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Imatinib to Dasatinib & the Side Effects.

I changed to Dasatinib on 17/4 after a complete break, and then a change to a dose of 300 mg Imatinib to try and cure Fatigue, Insomnia, and low moods. Several new side effects, but much better in general and easier to tolerate it seems. Initially, they looked to put me on Nilotinib due to the reported much better side effect profile, but Dr. Marin sought approval for Dasatinib on the basis that I am middle aged, and will have to take the drug for many more years. He had concerns as in the posts below, of the risk of Arterial Schlorosis with Nilotinib. Would have tried it though, as the lower dose Imatinib didn't help me.

Positives - better sleep & much more energy, generally feel much better on Dasatinib. Negatives - losing body hair on the arms and legs in particular, rashes on the top of the head, neck, arms and legs. Not much on the torso. Most significant - Palpitations at rest, never had this before. Sent for an ECG at the HH Monday just gone - Normal. Reduced my dose from 100 mg Dasatinib daily, down to 50 mg. Go back to three monthly check ups. If the PCR shows an increase in BCR-ABL, will increase the dose again.

Hope this is helpful to those experiencing similar issues, and considering changing TKI's.

Phil.

Hi Phil -

Are you receiving dasatinib on the NHS in England, or elsewhere?

David.

Hi David,

No, I go to the Hammersmith Hospital Clinic & Dr. Marin applied & obtained approval from the Cancer Trust Fund I think it was.

Phil.

Hi Phil,

I wrote about this a couple of days ago, having drawn the attention of my consultant to it after reading the press release from Novartis.

It seems that your consultant is more concerned than mine. It's as if the problem is being referred on to my GP when it would seem wiser to reduce my dose from 800mg.

That's good to hear. I am 34 and didn't fancy nilotinib for the rest of my life - my job also makes the predictability of eating quite difficult. But my private insurance covers dasatinib for 12 months, so we went down that option (on the advice of my NHS consultant) with the plan being to apply for Cancer Health Fund funding in 9 months time. Hearing that someone else has been successful in this is great!

Hi Jeff,

He seemed to be concerned because of my age(53)& that this would/should mean that I would have to take Nilotinib for many years & thus increase the risk. More experience with Dasatinib, thus go for that. The Nilotinib risk is only 5%, so I would have taken it to improve my side effects. Dasatinib is good for me so far, albeit with new side effects. The only one that bothers me, is the Palpitations & a bit of chest pain etc. Better on the 50 mg dose though.

Phil.

Hi Phil,

At my current does of 800mg I think the risk is over 6% My concern was that I'd reported side effects that could indicate Atherosclerois. On the Facebook group I also mention receding gums which have become a problem since taking nilotinib.

In trying to give myself a bit of a boost, I've gone through a lot of dental surgery in the last year to lidt sinuses and have implants. Aside from the discomfort, it has meant spending savings while not earning. So I'm loathe to be taking medication which undoes what I've done by stopping smoking 6 years ago.

Jeff

Hopefully your Consultant will reassure you & come up with a plan Jeff. I have been in stable remission for some time, so he wasn't concerned to suggest a lower Dasatinib dose to reduce the new side effects. It seems to be working.

If you get a drug through the CDF you will be guaranteed access to that drug for as long as you need it. The CDF in its present form will end at the end March 2014, but it is very probable that a new fund (maybe with a different name)will be introduced alongside the plans to introduce Value Based Pricing for novel drugs.

David, to ensure you don't miss out due to timing, I suggest that you ask your NHS consultant to apply to the CDF for dasatinib within the next few months rather than wait until your private insurance ends.

Sandy