112 replies to this topic

[dlb65]

Bmorris:
I've been on Tasigna for close to two years. It was rough at first as my WBC's were dropping. Felt pretty much like I always had a low grade flu. Plus I got several UTI's but gradually I improved. I have several AES but they seem to come and go at random. It's kinda like playing wack-a-mole! Fatigue is the biggest issue and when it hits, I give in to it and call it a couch day. The other side effects are Headache (which has improved), crazy bumpy/itchy scalp, Quezy, GI issues, muscle fasiculations and cramps, intolerance of ETOH,increased morning mucous production, and finally the previously described "brain fog." But like I said, they randomly come and go but generally they all improve over time as well as your ability to adapt. I might add that after 22 months I finally hit MMR with 0.09% so I'm not complaining ( much...)The eating thing takes some getting used to, but you will figure it out. Keep that iPhone timer with you at all times and don't, repeat DONT loose your insurance$$$. Hang in there you'll be OK.

[AllTheseYears]

BMorris:  I'm a 14-year CML survivor and have taken Gleevec from the start.  The most important thing that I can say to you is this:  Survivorship is not only a physical journey but a psychological one.  There's going to be setbacks and trials. Early on, I told myself that I could and would weather whatever came my way on this journey, and that mindset has helped me cope, move forward and always choose life. You can do that, too. 

[kavis]

I'm 3 months into Tasigna.  PCR from 75% to 1.5%.

 

Side effects are hard to pin down.  Early I had some bad skin breakouts but that has mostly cleared, so I think that was due to the weakened immune system more than anything.  Also think I've lost quite a bit of hair, but I was losing that already so now I'm not really sure that's changed much either.

 

After 3 months, I'd say definite skin sensitivity, definite cramping.  I feel it in my chest and abdomen, and it comes and goes almost completely at random.  But all in all, I'd say there are no symptoms that effect my normal routine (aside from the food/drink thing).  Good luck! 

[JPD]

1.5 years in on Tasigna.  First month had skin "tightness" and some bone aches.  Now, its thinning hair (mostly on legs) and the occasional brain fog - but I abused my brain pretty good in my 20s... so who knows if its actual "chemo fog".  Other than that, it aint no big thing.  Occasional tirednes and some slight stomach issues. 

[JPD]

And the black box warning should be taken seriously, but dont let it ruin things - just have your doc give you an EKG periodically (especially at the start) and try and not to worry about it.  There are hundred or so drugs with black box warnings.  Yay !!!

[Bmorris]

Ok, this is my fourth day on Tasigna. Hasn't been extremely bad yet. Today was the worse. Brain Fog, a little nausea, especially after eating. Freezing one minute, burning up the next. Also, my ears and neck are itching. Is this about the norm? Is it just starting. How long does it take to really know what your side effects are going to be.
I'm sorry, I know it's different for everyone, but I hate surprises. The unknown is the worse.

[JPD]

Bmorris - try and relax, most likely you arent through dealing with side fx, but its also important to remember that you might be having itchy skin because you have itchy skin - dont let your head make every little thing about the Tasigna.  Although, it might be :-)

 

I had some side fx that went away after a week (the "tight" skin) and some that lasted a few weeks to a month (bone pain)... and some that havent ended (hair loss).  Just concentrate on the meds working (which they are) and try to take it easy.

[Billie Murawski]

Bmorris:
I've been on Tasigna for close to two years. It was rough at first as my WBC's were dropping. Felt pretty much like I always had a low grade flu. Plus I got several UTI's but gradually I improved. I have several AES but they seem to come and go at random. It's kinda like playing wack-a-mole! Fatigue is the biggest issue and when it hits, I give in to it and call it a couch day. The other side effects are Headache (which has improved), crazy bumpy/itchy scalp, Quezy, GI issues, muscle fasiculations and cramps, intolerance of ETOH,increased morning mucous production, and finally the previously described "brain fog." But like I said, they randomly come and go but generally they all improve over time as well as your ability to adapt. I might add that after 22 months I finally hit MMR with 0.09% so I'm not complaining ( much...)The eating thing takes some getting used to, but you will figure it out. Keep that iPhone timer with you at all times and don't, repeat DONT loose your insurance$$$. Hang in there you'll be OK.

what is AES and ETOH?                    Thanks Billie

[gerry]

Brain fog could be brain fog or it could be your mind is going a hundred miles as hour following the diagnosis and a new drug. Same with the nausea.

