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 <[email protected]> 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 <[email protected]> > *To:* [email protected] > *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 <[email protected]> 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 [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 > ------------------------------------------------- > > 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 > ------------------------------------------------- > > 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 ------------------------------------------------- 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.
