9 replies to this topic

[Karinne]

After 4 years on Sprycel, I have PE. It begun with coughing and shortness of breath when going up the stairs and was confirmed by chest x-ray last week. I stopped Sprycel and took 5 days of Prednisone. I need to do another chest x-ray in a month and when my lungs are completely clear, I can go back on my treatment.
As you can see on my signature, my pcr is below MR4.5. My hem-onc discussed several options: back on Sprycel at 80 mg, try Tasigna or try Gleevec. I have at least a month to think about it and right now, I am leaning toward lower Sprycel. If I only have to take "vacation" from Sprycel for a month when I get PE, maybe it is not so bad?
I would really appreciate your input, with your thoughts and especially your own experiences. Thank you.

[scuba]

Anyone who is MR4.5 or better should not be taking Sprycel above 40 mg - period. That is my opinion based on evidence to date regarding Sprycel side effects and P.E. and in discussion with doctors at M.D. Anderson. You should not resume Sprycel above 20 mg. in my opinion.

 

I take 20 mg. Sprcel and I am PCRU. Trey takes 20 mg Sprycel and I believe he is also PCRU (i.e. undetected). I started taking 20 mg when my PCR was above 55% and it was still strong enough to bring my PCR way down and ultimately to undetected. Finding the correct minimum dose which works for you is what is important - not taking the maximum clinical trial based dose.

 

For people who are at or close to PCRU, taking 20 mg Sprycel for maintenance is very practical and if there was a previous P.E. episode, almost required.

 

Consider resuming Sprycel at 20 mg after your P.E. resolves itself. Have a PCR test at six weeks following resumption to verify your PCR level. You can always try increasing your dose to 40 mg if 20 doesn't work - but I suspect you will probably remain close to MR4.5.and be fine on 20 mg.

 

My two cents ...

[hannibellemo]

I agree with scuba on the lower dose. All the old literature says to restart at 80 mg. but you will not need that much. I lost MMR and almost lost CCyR after 9 weeks off and restarted on 50 mg. It took awhile to get back to MMR and longer to get to PCRU but I did.

 

I would refuse anything higher than 50 mg. 

 

Sorry about the pleural effusion and I hope it clears quickly for you. Steroids did the trick in my case. Good luck!

[kat73]

Karinne - Very sorry you have joined the PE club.  I hope that was your first and last episode.  I agree with Pat that a reduction to 80 (assuming you were at 100) is probably not going to be enough to prevent a second effusion.  You would, at your level of response, probably be completely safe (CML-wise) at 50.  My experience has been that I got my first PE on 70 mg, another one after reducing to 50 mg.  My onc is adamant that 20 mg is too low and could possibly cause drug resistance to develop in the future.  There is a strong bias on this forum against this concept - you'll see many advocates for 20 mg - and I am, myself, going to try it to see if I can stave off another PE, as I really like what Sprycel has done for me, otherwise.  But the onc is NOT happy.  So, anyway, there's MY two cents.

[scuba]

from Kat,

"There is a strong bias on this forum against this concept - you'll see many advocates for 20 mg - and I am, myself, going to try it to see if I can stave off another PE, as I really like what Sprycel has done for me, otherwise.  But the onc is NOT happy.  So, anyway, there's MY two cents."

 

Kat - Dr. Jorge Cortes prescribed my 20 mg Sprycel. He is a top researcher in the field. He is the one who told me that Sprycel is "potent" and that high dose (i.e. 100 mg) has "problems" mostly associated with P.E. He has prescribed lower dose and seen that it works - as effective as the higher dose even if a bit slower - but WITHOUT the dangers of P.E. He told me, quote, 'we can increase if we need to', but if we 'don't need to, this is good'.

 

I have been on 20 mg Sprycel for YEARS. There is no such thing as "drug resistance" to TKI's. That applies to bacteria. Not cancer. Trey should weigh in here as the forum 'expert'.

 

I hope this helps. People on this forum are more educated than the general Oncologist population. And that's a shame ... for those CML patients who don't know about this forum.

[mscl]

Thought I would post my PE experience...

Dx 2/10/12 put on Sprycel 100 mg. 10/2015, Pleural effusions, both lungs, had about a 3-4 week break in Rx, reduced to 70 mg. PEs, weren't completely gone, started building back up, took about a 6-8 week break in Rx.

01/2016, Reduced to sprycel 50 mg.

10/2016, developed severe skin rash, mainly upper arms and upper legs, smaller rashes on lower arms, lower legs, upper back/neck. Rx break of about 6 weeks.

1/25/17, reduced to Sprycel 20 mg.
7/19/17, still at 20 mg Sprycel, undetectable.
11/9/17, 20 mg Sprycel, still undetectable.

[Karinne]

A enormous thank you to all!!!! You gave me a lot to think about.
Ironically, now that I am on vacation from Sprycel, my January pcr result is PCRU for the first time....
Right now, you convinced me to try 50 mg when I resume my treatment. I am honestly scared to go lower but I will get there eventually if 50 mg works well.
After resuming treatment, as Scuba suggested, I will have a pcr test after 6 weeks.
Question for Scuba, if pcr is stable or going down, of course I continue with 50 mg. BUT if pcr increases, how long should I persist with 50 mg? 3 months? More, less?
Talk to you all soon.

[scuba]

"Question for Scuba, if pcr is stable or going down, of course I continue with 50 mg. BUT if pcr increases, how long should I persist with 50 mg? 3 months? More, less?"

 

If PCR is within 1/2 log, continuing 50 mg for another 3 months to verify trend is fine.

However, I fully expect you will continue where you are (PCR or < 0.01%). You may want to lower your dose further and join the 20 mg club.

[Karinne]

Thanks Scuba. Sounds good.
The famous 20 mg club? I will be a member one fine day....
Now, I have to sell it to my hem-onc...

[M.A.]

Question for Pat / hannibellemo...

 

I lost MMR and almost lost CCyR after 9 weeks off and restarted on 50 mg. It took awhile to get back to MMR and longer to get to PCRU but I did.

 

Just wondering how long it took you to get back to MMR on 50mg after you lost it during your Sprycel break? And also how long it took you to get to PCRU on 50mg?

 

Also, sorry for being pesky ... but do you remember your PCR value prior to going off the Sprycel in the first place?

 

Thank you and also thank you for all your wonderful posts.