[Bmorris]

Thanks everyone. I'm actually guessing it is brain fog I'm experiencing. My head just feels 'Loopy' like when you've had a little too much to drink. It makes me not want to turn my head real quick. That comes and goes. Nothing has been too bad, mostly the sweats and freezing.

[Billie Murawski]

I'm so glad you finally got your meds I have never been on Tasigna, but I was on Gleevac and now Sprycel, sometimes the brain fog drives me nuts, but I am a nervous type person anyway and I have so much brain clutter that I really can't blame it all on my Sprycel. But I refuse to blame it on age I'll think of something to blame it on.  Take care Billie

[Gail's]

By orris, I'm on gleevec but relate to the roller coaster of side effects. I had a host of side effects and new ones pop up but with less frequency now and some seem to be gone for good. Hang in there. It's fine to whine here. Or that's what everyone tells me when I frequently do so! Billie, ETOH= alcohol as in a whole bottle of wine not the rubbing kind. Don't know what AES means.

[Antilogical]

Bmorris - if that's the effect you get on Tasigna, then I'm switching from Gleevec + a glass of vino.  Sounds enticing.  As far as the fog goes, after 4 days of taking the TKI, it's more likely that it's information overload + stress that's causing it, rather than the pills.

 

I will not tell you to relax.  You will do that on your own when you start getting positive feedback about your response to Tasigna from your doctor.  And next year at this time, you'll be giving the same advice to someone on this forum who is newly diagnosed with CML.

 

Cheers!

[Susan61]

Welcome to the group.  You are newly diagnosed, and you will have tons of questions.  You came to the right place.  I have not been on in awhile, and need to catch up with all that is going on.  I can only tell you that your fortunate that there are different TKI drugs of choice now.  When I was diagnosed in 1998, all they could offer me was the Gleevec in 2000.  I am still on the Gleevec to this day, and have been undetectable now for 14 years.

Take one day at a time, and see how you do.  Everybody gets different side effects that some others never experience.

Just keep in mind that CML is so treatable now.  These TKI drugs have been a real miracle, and saved so many lives.  Somebody is always here to help you out.

Susan

[Bmorris]

Antilogical,
LMAO! So I think I'll go pour a glass of wine.
Cheers

[dlb65]

I'm sorry. ETOH is alcohol and AES is Adverse Events which is the heme/onc euphemism for side effects.
By using the term AES they are able to avoid the direct mention of "side effects". It's always used in scientific literature.

[Billie Murawski]

I guess they figure if they use weird medical terminology they can charge more. I love your picture it's too  cute, I bet you get a lot of attention. I have an aunt who is 4'11  and her husband is 6'2"

Welcome to our group, I'm sorry you had to join but you'll get so much knowledge and support from all these wonderful people Feel free to vent we all do that when we're frustrated but here we really understand.  Billie

[rnowinski]

Good luck with the Tasigna. I was on Gleevec for a year before I was switched to Tasigna. I have been on it now for a month. Now my liver is having problems. I have to have a liver biopsy next week. Watch your Liver enzymes (AST, ALT and the BASO%). Now, Gleevec doesn't sound so bad!!!

[Billie Murawski]

Good luck with the Tasigna. I was on Gleevec for a year before I was switched to Tasigna. I have been on it now for a month. Now my liver is having problems. I have to have a liver biopsy next week. Watch your Liver enzymes (AST, ALT and the BASO%). Now, Gleevec doesn't sound so bad!!!

I was on Gleevac 3 years I was miserable with gi problems,I've been on Sprycel 4 years now and hopefully I can stay on it forever.

                                                                                                                                     Billie

[Billie Murawski]

By orris, I'm on gleevec but relate to the roller coaster of side effects. I had a host of side effects and new ones pop up but with less frequency now and some seem to be gone for good. Hang in there. It's fine to whine here. Or that's what everyone tells me when I frequently do so! Billie, ETOH= alcohol as in a whole bottle of wine not the rubbing kind. Don't know what AES means.

Gail, I sure hope you're feeling better, it sounds like you are.   Take it easy Billie