Hi Marty:
My onc/hematolgist is friendly with Dr. Talpaz. He said he needs to see at least a year of undetected before even considering lowering the dose or taking a trial vacation. I have a ton of arthritis and the Gleevec, in my opinion, has exacerbated it so that adds into the pain. I do try your outlook - look on the sunny side and be grateful for all of the good things. It gets me through and I do work so I just try to put the pain in a box and hide the box for as long as possible. How are you doing? Do you have any idea of when a transplant may happen? I think about you a lot and send lots of prayers your way. I know Shelly is right by your side, as she has been these many years. You always lift all of us up and we appreciate it more than words can say. 18's back at you. Marcie -----Original Message----- From: Marty Gartenberg <wa2...@gmail.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Wed, Jul 16, 2014 10:30 pm Subject: Re: [CMLHope] Bone Pain Hi Marcie, First you shouldn't have to be suffering this bone pain. What is probably happening is a reaction to the TKI that your on. Now that you are PCRU for the second time in a row, maybe you might consider getting in touch with some of the worlds renown CML specialists like Dr. Brian Druker or Moshie Talpaz and ask for their advice of taking less or maybe even stopping your TKI. I think they would be the ones to ask, and Marcie it never hurts to ask you just might be pleasantly surprised to be able to rid yourself of the bone pain. I know a lot of people that through their doctors advice have gone off of their TKI, but as I said you really need to talk to these CML specialists. 18's, Marty On Wed, Jul 16, 2014 at 9:12 PM, 'Marcie Goodman' via CMLHope <cmlhope@googlegroups.com> wrote: > Thanks, Jeanie. I'll try the castor oil and let you know. The baths help > but I work full time and a lot of the pain is going on during that time so > obviously I can't take a bath til evening. I just got my 3 month bone marrow > results and hit undetected, same as the prior one in March. A first for me - > two undetecteds in a row. If I have to suffer bone pain to have the cancer > cells gone, I'll stop complaining and take it! > > Hope all is well with you. I remember that you had a nice, long vacation. > Please let us know how you are doing. > > Hugs, > > Marcie > > Sent from my iPhone > > On Jul 13, 2014, at 8:22 AM, ICANDOALLTTC via CMLHope > <cmlhope@googlegroups.com> wrote: > > Hi Marcie, My dau did acupuncture for migraines with no relief whatever. > Have to tried hot epsom salt soaks? Try massaging with castor oil; I > massage every night; get the organic kind at your health store or order it > online. > I remember my first onc telling me he had a patient on Gleevec with severe > bone pain, but I never had it. > Gleevec never worked very well for me either, so maybe the bone pain lets > you know it's working. > Hang in there. > Blessings, > Jeanie<3 > > In a message dated 7/10/2014 4:15:52 P.M. Eastern Daylight Time, > cmlhope@googlegroups.com writes: > > Has anyone tried acupuncture to relieve bone pain? 5+ years on Gleevec is > really taking a toll on me and nothing, not even the hard core pain killers, > help. I've discussed with my onc and internist and they said try the > acupuncture but they don't think it is going to help. > > Marcie > > -- > -- > [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. 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