I meant I had a Bma in jan. They put me to sleep so I don't mind it. 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 Aug 11, 2015, at 6:01 PM, "'Icandoallttc' via CMLHope" > <cmlhope@googlegroups.com> wrote: > > Hi Greenie and good to hear from you. > That's a lot of tests. > I think Moffitt depends on the PCR test. I had one in jan. > I only had 2 with my first onc and I was with him for 5 years. > My onc at Moffitt will probably want another one soon. > > 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 Aug 11, 2015, at 5:32 PM, Myvety2k via CMLHope <cmlhope@googlegroups.com> >> wrote: >> >> Hi my CML friends and care takers, just want to add to the BMB's that when >> I received my first one was two weeks before Xmas that was 1998. If I were >> to count all of them their would be around 27 to 28 of them. Now that they >> use all blood to get the results that makes me a happy camper. Blood tests >> I can't begin to keep count and their was a time I couldn't stand to get >> one, I remember you had to get one to get married almost kept me from doing >> that. >> >> I was on active duty with the Navy for over a year before they caught up to >> me and I received all of my shoots at one time, two very sore arms from that. >> >> greenie >> >> In a message dated 8/11/2015 5:20:55 P.M. Eastern Daylight Time, >> cmlhope@googlegroups.com writes: >> So sorry you had to go through that. It hurts!!! >> I had one without any pain killer when I was first dx. It was in the >> doctors office in my first visit. >> My next BMA was in a hospital under sedation and my others ones were too. >> The ones done at Moffitt cancer center were the best. No hip pain later. >> Marty you are so right about mind set because we are all getting push back >> and forward >> My recent blood test was not good and it made me sad. I had been doing so >> well on ponatinib. >> My WBC were up 2 points 12 but what worried me most were my Kidney counts. >> My PCD said I had chronic kidney disease but I have never had those high >> counts before. It must be the new tki. >> So I must just hang in until my next test in sept. >> Blessings all >> >> 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 Aug 10, 2015, at 4:10 PM, Marty Gartenberg <wa2...@gmail.com> wrote: >>> >>> Hi Angie, >>> >>> In my long list of my bucket list I have gone through seventeen bone >>> marrow "gathering" expeditions, BMB's or MBA's, to many to count so why not >>> take your pick? >>> >>> But is each one of them they hurt but I had a name for them, A.R.P.I.T.A. >>> (A real pain in the Azz) and so it was in the early days of the >>> A.R.P.I.T.A. But I got through it. By the way there was nothing about >>> having any pain killers only the four syringes of 2% lidocaine, which did >>> nothing. At least they only lasted for several seconds. >>> >>> I think that the longest amount of these needles were probably around 30 or >>> more. And that is still a close friend of mine Skip. Oh by the way he has >>> gone through I think about 30 years or more of CML without even taking and >>> TKI's or any bone marrow transplants. I believe we are looking for a >>> Guiness world book of records. >>> >>> 18's >>> >>> Marty >>> >>>> On Wed, Jun 17, 2015 at 8:35 AM, ANGELYN ESDERS <esd...@rogers.com> wrote: >>>> Thanks, Marty. I am having no great emotional upheaval over quitting >>>> Gleevec. Whatever will be, will be, and everything is a learning >>>> experience. It just feels strange after 14+ years. >>>> >>>> In other news, Monday a new platelet dr. decided to do a BMB. >>>> You won't believe this: It took him FOUR tries to get a viable sample. >>>> Never had this happen before. Four crunching entries. >>>> Sort of like having four BMB's at the same time. Afterwards I was almost >>>> in a state of shock and could not stand, nauseous, very stressed. (In >>>> Canada we do not get sedation or morphine for this procedure.) It took me >>>> 90 minutes to de-stress and had to drive myself home because he had not >>>> warned me that he intended to do this and to bring a driver along. There's >>>> one doctor who will NOT be doing another BMB on me!! I think he needs a >>>> few more lessons in how to do it. >>>> >>>> Anyway, I am fine....still low platelets. Life goes on..... >>>> Angie >>>> >>>> >>>> From: Marty Gartenberg <wa2...