Hi all, Just wanted to say that I never had the bone pain most cml'er have. My onc told me he had a patient that was in so much pain he could hardly bear it. But my pain was in my side under my right ribs. I do feel my heart beat where the pain is, so maybe that's one of my problems. Feeling this heart beat keeps me awake at night along with the pain. Thanks for your input Marty and Beth. Good luck with your kidneys Marty. Your positive attitude is very uplifting to me when I think of what you face every day. Blessings, Jeanie<3 In a message dated 12/13/2013 10:45:57 P.M. Eastern Standard Time, [email protected] writes:
Hi Mar, Beth is correct. When you have Leukemia you have an access of immature white blood cells. It usually occurs in the large bone cavities like in your sturnum or pelvis or anywear else in your body. The excess of the white blood cells cause pressure in your bones and sometimes it feels like your having a heart attack. Let me know if you have this symptom. Every time yout heart beats you get the pain in sync with your heart beats, usually at night but it could be any time, and you may not necessarly feel this kind of pain at all. About two years ago my kidneys started failing so I decided to have some stem cell therapy. What it was, was two injections of nuprogen every day for two weeks including Sat and Sun. This gave me unbarable bone pain because those neuprogen injections made my white cells getting more and more, and in doing so it was pushing against my bones within the marrow. Unfortunatly for me it didn't work and I am now on dialysis waiting for a kidney transplant. Who ever said life was good? But it is our lives and we must do what ever we can to keep on going. Now Beth, relaxation is part of this. I'm glad that you started feeling better after the therapy I mentioned to you. Keep it up! 18's everyone, Marty On Fri, Dec 13, 2013 at 9:46 PM, <[email protected]_ (mailto:[email protected]) > wrote: Dear Mar, I hope you feel well held here..aren't these folks great! I love them all., anyway, I was reading...the beginning really can be very trying...and you are having a definate rough time, no doubt. You may already know this, but just wanted to share it in case the doc didn't mention it, I learned this from other warriors....when your body is killing cancer cells, and our cancer is in our bone marrow, it's common for people to have bone pain, sometimes very intense. While it can be a side effect of the medicine itself, it can also be a temporary issue that improves with time, as there are fewer and fewer detectable cancer cells..hopefully one day none showing!!! My bone pain was bad at first, but I have none now....except for when I had to go off meds for a long time for a surgery and my numbers went up...when I went back on the sprycel initially I had that pain all over again..but it did get better. Again, I know that that can be a side effect of the medication itself in some people. I am hoping for you that over time, it is not an issue. I will keep my fingers crossed for you as I do for all of us here... did blood work today at U of C. Everybody please send good energy for a great outcome. I have to have another back surgery..healing from cervical surgery pretty well now..in PT.. have to go off sprycel again for a time to do this next surgery ......Four major surgeries in two years...on and off these meds...like Tom said...stay positive, try to stay strong and move your body in some way., Best, Beth -----Original Message----- From: TEDBDD <[email protected]_ (mailto:[email protected]) > To: cmlhope <[email protected]_ (mailto:[email protected]) > Sent: Fri, Dec 13, 2013 8:40 am Subject: Re: [CMLHope] Re: Getting Results Mar....welcome to the group! I, too am on 20mg of Sprycel (disatinib) after difficulties on Tasigna, Gleevec and higher doses of Sprycel. My journey is outlined in the notes at the bottom of this email. I would recommend you establishing the same...it is really helpful in letting others know what your journey has been and doctors love it if you have to change physicians. Each person seems to react a little differently to these Tyrosine Kinease Inhibitors...I find that exercise and a positive attitude are the best tools to deal with the speed bumps we have on our unique CML journeys. Collectively, we are so fortunate to have these amazing TKI drugs available to us...for we probably wouldn't be around without them! All the best...and Dave is right...you can get a lot of info from this group! Tom in KY Tom Dunham, BD: 8/1941 Updated:12-13-13 Zavie Miller's Zero Club #1292 DX CML 12-23-2008 MDA Protocol: Tasigna-400mg; 2xday-1/09 On Flecainide for AF...still had frequent episodes Q PCR bone@ MDA…0.17 on 7/09 Acute Pancreatitis-7/5/09 Stopped Tasigna-7/13/09 Q PCRU blood @ Baptist…undetected-7-29-09 ! Started Gleevec-400mg/day-7/31/09 Developed rash ~ 8/19/09 Rash treated with Steroids..improvement Rash worsens~9/22/09 Stopped Gleevec-9/28/09 Restarted Gleevec @300mg/day-10/8/09 Stopped Gleevec-10/13/09-toxic rash\ AF returned infrequently Q PCR bone-0.05 Started Sprycel @ 100mg/day-10/20/09 Some AF...increased FLecainde..1, 2x/day Q PCR bone @ MDA..0.07 Stopped Alcohol…no AF, ½ Flecainide 2x/day Q PCR Blood @ Baptist…Non Detectible-12-13-10 Q PCR Bone @ MDA..0.01--2-25-11 Q PCR Blood @ Baptist…Undetectible-5-19-11 Reduced Flecainide to 1/2 per day Pleural and pericardial Effusion: stopped Sprycel-12-6-'11 Prednisone 50mg /day to combat PE; 12/14/'11 gradual reduction Pleural Effusion clear 12-21-11 Started Sprycel 70mg/day..12-23-11 QPR bone @ MDA.. <0.01...2-16-12 Started Sprycel 50mg/day..3-10-12 Chest pains...slightly more PL Eff 4-19-12 Steroid Dose pack to alleaviate..still on 50mgs Change to 20 mgs/day Sprycel..4-26-12 Chest clear, effusion gone-5-14-12 Q-PCR Blood @ Baptist-Undetectible-6-13-12 Neuropathy moving up legs, some weakness noted--12 Q-PCR Blood @ MDA..