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Sprycel - Lack of Response

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Hi All,

Feeling pretty discouraged and scared at the moment. I was diagnosed Feb. 2018 with PCR 97%. I was started on Sprycel 100 mg and PCR has been steadily dropping, but began dropping more slowly recently and has now started increasing at 15 months. My results are below:

PCR at diagnosis: 97%
3 month: 3.822%
6 month: 1.069%
9 month: 0.547%
12 month: 0.256%
15 month: 0.945% (now worried)

I read a lot about people switching to Sprycel due to lack of response, but very few that switch from Sprycel due to lack of response. It seems, most people switch from Sprycel due to side effects. I'm wondering if there is anyone out there that did not respond well to Sprycel, but switched to a new medication that worked successfully?

I found the same thing and was also very discouraged. My numbers are as follows on 100mg Sprycel:

64% at DX
23% 3 month
1.9% 6 month
0.81% 9 month
0.32% 12 month
0.58% 15 month
0.111% 16 month via bmb
1.2% 18 month.

We decided to switch to Nilotinib without mutation testing because it approaches the disease differently than Dasatinib and also does better if a handful of mutations are rearing their head (F317 I think is one). I just pray and will find out mid June how things are going. Just think that just because it is uncommon does not mean it is unmanageable. The great news is that you responded in the first place (others dont). Also some respond clinically but the blood counts drop to unsustainable levels which is not the case here. Keep your head up. Mutation testing is not a bad idea but we decided to give Tasigna a go for 3-4 months. I am much less worried than I was when test came in. There are many options for you. It just doesnt go perfect along the way. Take care.

Job,

Thank you for the response. That makes me feel a little better, but definitely still trying to come to terms with these results. My wife is also pregnant and due in June, so that is just adding to the stress and feeling of unknown. Can I ask whether you considered Bosutinib or Ponatinib and how you and your doctor decided on Nilotinib? Also, are you doing monthly testing while you try the new medication? Thank you again for the response.

Ian

I have 3 kids and is probably why I worry when I do worry. I did not consider the other two because the thought was to try a 3rd gen as a later option. I would add that I know someone who failed all but Ponatinib due to T315I mutation and that was over 7 years ago. He is pcr 0.02 that whole time. Others have had to go on and off medication for low blood counts and eventually found the right medication and dose.

The only reason I tried another med is because I went 0.111 to 1.2. In your case I probably wouldn't change anything just yet unless it climbed in two consecutive labs. I believe 0.5 is within error.

Sorry forgot to add I did a lab one month after starting Nilotinib but just to make sure nothing was climbing (WBC or basophil) and everything looked fine. Next test is 2.5 months out from last lab.

I know of someone. A friend of my daughter has CML, she’s 34, started Imatinib in Oct. 2015, went to Sprycel, went to Tasigna and is now in a stop trial. What are the odds of my daughters childhood friend and I ending up with CML, within three months of each other?

I texted her and confirmed that she failed Sprycel.

Prof Steve O'Brien talked about switching when PCR is drifting up in his talk at the patient day last September. His talk is here the bit about changing drugs due to PCR increasing is from about 14 minutes in. I'm lucky that I didn't need to worry about mutations; I responded (a little slowly, with a plateau for about 4 months) to imatinib, but got to MMR and have sustained), but having a read a few stories on here if you've switched to nilotinib or dasatinib and are not making progress mutation testing is a likely next step.

Hope this is useful.

hi, buddy! first of all, you need a retest. You should not change your treatment based on a single pcr because it's a very sensitive test and a lot of variations can happen (i'm 5 years and 4 months into treatment and i mmr4 - 4.5 with a lot of variations). I know a patient who went for MMR4 to 1% and than had a retest and she was mmr4 again (i.e.: the 1% was a lab mistake). You also should look for interactions (drugs and food). Good Luck!

Thank you to those that responded. It has made me feel much better. I feel like I have a general plan of action now when meeting the oncologist: First retest for PCR and if the trend continues up perform a mutation test. If the trend continues up it helps a lot to know there are others out there that did not respond to Sprycel, but we’re able to respond to other medications.

Thought I'd provide an update on my recent retest. 

PCR at diagnosis: 97%

3 month: 3.822%
6 month: 1.069%
9 month: 0.547%
12 month: 0.256%
15 month: 0.945% (terrifying)

16 month: 0.315% 

My take away from all this is: Still not a great response, but it illustrates what many have said in the past. Tests have a large level of inaccuracy (1/2 log as I understand) and one blip up (however terrifying) shouldn't be solely relied upon to make a decision. I still wonder if my response with 100 mg of Sprycel is good enough to continue with the same treatment, but for the moment I'm celebrating the fact I didn't have two consecutive increases. I wish I could go back in time and tell myself not to stress constantly and lose sleep over these results.

