Hi Jeanie: It has taken me 5 years on Gleevec to reach not detected. First was on my 5 year anniversary of diagnosis in March and then again following my last BCR-ABL in June. Prior to those two tests, my levels were only trace amounts. We discussed many times switching meds but I felt strongly that I was used to Gleevec and it's side effects and, for the most part, many of those effects got better or disappeared.
I do not want to start a new TKI unless I lose my response. I kind of feel that I'm better off with the devil I know. I'm getting ready to try acupuncture and I have more than a little confidence that it will help. I also have tons of arthritis and Gleevec has made that much worse. I figure that some pain is worthwhile to undergo to sustain such a positive response on my med. How are you doing with the insomnia? I have that issue, too, but so do most people I know, even those who don't have CML but are over age 60. I take an ambien at night and at least I get about 5 hours solid sleep on it. Hugs, Marcie Sent from my iPad > On Jul 20, 2014, at 9:18 AM, ICANDOALLTTC via CMLHope > <[email protected]> wrote: > > 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 > >> 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