Happy Thanksgiving Beth and all. I worry about you being off Sprycel but I know you have to do what you feel is best. I got sick the first of the year with bad jaw ache and just felt terrible. I took it upon myself to go off sprycel and by the time I got back to my doctor I had accelerated cml. he tested for mutation and I had one. That is when he put me in ponatinib. I am doing well but still have the Phillies in my blood. Keep a close check on your blood sweet Beth. Love❤️😇💋
My Motto: Faith and Pills Jeanie 🐟🐟18,s 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 Nov 25, 2015, at 2:13 PM, bkbarney via CMLHope <[email protected]> > wrote: > > thanks Richard.... And happy Thanksgiving Day to everyone tomorrow.. I hope > everyone here finds themselves in a place that is peaceful and lifegiving > this holiday. I wish you all a feel good kind of day in every way.... > > off sprycel for 2.5 weeks thus far.. initially felt a lot better..but last > couple of days..autoimmune...whatever is creeping in with that deep fatigue > in my muscles etc....doing detox..thanks for the advice all..I am going to > take some supplements I cannot take with sprycel in the hopes of cleaning and > calming my system... > > will keep you all posted..thinking of each and everyone here.... > > group hug. Beth. > -----Original Message----- > From: Richard H <[email protected]> > To: CMLHope <[email protected]> > Sent: Thu, Nov 19, 2015 10:47 pm > Subject: Re: [CMLHope] Test Day > > great news that you are getting a breather from the meds. I hope your counts > stay low enough you get a few MONTHS instead of weeks. We are praying for > that. > > Richard H. > >> On Thursday, November 19, 2015 at 7:27:26 PM UTC-6, Beth wrote: >> Dear Susan, >> >> Concerned to hear your news...I know you wanted to hear better..It's so hard >> when we hit an unexpected bump in the road....when are you coming back to >> see your doc? I am in town except for Dec. 12-19th...would love to meet you >> this time. And Greenie....will be in Fort Myers so hopefully can see you and >> your sweetie..and my other cml buddies who live down south...chemo >> brain...forgive me!. >> >> I have gone off everything...my BCR was good enough to take some time to >> cleanse my body...was just too sick....will go back on in a few >> weeks...enjoying GRAPEFRUIT!!! for a couple of weeks!. >> >> Love to all and a happy and healthy Thanksgiving to each and everyone of >> you... >> >> 18's and love, Beth >> >> >> -----Original Message----- >> From: 'Susan Zimmerman' via CMLHope <[email protected]> >> To: cmlhope <[email protected]> >> Sent: Fri, Oct 30, 2015 8:26 am >> Subject: Re: [CMLHope] Test Day >> >> Hi all, >> >> My bcr/abl results were not as great as I hoped. Last time I was >> .012.....almost to zero. This time I expected to be zero, but alas I am up >> to .348. So doc wants me to go to 300 mg bosulif, instead of 100 mg. I am >> compromising and will go to 200 so I don't have to stay in the bathroom all >> day. I was ready to get a local test next time and forego going to Chicago >> every 3 months. Now she wants to see me in one month after I up the dose. >> Ugh! So thankful I do have a wonderful doc even if I do decide myself on my >> dosage. She does not put me down about it, and supports me in every way. >> >> Beth, keeping my fingers crossed for you and saying a prayer. Marty, you >> are so loved and hope your kidney stuff is getting better. Your pics were >> beautiful. >> >> 18's and blessings, >> Susan Z >> >> >> -----Original Message----- >> From: Marty Gartenberg <[email protected]> >> To: cmlhope <[email protected]> >> Sent: Thu, Oct 29, 2015 10:11 pm >> Subject: Re: [CMLHope] Test Day >> >> Yes since everything has been going on I had leave my home in PA empty for >> nearly two years, but let me tell you something about that crisp clean air >> and simply beautiful colors of all of the trees that you can see for miles. >> An example is route 97 which separates upstate NY from PA with the Delaware >> river in between them. Route 97 goes from Port Jervis all the way down to >> past Hancock NY, and is considered the most scenic road it the United >> States. Right near Port Jervis there is route 97 winding like a snake on the >> edge of the road and is about 1,000 feet above the Delaware River. >> >> I have driven in that area and I wouldn't ever drive on it in the snow or at >> night. If by chance your ever there and I am in PA it is only right across >> the Robeling bridge which is actually a one lane wooden bridge only allowing >> one way of traffic then once it stops then the other way. >> >> I am wishing you well with your results. >> >> Don't forget to let everyone know. >> >> 18's, >> >> Marty >> >> >> >>> On Thu, Oct 29, 2015 at 6:31 PM, bkbarney via CMLHope >>> <[email protected]> wrote: >>> Hi all, >>> >>> Just saying hi! Wanted