6 replies to this topic

[mck_001]

I am 28 and newly diagnosed with CML (a little over a week ago).  I haven't begun Gleevec yet because my WBC is still very elevated and my oncologist thinks it's better to let the hydrea and allopurinol do the work until that WBC level is lower.  On Thursday, I was finally down from 200k at dx to 113k.

My question is, I have been told that there is a minority of people who are not responsive or become resistant to Gleevec and I am trying to find out what that statistic is.  I thought my doctor told me 60% of people respond well to gleevec and 40% of other people try drug b or c and then a very small amount of people go the transplant route, but that concersation is very foggy.  I have a second opinion with a CML specialist coming up and know I will be getting better information than I have gotten thus far.  Until then, I am trying to figure out the stats on just how many people respond well to gleevec and what the current percentage of people needing to go the transplant route is.  I keep seeing th 90% 5 year survival rate for people on Gleevec, but wasn't sure if that 90% includes all people dx'ed with CML and starting Gleevec or is it 90% of people who have proven an original good response to gleevec and are not resistant to it have the 5 year survival rate?

I'm very much in the "over-analyzing" stage, so if I'm just getting too analytical, let me know!  I hope I explained my question well enough.

Thanks! 

[Susan61]

Hi:  Your young and new to all of this, and you ask any questions you want at anytime.  You will get a lot of different responses, but your doing the right thing to get a second opinion before you start your treatment.  I was diagnosed in 1998, and I got 3 more opinions before I continued my care with my Oncologist.

I have been on 400 Mg. of Gleevec since 2000.  Gleevec and all the other new drugs were not available.  I did shots everyday of Interferon with a break on weekends, but it did not work and I was fortunate enough to be able to get into the clinical trial for Gleevec back in 2000.

     Just take it slow and get your opinions.  Get started on your Gleevec when your ready, and see how it goes.  The rest you will learn as you go.

     I do not want to overload you with information, and get you confused.  Just post as you go with anything you do not understand.  We have a great group who will always be available to answer your questions.  Welcome to our Group.

Susan 61

[Trey]

In the longest running clinical trial (IRIS Trial, now over 7 years of data -- see link below) Gleevec has kept 93% of those on the trial from disease progression (i.e., kept them in chronic phase, which is the primary goal of the CML drugs).  That is probably the most useful overall statistic. Since Tasigna and Sprycel have become available, patients have switched drugs more regularly for both better response and to change the side effects profile.  So somewhere about 60% of those who started on Gleevec since approval in 2001 remain on it, and most of the rest are now on one of the other drugs, even though Gleevec could have still met the minimum requirements for most of them.  Overall survival for newly diagnosed paitients is now about 95% (or maybe better).  The odds of needing a bone marrow transplant are probably about 1 - 2%, or maybe even lower with the new drugs and also counting the clinical trial drugs -- we just do not have the data.  But it is very low.  These stats are not exact since there is no central collection point for all the data, but they are close.  You will see some people say that Gleevec success rate is less than 60% or even less than 50%, but that is bad math since it does not take into account the fact that many people switch from Gleevec to change side effects.  That is a good thing, but it skews the overall stats if the data is counted that way.  So that is why your Onc would use a figure such as 60% success for Gleevec, since success now means both survival and quality of life.  Overall the stats are getting better all the time for both overall survival and quality of life.  There are still many who suffer from the side effects of the drugs, and that is not good, but it is getting better.  If you had been diagnosed 15 years ago the picture would have been very grim.  So the changes in stats regarding both survival and quality of life is incalculable by comparison.

http://www.gleevec.com/health-care-professional/cml-long-term-progression-rates.jsp

[mck_001]

Thanks to both of you!  Trey, that makes perfect sense and really clarifies my confusion!  Thank you again!  I'm very positive about the future, but so exhausted!!  I'm thinking that's all due to emotional stress, a low hemaglobin, and the medication I'm on, while chasing my three very small kids around and reassuring friends and family that it's going to be ok.  Looking forward to the day that all of this feels like my new "normal."

[CallMeLucky]

Hi mck

I can very much relate to where you are and how you are feeling, I was diagnosed last month.  I am 37, have two young kids and I am just starting to get past the initial exhaustion and psychological trauma of the diagnosis.  I started Gleevec a couple of weeks ago and so far so good.  from what I have learned, while a transplant is my last chance backup, I feel pretty good that it won't come to that.  The drugs seem to work in most people.  It may be a challenge to get the side effects in line, but you are young and hopefully healthy otherwise, which puts you in a good position to fight off what comes at you.  Welcome to our group, sorry you had to join us, but everyone here is been really great.

Best of luck

[sharingg]

My close relative was diagnosed with CML in July 2012. She was prescribed Gleevec and had her blood tests done every week. After few weeks she was told she had excellent results and blood test was not needed for another month (until September). During this month, she started experiencing various symptoms such as swollen nodes, fever, etc. She also suspects that she caught cold/infection from air conditioning which made things a lot worse. She told doctor about these symptoms but doctor said that despite these symptoms she did not need to have another blood test until September (as agreed previously). She went for a blood test two days ago and was told that her CML has progressed to blast phase, but the doctors said it would hopefully be possible to go back to chronic phase after having other treatment (Chemo) additional to Gleevec. We are very desperate and I would be extremely grateful if anyone who has had similar experience or knows anyone with similar experience could share information with us about treatment/prognosis in a similar situation. We suspect that blast has only started a few days ago so we are desperately hoping that this can go back to chronic phase with a view of further treatment to fight to achieve remission. PLEASE HELP. Thank you very very much. Sharingg   

[Trey]

I don't know where she is being treated, but when such things happen the local Oncs are not equipped to deal with them.  The best thing she could do is to quickly see a true CML specialist, even though it would likely involve travel.  This is very important.  The other important thing to do is to switch from Gleevec to Sprycel, which is a "stronger" drug (in simplistic terms).

Once CML progresses to blast phase the CML has become more aggressive and "smarter".  So the CML drugs may not work, or they may not work for long.  Because of this, most Oncs would recommend a bone marrow transplant if she meets the criteria for one (age, heart health, etc).  So what you have relayed about getting back into chronic phase with chemo and Gleevec is not very accurate.  She will still have an aggressive form of the disease, and chemo will not change that. 

Personally, I would not allow anyone to put chemo into me before I had seen (quickly) a true CML specialist.  Once chemo is started, the path toward a transplant has begun.  I would also want the blast phase diagnosis confirmed.  These things are not always easy to determine by local Oncs.

So she will need to act quickly to see a true CML specialist and have the blast phase diagnosis confirmed. 

Some previous discussions about CML specialists:

http://community.lls...=cml specialist