Same journey as Ted Dx 2004 Gleevec Tasigna Sprycel Hang in there Jeanie Sent from my iPhone
On Mar 12, 2013, at 1:11 PM, [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] 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, [email protected] 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 > ------------------------------------------------- > > 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. > > > > > -- > -- > [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. > > -- -- [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.