you all to know that I am thinking of you and >>> sending everyone a big hug and happy fall wishes... I know some of you >>> southern folks..will enjoy your 90 degree Florida temperatures coming >>> down...but us up north are enjoying the beauty of fall..it's cold today, >>> but should be back up in the 60's by Sunday....Indian summer.....I just >>> love it... >>> >>> did BCR on Monday..waiting for results..then will decide plan for next few >>> months... >>> >>> love, hugs and 18's to all, >>> >>> >>> Beth >>> >>> >>> -----Original Message----- >>> From: 'Icandoallttc' via CMLHope <[email protected]> >>> To: cmlhope <[email protected]> >>> Sent: Sun, Oct 11, 2015 1:07 pm >>> Subject: Re: [CMLHope] Test Day >>> >>> Hi Beth >>> I can never go off the meds either. My counts will shoot up fast. >>> Good luck >>> ❤️ >>> >>> My Motto: Faith and Pills >>> Jeanie 🐟🐟18,s >>> 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 Oct 11, 2015, at 1:43 AM, bkbarney via CMLHope <[email protected]> >>> wrote: >>> >>> Dear Jeannie, Richard, Susan, Marty, et al...thanks very much for >>> responding to my question. I am scared, but want to try something to help >>> myself. We will see what Dr.Druker has to say. In the mean time, what I do >>> know, having been off of sprycel for months at a time to deal with major >>> surgeries several times, is that I always come out of remission, and >>> quickly. I don't hold without the sprycel. Usually the cells are showing at >>> very low numbers, but it means that without the agent that keeps them in >>> check, cancer grows. I wish this were not so. And I know it's not for some >>> lucky folks. Maybe with time, this will change for me. For now I am >>> developing a plan..will keep you all posted. >>> >>> love and 18's Beth >>> >>> >>> -----Original Message----- >>> From: Marty Gartenberg <[email protected]> >>> To: cmlhope <[email protected]> >>> Sent: Thu, Oct 8, 2015 5:56 am >>> Subject: Re: [CMLHope] Test Day >>> >>> Hi Jeannie, Beth, Richard as well as everyone on this site, >>> >>> I have a friend (not had a friend, and still have this friend) who had CML >>> a little while after I had my transplant. At the time there were no TKI's >>> but there were only two things available. One was a bone marrow transplant >>> which was in it's infancy at the time and the other was Alpha interferon >>> but on an early study basis which actually was a blind study. Depending on >>> if those in this study would be receiving this Alpha Interferon or a >>> placebo. >>> >>> Even before my friend I had to chose the Interferon or the placebo in this >>> blind study. I spoke with a lot of oncologists about what to do. However >>> there were no concise answers because on one hand there was something that >>> was still in a blind study and who would know if that would even be given >>> to this patient or would the BMT be the way to go? >>> >>> However, since there were no matching donors, but one, his brother who >>> refused, and I could never understand that, but since there were no other >>> choices he had no other choice but to try that blind study. Well he was >>> lucky enough to be accepted. And I have to tell you that he really suffered >>> some really bad side effects for years afterwards. >>> >>> Eventually they were unable to detect any more CML, but he still refused to >>> go off of the Alpha Interferon and I suppose this was a crutch in his life >>> so he still remained on it for many years. So I guess that he finally >>> decided to go off of it. Once that happened his life took a dramatic turn. >>> No more side effects and no more CML, and he is still alive and doing >>> remarkably well today. >>> >>> As far as me, well my only choice was the BMT because of two reasons. Since >>> my white blood counts were at the time over 486,000 and doubtful that I >>> would survive, but basically the same thing with the BMT but at least I had >>> my sister as a donor who just happened to be a perfect HLA match. So I >>> tried the BMT, and it worked. >>> >>> But yet there is still more to this story and some of you might remember >>> Zavie Miller and all three of us used to get together, and called ourselves >>> The Three Musketeers. This was well after Zavie got to know Dr. Druker and >>> he was started on STI-571 which when approved by the FDA turned into >>> Gleevec. >>> >>> So after that we all turned into The Three Musketeers. All of this is >>> ancient history but my point is that whether to go off or continue on the >>> TKI's because you may be actually "cured" of CML but you may still hold the >>> touch of the crutch. So you see that there are different strokes for >>> different people. >>> >>> Fortunately I don't have to make the choice because I already did and >>> believe me I really did suffer, but in the end it was worth it. >>> >>> Now knowing what I would do if