had to go on steroids for my back, and thus try the CPK lowering steroid > protocol as long as I had to start them anyway..but went off after ten days > because of side effects to serious to continue.....so CPK remails very > high, muscle wasting, and the desire to be active and feel stronger, gets > overshadowed by the pain and fatigue in my body...so, that's the > truth....but....... > > my goals, which are hard when one feels so shitty, are to exercise more, > eat super healthy, lose some weight, say my prayers, and try and find ways > to help myself feel better.....staying positive....just staying positive > and hopefully will see Dr. Druker in the near future. > > > Big hug and love to all of you reading out there..whether you post or > not....I hope you feel the community's love and > support. > > 18's Beth > > . > > > > > > -----Original Message----- > From: 'Icandoallttc' via CMLHope <cmlhope@googlegroups.com> > To: cmlhope <cmlhope@googlegroups.com> > Sent: Mon, Feb 15, 2016 3:14 pm > Subject: Re: [CMLHope] Info update > > Hi Susan and all, > Good to hear your uplifting voice of hope and love. I had my annual > checkup with my PCD today. Every thing is pretty much the same. I Had > blood drawn and will get the results tomorrow. Also they found some nodes > on my lungs a few months ago so I will do a chest X-ray tomorrow. I have no > trouble breathing so I don't think anything is wrong. > Pain is still bad but I'm hoping they can find the cause soon. > I hope every one is good tonight. > > 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 > > On Feb 13, 2016, at 3:27 PM, 'Susan Zimmerman' via CMLHope < > cmlhope@googlegroups.com> wrote: > > Dear Beth and Marty, > > Sweet Beth is one of my inspirations, in case you didn't know. I pray all > is well with you?! We need an update. Happy Valentine's Day. > > Marty, I sure hope your dire circumstances have improved this week, even > just a tiny little bit. A tiny bit is to rejoice over! I love all you > guys so much, and we truly are family. Happy Valentine's Day and get your > wife something special. > > Jeanie, I sure do hope your side pain is better, too. Even just a tiny > bit! That V.Day will lift your spirits and that you know you are loved! > > Jon, I'm expecting good results for your next testing. I've gotta go soon > myself to find out if my numbers are staying low. Happy Vday! > > The rest that we haven't heard from lately....keep in touch with us! I > don't read posts every day, but will eventually! > > So far I've gotten a birthday balloon, a big neat card, and many kisses > and vows of love from my hubby. Oh, also flowers! We've been celebrating > for two weeks. e-cards are so easy to send, and I have fun doing it, so > he's gotten candy twice and a physical card, and many e-mailed cards! He > knows better than to buy me candy, it's poison for a diabetic. I eat dark > chocolate anyway, lol. > > Blessings and 18's for life of course, Marty, > > Susan F. Zimmerman > "Look among the nations and watch; be utterly astounded! For I will work > a work in your days which you would not believe, though it were told you." > Hab. 1:5 > > > -----Original Message----- > From: Marty Gartenberg <wa2...@gmail.com> > To: cmlhope <cmlhope@googlegroups.com> > Sent: Fri, Feb 12, 2016 9:29 pm > Subject: Re: [CMLHope] Info update > > Susan, Susan what am I to do with you? you are so sweet and for this. I > have no doubt that everything will turn out well for you and your family > just as is has been doing for me, Shelly and our children. I'm sure that > you can imagine everything that I have been through and also so have you. > > I also see that you are using 18"s as you end all of your posts. Do you > know why? Because we and a lot of others share something. Life > > 18's again. > > Marty > > > > > On Fri, Feb 12, 2016 at 1:14 PM, 'Susan Zimmerman' via CMLHope < > cmlhope@googlegroups.com> wrote: > >> Dear Marty, >> >> So sorry to hear about the mouth sores and low wbc. UGH!!! We are all >> rooting for you to beat this problem with immunity ASAP. You are not >> complaining, just stating a reason for us to pray for you! If we don't >> know about it we can't zero in on it in intercessory prayer. You've got my >> prayers and I know those of everyone on here who prays to the most High >> God.. >> >> Two trips to Chicago have so far found nothing really wrong with my blood >> that would cause the stroke. This time they know it's from the bosulif, >> but waiting for results from the MRA and MRI that also happened. >> >> So I'm enjoying time off the TKI, and living life to the fullest every >> daY. EVERYONE have a wonderful Valentine weekend, please. If ya don't >> have a sweetie, know that you can treat yourself better than usual for the >> occasion! (Bubble bath, massage, favorite meal, etc. just for you). The >> rest of ya try to take good care of your significant other! (Of course >> don't fall for the media's need to spend lots of money...lol) >> >> Heartfelt love and 18's, >> >> Susan F. Zimmerman >> >> >> -----Original Message----- >> From: Marty Gartenberg <wa2...