Good news. Over the 12 years I've been on the site I've seen quite a few sets of results with this sort of pattern. The majority stay around 0.25% for a few months and then suddenly BOOM - MMR. I hope you find in time you are a member of that majority.

Thought I'd provide an update on my 18 month test and hopefully get your thoughts on next steps:

PCR at diagnosis: 97%
3 month: 3.822%
6 month: 1.069%
9 month: 0.547%
12 month: 0.256%
15 month: 0.945%
16 month: 0.315%
18 month: 1.06%

Unfortunately, it has increased again and I assume indicates Sprycel may not be the best medication for me. I meet with my oncologist soon, who is not a CML expert. I plan to request a mutation test and a change to Tasigna or Bosulif. Do you all think this is the right course or am I missing something?

Thank you all for your great insights

 

I also could not reach MMR with Sprycel and changed to Tasigna. I did the change without mutation testing but PCR dropped from 1.2 to 0.36 after first test on Tasigna. Obviously hoping for better this next one in September but it is back going in the right direction. I provided an update which I think is called Sprycel to Tasigna or something like that. Mutation testing cant hurt but just switching seems to be working for me as it approaches the disease a little different thank Sprycel does. Keep us posted for sure as there is not a lot of people who dasatinib is not good for but that doesnt mean it is not treatable.

BTW my previous posts are under Job Guerra which I can no longer log in as but ColoradoGuy is my new alias ;-)

Thanks for the information ColoradoGuy/Job. I appreciate hearing from someone that has experienced a similar response. I am hoping to also try Tasigna and hopefully have a good response too. I will keep you updated. 

My oncologist just notified me that she would like to wait for 6 weeks and retest. I am nervous about this approach and would prefer changing medications now. Am I being to rash based on my recent results?

Maybe they are looking at it as your first time losing CCyR and no two results climbed consecutively. I had to wait for Tasigna approval for about a month so IMHO I dont think it is crazy to retest. You barely lost CCyR and 0.5 is within test error.

My onc says it is not something that can run away from you suddenly. You will know in 6 weeks but perhaps mutation testing to know what to switch to in six weeks in case it climbs again?

Hope your numbers drop next time around and if not there are many options. Try not to stress and I know it is easier said than done.

Thought I'd provide an update to my most recent lab testing. We attempted to perform a mutation test, but the PCR was below 1% now so they were not able to perform the test. Update is:

PCR at diagnosis: 97%
3 month: 3.822%
6 month: 1.069%
9 month: 0.547%
12 month: 0.256%
15 month: 0.945%
16 month: 0.315%
18 month: 1.06%

19 month: 0.28%

I am surprised at the magnitude of these bounces and I'm not sure these bounces could be called a plateau. My oncologist noted that the 19 month test was performed by a different lab than previous and she plans to use this lab going forward. She wishes to keep me on Sprycel and perform another test in 6 weeks. I am unsure whether sticking with Sprycel is the right approach, so I am trying to get a second opinion from another oncologist. Unfortunately getting a second opinion takes longer than I anticipated. I've been feeling pretty anxious about this. Does anyone have thoughts on whether I should continue to stick with Sprycel (and my current oncologist) or try to switch drugs immediately and look for another oncologist? Thank you for your thoughts.

In many cases when response is quick in the beginning but then plateau's at a low, but significant level, there is presence of another CML clone.

Do you know what your CML clones are? (usually p210, p190, etc.). One or more clones get wiped out pretty quick leaving the other clone to "fester" sort of speak and they sometimes expand to fill the void. As you are seeing, the lesser clone is under some control and is bouncing around at a low level. It is possible these secondary clones die out (often in fact) or can initiate new disease and require a different drug approach. What is your blast cell percentage? if zero or only a few percent - you have time to sort this out. Your overall low PCR is encouraging.

While you are waiting on results - augment your therapy with immune boosting nutrition to help your TKI do its job:

1. verify your vitamin D status is above 50 ng/ml (simple blood test). If not, supplement with vitamin D3 to get your D level up to around 70 ng/ml. Vitamin D activates your immune system. Low vitamin D is like leaving the T-cell army in the barracks while invaders are attacking. Also - vitamin D buys you time while you sort out drugs.

2. Add quercetin to your diet (food and/or supplement).

3. Add Curcumin to your diet (at least 4 grams per day) C3 w/pepper preferred.

4. Add selenium to your diet (2-4 brazil nuts per day OR 200mcg supplement - not both at the same time - alternate).

Take the fight to CML with all you have - not just sprycel.

