9 replies to this topic

[lindacarriere]

My husband was dx one year ago with CML.  He was put on Gleevek and recently has had sub optimal response, not yet reaching MMR.  His Onc switched him to Tasigna and after the first three days he has developed intense abdominal pain.  It comes and goes.  I recall he had the same initial response on Gleevek and it subsided after about two weeks.  Has anyone else experienced this when switching?  He is quite discouraged at this point as I think he expected side effects, but he really feels like he is starting all over again.

Also, can anyone tell me when it is normal protocol to test for a mutation?  His Onc said they would if the Tasigna didn't work.  I am curious about this and how it works.  Because he has already been on Gleevek and it worked to a certain point, does that mean it could have mutated?  Or does the mutation happen initially and the TKI's work to a certain point and then stop?

Thank you all.  I am a bit of a lurker but I take a lot of comfort coming to read the boards and getting help from reading all of your experiences.  Although I am not the patient, I try to understand as best I can what he is going through.

[CallMeLucky]

Tasigna can cause pancreatitis, if he is having abdominal pain it should be called in to Onc to check it out.

In general the thought is that the mutation would have always been there and after Gleevec knocked out the "typical" CML cells then the mutation would become more prominent and start to show up on tests by numbers increasing.

Your not there yet so I wouldn't focus too much on mutations.  I'm assuming he is FISH negative, just not MMR on PCR?  if FISH negative then work through it.  If not FISH negative then I would ask for mutation test now.

Tasigna like any of the others can be rough start but usually settle down.  Hard not to be discouraged but try not to be.  Things will settle down, even if there is a mutation the 2nd gen TKI drugs overcome most mutations and even if it were worst case T315i, ponatinib works for that one.  Unlikely that is the problem.  2nd gen TKI will likely work, just need to get it worked out.  If pancreatitis you will go to Sprycel instead.

Good luck.

[Trey]

Some Oncs tell a patient they are suboptimal when they are not, which does not serve the patient very well.  That may be true with your husband.  If your husband has achieved CCyR then a kinase mutation test is not very useful.  They are normally shown by a sharp and sudden increase in FISH or PCR results.  At one year the goal is not MMR but rather CCyR (zero FISH or zero BMB cytogentics, and roughly a PCR of 1% International Scale or 2 log reduction).  There is nothing wrong with switching drugs, but it was probably unnecessary unless he is not close to CCyR yet. 

Starting a new drug is indeed starting over when it comes to side effects.  So he must give it a few months to settle out.  The abdominal pain is fairly common and is nothing serious in almost all cases unless unrelated to the drug.  Pancreatitis would take a while to develop.  It will just take some time. 

[Cliffee]

I just switched from Gleevac 600mg/day to Tasigna 600mg/day on April 4th. The only side effect I experienced was soreness in my legs which I also had when I first started Gleevac. It subsided in 2-3 days and has been gone since, just like Gleevac. I took a four day break before Tasigna.

How long did he take a break from Gleevac before starting Tasigna? What Tasigna dose is he on?

I would give it a few days. Since Gleevac gave him similar issues and it went away there's a good chance the same will happen with Tasigna.

I totally agree with trey. I would think pancreatitis would take more time to set in.

[nivekbed@comcast.net]

I had a horrible time on Tasigna. I never have headaches and while on Tasigna I had unbearable ones. I also felt like crap. I developed bumps all over my body. I chose to go back on Gleevec. Supposedly Tasigna is stronger? If the Gleevec doesn't work any longer, I would go back on Tasigna and try to remedy the side effects.

My bones ache with both drugs.Anyone else?

[lindacarriere]

He has acheived CCyR.  He went from a 1.6 log reduction to a 1.4 log reduction in about 2 months.  He was also dealing with some fairly debilitating headaches on Gleevek which I think is another reason why he was so quick to change him.  Headaches are gone (so far).   He was on 400mg/day on Gleeek and is on 600mg/day with Tasigna.  He took a two day break from Gleevek before starting Tasigna.  I almost wonder if it shouldn't have been more.  

[CallMeLucky]

In this case study a CML patient had acute pancreatitis set in one day after beginning Tasigna.  It is noted as very rare and in his case he had been taking other drugs that could also cause pancreatitis but had been taking them for years with no issue.  It is possible the combo is what caused the rapid onset.

http://www.theannals...nt/47/1/e3.full

It's probably not pancreatitis but if the pain is significant I would let Dr know - better to be safe

Symptoms

The main symptom of pancreatitis is abdominal pain felt in the upper left side or middle of the abdomen.

The pain:

• May be worse within minutes after eating or drinking at first, especially if foods have a high fat content
• Becomes constant and more severe, lasting for several days
• May be worse when lying flat on the back
• May spread (radiate) to the back or below the left shoulder blade

People with acute pancreatitis often look ill and have a fever, nausea, vomiting, and sweating.

Other symptoms that may occur with this disease include:

• Clay-colored stools
• Gaseous abdominal fullness
• Hiccups
• Indigestion
• Mild yellowing of the skin and whites of the eyes (jaundice)
• Skin rash or sore (lesion)
• Swollen abdomen

[Vandyfan]

Linda, I was switched from Gleevec to Tasigna about four months ago, due to Gleevec not working with mutations that were occurring.  Gleevec had been rough in terms of G/I, despite my taking three or four Ammodium AD pills each day.  What few side effects I had with Tasigna were gone within six weeks.   Even my weight has dropped.

My doctor wants to keep me on the Tasigna as long as it is working.   Had a bone marrow biopsy last week and got results today.   I'm better than I was on the last Gleevec check, but not where my doc would like. 

[lindacarriere]

Interest about the weight loss.  My husband has experienced the same.  He has lost about 15 pounds.  I'm a bit concerned to be honest, but he has a healthy appetite for the most part and shows no other side effects.  We get his PCR results on the 28th, so we will know then how it is really working.

[KerriD]

I lost weight since I started on Tasigna 2 years ago at diagnosis.   Almost 20 pounds..... I call it my cancer bonus.   I had some upset stomach, itchy skin and hairloss in the first 3 months but all of those side effects have dissipated.  I reached undectable staus after only 4 months on Tasigna.  I really dont mind the dosing schedule.  I take it at 10 and 10.