@gmail.com> >> To: cmlhope <cmlhope@googlegroups.com> >> Sent: Fri, Feb 12, 2016 4:04 pm >> Subject: Re: [CMLHope] Info update >> >> Ok, let's see what happens at your next blood test. >> I just had one this morning and sorry to say my WBC was only 1.87 so that >> puts me having a problem with immunity but I know that it is coming from >> the CMV virus that I am having so I have to be very careful until the >> reduced medication starts to work again. In the mean time I have gotten >> some terrible mouth sores just like I got when I had the bone marrow >> transplant caused by all of the Chemo and radiation. Something that I will >> never forget. Believe it or not that was by far the worst part of it. >> However I just try not to complain about it. And do you know why? I'm still >> alive today. >> >> And now you know what 18's stands for... Life! >> >> So I bid you many more 18's. >> >> Marty >> >> On Fri, Feb 12, 2016 at 5:49 AM, John Barrons <jl...@rogers.com> wrote: >> >>> Hi My wbc last Tuesday were 4.2, platelets 43 and hemo 103. I will next >>> have a cbc a week this Tuesday. John >>> >>> Sent from my iPad >>> >>> On Feb 12, 2016, at 6:59 AM, Marty Gartenberg <wa2...@gmail.com> wrote: >>> >>> Hi John, >>> >>> What are your WBC now? I know a man who lives in Canada a very long time >>> ago actually more then 35 years ago and he never took any TKI's but he did >>> take something and it did "burn out his Leukemia" but unfortunately he has >>> to have blood transfusions I think every two weeks. He is the longest >>> surviving person in this world. >>> >>> I probably am in there as well logging in going on 27 years after having >>> a bone marrow transplant. >>> >>> Different people react to different things and sometimes some of them >>> defies the logic of these things that are just meant to be. Hey you seem to >>> be one of them👍 >>> Good luck to you! >>> >>> Remember what 18's stands for. >>> >>> Marty >>> >>> On Thu, Feb 11, 2016 at 8:01 AM, <jl...@rogers.com> wrote: >>> >>>> I am taking ponatinib like Jeanie in Tampa. I need to take only one >>>> pill a week to keep the counts low. the counts do fluctuate from time to >>>> time. There does not seem to an answer for the white blood cells to have >>>> increased so suddenly. My oncologist did not think it was a change to blast >>>> phase. So I go once a week or once every two weeks to check them. John B. >>>> >>>> >>>> On Wednesday, February 10, 2016 11:06 PM, Marty Gartenberg < >>>> wa2...@gmail.com> wrote: >>>> >>>> >>>> Hi John, >>>> >>>> First let me say hello to your wife, and believe me I personally know >>>> what she has been going through. >>>> >>>> Now what I can't understand why your white blood count went over >>>> 100,000. And what pill have you been taking? Usually you need to be taking >>>> more then 1 pill and that should be every day. So John I am really puzzled. >>>> >>>> I wish you as well as your wife the very best, because of mainly what >>>> you wrote. Yes, life is good. >>>> >>>> If you have been reading any of my posts I always end them with 18's >>>> which is a symbol for life. >>>> >>>> 18's, >>>> >>>> Marty >>>> >>>> On Wed, Feb 10, 2016 at 4:45 PM, John Barrons <jl...@rogers.com> wrote: >>>> >>>> Hi Jeanie and to all: Well, where do I start. Before last Christmas, I >>>> was not feeling very well. My oncologist said if I felt worse go to >>>> emergency, which I did on Dec 26. I had pneumonia and as I result my heart >>>> was having trouble. In addition, my white blood count went over 100,000. I >>>> was in hospital until Jan 16 when I was transferred to a rehab centre to >>>> gain back some strength. I arrived back at home last Saturday, so glad to >>>> be home I can't begin to say. All is well as far as the things that were >>>> wrong. Mind you I have to gain a lot of weight back. The leukemia is back >>>> to normal and I am on 1 pill per week. That was along time to be away and I >>>> was difficult for my wife also. Life is good John B >>>> >>>> Sent from my iPad >>>> >>>> -- >>>> -- >>>> [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 CMLHope@googlegroups.com >>>> To unsubscribe from this group, send email to >>>> cmlhope-unsubscr...@googlegroups.com >>>> 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 mailto:cmlhope%2bunsubscr...@googlegroups.com >>>> <cmlhope%2bunsubscr...@googlegroups.com>. >>>> For more options, visit https://groups.google.com/d/optout. >>>> >>>> >>>> -- >>>> -- >>>> [CMLHope] >>>> A support group of http://cmlhope.com/ >>>> 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