Hi Marcie, I think I told you this but I'll repeat it. When I was going to my first onc he told me he had a patient that had so much bone pain, he could barely stand it. He was wondering why I didn't; but I just don't know why. I had a lot of other terrible side effects; boils, itches, nausea, tiredness, chills, fever, and etc. Take care of the pain if possible and you might think of changing meds. Blessings Jeanie<3 In a message dated 7/17/2014 6:09:45 P.M. Eastern Daylight Time, [email protected] writes:
Hi Marcie, I didn't want to miss any comments I have so I will write in between your lines. 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. MARCIE I CAN UNDERSTAND THAT BUT YOUR ON THE RIGHT TRACK SO JUST HANG IN THERE. THERE WILL BE A DAY THAT THIS WILL ALL WORK OUT FOR YOU BECAUSE THERE IS NO OTHER WAY THEN REGAINING YOUR HEALTH ONCE MORE. I have a ton of arthritis and the Gleevec, in my opinion, has exacerbated it so that adds into the pain. YOUR MOST PROBABLY CORRECT ABOUT THE GLEEVIC ADDING TO YOUR PASIN. I JUST HOPE IT WILL BE AS MILD AS IT CAN. 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. IF I DIDN'T HAVE MY OUTLOOK ON LIFE I WOULDN'T BE HERE RIGHT NOW. I LEARNED A LOT ABOUT OUTLOOK WHEN I USED TO LIVE IN THAT PLASTIC BUBBLE FOR ALL OF THOSE MONTHS. YOUR IN THERE AND IT JUST GIVES YOU THE TIME TO THINK. YOU CAN THINK ABOUT LIVING OR DYING SO I PUT MY MIND INTO LIVING. 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. MARCIE, I CAN HONESTLY SAY HOW MUCH I LOVE SHELLY FOR WHO SHE IS AND WHAT SHE HAS DONE FOR ME. WHEN I FIRST GOT LEUKEMIA I THANKED GOD THAT IT WAS ME RATHER THEN SHELLY OR OUR CHILDREN. WE ARE NOT WEALTHY BUT I DECIDED TO BUY SHELLY A BEAUTIFUL GIFT FOR HER BIRTHDAY AND OUR ANNIVERSARY. IT IS A GOLD THREE CLOVER LEAF NECKLACE WITH DIAMONDS IN THE CENTER WITH CHOCOLATE DIAMONDS FILLING EACH OF THE THREE CLOVER LEAFS AND A GOLD CHAIN. WE BOTH WENT TO THE JEWLER AND HAD HIM DESIGN IT ESPECIALLY FOR HER. AT LEAST THAT WAS SOMETHING THAT I CAN DO FOR HER AND IT MADE HER VERY HAPPY. ANYWAY, I AM LIVING UP TO A PROMISE I ONCE MADE TO GOD, AND YOU ALREADY KNOW WHAT THAT WAS, SO I AM HAPPY TO KEEP MY PROMISE. THANK YOU FOR YOUR THOUGHTS AND PRAYERS, I REALLY APPRECIATE THEM VERY MUCH. I DON'T KNOW WHEN OR IF MY KIDNEY TRANSPLANT WILL COME ABOUT, FOR NOW IT IS A WAITING GAME 18's back at you. AMD MARCIE MY 18'S RIGHT BACK AT YOU. I WISH YOU HEALTH AND HAPPINESS. Marty On Thu, Jul 17, 2014 at 3:21 PM, margood18 via CMLHope <[email protected]> wrote: > 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 <[email protected]> > To: cmlhope <[email protected]> > 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 > <[email protected]> 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 >> <[email protected]> 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, >> [email protected] 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 [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. > > -- > -- > [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. 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