Okay just got results. Been on Gleevec for one year and Sprycel for 1 and 1/2. Gleevec failed and now it seems like Sprycel has too! Went from Fish of @2% up to 16% in 3 months. Retested and they did PCR (Never had before ) and that was 35%. Also came back that I have the Trisomy 8. Anyone know what this means? I read everything on these boards everday but hardly ever post! Please let me know what this means! Thank you for your help! I'm stressing so bad!! Lost 8 lbs i the last month! Thanks Pam
Posted 01 September 2011 - 10:13 AM
I did a search and Trisomy 8 can appear due to some instability by the bcr-abl gene on the Ph+ chromosome. So I wouldn't worry about that part. As for the other part, I can't help, I'm pretty new to all of this, but I hope everything works out!
Posted 01 September 2011 - 11:18 AM
Since you also privately emailed me I will provide my response here as well:
You have certainly had more than your share of issues. You are a
fairly slow responder to drug therapy - probably in the bottom 25% of
responders to TKI drug therapy. And it certainly would be better to
not have the Trisomy 8, but this is not always an indicator of a
poorer outcome. For some it can come and go. Some researchers think
the TKI drugs can cause the Trisomy 8. Trisomy means "three", so you
have an extra chromosome 8 in some blood cells. Most people have two,
but you have three. It is not as good if the Trisomy 8 is in the
normal (non-leukemic) cells. Ask your Onc if the Trisomy 8 is in the
leukemic cells or in the normal blood cells.
Along with the Derivative 9 (der 9), adding the Trisomy 8 means you
have a couple chromosome anomalies beyond just the Philadelphia
Chromosome. You would prefer to not have these, but some have them
and do OK. So I do not think it is just about these chromosome
anomalies alone, although they are not helpful. It really comes down
to how well you respond to the TKI drugs. Your FISH has been rising,
and your PCR appears somewhat high, but you said you never had a PCR
-- that is hard to believe that your Oncs would not have ever done one
before. These test results need to start dropping soon.
Overall, if your response continues to deteriorate, then the TKI drugs
would not seem to be working. You will need to see what the next BMB
report shows. Hard to "wait and see", as you said. I don't recall if
you have tried all three TKI drugs. If not, trying the third one
would be an option.
Dr Smith [who your Onc is conferring with about your issue] is quick to
recommend transplant, so be ready for that. But I will not minimize the
fact that you are on the verge of needing to go in another direction if your
response does not turn around very soon.
Since you confirmed here that you have not tried Tasigna, I would suugest that you try it now. You had a Kinase Mutation test in early 2010 which was negative, but it might be a good idea to repeat it now. Sometimes a mutation can take a while to show up.
Posted 01 September 2011 - 12:42 PM
I'm sorry your having such an issue. I too have three chromosomes I have an 8,9 and 22. I failed gleevec at 9 months shot up to 59 on my fish, tried tasigna got sick from it. Now on Sprycel for about 3 months now I think last fish was only 3, he just did another fish so I'm waiting on my results. I too have not had a PCR yet as my onc say not need till we get my fish down to 0 then start PCR's so your not alone in that.
I say a pray for you for good results.
DX 5-2010 Started normal hydra then Gleevec for 9 months stopped working
Tasigna after 5 pills pancreatis numbers jumped up quickly
Started Sprycel 100, 8-2010 for a 3 years went down to 50 mg numbers at one point really jumped up quickly
currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then
After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now
numbers lower then ever go figure I've never been this low of a number
last 2 tests .0686 and .0181 !!
Posted 01 September 2011 - 03:52 PM
For what it's worth, I'll definitely say a prayer for you. I hope, hope, hope, that tasigna will do the trick for you. I really hate what this disease puts us through as far as the waiting around is concerened. I hope you can avoid a BMT and kick this thing's ass. We are all here for you if you need us. -Josh
Posted 01 September 2011 - 10:59 PM
Hi Pam: Sorry your having such problems with these drugs. I would definitely try the Tasigna or I know a few people doing very well on the Ariad Trial who failed everything else. I will keep you in my prayers for some good response before thinking about a BMT.
Posted 02 September 2011 - 08:59 PM
Thank you Trey! I know you are not a doctor but I so appreciate anything you have to contribute!!! My onc did get me a appt with Dr Smith and she said he was looking into the clinical trials. Never done Tasigna yet?? Guess they need to look at the bone marrow ??? At least she told him I'm not into the transplant thing!!! Okay der 9 and Trisomy 8 how lucky can I be??? What's it all mean????? Thank you so much for everything that you do for everyone.
Posted 02 September 2011 - 09:12 PM
Thank you so much Trey for everything! I have alot of stuff going on but your info has helped soooooooo much!!! Thank you!!
Posted 07 September 2011 - 03:36 AM
I believe it was you breaking out the snowplow after the uncomfortable news about Gleevec (that was quite inspirational for me as I was newly diagnosed then). It is always a wonder to me how strong we (you) can still be after receiving one blow after another. It is like our good health was totally stolen from us. I never thought in a million years it happens this fast (well, wish I had a million years to think about it---but you know the expression). You sure have received your share of blows and I want it to be enough already. Gleevec sorta pooped out on me too and Sprycel ain't the "miracle drug" it seems to be for most folks here. I understand how horrific this all can feel. I want so much for you to achieve deeper and faster results. You are still in my thoughts. I wish you peace of mind and for something to beat back this crappy disease for you indefinitely.
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