One final controversial point:

There is evidence that less sprycel can be MORE effective than your current dose of 100 mg. I know that sounds counter-intuitive, but a dose of 50 mg may actually give you a better response. This is because sprycel is immunosuppresant. In addition to sprycel attacking CML, it also suppresses your normal immune system from attacking CML. Research is showing that there is a median dose which maximizes both CML response to the drug and immune system response to CML. Higher sprycel dose leads to no change in TKI response, but lowers immune response leading to overall less response. Only when my dose was dropped to 20 mg, did my PCR plummet. Many people are "undetected" while taking only 20 mg. I am "undetected". These are relatively new research results and do not apply to everyone. Finding the right dose (especially with sprycel) is key.

Also - switching to Nilotinib could very well wipe out the residual clone. Multi-TKI strategies are an effective plan as well. Your doctor should not hesitate to swich you so you hit CML from many sides.

When dealing with CML - an all of the above applies. You will get there. Just stay vigilant and keep learning.

Hi Scuba. I believe my clones have been detected for P210. I think after the first test the P190 was no longer tested for. It was also noted in my most recent test that I had primarily b2a2 (approximately 0.28%) and a smaller portion of b3a2 (something like 0.05%) or maybe it was vice a versa. I was just shown this on a piece of paper very quickly during my last meeting and don't quite understand it's meaning. As far as blasts are concerned, the last test that checked blasts was in April 2019 and I had 0% blasts. Should I be testing for this more frequently? I have been taking Vitamin D, and tested for it once. It was 29 ng/mL. Which I understand to be on the low side, but not incredibly low. I will look into the other suggestions. Thank you.

Thank you for the update.  It is encouraging that it trended down as opposed to the opposite direction.  What Scuba mentions regarding residual clones makes a lot of sense and perhaps giving Nilotinib a try will push you towards those elusive lower numbers.

I will say that I miss taking one pill a day and not worrying about fasting.  I am encouraged with my first Nilotinib result and will keep you posted on my next one (mid-September).  

My oncologist mentioned that he has patients at around 0.2 for years without any changes in health or survival (maybe they tried a couple and do not want to go to Ponatinib or SCT conversation).  I think being below 1.0 and closer to 0.1 is considered a 'safe' zone and provides the same overall survival as MMR.  The bad news is that it does not look so good for TFR which would also be a great thing to reach.  

Hang in there and who knows maybe your next test or a switch will be just what you need to get to those lower values and keep them trending down.  

Thanks ColoradoGuy. I am very interested in your progress as we seem to have a very similar experience. I asked my oncologist about switching to Nilotinib and she was against it at this time. I really would like to switch and that's why I'm in the process of getting a second opinion. I'm wondering if there is difficulty in switching due to insurance? I'm also in the states (California).

I take 5,000  IU's vitamin D3 per day during summer and 15,000 IU's over two days in winter. Any level below 50 ng/ml is not effective in cancer prevention. So consider supplementing. My supplement program keeps me around 70 ng/ml and above 50 towards end of winter. It takes months for vitamin D to go up or down.

There should be no difficulty in switching due to insurance as anybody that covers Sprycel will have no issues covering Tasigna.  It is a matter of paperwork and pre-authorizations for the new drug.  That does take about 2 weeks (in my case took a month).  I was lucky that I had squirreled away some Sprycel from a time when my insurance was switched and had two weeks extra which helped me keep taking it while the approvals happened.  I had to call my nurse/pharmacy/insurance company at least three to four times each to get everything squared away.

So really my numbers may have climbed from 1.2 (when I switched) while I did this dance.  Nilotinib seems to be working with no side effects at all.  If you really want to change ultimately it is your decision and should be handled as such.  I will say that they probably see a lot of people that have a terrible time with side effects so when they see a case with minimal to no side effects they are reluctant to change.  

BTW I'm taking 4000IU Vitamin D and Curcumin tablets but after reading Scuba's post may up that to 5000IU.  Take care and I will keep this thread up to date.

 

Guy in Colorado - Best to get a vitamin D test so you have a baseline. You'll need more or less daily vitamin D depending on where you are starting.

I had it checked at the end of February and it was 23ng/ml which showed to be on the low end and not adequate.  I have not checked it since then but have only recently (three weeks) started taking the 4000IU.  I was previously only taking 2000IU.  Thanks for the info.

Hi Scuba and others. I just want to follow-up on my question regarding the frequency of tests for blast %. I got my last one about 5 months ago with 0%. Do you know if most people get this tested more frequently? I've done CBC's every three months in the past, but the blast measurement was uncommon and I think was only measured 5 months ago and at diagnosis. I'm just wondering if I should be pushing for this test to be done more often given my situation? 

I asked this question of my onc once.  His reply was that IF there are blasts, they will be recorded on your CBC.  The fact that nothing is mentioned means there are no blasts detected.

See Kat's response.

Blasts % is reported with every CBC and if zero blasts, often not reported at all.

Blast cells are very fast differentiating cells. They do not stay long as blast cells .... sort of like muons.

