Hello everyone,
My name is Gene. I was diagnosed with CML last Tuesday and have started on Sprycel 100 mg. I took my second dose yesterday. I want to know if any of you have taken Tylenol for the headache and if it works. Obviously I’m new to this and some of you have gone much further down the road and have experience that I need to know about. Another aspect of this drug is here in the US it is very expensive. Does anyone know of a source which is reliable and affordable?
Thank you and,
Thank you An
I’ve only been taking the medication for four days, I have experienced debilitating headaches and pain in the flat bones of my body . I spoke to my doctor today and he told me to take a two day break and then we would consider re-initiating the med.
I hope and pray your husband’s treatment is successful and he can reach a remission.
Hi,
I suggest you have a look at the website of CML Society of Canada.One of their campaigns is to make CML drugs more affordable to patients in USA and Canada
I believe that branded Sprycel came off patent earlier this year which allows for generic dasatinib products to be brought on to the pharma market and normally these are cheaper than the branded version.There is a process though and it takes some time and that is all new generic drug products have to be approved by the individual regulatory authorities for each country so that they are safe and also equivalent to the original branded version.As well patent expiry dates might vary from country to country.Canada has applications from two providers of generic dasatinib which are pending but it seems at this moment in time there are no generic dasatinib drugs on offer in USA-they may be pending but would have to be approved by FDA.
Apparently some cancer drugs in Canada are half the price of USA but technically it is not legal to import them across borders into US-however it seems currently authorities do not pursue those who import .There are online pharmacies in Canada but reliability may be an issue.
India according to previous posts here has on offer four new generic dasatinib products at a monthly cost of $45 -I dont know how reliable they are nor how you might be able to source them.
It seems that drug companies have in the years prior to patent expiry raised their prices such that the list price of branded Sprycel in US is over $14000 per month.Being in UK I dont fully understand how health insurance works in US but I guess you have to co pay say 10 or twenty percent of the drug price?
Oh it seems that Indomethacin or similar is good for headaches but is only on prescription I guess.
Best wishes
John
Hello John thank you for the information. I am currently investigating via a Canadian pharmacy the possibility of getting Sprycel from a Canadian or other non-US source. I’ll have to check about indomethacin. I spoke to my doctor the other day and he put me on a two day vacation but I have to resume the Sprycel tomorrow, and if that works maybe I can tolerate continuously taking the drug and deal with headaches effectively. I really appreciate your feedback and let me know if you hear anything else. Be blessed and thanks, Gene
Hi Gene,
I'm just a few weeks further ahead in my treatment than you...
I had pretty bad headaches for about 8 days... I compared it to having the worst hangover of your life, but one that lasts 8 days... I mostly stayed in bed under the duvet listening to quiet music, and although I took paracetamol/Tylenol, I never felt like it helped...
But the good news is, after those 8 days, it went away (for me at least) and from what others say on this forum, that's pretty typical... my blood counts are now dramatically improved, so my advice would be to give yourself permission to have a really crappy week - stay in bed, cocoon, eat foods you really like, and try to get through it probably won't last and you'll feel a lot better soon....
Hi Gene,
I’ve been on sprycel for a year now. My dose is lower due to immunosuppression now, but I started in 100 mg, and I can tell you that I will never forget the way I felt those first few weeks. It was rough and worrisome but everything got so much better. I drink 2-3L of water a day and that was the magic cure for my headaches. I also take my meds at night before bed to try and sleep through the side effects.
as for cost, I highly recommend contacting BMS, the manufacturer. I believe they have a program that really helps significantly with cost.
good luck! This gets better with a little time.
Hi Gene,
I’ve been on sprycel for a year now. My dose is lower due to immunosuppression now, but I started in 100 mg, and I can tell you that I will never forget the way I felt those first few weeks. It was rough and worrisome but everything got so much better. I drink 2-3L of water a day and that was the magic cure for my headaches. I also take my meds at night before bed to try and sleep through the side effects.
as for cost, I highly recommend contacting BMS, the manufacturer. I believe they have a program that really helps significantly with cost.
good luck! This gets better with a little time.
Hello tater,
Hello tater,
I had only been taking the 100 mg dose for four days. And I needed relief from the headaches, so my doctor told me to take two days off. Tonight I’m going to resume med but today I’m going to start chugging the water and try to get ahead of it .
thanks so much for giving me encouragement and hope for the future. I wish you and your loved ones a Happy Thanksgiving, please stay safe particularly over Thanksgiving .
best regards
gene
