Jeanie...hope you are doing well! Tom In a message dated 3/12/2013 6:02:06 P.M. Eastern Daylight Time, [email protected] writes:
Good to hear from you Ted. Jeanie Sent from my iPhone On Mar 12, 2013, at 1:11 PM, [email protected]_ (mailto:[email protected]) wrote: Myl... Don't be too nervous about switching drugs...as you can see from my history below, I have been on 3 TKI's and Sprycel was the answer for me. In fact they had to drop the dossage level from the standard of 100mg/day to 20mg/day because of pleural effusion issues. So far it seems to be keep the CML under control and the side effects are much less than on Gleevec and Tasigna. You might want to start a brief history of your journey as some of us do so that you can communicate the highlight of your journey easily with other CMLers (see below). I have found that each of us seems to react differently to these wonder drugs so you just have to keep experimenting until you find one that works with livable side effects. All the Best! Tom in KY Tom, BD: 8/1941 Updated:8-27-12 DX CML 12-23-2008 MDA Protocol: Tasigna-400mg; 2xday-1/09 On Flecainide for AF...still had frequent episodes Q PCR bone@ 0.17 on 7/09 Acute Pancreatitis-7/5/09 Stopped Tasigna-7/13/09 Q PCRU blood-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..0.07 Stopped Alcohol…no AF, ½ Flecainide 2x/day Q PCR Blood…Non Detectible-12-13-10 Q PCR Bone..0.01--2-25-11 Q PCR Blood…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 <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-Undetectible-6-13-12 Neuropathy moving up legs, weakness noted ~7-12 Q-PCR Blood MDA-<0.01…8-21-12 In a message dated 3/11/2013 2:55:44 P.M. Eastern Daylight Time, [email protected]_ (mailto:[email protected]) writes: It seems Gleevec is the first line of defense for CML and is used for other cancers as well. I experienced most the side effects everyone else does but also had severe skin irritations and rashes all over my body. While it brought my WBC counts to a normal range, I just couldn't stand it any more. My onc put me on Sprycel (dasatinib) and I maintained good blood cell counts without all the side effects. I still have minor skin irritations but I can control that with topical lotions and continue to work. No cramps, bone aches, nausia, or diarhea and not the fatigue I had on Gleevec. There are new drugs approved now but Gleevec has been around the longest and is known to work so they usually turn to it first. You will learn to live with CML and get to where it does not take such a toll on your body. On Wednesday, March 6, 2013 11:12:35 PM UTC-6, myli...@_yahoo.ca_ (http://yahoo.ca/) wrote: I was diagnosed with CML in Oct 2012. It was funny, I thought what I was feeling was stress related due to my job and/or perhaps early onset of the change of life. Symptoms were extreme fatigue, waking up tired after a full nights sleep, night sweats and fever, weight loss and discomfort when sitting. Finally went to a doctor and asked them to check my hormone levels and do a complete physical. Dr sent me for an ultra sound too because of a hard lump in my side. Turns out my spleen was twice the size it should have been and my blood test came back with really high white cells, low red cells and high platelets. Dr referred me to an Oncologist who has put me on Gleevec. Today, my white cells are within normal, my red cells are still a little low and my platelets remain higher than they should be. Had to go on a disability leave from work due to the pain from trying to sit - from the enlarged spleen and joint pain. Have been off work since late Nov 2012. I currently have been experiencing pain in my hip and knee joints, as well as excruciating pain in my shin bones. Is this normal? Is it the Gleevec causing it, or the leukemia? Also having really weird muscle cramps - charlie horses in my legs that hurt bad enough to make me cry and cramping in my fingers and toes. Feels like my hands and feet will never be warm again....am really looking forward to summer. Anyone else experiencing this? The Oncologist says I might have to try a different drug which is scaring me, as Gleevec has brought down my white counts...what if nothing else works? Has anyone found anything that relieves the pain? I've tried A535 and hot baths, heating pads etc Have been told I can't take aspirin, tylenol or advil as they interact with Gleevec. GP recommended trying massage therapy, but when certain spots on my knees and legs are touched I can't bear it. Would be really interested to hear if anyone else has found something that helps.... -- -- [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_ (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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