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. 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