You are here

Hope for those with slow responses

Categories:

Hi everyone

This is just a posting that I would like to make to provide some hope for people who have sub-optimal / slow responses to the TKIs and who miss the milestones.  I am writing this for no other reason than that I personally experienced slow progress on dasatinib, and I searched myself to a standstill online to find some good news.  Sadly, most of the scholarly articles I found were all doom and gloom and caused me a great deal of unnecessary anxiety.  My doctor was also concerned - briefly, my history is as follows:

Diagnosis - 72% BCR-Abl on the international scale

3 months - 2.7%.  I was delighted to reach the "magic" 10% level.

6 months - 1.4%.  Suddenly a slowing down from a good start, and not yet reached the 1% milestone recommended by 6 months.

9 months - 0.57%.  Finally a CCyR was confirmed, but the doctor was worried that I would not reach MMR by 12 months. 

12 months - 0.36%.  No MMR, outside the ELNet guidelines and concerning because dasatinib is supposed to work faster than imatinib.  Because I was very ill when diagnosed, the doctor decided to hit hard and fast with dasatinib.  She was concerned that I was still three times above MMR.

15 months - 0.24%.  A drop of a third, but still double the level required for MMR and already 3 months late.  The doctor was visibly concerned and said that I might need a second BMB as well as a drug switch if the level still had not reached below 0.1% by the next appointment.  I was also worried because I felt that, at this rate, I would not hit it by 18 months.

18 months - 0.16%.  This was still significantly above MMR and now I had missed the NCCN guidelines (MMR at 18 months) as well.  My doctor decided to leave me on the dasatinib because the numbers were moving in the right direction.  I also managed to avoid the dreaded BMB for a second time.  

21 months - 0.12%.  Still sluggish progress but at least in the right direction.

24 months - 0.05%.  Somehow there was a significant drop this time and I finally hit MMR more than two years after diagnosis.  

So it IS possible to eventually get there, and I hope that my figures will provide some hope to others who are having difficulties with slow responses.  I have been fully adherent in taking the drug and have never missed a dose - the doctor said that this is crucial in eventually attaining MMR, and my advice to others is to just keep taking the medication, hoping and trusting that you will eventually reach MMR.

One more interesting thing: due to side effects that arose late into treatment, my haematologist is now switching me BACKWARDS to imatinib, after some consultations with Prof Tim Hughes, a leading CML expert in Australia.  To my knowledge, few people actually switch from a second generation drug back to a first generation one, and it is hoped that my MMR is now stable enough for the imatinib to maintain it at this low level.  I will start the imatinib on 1 May and keep posting about my experience, as I believe that I am quite a rare case.

Good luck to everyone and all the best for a speedy recovery.

Martin

Great post.  My schedule could be a duplicate of yours.  The difference is that in my early months I wasn't made aware of the Guidelines (US or European) and instead my onc just kept telling me how well I was doing.  I didn't know I was a turtle until I found the LLS discussion forum!  The irony is not lost on me that what turned out to be my greatest source of comfort and information initially scared the pants off me . . . I was so focused on how utterly lousy I felt and how my world had shrunk and how depressed I was that I think if I had thought the magic medicine wasn't even working right, I might have jumped off a high ledge.

Seriously, so much is perspective!  In 2009 things were so different:  dasatinib was, I think, not even available yet, the expectations were that you'd be on Gleevec for life, that most people would never become undetectable, let alone get off the stuff permanently.  And the "calendar" was much, much slower.  The thinking was that slow and steady was fine, that if you eventually got to the same place you'd be as safe as the speedsters in the end.  I was told I was doing fabulously to make it to MMR at 22 months - not Valedictorian, but certainly I was in the top quarter of my class and I could expect to get into a decent college and life would roll along.  Now, expectations are so high (maybe, distorted?) that people feel like failures if they're not MMR at 6 months and undetectable at 18.  I would love to spare people the very real anguish this causes! 

 

 

Wow I almost have the exact same response rate. Actually yours is the most similar I have ever seen in 2 years of being on the CML Forums (here and LLS)!  I agree that even turtles will do well in the long run in most cases. I sometimes wonder if the new milestones which were "set into stone" after the release of second generation TKIs are a bit too aggressive. I think possibly the doctors who came up with these milestones did not wait long enough to get a really large set of real life results before implementing them.  Maybe we are a bit slower than the average rate responders but I certainly do not think we are in the lowest percentile of response either.

 

Diagnosed Age: 28
Diagnosed Date: Oct-20-2015
0-27 Months Rx: Sprycel 100mg
Current Rx: Sprycel 70mg

0 Month PCR = 87%
3 Month PCR = 1.2%
6 Month PCR = 0.64%
9 Month PCR = 0.26%
12 Month PCR = 0.21%
15 Month PCR = 0.15%
18 Month PCR = 0.11%
21 Month PCR = 0.05%
24 Month PCR = 0.04%
27 Month PCR = 0.01%
28 Month PCR = 0.04% (after decreasing dose to 50mg)

Amazing, Martin!!! I'm really glad to read good news! I know that your journey wasn't easy (just like mine). If i were you, i would wait for the next pcr to change to imatinib, but i think you'll be fine. I had a blip last month (0.02% IS) but just got my re-test, now with a 0.007% IS, so i'm back to my 0.00somethings. Good luck, buddy!