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Disease progression - is it inevitable?


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#1 xxgirl

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Posted 15 November 2016 - 04:30 PM

Hi all!  

 

Just wondering if any one knows if it's possible -or if anyone has had personal experience with - never reaching CCyR, and not having significant disease progression?  I am on my fourth TKI (ponatinib 30mg), am 2.5 years post diagnosis, and have never had a PCR lower than 4% IS.  Is it possible that I can stay in the under 10% range with TKI, and never have significant disease progression?  Is there any research on the subject?      



#2 Trey

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Posted 15 November 2016 - 09:30 PM

It is very much an individual issue based on the genetics of the disease.  I realize you have two genetic anomalies in your Philadelphia chromosomes, a deletion and an insertion.  That makes any overall predictions very difficult.  These micro-deletions and insertions are hard to quantify regarding impact on drug response.  It is more about the drug response or lack thereof.  So far your response has been suboptimal.

 

I think you started Ponatinib recently -- how many months?  I also assume you did not try Bosulif, so it is still an option.  And the ABL001 clinical trial may be an even better option since it binds very differently than current TKI drugs. 

 

So I do not believe there is an answer to your overall question.  Some could do well long term with only achieving at or near CCYR, but others would not.  Last I knew you never had elevated blast counts, so that is very good if it continues. 

 

I think you must continue a trial and error approach to find your answers.  Wish I had more to offer.



#3 xxgirl

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Posted 16 November 2016 - 12:22 AM

Thank you Trey.

I've been on iclusig for a little over three months. My PCR was tested after about 6 weeks on the drug and it came back at >9%. (Previous PCR on Tasigna 800 was 4%.) Had blood taken again yesterday - awaiting those results. Game plan is to continue on ponatinib if results are less than or equal to the last test; increase dosage to 45mg if PCR rises. However, my dr is concerned with the vascular effects of higher dosage ponatinib, especially as a life-long therapy. (I'm 36.)

I had also struggled with low blood counts, and had regular rbc transfusions (about every six weeks) for over a year. All counts except for platelets have somewhat stabilized since starting 30mg ponatinib - which is great! But possibly irrelevant if my bcr-abl is going up.

Bosutinib is still certainly an option that I have every intention of utilizing if necessary before anything more drastic is decided on, and I hope that the studies on abl001 become more geologically widespread in the near future.

That said, I've been HLA typed and they are beginning to search the registry to identify potential matches. At the moment it is still a backup plan and no further steps have been taken.

I guess the thing is, that I can't imagine wanting to take a chance on transplant while I'm still highly functioning, and despite some side effects, feel relatively well. The catch22 of that is, of course, that transplant is more successful before the disease progresses and while the patient is healthy.

I was just hoping that if the disease stays stable -albeit, not at optimal levels, but not progressing either - that I could just go along merrily on my way without having to make any difficult choices. Maybe "suboptimal" in my case is good enough?

#4 Melanie

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Posted 16 November 2016 - 12:40 AM

Can totally understand where you're at. I asked the same thing for years about if suboptimal was good enough until I finally found the TKI that worked for me. Mine is Bosulif and hopefully yours will be iclusig. Sounds like you have some unique issues to work around. If it's any encouragement, I struggled with low counts too, and a couple mutations along the way and the Drs finally found a way to get enough TKI in me long enough to finally get to CCyR. Still struggle with counts, but praying in time they will recover too.
Hang in there. Hope it's a comfort to you that there's still more options. Wish you the best and hope you keep us updated.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#5 r06ue1

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Posted 16 November 2016 - 08:38 AM

Even those that reach MMR have a chance of progression, although it is very low (like 1%).  

 

If you have the ability to travel, ABL001 might be your best bet, if not, hoping the trial expands to a location near you soon.  


