15 replies to this topic

[cmlquestions]

I have been off of treatment for 7 months, but my BCR/ABL has gone back up and shows loss of MMR.  I stopped treatment in the first place because, while Tasigna was effective in treating the disease, I was having a lot of side effects.  I have tried Sprycel twice and reacted badly to the first dose both times.  Gleevec is not indicated in my case.  I saw a CML expert who recommended starting back on Tasigna at 400 or 450mg once daily.  I was planning on trying the 450 (because it sounds a bit more potent and I already have 150mg capsules at home), but I'm a little nervous that this could initially cause more side effects since it's so much at one time.  I started on 400mg twice daily when I was diagnosed before it was reduced to 300mg twice daily after a couple of months.  Has anyone ever taken 450mg at one time?

[Lori's okay]

This may be of no help, but I am currently on 450mg Tasigna per day taken as 150mg in morning and 300mg in evening.  Can tell you very little of my response since I am so early and have not even had my first 3 month FISH, but the side effects are way more manageable for me than they were at 300mg twice a day.  I don't see why the dose would need to be all at once, maybe this dosing schedule would be an option.

Good luck,  I'm sure you'll hear from those on this board who know so much and are so very helpful!!

Lori

[jenz]

I started taking Tasigna 800mg  (400 X 2 daily), then did wonderful dropped like 2 logs in 3 months, reduced dose to 600 mg (300 X 2 daily) and continued to drop but side effects remained.  Finally at nine months my QoL has been bad due to side effects we dropped it to 450 Mg (1 daily).  I too at first was nervous but I haven't had any trouble at all. If you think about it when I started I was already taking 400 all at once, and now just 450.  You will do fine.  I am headed back to my doctor next week after being on the lower dose a month to see how I am responding.  Hopefully I have continued to decrease or at least maintained my MMR.

[jenz]

My CML specialist advised taking it all at once, so that the drug peaks and then slowly tappers off in your body. So you have more time on a lower amount in your blood stream which in theory will help with side effects.

[cmlquestions]

Hi Jenz,  Thanks so much for your response!  That is very helpful info.  I would be interested in hearing how your disease responds to the 450.  That would be great if we could get by on a lower dosage, as I had the same issues with quality of life.  I wish you all the best!

[hannibellemo]

Hi!

You have posed an interesting question but raised a few, too. Do you mind taking a look at my questions and answering those you are comfortable with? I apologize in advance for what may appear to be the "third degree", but I think your answers could be very helpful to others. We've had quite a few discussion threads devoted solely to side effects from all of these drugs.

Since you were MMR you must have been in treatment for awhile and evidently it was with Tasigna? 300 mg. 2x per day? Can you give more details of your treatment and responses and side effects?  7 months is a long time to be off meds for side effects so I assume this was planned to see if you were one of the ones who could stop completely? You were MMR for at least 2 years?

What was the reaction to Sprycel that kept you from taking it after only one dose, twice?

Why did someone tell you that Gleevec was not indicated in your case? Do you have a known mutation that does not respond to Gleevec? These are all TKIs to treat CML so Gleevec would be indicated unless there was some known reason why it wouldn't be effective or that you would not respond. Is it possible you may be missing out on the one drug you can tolerate by not trying it?

Good luck, whatever you decide to do.

Pat

I am dealing with pleural effusions after being on Sprycel for 2 1/2 years and MMR for over half that time. That sucks; but that's that way it goes.

[susanlathers]

this is the most hopeful news I have heard in 5yrs.  I have been on Tasigna almost 2 yrs.  Last 6 months,  400 mg in 1 dose and 200 in the other dose, total 600 mg. per day.  I would love to go to a one dose a day.  For me, the dosing and food restrictions are the worst side effect I have.  Oh, that's not true, it does effect my blood sugar and I am in a constant battle to keep my glucose levels down.  I have a onc apt in April and you can be sure I am going to push for the once a day dose.  She is extremely conservative tho and I doubt she will ok it.  She will say, let me research it and we will talk about it next time.  Next time is 3 months !.  My PCR, since Tasigna, has been mostly neg with a few minor bounces into the positive (diagnosed 6 yrs ago, PCR neg 2 yrs).

Please keep us posted,

Susan

[cmlquestions]

Jenz, I thought of a couple of questions for you:  What time of day have you been taking the 450mg?  I'm wondering if I would better tolerate the drug peaking during the daytime or during the night. Also, how long have you been at this dosage. Thanks!

[Trey]

It seems very odd that you would have not taken any drugs for 7 months.  Most Oncs would have put you on the lower dosage a long time ago.  The issue of low dosage has not been explored well enough in clinical trials, but is gaining attention as Oncs prescribe lower doses to keep the patient on a drug, rather than stop any longer than a couple weeks at a time.  So a lower dosage of either Tasigna or Sprycel would be a much better approach than stopping the drugs for 7 months. 

Regarding taking the drug all at once or splitting dosage when on low dosage, part of the answer relates to how long the drug remains in the body.  Sprycel has an average half life of only 5 hours, while Tasigna and Gleevec are closer to 17 - 18 hours.  So low dose Sprycel should be taken all at once.  But Tasigna dosage could still be split, and maybe it would help further reduce side effects.  Some might do better with the "all at once" approach, but more would likely do better at split dosage since the peak side effects are generally not as high.  With the 17-18 hour half life, there is always drug working in the body. 

