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Update on moving "backwards" from dasatinib to imatinib

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Hi everyone

I just thought I'd post an update regarding my experience after switching from dasatinib (my first-line treatment) to imatinib in May.  I had to switch because of severe and rare side effects, and it seemed counter-intuitive to switch to a first generation drug.  However, in my case, the following occurred:

1. Within 5 days (!) of discontinuing dasatinib and starting the imatinib, my side effects (enormously swollen lymph nodes in my neck, one the size of a golf ball) completely disappeared.

2. The lowest I ever reached on dasatinib was a BCR-Abl level of 0.04%.  In three months this had halved to 0.022%.

3. I have more "quality of life" side effects now than before, and the main one that has stayed with me are the muscle cramps.  But it's not bad (hope I don't jinx it by typing this!)

Anyway, the purpose of this thread is to point out that it is possible to change "backwards" from a second generation drug that was prescribed as first line treatment to a first generation drug.  So far, this has worked for me.

Best wishes

Martin

Dear Martin,

I was very interested in reading your post. Currently I am on 50mg Dasatinib. However over the last 12 months I have only been on Dasatinib 10 weeks out of 16 because of neutropenia and have only reached 8%. I will discuss the possibility of moving to another TKI with my consultant in two weeks time.

Sound like a first generation TKI is a possibility. Thanks for posting.

Rosie.

Martin, one thing which has helped a number of us with cramp is magnesium supplementation. The easiest way to do this is rubbing magnesium "oil", which is actually a saturated solution of a magnesium salt in water, on your skin twice a day. The body take up magnesium better through the skin than it does gastrically. Its avaliable on Amazon (and I'm sure other well-known internet sites). Didn't stop my cramp altogether, but certainly helped.

Increase your magnesium intake and the cramps will likely disappear. When I was first diagnosed, I was started on Imatinib and cramps developed shortly thereafter. My oncologist suggested 400 mg of magnesium (as taurate or citrate forms NOT Oxide) per day. I took most of it at night prior to sleep. Worked within 24 hours - and helps relax for better sleep too.

I take Magnesium every day since.

 

Thank you scuba and Alastair for that helpful suggestion! I have just gone out to buy some magnesium supplements... I would be really grateful if this helps.

Rosie, I hope imatinib works for you. I was really not keen on the fasting regime of Nilotinib and am so pleased that this is working for me. May you drop very rapidly after changing!

Best wishes to you all.

Rosie, have you considered a lower dose of Sprycel to see if the neutropenia is alleviated?

Kirk

I echo Kirk's suggestion. New research strongly suggests that Sprycel works 'better' at lower dose when neutropenia is observed. In addition to alleviating the low cell counts, lower dose Sprycel works more effectively than higher dose by allowing the immune system to function better. This effect is not as well observed with patients who suffer no neutropenia.

Consultant started me on 50mg Sprycel which resulted in neutropenia and then dropped it to 20mg. My transcripts rose from 8% to 9%. Waited until neurophil count rose again. Now we're trying 50mg with weekly Neupogen injections (5 so far). I gather from previous threads that others are not convinced that GCSF injections are useful. I'm hoping that my consultant will have the result from my latest PCR test when we meet in a week's time. This on and off again regime has been going on for the last 12 months. Otherwise I feel well and have more energy and others tell me I look much better.

Thank-you Scuba for your reply echoing Kirk's advice. This is something I will bring up with my consultant in a week's time. Meanwhile I am drinking carbonated water to help with the digestive problems caused by the Neupogen injections. I can't be sure if my system is just becoming used to the injections or the carbonated water helps. It's good to drink lots of water anyway.

Thank-you Scuba for your reply echoing Kirk's advice. This is something I will bring up with my consultant in a week's time. Meanwhile I am drinking carbonated water to help with the digestive problems caused by the Neupogen injections. I can't be sure if my system is just becoming used to the injections or the carbonated water helps. It's good to drink lots of water anyway.