14 replies to this topic

[Kittywatkins]

Hi all. I've been off of sprycel 100mg since December . I'm starting 70mg tonight. I'm a little scared for those side effects to come back! My Onc also scared me that I shouldn't have been off for so long. Waiting for my bloodwork to come back hopefully with good results!

[Marnie]

Hey, Kitty. . .try to de-stress (easier said than done).  You have no control over what has happened, and so life will go on.  Start your 70 mg.  It's a good dosing level.  Hopefully the side effects won't be bad.  And if your numbers have gone up from being off Sprycel, they will start to go down again.  Been there.  Actually, I'm there right now. 

 

Hang in there.

Marnie

[pammartin]

I had to take several short breaks while I was on Sprycel. Hoping your reintroduction is similar to mine. I did not have the headaches when starting after an extended break, eventually I did get the hot ear phenomenon and quest stomach but nothing was intense. Sending positive thought to you for a uneventual restart of your med. Take care, thinking of you.

[Billie Murawski]

Hi Kitty,

  I was off S for 6 weeks 2 different times and I had no problem when I started taking it again. I felt just like you do now. Every Onc is different I was getting a bit nervous being off it for so long, and I also saw another Onc in Pittsburgh they both agreed to keep me off it that long. Try not to worry.       Billie

[Kittywatkins]

Here is the update from Mondays visit. Had my bloodwork done WBC was all good then started that night 70 mg of sprycel. I got the call from my Onc today that pcr abl came back high and it doubled in numbers. I was at 0.1 and now it's at over 1. Something. My brain stopped working when they gave me the news. She wants me to go back on 100mg which makes me so so sick starting tonight (yippy) NOT! I'm wondering did I screw this up for myself being on such a long break from sprycel? I see her again in 1 month to repeat the bloodwork. My nerves are shot at this moment. Has anyone gone thru this?

[JPD]

1% something, blah blah blah.  Thats within the margin of error where it could actually be like .50 Doesnt that sound better?  Does it suck that your numbers creeped back up - yeah, but you were off the drug.  They will go back down.  You will be alright, trust me... Im a ninja  

 

Why the jump from 70 to 100?  How long were you on the 70s?

[Kittywatkins]

1% something, blah blah blah.  Thats within the margin of error where it could actually be like .50 Doesnt that sound better?  Does it suck that your numbers creeped back up - yeah, but you were off the drug.  They will go back down.  You will be alright, trust me... Im a ninja  
 
Why the jump from 70 to 100?  How long were you on the 70s?

I was having a hard time with the 100mg of sprycel so I stopped taking it sometime in November and demanded to go on 70mg, but insurance game a hard time and finally got approved. But she wanted me to have my bloodwork before I started the 70. Because of the change in numbers she wants me back on 100. I just can't tolerate the sprycel 100.. Too many side effects at once

[Kittywatkins]

Thinking of just giving the sprycel 70mg a try for a month. Get the bloodwork done then see what the numbers are. I'm just not that strong to put up with the 100mg side effects. I'm calling my Onc Monday to let her know. She won't be pleased.

[Trey]

If you have not tried Tasigna, it would be worth trying to see if the side effects are more bearable.  Otherwise you had a significant loss of response (lost CCyR) so you MUST stay on the drug.  70mg may be enough, but if it were me, I would gut it out with 100mg for a month or so then look at lowering it to 70mg.  This is a disease which demands respect. 

[Dona_B]

Kitty,

Sorry to hear your numbers went up. If you decide to switch meds hope your insurance will cooperate. 

 

Then if you haven't already, cut out as much sugar as you can and avoid processed foods. Drink lots of water. Exercise. (Know it's hard.I'm not there yet.) Facebook has a lot of great pages: Whole 30, Foodbabe, Eat Local Grown, etc...  I know I need to and I'm getting better at it. Found a wonderful Paleo Meatball soup that uses sweet potatoes. (Usually I don't like sweet potatoes but like this way.

Donna

[Kittywatkins]

Hi guys thanks fir your input. An update on my journey to getting back on track! So I've been on the sprycel 100mg again (ugh!) for almost two weeks. I have two new side effects extreme sensitivity in my breast and nipples. I can't even touch them. My nipples stay erect 24 hours and are so dry and cracked. And my knees are in severe pain going up my thighs. Feels like I did 509 squats and over did it. I know and hope it goes away over time. But just curious who's been thru this the second time after a break from sprycel. And instead of diarrhea I'm now very constipated. Oh the joys of sprycel. But I'm hanging in there cause I got scared that my blood work double in numbers for the worst. I changed my diet when I went on a break. I eat lots of greens and herbs. And I juice a lot. And I go to the gym almost everyday. But since these side effects, I've been living off of aleve. Going to the gym today to try to get back on track! Wish me luck guys!

[chriskuo]

Which other TKIs have you taken and for how long?

[Kittywatkins]

Which other TKIs have you taken and for how long?

I've only been on sprycel 100mg. Went down to 70mg. But only took that for 1 week. Blood came back high so she switched me back to 100mg. Going back march 9 to have more blood work done.

[chriskuo]

Why have other TKIs not been considered?

[Kittywatkins]

Why have other TKIs not been considered?

My Onc wants to see the bloodwork results next month on sprycel. If no changes she'll switch me to another. She is really reluctant to change. Let's see what happens in march.