08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%

 

 

Taking Imatinib 400 mg


#6 xxgirl

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Posted 16 November 2016 - 05:54 PM

Melanie - so glad to hear that you have been doing well on bosulif.  Are you still on the experimental drug for low platelets?  (I believe that you considered stopping at one point?)  Has it been working to improve your counts at all?  My platelets haven't been over 52 for over a year, but I don't have problematic symptoms (just bruising easily - which could be somewhat remedied if I'd stop bumping into everything in my path), so my drs have not chosen to treat my thrombocytopenia.  

The deletion and insertion that I have each on their own *should not* have a significant impact on a TKI's ability to work, but perhaps combined, they do present more of a challenge to overcome.

I do take comfort from knowing that I do still have drug options, but I can't pretend that I'm not disappointed in my response (or lack thereof) thus far.  However, I have only been on iclusig for 3 months, so I continue to hope that it will, with time, produce better results.  

 

R06ue1 - thank you for the encouragement; I hope that ABL001 studies open up in Southern California soon, but as there are already two located in the west (Texas and Oregon), I may be asking for too much on that one.

 

And Trey - I kinda figured that there wasn't an answer to my question...just hoping that you knew of some obscure study that found that levels above CCyr could be good enough. Although, in reality I do know that everyone is different, and that what works well for some may not yield the same results for others, so even if there were such a thing, chances are slim that it would be relevant to my own particular situation.  Searching for breadcrumbs, I suppose.    

Thanks, regardless, for taking the time to answer my question to the best of your ability.  



#7 thatguy

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Posted 16 November 2016 - 11:26 PM

If I remember right, Tinman1939 on this site has had CML for quite a while, above the ccyr mark. Use the search author function, and look up his posts for some reassurance.
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#8 Melanie

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Posted 17 November 2016 - 12:40 AM

. You're not taking the standard dosage of Ponatanib yet, so it may take a little longer to get a deeper response. It took me over 18 months to reach CCyR after I started Bosulif and it took me almost 2 years to get on it. The highest dose I could tolerate was 400mg and standard is 500, so I'm sure that's why it took so long. You've got a great attitude and sounds like great doctors, so hopefully this result you're waiting on will show improvement.

Yes, I'm still in the clinical trial on Promacta for low platelets. My platelets are pretty stable at 70-80. Yes, I was trying to get off of it, but seems I'm now dependent on it as long as I'm on 400mg of Bosulif. I tried to lower my Bosulif dose, but my PCR went up immediately. I'm now trying to get it back down. Interesting alternate benefit of the Promacta is that it has elevated my HBG and ANC. Although, they're still low, they're stable and not dangerous. My Drs feel my marrow may never recover enough to produce "normal" range counts again.
Had to laugh about your statement about bruising and how maybe it wouldn't be so bad if you stop running into things! Maybe just having thrombocytopenia makes us clumsy! My legs and arms are always covered in bruises. It's encouraging to me to hear that your Drs have decided not to treat your thrombocytopenia, even though it's certainly in the low range. I may use your case as support when I ask to stop the Promacta. All in good time though. Take care and let us know what your results are.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#9 xxgirl

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Posted 17 November 2016 - 12:41 AM

Thanks thatguy! I've read through most of Wayne's history in the past, but now that I'm on ponatinib too it's become more relevant to me. Than you for the reminder!

#10 tinman1939

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Posted 21 November 2016 - 05:01 PM

xxgirl -

 

Not sure I posted most recent result (below), but nothing's new in that regard, numbers-wise. I go for my next blood test next week. So, we'll see if the "non CCYR" streak continues. If I were a betting man, I would say .... yes. I'm not going to lose any sleep over it, however. Every day (above ground) is a blessing : )

Thanks to thatguy for pointing you to some of my posts.

 

Happy Thanksgiving to you both. Which reminds me ...

It was 10 years ago on the day after Thanksgiving that I was diagnosed with CML. My 10-year Cancerversary is upon me.

My, how time does fly.

