13 replies to this topic

[stephiericks]

I've posted a few times about my husband's CML - this board and its members are so helpful and supportive, I appreciate it so much. 

A little background - he was diagnosed Aug '11, suboptimal response to Gleevec in Jan '12 and he had a bad reaction to Sprycel.  He became a patient of Dr. Cortes and he put him back on Gleevec wanting to give it a little longer.  He responded to Gleevec, barely missing CCR by 1 on his appt this past August.  We just got the results of his most recent MDA visit, not good.  His BCR/ABL jumped from .54 to 32.23 and was 16/20 Ph+.  They are doing mutation testing and we learn results next week.  Cortes will switch him to Ponatinib if mutation test comes back positive and Bosutinib if not.  We know to expect some side effects but are very optimistic for good results based on the positive studies.  Timing is everything with the recent approvals. 

I guess I don't really have a question...just some support, thanks!!

[CallMeLucky]

Sorry to hear he is having a hard time, but it sounds like you are in the right place, working with the best and have a good plan.  As my doctor said to me, "this is really the best time to have CML".  I personally think it would be best to get it after a cure is found, but I get the sentiment!  Both drugs seem to have a lot of promise.  If he does not have a mutation then bosutinib looks like a really great drug, Cortes had an article out recently where he talked about the really good side effect profile.  If it turns out he has a mutation that is problematic, then ponatinib has really worked well for many people.  In another post I made the comment that ponatinib is to people with T315i what Gleevec was to regular CML patients 15 years ago.  Either way, I think there is good reason to be hopeful and not worry that this can't be dealt with.

Keep us updated on how he is doing and good luck....

[scuba]

I am surprised that Dr. Cortes put your husband back onto Gleevec after a sub-optimal response. That is not characteristic of him. His staff told me that he prefers the 2nd line and newer drugs as the first drug of choice. He told me he never would have started me on Gleevec when I went to see him when Gleevec was suboptimal for me. I asked him then - if the next drug doesn't work (Sprycel) what then? And he said we'll try another drug. Going back was never in the cards. So I am genuinely puzzled that he put your husband back on Gleevec.

Mutation testing is the right step - hopefully you'll get on a program with the right drug for your situation. And as 'Callmelucky' pointed out - (apart from going back on to Gleevec) you are in good hands. There's a drug for your husband's situation.

[stephiericks]

Thank you both for your responses.  Ed was started on Gleevec by his oncologist and after 6 months his Ph+ was 10/10 (I'm sure my verbiage is wrong...) and he switched him to Sprycel.  We then switched to Cortes - he felt that 50% was an okay response and said that some patients need a little longer so he put him back on Gleevec.

I feel he is the best person in the whole world to treat my husband - very grateful.

[scuba]

Stephie - I'm still puzzled why Cortes would put your husband back on Gleevec. What was it about Sprycel that was bad for your husband? Myelosupression (Sprycel induced low blood counts)? Bad side affects (headache, nausea, muscle cramps, other)?

I would have expected Dr. Cortes to lower your husband's sprycel dose first before doing anything else.

I concur with your opinion of Dr. Cortes. He is very patient friendly and accommodating. He has a great staff (and many international interns who have quite unique experiences).

Still ... very puzzled why he would put your husband back on Gleevec. And of course, it didn't work.

[stephiericks]

Yes, bad reaction to Sprycel and felt his original oncologist switched him off Gleevec too soon. I would venture to guess if he could do it all over he would have chosen something different.

[scuba]

What was the reaction?

[stephiericks]

104 fevers, shaking/shivering/trembling

[CallMeLucky]

Sprycel causes an immune system response.  My white counts elevated up to almost 10K when I started Sprycel, I didn't get a fever though.  After about 2 - 3 weeks it settled back down to around 6K range.

[momruns]

Greetings,

     I was on Gleevec for 18 months and my ANC was always low <1000 so I was gradually cut down to 200mg/QD.  After I was on that for about 4 months, my bone marrow was once again positive.  I was put on Sprycel in Dec 2012 and had mouth sores until this march when I was taken off.  I am talking one sore for 2 weeks and before that was gone I had 2 forming and in 2 weeks right when they were almost gone I had more until the last week in Feb I had approx. 10 under my tongue and multiple on both inner cheeks.  I was taken off 3/4 and about the 15th my mouth was clear. 

     I am going to start bosutunib this week.  We choose this new drug over ponatinib because ponatinib has a black box warning.    It is not that either drug did not work for me, I just could not tolerate them.  Actually the Sprycel gave me my best BCR-ABL level to date.

A side note:  My ONC was at a conference and he said there was a lot of talk about actually stopping meds on those who had response numbers that detected no CML after a minimum of 2 years.  That will be an interesting trial.  I just have to find a drug I can tolerate.

Thanks,

Loreta

[Melanie]

Stephie - I like Dr Cortes plan of putting him on Ponatinib if there's a mutation and Bosutinib if not. He basically told me the same thing and I'm on Bosutinib now. Although I'm only 40% dosage now, in the beginning I started on 80%, but due to low counts...lower dosage. Encouraging news is that even at those low levels, my PH+ went from 19/20 to 3/20 in 3 months, with a two week drug break too. The only real side effects is diarrhea, which can be managed. So, praying that your husband will also have a good response and this encourages you a bit.

Melanie

[stephiericks]

Very encouraging Melanie - thank you for the message! 19 to 3 in 3 months is amazing and I pray he has similar results.

[Thomas177]

Great story and great drug http://www.myfoxtwin...master-key-drug

[hannibellemo]

I had the same experience my first night on Sprycel without the fever, but add vomiting. The tremors (no vomiting) happened every night around the same time for about a month but to a lesser degree every night. Then at 8 weeks in I felt so ill, nothing in particular, just general malaise, lasted for two months and I felt fine! Weird drug the way it effects some of us.

I will probably be switching - pleural effusion at 2.5 years, reduced dose to 50mg and now I think pleural effusion is beginning again. Like Loreta, I would just like to find a drug I can tolerate. They all work, they just don't like me for some reason!

Good luck to you and your husband!

Pat