my circumstances were different I think that >>> I would be off these TKI's and live my life, and if something happens then >>> you will have to deal with it, and you will. Remember a crutch is a >>> terrible thing to have. >>> >>> I spend a lot of time trying to help, and your all very special people to >>> me as I am to you. >>> >>> Those are my words of wisdom and please never forget what 18's stands for. >>> It is life yours and mine! >>> >>> 18's >>> >>> Marty >>> >>> >>> i >>> >>>> On Thu, Oct 8, 2015 at 12:24 AM, Richard H <[email protected]> wrote: >>>> Just a quick glimpse about a med break. The end of March when I went to >>>> the hospital with Vertigo, The short break I had on medicine did wonders >>>> for me. Found some I shouldn't have been taking, stopped some all >>>> together. I have felt so much better that I would do it again under total >>>> control. Worried? Yes, but I realized afterwards it should have been done >>>> earlier. >>>> >>>> Richard H. >>>> >>>>> On Wednesday, October 7, 2015 at 4:27:30 PM UTC-5, Beth wrote: >>>>> >>>>> HI Jeannie and all, ...I am due for BCR abl testing so should get it in >>>>> the next two weeks, results two weeks later...so I will update when I >>>>> know more...Had a consult today at the Block Center here in >>>>> Illinois.People tend to love him or hate him... I really like him. He >>>>> thinks all my issues are sprycel related. Thinks I should go off >>>>> everything and have drug holiday to give my autoimmune system a >>>>> rest....steroids briefly to try and lower cpk so I can move better >>>>> without such a severe boomerang effect. Back issues are no worse. That's >>>>> good news from my end....since there have been several of my fellow >>>>> warriors here who have lost there remissions spontaneously after years of >>>>> successful treatment with their TKI's. I am scared to go off, unless I >>>>> have to ...ie. like I did for past surgeries....however, I am thinking >>>>> about it...perhaps I am just too toxic, and time off would help me to >>>>> rebuild and repair, and tolerate better the TKI"s when I re-uptake in the >>>>> future......so I am sitting with this decision..Not sure what I am going >>>>> to do...except pray, and listen to other's words of wisdom....I know if I >>>>> ask Dr. Druker, he would be fine with my taking a drug holiday..but I >>>>> emailed anyway......thoughts from my friends here???? >>>>> >>>>> >>>>> Love and 18;s, Beth >>>>> >>>>> -----Original Message----- >>>>> >>>>> >>>>> >>>>> From: 'Icandoallttc' via CMLHope <[email protected]> >>>>> To: cmlhope <[email protected]> >>>>> Sent: Wed, Oct 7, 2015 12:59 pm >>>>> Subject: Re: [CMLHope] Test Day >>>>> >>>>> Hi Beth and how are you?? >>>>> Would love to have an update on all. Thanks!! ❤️❤️ >>>>> >>>>> My Motto: Faith and Pills >>>>> Jeanie 🐟🐟18,s >>>>> 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 Oct 7, 2015, at 11:35 AM, bkbarney via CMLHope >>>>> <[email protected]> wrote: >>>>> >>>>> Dear Richard, >>>>> Sounds like good news all the way around. Hope your counts continue to >>>>> hold well and the November visit to the onc is a positive one! Your wife >>>>> is healing well..slow and steady. Thanks for sharing the good >>>>> news....Keeping you both in my thoughts and prayers. Beth >>>>> >>>>> >>>>> >>>>> -----Original Message----- >>>>> From: 'Icandoallttc' via CMLHope <[email protected]> >>>>> To: cmlhope <[email protected]> >>>>> Sent: Wed, Oct 7, 2015 9:26 am >>>>> Subject: Re: [CMLHope] Test Day >>>>> >>>>> Hi Richard and happy you are better. I hope your wife will be home soon. >>>>> Prayers always. >>>>> >>>>> My Motto: Faith and Pills >>>>> Jeanie 🐟🐟18,s >>>>> 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 Oct 7, 2015, at 12:01 AM, Richard H <[email protected]> wrote: >>>>> >>>>> All is good at this house. Saw Kidney Dr. and my tests have improved the >>>>> last 3 times. Took my CBC and I am keeping my Hem. is holding at 10. I >>>>> hope it stays there until the end of Nov. when I visit my ONC. >>>>> >>>>> My wife is improving, and will see the Dr. Oct. 21st to see if she can >>>>> start putting weight on the right side. Shoulder seems to be healing >>>>> nicely. She has the healing knot on the shoulder and is feeding herself >>>>> with her right hand and is raising the upper arm to almost shoulder >>>>> height without pain. We are hoping she can come home in Nov. when she >>>>> can get out of the wheel chair and up and down without help. Due to >>>>> heart surgery and a pacemaker all I can due is call for help if she has a >>>>> problem. >>>>> >>>>> 18's >>>>> >>>>> Richard H. >>>>> -- >>>>> -- >>>>> [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 >>>>> 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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 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