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Newly diagnosed and sharing some experience with Tasigna

Hi I am 38 years old male from USA. During the annual physical in late December my WBC count came very high 78,000. I had no other symptoms at all . My GP asked for another blood next day to double check and WBC was 80,000 so I was referred to heamtologist . With the Bone marrow biopsy it was confirmed that I have CML. As per the biopsy results there were no Blast cells. BCR Able was 64% and I was prescribed Tasigna ( Nilotinib) 300mg twice a day. since 20th January I have been taking Tasigna.
With in first two weeks all my blood level ( WBC,/rbc/ platelets ) came Normal and after a month my bcr-abl was 14 % . I had no visible side effects at all. I had my another pcr test on May 27th ( after about four months of medication) and my bcr-abl came down to 0.467% . All was going good but all of sudden since last 18-20 days ..I started itching on scalp, etching on different parts of body ..rashes and hives ..couple days were really terrible.. the topical hydrocortisone did help a lot but not a convenient solution as itching was occurred in many a parts of the body.. so I asked my doctor if I could take oral antihistamine drug ..and he says yes..so I took 10 mg Cetrizine and it's working well ..one Cetrizine 10 mg is keeping the rash and itching control for 3-4 days.

Any suggestions or comments regarding your experience with Tasigna or CML over all are highly appreciated.

In August 20 I will have another PCR test..I hope tej bcr-abl will continue to go down.

Hi Naj -

Welcome to the forums!  I'm in more or less the same boat as you... diagnosed at 38 (1 year ago), also on Tasigna (2 x 300mg daily).  Side effects for me have been generally mild, mainly general fatigue and, like you, itching.  (Very severe in the armpits and crotch, but also legs, scalp, elsewhere.) The itching started for me about 2-3 months in and was pretty bad for about 6 months.  Good news is that I seem to have come out the other side within the past few months.  Still have occasional itching fits but it is nowhere near where it used to be, so I guess my body has gotten used to it and adapted accordingly.  Hopefully you will have the same experience.

There is also good news in terms of numerous studies currently underway that seem to suggest some people who have been on TKIs for 3+ years and have had deep molecular responses can either completely stop or significantly reduce their dosages with only a small change of relapse.  I'm hoping I'm one of those.  Even if I can just cut my dosage in half I have a feeling it will have a significant beneficial effect on my fatigue and itching side effects.

 

sprycml,

Thank you very much for your response. Yes, your and my situations are very similar. I am having serious itching on the same places as u have mentioned but so far one Cetrizine 10 mg is keeping it in control for three-four days .. As far as fatiuge, I have not experienced that yet. I feel the same energy level as before.
I am very encouraged with your words.. hope itching will go way or softens in near future.

Similar to your expectations, I am also hoping that in 3-4 years I would be able to reduce the dosage, finger crossed !!!

Regards
Naj

Hello!

Here's another member of the "diagnosed at 38" club, writing from Italy; not the best club to be in, but it's nice to have company :)

I was also diagnosed last year, April 2016; blasts at 5%, lost weight, enlarged spleen, and myelofibrosis at the time of diagnosis.

No real marker of accelerated phase, but my CML was labelled as "advanced" (that is, chronic, but had been developing for a while). I was prescribed Sprycel 140mg, to be on the safe side.

Luckily I responded very well; at the 6 months checkup I was almost MMR, and I hit MMR at 9 month; the PCR (12 months) was 0,02 so I cannot really complain. 
As a consequence my dosage was reduced to the canonical 100mg.

My most noticeable side effects were (and are) mostly related to the skin; but that is no surprise given I always had a sensitive skin.

BTW, the bad news is that some side effects are still there: I have pimples, looks like I had too much chocolate; they decreased with dose reduction BTW. They come and go in waves: I get no pimples/follicolitis for a few weeks then back they are.

The good news is that the worst skin side effects are gone. I had a bad rash on my forehead, and something that looked like petechia on my calves (not really a rash, but similar in terms of look).
This, as most of the "hardest" side effects, were gone during the last year. Sometimes one of them pops back (petechia or something similar on my calves) but doesn't last for long.

In conclusion, I can't really help in terms of medication etc, but there's a chance that these symptoms, or at least their most severe aspects, will disappear by themselves after a while.

So, fingers crossed, and welcome aboard.

Davide

 

 

Hi ,
I am 38 years old,diagnosed in last year NOV end and immediately started on nilotinib 400mg 2 times/day.I was dx with 31% blast cells ,345000 wbc count,45%bcr- abl.My prospects very bleak and scary as i was dx in blast phase .Started on nilotinib and a fall back option of Bmt.
Initial 2 months was very bad with rashes on scalp,neck,arms, chest,legs and platelets went down to 48000,but slowly it eased up.Now platelets are at 160000 and small hives on arm with no itching,but some inching,pop ups in scalp will come up now and then.My hematologist said these side effects are part of side effects and will reduce with time.So managed with some aloe Vera cream.
My bcr-abl at 3months was 2.2% & 6 months was .347%,hoping to achieve mmr or less by 9 month (aug end).Except for blasts our cml journey is more or less same.
Wish u all the best !!!.

Davide and Harsh

Thank you very much for sharing your experience . Knowing that people similar to my age are managing the CMl with positive results provides me good hope.

Good luck to all of us.

Regards

I'm not even close to the 38 group (I am 64), but have been on Tasigna since Dx in October 2016. Response has been very rapid - MMR in 80 days; >MR 4.5 in 6 months.  Side effects have been pretty bad. First was multiple squamous cell skin cancers (9) and even more precancerous lesions on my arms and legs (@ 35 - 40). This led to my first dose reduction in March 2017 to 450mg.  Second has been 4 rounds on swollen salivary glands and mouth ulcers in March, April and June.  Third was the development of benign heart arythmias called premature atrial contractions. These additional AE's led to a 6 day drug break and another another dose reduction on June 12th to 300 mg per day.  Next PCR is late July - hoping to maintain my nearly undetectable response as side effects are much improved so far.

As for scalp itching, I did have that for the first couple of months along with folliculitis on my scalp - topical antibiotics worked well on the folliculitis. Other less serious side effects have included mild irregularity, intermittent grade 1 fatigue, cough, headaches, dry mouth.

Needless to say, Tasigna has not been easy for me, but it has obliterated the CML, so I have stuck with it. If the most recent dose reduction to 300 mg does not relieve side effects and maintain response, I will likely switch to 50 mg Sprycel.

Good luck to you all