@gmail.com> >>>> To: cmlhope@googlegroups.com >>>> Sent: Wednesday, June 17, 2015 7:29 AM >>>> Subject: Re: [CMLHope] Stopping Gleevec >>>> >>>> Hi Angie, >>>> >>>> You are not thee only one that has stopped your TKI and felt that way. >>>> sometimes something that we take as far as any TKI's ends up being a >>>> crutch for us and we always seem to worry if this or that will come back >>>> to haunt us. It is a normal human response and we worry about it. >>>> >>>> Angie, since your really feeling better without the Gleevec then you >>>> should learn to live your life in the best way that you can. >>>> >>>> I have seen this many times before. A man that both Zavie and I knew was >>>> on Alpha Interferon and suffered immensely from it's horrible side >>>> effects. He suffered for many years and when he was finally PCRU everyone >>>> told him to stop using it anymore but he still continued still suffering >>>> because it had become a crutch for him. He had the same feelings as you >>>> now have and after a lot of coaching from everyone he finally >>>> stopped it. >>>> >>>> He has been off of it for many years and no reoccurrence of CML ever came >>>> back to him. His system finally "burned out" his CML. >>>> >>>> Remember that everything in life has a double edged soared. If you do >>>> something will it come back to haunt you or if you don't do something will >>>> it come back to haunt you?? >>>> >>>> I just can't live my life that way, and if something does come back then I >>>> will deal with it. >>>> Remember me telling everyone that Leukemia is both a disease of not only >>>> the body but it also poisons the mind. >>>> >>>> Angie, why not start writing a diary and put everything in there that you >>>> have gone through the day? I do it and it lets me reflect about what I >>>> could have done better or worse during the day. I call it my frustrations >>>> and how to deal with them, and it really works for me as I am sure it will >>>> also work for you or anyone else. By the way I see that Giora sent you his >>>> response. read it if you haven't as yet. >>>> >>>> Here is something called "expect the best" Please read it and it will also >>>> help you with yourself. >>>> >>>> One last thing. I am not a doctor but have gone through a lot of things in >>>> my life health wise as you already know. Have you ever wondered why I am >>>> still alive? I did at one time but maybe it is because I try helping >>>> others as a promise that I once made to GOD and also received help myself >>>> from others. It is a two way street, or I am the luckiest son of a bitch >>>> on this planet ??? >>>> 18's, >>>> >>>> Marty >>>> >>>> >>>> EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF >>>> CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN >>>> YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET >>>> (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET. >>>> WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF >>>> MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING >>>> INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU >>>> THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY. >>>> EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE >>>> BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE >>>> SUCCESSFUL OUTCOME... >>>> FOCUS... >>>> 18's, >>>> Marty >>>> >>>> >>>> >>>> On Tue, Jun 16, 2015 at 9:02 PM, ANGELYN ESDERS <esd...@rogers.com> wrote: >>>> I just received an email from my oncologist telling me that it is safe for >>>> me to stop Gleevec for 3 months. >>>> I started Gleevec in January 2001, and reached cytogenic remission in July >>>> 2001. >>>> I've continued on 300mg per day. >>>> I was in the study for 12 years. >>>> I feel like it is my safety net between wellness and reoccurrence of CML. >>>> I am almost afraid to stop it. I no longer have any side effects from it. >>>> Who has stopped Gleevec, and what have you experienced as a result of >>>> doing so? >>>> Thanking you all for your input... >>>> Angie in Canada >>>> -- >>>> -- >>>> [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 cmlhope+unsubscr...@googlegroups.com. >>>> For more options, visit https://groups.google.com/d/optout. >>>> >>>> -- >>>> 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