9 replies to this topic

[Melanie]

Just wondering how long it's taken many of us to hit different milestones after DX.  My thoughts are with the onset of TKI therapy, does the old thinking of quicker to respond; deeper the response = better the outcome - does that really exist anymore?  Could CCyR be as good as MMR or even PCRU as long as the TKI continues to keep you stable? Is the trend more important than the level of response?  I know we all want PCRU for peace of mind, but could these other milestones be enough to keep our survival rate as high?  Is there any data supporting different survival rates at these different milestones since the use of TKI therapy, especially the 2nd and 3rd generation of TKI's?

I was dx 5/2011. Still waiting on CCyR, but very close and I'm stable. Not losing response. It's been 35 months.

Anyone else?

[GerryL]

Interesting question, looking at it slightly differently, there have been a couple of people who have been MMR/PCRU and lost response to the drug after a number of years.

[thomaskk]

Hi

According to my doc , he has never experienced progression into AP/BC fby patients who has achieved PCRU. You may loose PCRU but  stay within MMR . But he also added that other medicatios can reduce the impact of particular dosage , then a dosage correction may be warranted.

[johnny99]

Melanie, very interesting questions, I have also been thinking about these.

I found the following article very informative by dr Cortes:

http://m.bloodjourna...120/7/1390.full

He says CCyR is still the gold standard as far as survival data.

Further, your delayed response is most likely due to not being able to tolerate the full dose, interruptions, etc. It would be a lot worse if you had such a slow response at full dose without interruptions!

Having said that, in cases like ours (I also had lowered dose/interruptions, though luckily mine resolved in about 9 months) there just isn't any data to go by. Most of the data we see are of people on standard dose. Perhaps the best info you can get is ask your doctor what's his clinical experience in these cases.... have you asked?

Just my thoughts, best wishes!!

John

[JoshLee]

Hi,

    I sometimes hesitate to comment on stuff, which is selfish, but when it comes to being a slow responder I feel a duty to chime in. There has been a wealth of research done showing that people who achieve less 10% transcripts at 3 months have the some of the best prognosis. I achieved this milestone at 3 months but then slowed down. I got CCyR at 11 months, but plateaued for 1.5 years. I switched to Sprycel about 1.5 years ago and have had further reduction in my PCR, but not as significant as a lot of people on this board. I am hovering around a 3 log reduction as of now. I do think the CURRENT mind set is the faster and deeper the response the less chance of relapse. I take comfort in that I have maintained a CCyR for over two years. I DO think the trend is important. The longer you are stable, the greater chance that you will continue to be stable. I read that on an old post a few years ago and continue to say that in my head whenever I am feeling anxious. If you are a slow responder it can be so tough to see all of the great responses on this board and think "What about me?". CCyR does seem to be the gold standard so if you can get there that's great. However, if the time comes and your team feels you should go ahead and have a transplant it is best to do it when you are in chronic phase. The survival rate for transplant in chronic phase sky rockets if the patient is in chronic phase. Your excellent doctors will know what's best for you. Thinking of you and I'll say a prayer for a NEGATIVE BMB!!!!! -Josh

[Melanie]

Thanks for all the opinions and responses.

GerryL - Yes, there's always that hanging over our heads of losing response once a milestone has been achieved. Always a concern that never lets us forget we have this disease, especially at test time. I'm praying for a cure someday that doesn't involve a transplant. Still the stats are in favor of not having an adverse event the longer you're at MMR or PCRU.

Thomaskk - My local oncologist was just relaying to me yesterday about one of his patients that had lost PCRU recently. They're retesting, hoping it was a lab error.

John - Great article and well worth the re-read. I don't retain information as well as I use to.   Yes, I have asked all these questions to Dr Cortes as well as my local oncologist. They basically say the answers are unknown and that they can only go by the guidelines that their experience and history tell them. CCyR is still the best marker for optimal long term survival and the quicker you reach it the better, but that's not to say there aren't exceptions. It's in those exceptions that make room for other thoughts and questions. Like you say, most the information is based on standard dosage and responses and that's why I went to MDA to ask Dr Cortes about those of us that don't fall in that category. Even in his vast clinical experience, each of us that fall out of the normal response range are each so different, that each case has to be looked at individually to determine the best treatment or action plan. there's just no way to estimate or determine outcomes. It all becomes... we might try this or maybe this. If that fails, then these are are your next options...And around you go till you run out of options.

JoshLee - I don't know if this is of any comfort for you, but my doctors have always told me if I can reach CCyR, then getting any deeper response such as MMR or PCRU is just the bonus. Who doesn't want a bonus? Of course it's what we all want, but the most important marker is getting to and maintaining CCyR and you've done that for a long time. I love reading about everyone's great responses and success against this disease. It gives me hope and someday I pray I'll be posting the same great response. You're right about transplant being the best in chronic phase, so that's the crossroad we're at now.  My team is leaning towards transplant at this point ... I'm still processing.

Thanks everyone!

[GerryL]

Hi Thomas,

Wasn't really thinking about progression to AP or BP, just indicating that one size doesn't fit everyone.

[GerryL]

Hi,

Wishing you all the best with which ever way it goes.

CML scientists led the way with the targeted therapies, hopefully it will be the same with a cure.

[Tom1278]

Personally, I think as long as you reach CCyR, you are good.  MMR, CMR, and a "speedy" CCyR are all just icing on the cake, and reduce your overall chance of losing response by a bit.

I didn't have a CCyR at 12 months, but I was close.  I switched to a CML specialist, and by 15 mo I had a confirmed CCyR by BMB and a 2.1 log reduction in PCR.  She told me if I were the "typical" CML patient -- i.e. in my 60s -- my results would be fine, because, statistically, projecting the CCyR average relapse rate over the 25 year projected lifespan, I'd die of something else before CML.

But I'm only 35 and potentially need to live with CML for 50 years.  Because of that, she said I have to get to at least MMR, and ideally CMR, because the small decrease in the relapse rate between CCyR and these deeper responses -- when projected over 50 years -- results in a much, much lower overall chance of a relapse over my lifetime than if I only had a CCyR.

I just got my 21 month results today -- PCR is a 2.6 log reduction.  My doc wants MMR by 24 months and, if I don't get there, might move from Gleevec to Sprycel.

[Melanie]

Very interesting comment from your Dr - "She told me if I were the "typical" CML patient -- i.e. in my 60s -- my results would be fine, because, statistically, projecting the CCyR average relapse rate over the 25 year projected lifespan, I'd die of something else before CM."  Wonder where she got the average relapse rates from?

I would agree that in your case getting to MMR as quikly as possible would make sense given your age and her staements on relapse rates. Congratulations on your continued improvement!  If you do end up switching to a 2nd generation TKI, I hope you do just as well, if not better, with minimal side effects. 35 is way to young to have a disease like this!