 

Wayne

aka TinMan1939
 

(Started Iclusig, or Ponatinib, on April 7, 2014)

Wayne's Progress                          BCR/ABL (IS Scale)

April 2, 2014                                       56.6 %

July 3, 2014                                         16.3 %

Oct. 3, 2014                                        54.9 %

Oct. 17, 2014                                      10.7 %

Nov. 24, 2014                                     12.95 %

Feb. 17, 2015                                     10.85 %

April 30, 2015                                       8.37 %

Aug. 11, 2015                                       1.46 %

Nov. 16, 2015                                       4.03 %

Feb. 18, 2016                                       3.84%

May 26, 2016                                       3.11%

Aug. 25, 2016                                       3.53%



#11 hannibellemo

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Posted 21 November 2016 - 06:49 PM

pamsouth was another frequent flyer on this discussion board and she was very happy with the level of response she had reached (above CCyR as I recall) and was concerned about the long term side effects of our TKIs.


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#12 thatguy

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Posted 21 November 2016 - 08:15 PM

Happy thanksgiving to you too, Wayne...should rename yourself to "steelman1939"!
3/25/2015- Dx'ed by FISH : 85% of cells dual-fusion signals, 7% with tri-fusion signals, WBC 212,000. Started Gleevec 400mg.... Calculated .93 SOKAL

08/17/2015- 14.793 % I.S P210 (quest)
10/15/2015- 3.313 % I.S (quest)
12/23/2015- 1.891 % I.S (quest)
1/07/2016- Tasigna 300mg 2x daily
1/14/2016- 4.414 % I.S P210- City Of Hope lab, mutation negative.
1/26/2016- 1.589 % I.S (quest)
2/22/2016- 1.719 % I.S (quest)
2/29/2016- 1.133 % I.S (quest)
3/03/2016- Tasigna 400mg 2x daily.
3/29/2016- 0.663 % I.S (quest)
4/27/2016- 0.781 % I.S (quest)
5/04/2016- 0.652 % I.S.(quest)
5/24/2016- 0.501 % I.S (quest)
6/28/2016-0.534 % I.S (quest)
7/15/2016-0.881 % I.S (quest)
7/22/2016- Bosulif 500mg
7/28/2016- t315i test- Negative
8/22/2016-0.432 % I.S (quest )
11/15/2016-0.325 % I.S (quest)
2/1/2017- .0445% i.s (genoptix)
5/6/2017- .0968% i.s (genoptix)
5/12/2017- .12 % i.s (quest).
6/4/2017- .083% i.s (quest)
6/11/2017- .0295% i.s (genoptix)
8/5/2017- .0501% i.s (genoptix)
11/6/2017- .0270% i.s (genoptix)

#13 xxgirl

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Posted 21 November 2016 - 11:05 PM

Thank you for posting Wayne. Are you still on 30mg of ponatinib? Is that the dosage that your dr would like you to continue with?
Do you have any ponatinib side effects? I'm experiencing some problems with my vision that are new to me, and I'm hoping that is something that will pass with time.
It's encouraging to me to see someone here that has lived with cmL for 10 years without hitting the major milestones who, regardless, is doing well on TKI therapy. So thank you for continuing to share your story.
And a happy thanksgiving to you too!

#14 tinman1939

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Posted 22 November 2016 - 12:12 PM

xxgirl -

 

I continue to take 30mg/day of Ponatinib. The oncologist prefers this dosage than the higher one, which had some issues related to it when it was first introduced.

 

Re: vision. My night vision is a real issue. In fact, I am headed to the opthamologist in 15 minutes to see what can be done. I had a real bad scare last week, leaving an event at night in downtown Dallas. The headlights from approaching vehicles as well as street lights combined to nearly blind me; had no idea which street I was on, whether I was going in the right direction or not - or on a one-way street. Scared the bejesus out of me. Anyway, it is a big issue for me right now.

 

Best wishes.

 

Wayne






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