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] <javascript:> > > > To: cmlhope <[email protected] <javascript:>> > 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] <javascript:>> > To: cmlhope <[email protected] <javascript:>> > 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] <javascript:>> 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] <javascript:>> >> To: cmlhope <[email protected] <javascript:>> >> 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] <javascript:>> 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] <javascript:>> >> To: cmlhope <[email protected] <javascript:>> >> 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] >> <javascript:>> 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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