<0.01…8-21-12 Q-PCR Bone @ MDA…<0.01….3-5-13 Q-PCR Blood @ Baptist….Undetectible..6-19-13 Q-PCR Blood @ MDA...Undetectible...9-19-13 In a message dated 12/13/2013 6:34:37 A.M. Eastern Standard Time, [email protected]_ (mailto:[email protected]) writes: Hi Mar, I've been with this group of people starting I think back in 2001. Found out I had CML two weeks before Xmas of 1998. Was put on Interferon for 3 months which almost killed me. A couple of months later my Doctor in Chicago, Northwestern University put me in a study with 7 others people from Chicago land. I was the only one from Northwest Indiana. Their were 200 people from the US in this study. Novartis was head of the research of this study. This was before Gleevec was approved by the FDA. Within 6 months I was in remission and I've been on STI571 (Gleevec) all these years. Started on Jan. 10th of 2000. You will find out that in this CML group you will get more information from our members and their care takers that you won't get from most Doctors. If at any time you have any questions this is the place to get the real facts. Good luck to you and welcome to the group. Dave (Greenie) Greenberg In a message dated 12/13/2013 2:15:03 A.M. Eastern Standard Time, [email protected]_ (mailto:[email protected]) writes: Thank you everyone for responding. Feels less like you are on an isolated island... there are no support groups in my area... so, I do appreciate your emails with encouragement and support. I was glad to hear there are other medications. I gather this is a long journey... to figure out which drug and at what level... not one that can be answered quickly. I find the side effects difficult to deal with as I continue to work. Not sure if it is possible to work while all of this is being figured out. Do most people continue working? Richard, diagnosed in 2003 and there are still mountains? I guess I am expecting to much to soon. Beth, My hematologist specialist didn't put me on the 100mg I was on at the beginning because of the first toxicity. I have been on 20 mg which doesn't seem to be much but, I can't believe my body doesn't even like the 20 mg... I just learned today I am back into the toxicity and cytopenias. I have side effects to Diasanatib I didn't have on the Gleevec as well. I found the 100 mg gave me insomnia, medically induced depression and rash... I only have the rash at 20mg. But, seem to have a lot of bone pain lately. I am giving you all a big hug and thank you for your emails as it is nice to know there are people who understand much more than I do (being such a newbie). I look forward to hearing from all and learning from you. I hope all of you are doing well in your own journey :) Ididn't know that 1and 8 meant life.. will post this in front of me for inspiration! Cheers, Mar On Thursday, December 12, 2013 8:25:25 PM UTC-8, Richard H wrote: Welcome to this group. Almost every one has had problems adjusting to the meds. Try your best to remain positive as that seems to help most of us. We are here to listen and in return we give back what we have learned to get over this little hill at this moment. I was diagnosed in 2003 and the mountain I have to climb is still on the horizon. Richard H. On Thursday, December 12, 2013 8:42:51 AM UTC-6, Mar wrote: Hi, I am new to the group. I was diagnosed January 10 2013. Since then I have been on Gleevec, failed (due to toxicity twice) and was switched to Dasatinib which I have toxicity to as well and had to stop taking the medication. Each time I have had the toxicity my blood levels are so low that it takes 4-5 weeks for them (neutrophils, platelets and wbc's) to go back to even the lower range of normal. Thus, I have not yet had any cytogenic or molecular recovery.. if anything, my last result was going backward. I have another appointment on December 19th to see if there is any recovery at all... I am keeping my fingers crossed. It has been quite the roller coaster... I am not sure if others have had the same type of roller coaster in the first year. I just ran into this group tonight and I appreciated reading others emails about their recovery... thank- you.. Hope to be able to post one of my own recovery stories one of these days. Mar -- -- [CMLHope] A support group of _http://cmlhope.com_ (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]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[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]_ (mailto:[email protected]) . 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