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. >>> >>> -- >>> -- >>> [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. >>> >>> >>> -- >>> -- >>> [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. >> >> -- >> -- >> [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. > -- > -- > [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. > -- > -- > [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. -- -- [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.
