4 replies to this topic

[Taylor]

Well, I thought I'd post a follow-up to my one week of Sprycel--today being my 7th dose since starting. Mainly to get it off my chest, but if you want to comment, feel free

I think I like the idea of Sprycel better than Tasigna. Smaller dose, less time spent in the body, once a day, can take with food no QT stuff really to worry about...

I mentioned a few days ago that after my first dose I woke up with tremors, cold, and nausea. I'm really thankful to say that so far, I feel really good. A bit tired/bleh (especially after I take my dose), a smidge of insomnia one night (time change?), a lessened appetite, and some headaches. I know I'm still getting adjusted but I do remember Tasigna giving me some fog, etc in the first week. So maybe this is a good sign for me.

I do have some questions if anyone wants to take a shot:

1) My onc didn't need to see me back until 3 months. Do you not have to check your liver enzymes with Sprycel? I remember with Tasigna we checked within the first week and then I think two more times that month, or maybe just once more. I never had any fluctuations on Tasigna, nor pain or soreness. I did have some pain for about 15 minutes on Sunday that I associate with gallbladder--but I've had mine removed! No tenderness otherwise. Had gray/pale stool come through today (okay, maybe I neglected a side effect!), but that might be a blip after finishing antibiotics and painkillers for wisdom teeth. But doubt that would be related to Sprycel, especially with no other symptoms.

2) If Sprycel inhibits the main things that Tasigna does, + SRC, then why should I not be worried that it will effect my heart in the same or similar ways that Tasigna (probably) did?

Thanks everyone for the support.

[Marnie]

Hi, Taylor. . .glad that Sprycel is working well for you so far.  You should be having a CMP (complete metabolic panel) done every 3 months to monitor liver function.  I also had EKGs a few times after starting sprycel.  I think it was a waste of time and money, but that's just my opinion.

The biggest thing to watch for, I think, is pleural effusion.  For a lot of us, this seemed to come at about  2.5 years after starting Sprycel.   Up until then, I had very few side effects, except for a nasty rash on my scalp, hairline, and ears.  Not bad enough to be a problem, but bad enough to be extremely annoying.

My doc wasn't vigilant about my breathing symptoms, and I wasn't vocal enough about them, so my p.e. got to be pretty extreme.  IF your breathing seems at all odd, get it checked out. . .and like I said, for a lot of us, the p.e didn't hit for quite some time.

Best,

Marnie

[winespritzer]

Dear Taylor,

I've been on Sprycel at 100 mg for 6 weeks now and think I have gotten over the initial side effects. The 1 month blood work showed a need to watch  liver function.

Not sure if that happened sooner than was expected but other than that and some fatigue, am really so much better.

Winespritzer

[hannibellemo]

Hi, Taylor,

Glad to hear that Sprycel seems to be working out for you! My own personal opinion is that you should be followed more closely for a few months when you start a new drug. My local onc is very conservative and since I've had issues with both Gleevec (liver) and Sprycel (PE) he's just recently moved me out to the 2 month follow up (at 5 years!), although we only do PCR every 6 months now. It probably has a lot to do with how "needy" I was at the very beginning. Everytime he did move my appointsments further out at the beginning I was convinced my counts were  escalating. I did manage to ask only once to come in for an early blod draw.

Looking back now to how anxious I was then to how (almost) blase I am now, makes me laugh...

Pat

[winespritzer]

Dear Taylor and Pat,

I agree with the closer monitoring. I was diagnosed on 1/14 and have seen the doctor about every 2 weeks since that eventful day. I know that I was totally nuts when I first met the doctor and have 'calmed' down a lot. Now that my blood counts are sort of normal, I am not returning for a month.

And for the sake of my liver, I am giving up fried clams! Well, sort of. . .

Good luck.

Winespritzer