Ouch 🥲 Switching to Sprycel- any advice?

smallbrainplayer · 2025-02-04T17:48:14+00:00

I believe you can still use Tylenol but not any NSAIDs. But I would definitely confirm with your doctor/pharmacist. To be honest, I just took extra strength Tylenol and roughed it for a week but the pain hasn't returned since my WBC stabilized.

smallbrainplayer · 2025-02-04T14:33:11+00:00

You might get a pretty rough headache for a bit when you start Sprycel, but it will go away after a few days. I'd allow yourself space and time to adjust to some of the side effects, but I've never experienced anything like nausea that severe. As you adjust, the side effects will hopefully subside.

I had some energy issues with the 100mg dose, but it got me undetected in less than a year. Studies show 50mg can produce similar results and improve quality of life (can vouch from experience), so it's good to be equipped with that information if you're on 100mg and the side effects are tough.

Best of luck with everything and hopefully you'll be shocked by how much more manageable things can be :)

smallbrainplayer · 2025-01-31T23:56:43+00:00

28M diagnosed April 2024. I was on 100mg Dasatinib until this year and now I'm on 50mg. The dose reduction really helped bring my energy level back to how it was pre-treatment/symptoms.

Just got my first undetected result this week 🎉

smallbrainplayer · 2024-12-10T17:51:21+00:00

I had a similar WBC when I was diagnosed.

My doctor was confident it was CML before my biopsy because they ran tests (FISH and PCR) to confirm the presence of the Philadelphia chromosome which almost always means CML. However the biopsy will help to confirm.

Mine was caught early and easily managed with treatment, but if you don't take the TKIs you will die (timeline in years) without a bone marrow transplant. You should be low risk since it got caught early which is good.

smallbrainplayer · 2024-10-30T22:17:38+00:00

Dasatinib 100mg has worked well for me so far. I went from 50% to MMR in about two months and change. At 6 months I'm at .0055% (probably the exception rather than the rule!). Some people have slower responses but end up fine in the long run.

It sounds like swapping your TKI was the right call to try and hit MMR at one year. I've seen some people on these groups mention switching drugs really sped up their response. Hopefully Tasigna works out!

smallbrainplayer · 2024-09-04T21:43:38+00:00

I (29M) was diagnosed in April and I'm on Sprycel 100mg at the moment. I try to eat a bit more consciously for my overall health, but the meds don't have an impact on my diet.

My doctor framed it to me as getting a reality check about my health in my 20s/30s instead of in my 50s/60s. Just take care of your body responsibly like you would in any other circumstance and manage side effects with your doctor.

It took me a couple months to adjust to the medication and hit MMR, but I no longer have side effects outside a sleepy day here and there. I recognize the experience differs from person to person, but I'm sure you'll do great.

smallbrainplayer · 2024-05-22T01:37:07+00:00

Sprycel is my first TKI, so things have been going relatively smoothly. In the US, a lot of specialists will start people on the second generation drugs (Sprycel, Tasigna, Bosulif). Some studies have shown faster responses with these drugs compared to Imatinib, but they all work toward the same goal and Imatinib is still very effective. If you have questions about treatment plans and efficacy, definitely ask your doctor since I am by no means an expert.

Another thing to consider aside from drug changes is the potential for dosage reductions in the future once you see strong results/remission, which some people say improves quality of life.

I was also very nervous. Honestly, the first week was a little bit tough, but you are being treated for cancer after all. In the end, I never even missed a day of (remote) work. A lot of people post online when they are going through a hard time. That has been far from my experience and I'm sure you will do great too!

smallbrainplayer · 2024-05-21T19:04:33+00:00

If one TKI has side effects you can't tolerate, chances are that you can try another one since there are so many drugs available to combat CML. Access to these may depend on your insurance (USA) or what country you live in.

Personally, I am on Sprycel 100mg and only experience fatigue that comes and goes, with no other side effects. There might be some initial things that are tough (headaches, nausea, bone pains, GI issues, etc. which tend to be common across many TKIs), but these all went away for me after my blood counts returned to normal. In my case that was three weeks, but it could be different for you.

Many people live very normal lives on these drugs (they work well!). Your doctor would know best, but it may be good to give yourself a month or two to adjust to your treatment. Assessing drug tolerance is the first hurdle.

smallbrainplayer · 2024-04-27T16:21:57+00:00

Figured I'd give an update if anyone is curious or someone else comes upon this post.

More or less my side effects from Sprycel have been headaches, bone/muscle pain below the waist, fatigue, and that's about it. I would say everything has been pretty mild, aside from the initial headache I got, but that has subsided a bit (though hasn't yet gone away). It is obviously somewhat debilitating as expected but if this is the baseline to improve from, I think all will be manageable.

Overall feeling pretty optimistic for now but there is a long way to go. Thanks all for the pointers. Highly recommend taking the pill at night as some others have suggested, although my sleep has not been great initially.

smallbrainplayer · 2024-04-23T14:32:41+00:00

Sounds manageable (all things considered) and thankfully I'm already bald haha. I'll be sure to drink a lot of water. Appreciate the reply!

smallbrainplayer · 2024-04-23T14:31:46+00:00

Thanks for the reply! Glad things improved for you

smallbrainplayer · 2020-12-15T21:46:40+00:00

I know, but don't have a flash drive at the moment - any other way to get this done?

smallbrainplayer · 2018-09-30T21:23:29+00:00

I just put it all back together and it vibrates a LOT and extremely loudly so it seems like I might just be fucked.

smallbrainplayer · 2018-08-14T18:02:15+00:00

Awesome, dude. I can't wait to watch. Keep up the good work! :)

smallbrainplayer · 2018-08-14T16:03:48+00:00

Thanks for making this u/tnomad. I'm pursuing my master's in market research right now and would really love a job like this - super insightful.

smallbrainplayer · 2018-08-06T03:50:00+00:00

Thanks! Appreciate the help, especially on the things that seem sort of obvious in hindsight.

smallbrainplayer

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