Chronic Myelogenous Leukemia (CML) Support Group

Chronic myelogenous leukemia affecst the balance of blood cells in the body, disrupting the normal balance. The cancer cells eventually begin to outnumber and push out the good cells, and could lead to anemia and easier bleeding/bruising. If you or a loved one is diagnosed with CML, this is the community to discuss your experience.

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Tasigna lost remission

I have had CML for 7 months. Started on Tasigna. I had a major molecular response. It seemed to good to be true. Last genetic test shows increase in BCR/ABL. I'm very worried. Has anyone started to lose "remission" and then regain it? If Tasigna isn't working, ny last option is Sprycel.
Anyone switched from Tasigna to Sprycel because Tasigna not working and how are things going?
DJ

Replies

deleted_user
deleted_user

try not to get too upset yet, there are a lot of variables here. First, when you say BCR/ABL increased, how much did it increase? PCR's are not the most reliable and acurate tests. Generally problems are determined in trends and large increases greater than 1 log. So where did you start, where were you when you were told you had MMR, and where are you now?

In the event you are resistant to Tasigna, Sprycel is not your last option. You need to figure out why Tasigna isn't working for you. Your doctor should run a mutation test to determine if there are mutations at work making it more difficult to treat you. If there is a mutation and depending on the type, Sprycel could do the trick. Otherwise, there are other options depending on the issue.
deleted_user
deleted_user

Hello I am a new member here and I'm trying to get used to all of this. My father was on Tasigna for about a year and then it stopped working. Has Sprycel worked for you???
deleted_user
deleted_user

My WBC was rising and went to high normal when a mutation was discovered. I've been on Sprycel for about a month and a half and my WBC is now in the mid-normal range. I feel great and my WBC stopped increasing but I won't know anything for certain until my molecular testing results come back in a month. I'll keep you posted Bbell. DJ
deleted_user
deleted_user

Thanks DJ, I'm so happy that it is working for you and I pray that things just keep getting better! Glad i found a support group. I'll keep you posted about my dad and would love to hear about all of your success as well!
deleted_user
deleted_user

Thanks and I'll keep you posted as I hope you'll keep me posted. I have a 35-nucleotide insertion that is Tasigna resistant. I've known about my CML less than a year. I took a new job and I'm certain that I'll be around a long time. I will die with CML but not from it. Your dad will do the same. In 12 to 18 months a new drug that shows sensitivity to even the T315i mutation will be approved by the FDA.
CML is a very well understood cancer. My Dr thinks that there will be a cure (other than bone marrow transplant) in my lifetime.
deleted_user
deleted_user

Thanks for your kind words DJ. My father goes in on thursday to see his onc. This will be the first time that I am going to meet his doctor so I will have a ton of questions to ask him so I know exactly what is going on with my dad's situation. I will definitely keep you posted.
deleted_user
deleted_user

DJ,
I am in the exact same boat as you. My Tasigna lost its response for me as well. My Doc did a resistance test and should know the results in a few days hopefully. I am now being put on Sprycel. Fingers crossed.
I was with you, as I am worried. Trying to take this a day at a time and look down the road and be positive as I can be.
You hang in there DJ
rob