Kelly..thanks for the information and the quick response! Looks like you had a different experience with Gleevec than me. Hopefully the lower dose will work for me. I was on a protocol with MD Anderson Cancer center when I first was diagnosed with CML. They put me directly on Tasigna. I found the side effects less than those for Gleevec...but it was toxic to my pancreas......you may be different. I am glad the Sprycel is working for you. Stay in touch! Tom in KY In a message dated 10/9/2009 6:36:03 P.M. Eastern Daylight Time, [email protected] writes:
Hi Tom: I don't remember much of my history (sheesh). I did not get a rash with the Gleevec. I had memory loss, visual disturbances (especially after reading and sunlight affected my sight something fierce - sunglasses made no difference) and nasty nightly headaches. Onc sent me to a Neuro-Ophthalmologist who determined that my problems were Gleevec-related. So, they stopped the Gleevec. My husband's employer changed insurance company's, my husband was laid off and delays in COBRA, etc., left me without treatment for 7 or 8 months (I still have to fight my insurance company to fill my Sprycel every month). Originally, my onc put me on 70 mg of Sprycel twice a day which I tolerated almost a week (couldn't breathe - conversational dyspnea). So, I ended up on 100 mg per day and have been tolerating that with the only side effect being headaches and weight loss, which I can live with. I must note - the Gleevec put me in complete molecular remission within 1 month of starting it (or so I was told). I have been on the Sprycel for 6 months and have not yet achieved remission, though my numbers are trending down and my blood work is good. Not complaining, I was so much sicker on the Gleevec. I was told that I would experience the same problems with Tasigna that I experienced with Gleevec. Good luck Tom, I hope you do well!!! Kelly On Oct 9, 4:43 pm, [email protected] wrote: > Kelly...I am Tom and having some Gleevec issues. I noticed you were on > Gleevec and had to stop. Did your side effects involve a rash? I would be > interested in what problems you had. > > I have had a bad rash and they have stopped the Gleevec for 2 weeks. They > are starting me back on Gleevec at a lower dose...300mg vrs 400mg. Here > is my abbreviated history: > > Tom Dunham, BD:8/1941 > DX CML 12-23-2008 > MDA Protocol: Tasigna-400mg; 2xday-1/09 > Q PCR @ 0.17 7/09 > Acute Pancreatitis-7/5/09 > Stopped Tasigna-7/13/09 > Q PCRU-7-29-09 ! > Started Gleevec-400mg-7/31/09 > Developed rash ~ 8/19/09 > Rash treated with Steriods..improvement > Rash worsens~9/22/09 > Stopped Gleevec-9/28/09 > Restarted Gleevec @300mg-10/8/09 > > Sorry about your flu....I do know that H1N1 cannot be diagnosed easily...it > has to be done in a lab...most docs don't have the necessary test setup. > > You can go to Drugs.com to check for Sprycel interactions...but I would > check with your oncologist first before taking anything. > > I am interested in how you are doing with Sprycel. I had been on Tasigna > and had to stop because of toxicity issues. I am now on Gleevec...and > having problems. Sprycel would be the next one to try.. > > I found Tasigna to be great...got to PCRU in about 7 months...only problem > was it was killing my pancreas. You might want to try that one too if > Sprycel doesn't work. > > Regards, Tom in KY. > > In a message dated 10/9/2009 2:47:27 P.M. Eastern Daylight Time, > > [email protected] writes: > > Hi everyone: > > Been quite some time since I've posted... I have the stinking flu. > Went straight to my chest. I have a terrible cough, low-grade fever, > headache, sore throat (diminishing), and runny nose. How do you know > when to go to the doc and when to just let it run its course? I guess > I feel somewhat better, throat isn't as sore as it was but the cough > is harsh and punishing, relinquishing very little with extensive > effort. > > I'm on Sprycel - BTW, the CML is back after my 8 month hiatus from > Gleevec due to side effects. In other words, I am no longer in > molecular remission. Just found that out although my doc has known > since at least May. I have the results of my last BCR-ABL although > reading it is like trying to decipher Sanskrit. Means squat to me. > > Anyhoo, I emailed my NP regarding the flu and 2 days later, still no > answer. I don't want to go to my GPs office and risk infecting others > - BUT - how do you know you have the "flu" versus something more > serious - such as H1N1. I looked up the comparisons, both apply. Can I > take an antiviral agent with the Sprycel? > > Any advice would be greatly appreciated. (I did get my annual flu shot > a week or 2 before getting this "flu"). > > Sincerely, > > Kelly --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
