10 replies to this topic

[rcase13]

Hello everyone. I was diagnosed with CML about 3 weeks ago. I was having pain in my abdomen. The doctor ordered blood tests. I got a call at home with the results and was told to get to an ER right away. My WBC was 268. The ER was able to diagnose me with Leukemia. Pretty scary to say the least.

 

So here I sit at home on short term disability taking Tasigna. I have only had a couple labs but the WBC has drop to near normal so hopefully it is going to work for me.

 

I have a few side affects even though I have only been on the drug for two weeks. I have headaches (mild), fatigue and bone pain. The bone pain or joint pain is mostly in my hips. All my symptoms are minor except for the bone pain. It is really bad and makes it very difficult to get around. Does this pain eventually subside? Is there anything safe to take for it?

[mlk210]

Hi Rcase! I'm on Sprycel so I can't be much help on the side effects for Tasigna. I had horrible headaches for about 8 days on Sprycel and I was able to take either Aleve or Advil during that time. Although, they still didn't work that great on the headaches! But the nail driving headaches subsided after that and I've been fortunate that they haven't come back. (Granted, I'm new too. Only in my third month). Then I was good for awhile but I too have had some pain and discomfort in my hips when I sit for too long. At night, sometimes I struggle to sleep due to the discomfort. But I have other issues because I had a thyroidectomy three weeks ago and they are still trying to get me on the right hormone replacement dose. So, I've kind of chalked it up to that or a mix of both!

 

I'm sure someone on Tasigna will chime in here soon!

[Damerault]

I am also on Tasigna. I am on a reduced dose because my PLTs and Red Cells keep dropping. For side effects I have had some pretty bad headaches (which I have posted about before) and fatigue and light headedness but not bone pain. Mt headaches were so bad I was referred to a neurologist and recently had an MRI. I am hopeful that as the CML cells are reduced in my blood and my good blood cells increase that the side effects will be reduced. I wish you the same. Be well.

[tiredblood]

I felt horrible the first few weeks on Tasigna.  My hem/onc attributed it to a virus.  Regardless, if it was a virus, it , was like one I had never had before and one I never want to experience again.  I remember thinking that if Tasigna was going to be like that, I would just as soon die.  There wasn't an inch on my body that didn't ache and I felt extremely fatigued.  Thankfully, this resolved after a few weeks.

 

Hang in there.  I've had great results from Tasigna as far as CML goes.

[Flycatcher]

I was diagnosed with CML in 2012 and have been taking Tasigna since then.  I find that monthly massage combined with 20 minutes of yoga stretching (Rodney Yee yoga for everyday of the week) has kept my side effects quite manageable.  

[story]

Hang in there, your body will adjust to the Tasigna, I had lots of cramps, headache and some bone pain. They all went away in the first month. The itchy skin and scalp...you just get used to. The Tas does work really really well. Sure beats a Bone marrow transplant.

[JPD]

Agree with all of what was said.  I had moderate bone/joint pain for about a month or so when I first started.  Wasnt terrible, but was not very fun either.  Tiredness also went away for the most part.  Id take whatever OTC painkiller you prefer, maybe something thats also anti-inflamatory.

 

ps - taking Tasigna 300

[rcase13]

Well now five weeks into the Tasigna and the bone pain has mostly gone away. My blood numbers kept dropping really low. But today my labs were good they actually went up some. The are still low but not scary low and I don't need a transfusion. So I gladly take little victories. I am happy and alive.

[Bearboy]

I was diagnosed with CML last Friday and began taking Tasigna Saturday.  I was thrilled to learn of the existence of this drug--seems like a fantasy when a doctor tells you you have leukemia but can expect to live a long life--all you have to do is take a pill.

 

Over the weekend, I had no side effects.  Then I developed this fairly constant nauseated feeling and cramps in my upper stomach.  I am also pretty tired.  These posts seem to indicate that most of you have had side effects go away after a month or so.  True?

 

Also, I have a demanding job.  Are you all able to continue as before with your jobs?

 

Thanks

 

Greg

[rcase13]

Yes for me now five weeks since starting most of the side effects have all but gone away. Hang in there. Week five and my numbers appear to have stabilized. I feel great and am living a normal life. Well except for the burning hair...

As far as work goes I am doing fine. I do think the Tasigna makes me a little fuzzy headed with my ability to think. Not sure if others have this. Might just be me.

[Bearboy]

Thanks very much for the info.

Greg