[cmlquestions]

Hi Pat,

I was diagnosed in early June 2010 and started on Tasigna 400mg twice daily later that month.  The disease responded well, and I decreased to 300mg twice daily when that dosage became available in August 2010.  The side effects I experienced were fatigue, a bad skin rash, significant hair loss, and frequent/heavy/prolonged menstrual periods with bad cramps.  I stopped the drug for about six weeks from late Nov. 2010 to early Jan. 2011, and the symptoms improved.  When I started back on the drug, the symptoms returned and worsened over time.  I also started having an irregular heartbeat, especially after exercising.  This was not at all related to the QT interval and was diagnosed as PACs, which are not dangerous.  I started having this symptom more and more frequently even after I stopped exercising.  In late Aug. 2011, I decided to try switching to Sprycel.  After the first dose of 100mg, I woke up with the worst headache I've ever had (and I get migraines, so I've had some bad ones) as well as severe nausea and vomiting.  I had pretty significant headaches for two weeks or so when I started Tasigna, but nothing like this.  I ended up being admitted to the hospital overnight and decided to take a break from treatment.  At that time, my BCR/ABL had been holding steady at 1 cell per 100,000 for at least 3 months (almost complete molecular response).  I decided to monitor my BCR/ABL monthly and go from there.  All of the symptom disappeared, but the heartbeat issue returned when I resumed exercise (which may indicate that it's unrelated).  After a couple of months off of the drug, the BCR/ABL started climbing back up, although it did fluctuate up and down.  Several consecutive tests confirmed loss of MMR, so I traveled out of state to see a CML expert about what treatment would be best to try.  He recommended trying Sprycel again at 50mg.  However, when I tried that, I had a very similar reaction to the 100mg dosage, with the only differences being that the symptoms came on more gradually over the course of the day and I was able to keep from vomiting (probably because I got to the ER in time for IV meds).  The reason Gleevec isn't seen as a great option for me is that I had my entire colon removed in 2006 due to ulcerative colitis and take maintenance meds to treat chronic inflammation.  One of the most common side effects of Gleevec is diarrhea, so that would not be good for me.  Also, Gleevec tends to have a similar side effect profile to Tasigna, as the two drugs operate similarly, so it is likely that I'd end up with similar symptoms, if not worse or additional ones.  I know Tasigna has been effective for me in treating the disease, so if we can decrease the dosage to lessen the side effects, that seems like the way to go.  My goal is to get to complete molecular response and hold that for at least a couple of years before trying to stop treatment again.  I feel like these drugs are toxic to my body in so many ways, so I am not resigned to taking them for life.

Hope this answers your questions!

[cmlquestions]

Hi Trey,

Thanks for your response.  It was my decision to stop treatment indefinitely, and my hem-onc was comfortable with this as long as we were monitoring my counts monthly.  Once my BCR/ABL was showing a definite increase, he began encouraging me to go back on treatment.  Because of the negative experiences I've had, I've been reluctant just to jump back on Tasigna.  I've been diligent in researching my options and also sought a second opinion from a leading expert in the field.  After I failed to tolerate the lower dosage of Sprycel that he proposed, he was the one who then recommended taking the Tasigna dosage all together versus a split dosage.  Some of his reasoning may have to do with the fact that I've been off of the drug for so long that he may want to give it a bigger jolt.

[jenz]

I take 450mg at 6 PM everyday.  I was finding that I felt the worse in the morning when it was time to go to work.  By taking it at 6 PM for me meant I would feel the worse while at home and better in the mornings since I would have less drug in my system.  I've only been on this dose for 3 weeks now. My first PCR will be next week to determine if I am losing my response being on the lower dose.  I am currently at MMR.

[hannibellemo]

Thanks for taking the time! Wow, you have a lot going on! I didn't recognize your name but I remember bits and pieces of your story now. I can definitely understand how Gleevec might not work for you, although I was one of the few who didn't seem to have GI issues with Gleevec, my liver just strongly rejected it.

Would you consider one of the trial drugs, Ponatinib would be my choice, under compassionate use? We were discussing that in an earlier thread because so many of us have intolerances to the drugs even though they work very well for us. What do we do when we've gone through the approved three? (My thought is to cycle back through them again.)

I certainly hope this lower dose works for you and lessens the severity of the side effects. Again, good luck!

Pat

[mcfowler33]

I started Tasigna at 300 mg 2x daily and was only on it for about 3 weeks before side effects kicked me off.  Was off all drugs for about 3.5 months before my doc wanted me back on even though my platelet counts never really bounced back. Started again a 300mg a day and worked to the 450 mg 1x daily.  Was on that for about 2 months before we decided to give up and go to Sprycel (where I am now) and hopefully onto the clinical trial Ponatinib. 

Anyway, point is on 450 mg 1x a day, my side effects were no different than when on 300 2x a day or even 300 1x day. Tasigna just sucked for me...  Sprycel is not much better so far, but that is neither here nor there in regards to your question.

[Taylor]

Hi Lucky,

My two cents: Just between Gleevec and Tasigna, if you can be on something with less side effects and a chance of better test results, why wouldn't you switch?

Taylor

[luvmybees24]

Wow. I am sorry you are having such a hard time but this post made me realize how lucky I am. I have been on Tasigna (600 mg daily) for 4 months and my only side effects are dry skin and slightly thinning hair. I guess I am really lucky!