Great news Susieq, Pain just has to be addressed and people just don't get it. Pain is a disease in and of itself and can cause many other problems. If you are like me, I don't like to take pills or be told I need a pain pill the rest of my life, but then there's the pain daily; you stand it as long as you can and then you take something. Maybe we should take the pain pill before the pain starts. My sister is in pain just like you and she had to go to pain clinic and get the injections. She is having knee surgery tomorrow and needs everyone's prayers. She is one brave woman! For the new warriors here, I was dx in Jan of 2004 and started on 400 mgs Gleevec. I never reached PCRU but my blood behaved most of the time. Then in 2009 the Gleevec quit working completely for me. I went out of hematologcal remission and my blood counts rose dramatically. I had to be put back in the hospital for blood cleanses and was put on Tasi. Tasi never did work well for me; I started having arthritis with trigger thumb and my knees started hurting. Then Tasi quit working completely and I was back in the hospital for blood cleansing once again. (need to say I had a lot of problems with Tasi and had to have several blood transfusions while on the drug along with the pain)
This is where my original onc that I had been with for 5 years and I parted company. He wouldn't agree to put me on Sprycel and put me back on Gleevec; his reason: he didn't know anything about Sprycel. While I was in the hospital with my blood counts still going high, a nurse that was once with Moffitt asked me why the doctor didn't put me on Sprycel? I told her I was trying to get him to do just that. The nurse must have talked with him, because a little later he came in and told me he was prescribing Sprycel. This hospital I was in didn't even have it and I had to get my son to go to the nearest Walgreens and they airlifted it over right away. This taught me a well learned lesson; go with the experts when you are really sick. I've been with Moffitt ever since. The Sprycel put me remission and have been that way now for almost 4 years. I like Moffitt and you can use their online web site to view your records and etc. They do a quantitative PCR every visit which is now every 6 months and they post all your test results online. Last blood test WBC 8.31 Platelet Count 313 My RDW are 50.2 and says that is high My mean cell volume is 99.0 and it says that is high Clinical Impression of Disease (since last visit) Complete Response/ No Evidence of Disease I am, like Millie having under the rib side pain and it gets intense at times. I take 50 mgs tramadol and it seems to help the pain. My onc seems to think it could be IBS but have no indigestion or symptoms just the pain. My side pain got really bad on Tasi. Keep fighting Warriors Blessings Jeanie<3 -- -- [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/groups/opt_out.
