14 replies to this topic

[Floa7]

I am back  on Tasigna after a 11 week break. It slowly went up. read my signature

[carrie]

I have been on Gleevec for 10 years and now because my numbers are high, I am being switched to Tasigna. I am worried about changing after all these years. I don't know anything about this drug.

[Gail's]

Carrie, I am on sprycel, so can't offer advice on tasigna. I'm wondering a few things: why your onc didn't switch you sooner, why not sprycel instead of tasigna, and have you had a mutation analysis?

[cmljax]

Good questions from Gail's. I have been on Tasigna for over 9 months - see my history below.  It has worked tremendously well against my CML as I am nearly undetected.  But I have had a rash of side effects, some bad and some not so bad.  If you do switch to Tasigna, you must have an EKG before starting to make sure your QTc interval is normal. Tasigna is harder on the heart that Sprycel and Srycel is more apt to cause pleural effusions.

 

Bad side effects - multiple squamous cell skin cancers (9) and precancers (@40);  5 episodes of swollen salivary glands followed by multiple mouth ulcers; heart arrhythmia (so far benign but uncomfortable and tiring).

 

Lesser side effects - irregularity; headache, cough, shooting pains in neck and back, mild insomnia, hair stopped growing on full dose (600 mg), mild fatigue.

 

If my most recent dose reduction does not moderate these side effects more, I may switch to Sprycel, but before making that decision, I want to see if I can maintain response on half dose (300 mg).

 

Not trying to scare you - all TKI's have potential bad side effects as I am sure you already know and each individual reacts differently.  Tasigna seems to be better tolerated in younger people from what I have read on this forum, but I do not have real data to back that up.

 

Finally, the mutational analysis is important before starting a new medicine given your PCR history.  If you by some chance happen to have T315i, neither Tasigna nor Sprycel will work. Here's hoping you don't. You more likely have kinase domain mutations which Tasigna and Sprycel handle much better than Gleevec from what I understand.

 

Good luck whatever you decide and be sure to read the detailed manufacturer circulars on both Tasigna and Sprycel before you decide.

[carrie]

Gails's and Cmlijax,

Thanks for responding. I think the doc thought I was close enough to zero to not make the big move with another medicine.

Yes, I had the T315i bloodwork mutation test done.

I had mutation tests done 4 other times and they never found anything. Not sure if the lower numbers had anything to do with finding a cell with mutations.

I call the doc July 13th.

July 14th I go get the ECG and other base line blood tests done.

On July 14th I will be 60 so the comment it works better with younger people doesn't apply to me.

The scary thing for me is the nasty new side effects. I am a school teacher and financially (and insurance) can't quit my job.

Are the skin cancers from being out in the sun? The multiple squamous ones?

I am travelling for two weeks and then back to school. I am changing meds right as school starts,,,,YIKES.

Over the 10 years I have had CML I have been strong but now I am panicking and worried.

They are not putting me on Sprycel because I am prone to respiratory infections/pneumonia so the plural effusions would not be good for me.

I don't like feeling scared.

Carrie

[cmljax]

Carrie:

I certainly was not trying to scare you.  I was 63 at Dx now 64.  Prior to CML, I had 2 precancerous lesions removed from my left temple area. So all the squamous cancers and other precancerous lesions were after Dx and after starting Tasigna. My oncologist initially said Tasigna was not the cause, but eventually he had to admit that it was at least a contributing factor along with a suboptimal immune system.  The lesions were all on sun exposed areas of arms and legs, so obviously theses areas were prone already.  But 9 confirmed cancers in 4 months and 40 other precancerous lesions over the same time frame and my onc finally agreed to my first dose reduction in early March.  Since then I have had no new skin cancers and "only" 5 precancerous lesions.  There is only 1 other documented case of this type of skin cancer and Tasigna, so it is very rare.  While you may have some skin rashes, some folliculitis and even some petechiae, these are usually not serious (I have all of these but very manageable).

 

I understand the fear.  Despite all the issues I have had with Tasigna, it has obliterated the CML in a very short period of time. So my onc and I are trying a further dose reduction (to 300 mg) before switching.  I have had pneumonia twice and am an ex-smoker, so the lung issues with Sprycel scare me too.  For now, it's the devil I know so I am sticking with Tasigna for a while longer anyway.

 

I hope Tasigna is easier on you than it has been on me.  And if your PCR responds quickly to it, you could start discussing dose reduction with your onc.

 

Good luck and keep us all updated.

[thatguy]

Carrie, don't panic. I'm assuming you were only on 400 MG Gleevec. If that's the case, keep in mind it may even have worked better at 600 or 800 mg. You managed 10 years out of the most basic TKI, and have many more potent options available. Not everyone has the same side effects. Knock on wood, im proof of that, having nearly none worth mentioning or unmanageable, from either Gleevec, Tasigna at highest dose or Bosulif at highest dose. I know it's much harder to stay calm but it's a necessity. One of the drugs, if not multiple will likely work for you- and even better than Gleevec ever did, I'd bet. Best of luck, this disease will teach you faith, if nothing else.

[carrie]

Thatguy,

I did do an increase to 600 and 800 at one point early on. It didn't change much. So my onc put me back to 400, and yes most all of the 10 years was on 400. I just need to be able to continue working as a teacher. I need the income and the insurance. I just pray that the side effects are not so bad that I can't work.I hope I am like you with little to no side effects.

[cmljax]

I'm hoping and praying for you too Carrie

[carrie]

Thanks CMLJAX. Just took my third dose of Tasigna (200 morning and 200 night). So far ok, but I know it is early.

[Trey]

Carrie,

 

Given that you responded to Gleevec for so long, and the way you responded with a long plateau, the probability of responding well to another drug is very high.  You should be able to manage the side effects but the initial 3 months may be a period of getting used to the new drug.

[carrie]

Thanks Trey...that is good news. I am hoping and believing that Tasigna will do the trick.

[carrie]

Yep....one month on Tasigna and I have so many side effects. I am not liking this but it is what it is.

I hope after 3 months the side effects lessen. No point in listing them all.....boring.....I just hope it gets better.

[alc999]

I switched to Tasigna in April, after a little over 2 years on Gleevec. For me, the side effects lessened considerably after a few months. And my PCR dropped below 0.1 for the first time ever. Hang in there!

[Cliffee]

For me side effects lessened switching from Gleevec 600 to Tasigna 600.

Gleevec gave me bad swelling around the eyes and muscle cramps, Tasigna slowed hair growth at first and much deeper response.

Now zero side effects. I'm 50 years old and take no other meds so that might be part of it.

Been on it for >3 years.

 

You never know!