11 replies to this topic

[mscl]

I was diagnosed with CML on Feb 10th and trying to learn all I can.  I've been on 100 mg Sprycel for just a week and one half. Little side effects so far, just a little fatigue and general blah feeling.   Can I expect this to be as bad as the side effects get or should I be prepared for more?  I'm new to this site and learning a lot from the posts.

[tiouki]

Hello! Welcome here!
Sorry that you had to join us. But the first weeks/months are the worst part then it will get much better

Sprycel is a great drug. I recommend taking at dinner to limit side effects : I had nausea when I was taking it at breadfast during the first week. This was the only side effect I had and now I am side effects free so I hope it will be the case for you too.

Also, during the first few months you may get low blood counts, but this effect is usually transient. Some people get low white cell counts or platelets, I had low red counts which caused anemia which caused fatigue => if you get this too don't hesitate to ask for erythropoietin injections for example (had 2 injections it fixed this problem).

It's been 6 months for me and I am doing great my life is completely normal now. I am sure you will do great also.

The only 2 things that remain are :

-the trimestral half-a-day-at-the-hospital appointment

-the only bad side effect you can get with sprycel is pleural effusions = water around the lungs. You may want to call your doctor if you get breathing difficulties/a cough/pain in the chest.

Good luck!

Pierre

[pammartin]

Hi,

I might complain about my own side effects in posts, but I try not to push them too hard on someone just beginning Sprycel.  Most members will tell you side effects are unique to each person, we all have similar ones, but the severity and longevity of each one depends on the individual.  When I joined last October, I poured over every post I could find about Sprycel and side effects, but mine were/are still different than others taking the same drug and the same dose.  Try to get as much rest as you can, the CML isn't all that kind to your body, wears you out, and the Sprycel is not the easiest drug to take, although the side effects seem to be much less than the other TKI's.  I am glad you have not experienced many side effects, one less item to make this new journey of yours a tad easier.  One great thing, you have found an awesome place, lots of good people with personal experiences, advice, and an occasional laugh or two.

Welcome!

Pam

[Susan61]

Hi:  You came to the right place, and thats the best way to start as you learn about the TKI your taking and how it will effect you.  These drugs effect everyone differently, but someone may experience the same things you do.  I am not on Sprycel.  I am on Gleevec, but they all have some kind of side effect.  Just post any questions you have, and share how your feeling.  We talk and advise, but we are also friends on here.  So feel free to say anything at anytime.  Like Pam said we have some laughs on here also.  Welcome to our Group

Susan

[Happycat]

Hi, and sorry you had to join us.  I'm not on Sprycel, so can't comment on the side effects.  I will say that I felt great on Gleevec the first few weeks, until I went on vacation, of course!  THEN the pain set in.  Took a few months to get over it.  There are things your onc can do to help.  Mine put me on low dose prednisone for a month or so for the bone pain.  Helped a lot - well, that and the vicodin. 

Give it time.  Probably too early yet to know the full range of side effects you will feel.

Traci

[scuba]

Welcome to the Club !

As you are new to Sprycel - keep a watchful eye on your blood counts. Until you are stable you want to have your CBC's  (blood counts) taken once a week and track progress. Sprycel should cause your counts to drop and get into normal range pretty quick if it hasn't done so already. If your counts go below normal (fairly typical for Sprycel) you will want to be ready to take action (dose interruption, lower dose). You'll know in six months if Sprycel is working to eradicate the Philadelphia chromosome from your blood.

As you are new - your first read should be Trey's Blog:  http://treyscml.blogspot.com/

A lot of your questions will be answered right there before you knew to ask them.

You are on the road to recovery.

All the best,

Michael

[mscl]

Thanks to everyone who has responded so far and especially thank you for the welcomes and support. This has been quite a shock to me and my family, but I'm ready to fight it for myself, my husband  and 11 year old son. I have found this forum to be so educational and supportive. 

Marilyn

[lthouse612]

Hello Marilyn and welcome ... Sorry you're onboard but you really have found a wonderful place with so much support and information.  Not only for CML but even for other things that life seems to unexpectedly through our way.  It has really been a great help for me personally to be able to come in and vent to others that really know what you're talking about and what we're experiencing when it comes to living with this illness.  Anyway, I hope your side affects will remain ever so slight as they have been and welcome again to the group. 

Mark

[Marnie]

Hi, Marilyn. . .Welcome to the club that nobody wants to join!  There are great people here for support and to answer questions. 

I'm on Sprycel and the side effects have been very minimal for me. . .much better than when I was on Gleevec.  I'm guessing that since you've started out with minimal side effects, it will remain that way for you.  Best of luck as you deal with the shock of your diagnosis, and as you start to learn the ropes.  Hopefully you will find that once you adjust, your life will (mostly) get back to normal. 

Marnie

[lrock]

Hi and welcome. I was just dx Jan 20th so I'm kinda new myself. You'll find this a great site where you can ask anything. Hope things go well for you.

[NotJack?]

Hi Marilyn,

Welcome, and I second Michael's suggestion to go to Trey's blog for good, accurate info.  Jack