If Blast cells are measured in significant amounts, something is wrong - hence importance in leukemia.

Most people have zero to a few percent. Zero doesn't mean none - we all have lots of blast cells created, they just don't stick around.

In CML, blast cells do not differentiate and instead accumulate. This is the part of the disease that kills. When blast cells accumulate in sufficient quantity because they are not differentiating - it's hard to undo - sort of like a roach infestation. Need to burn the house down otherwise known as a stem cell transplant.

Interestingly. Vitamin D is necessary for blast cells to differentiate including leukemic blast cells.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2820234/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5303117/

In fact, vitamin D receptors are on blast cells including leukemic blast cells in large number. Without vitamin D, differentiation is slowed down or stalled.

In my own case, I always had blast cells. At diagnosis, my blast cell count was very high bordering on accelerated phase. My vitamin D status was also very low. Even during treatment, my blast cell count was never normal. ONCE I started my vitamin D protocol raising vitamin D from 17 ng/ml to around 70 ng/ml where it is today, my blast cell count fell to zero. It has been zero ever since.

More than any other indicator - blast cell percentage informs whether you have time to experiment with drug dose an other protocols. As long as blast percentage is zero or a few percent - ideally zero, one can experiment with dose and other trials because CML is a very slow disease when in chronic phase.

(I wonder if I ever would have developed CML in the first place if I had known about vitamin D's importance to the immune system and cell differentiation and kept my vitamin D level where it is today. I know of no one who had high normal vitamin D level at diagnosis. It seems low vitamin D is a requirement to trigger the disease among other things going wrong. It's not a cure, but could have, perhaps, been a preventive.)

Yes, Scuba, I think there is a connection.  My Vitamin D was super low at diagnosis.  Love your roach/burn the house down analogy - makes perfect sense.

Well I have an update on my 2nd lab on Tasigna (6 month) and 25th month overall.

0.36
Down to 0.34

So not really down at all. Just steady and no increase. I know MMR is the goal and of course TFR but Im wondering if anybody has been in CCyR without MMR for a few years. I may up 600mg Tasigna to 800mg and see what happens and probably mutation testing is in order. I have tolerated Tasigna very well and don't really want to change if I don't have to.

So should I be as calm as I am or is more serious discussions in order?

Hi ColoradoGuy, I ended up visiting Dr. Shah at UCSF (a CML specialist) over my results since they have been similar to yours fluctuating under 1% but above 0.1%. He told me that he was not overly concerned with my trend so far. He said a lot of younger men tend to catch CML a little later because they tend not to go to the hospital as early or frequently. He said because it is caught later, often times it takes longer to get to MMR and possibly may never get to undetected. He noted that it is more important to remain in CCyR for a couple years. If you remain in CCyR for a couple years your overall survival likelihood is very good/comparable to MMR. 

Just my two-cents, but after he told me this I felt a lot better. I just drew blood for my 21 month test and should find out the results in the next couple weeks. I'll keep you updated as we seem to be moving along a similar path. My thoughts are with you, and I'm hoping you remain under 1%.  

That's funny I just left my onc appointment and he said something similar regarding younger patients. He was not concerned right now and in fact advised against raising dosage. He did feel hanging out above 1.0-10 is a different animal and would be going about it differently in that case. Praying for numbers going down in the near future (yours as well).

Just an update on my response to Sprycel. Just had my 21 month test results and got the following:

PCR at diagnosis: 97%
3 month: 3.822%
6 month: 1.069%
9 month: 0.547%
12 month: 0.256%
15 month: 0.945%
16 month: 0.315%
18 month: 1.06%

19 month: 0.28%

21 month: 0.28%

My oncologist does not seem too worried even though I still have not reached MMR. She reiterated to me that if I stay in this zone without an increase in PCR my survival likelihood is the same as reaching MMR. She noted it's possible I may never get low numbers and I'll just hover around here. I'd obviously like to get to lower numbers, but I also feel fortunate to be where I am and have this medication. Is this trend concerning to anyone? Should I be more worried? 

Hey bud, I've been following your posts from the shadows and figured I'd reach out. I'm right around your age and was into treatment about your same length when my results were mirroring yours. I was constantly bouncing on pcr's up and. down, up and down. It was quite taxing mentally. I was between like .3 and .9 for probably a year or 1.5. I missed mmr at 18 and then 24 mo. but finally hit it with a random drop at about 25 or 26 mo. Luckily I have maintained it and further decreased for about the last 2.5 yrs. but still experience the fluctuations.

It's common for us youngsters. I would try to avoid stressing. You are at a real .30 it would seem with the consecutive tests, and overall that's really good in the big picture. Take care.

Thanks for the update as I am following your trends (similar to mine as you know).  It looks like your 18month may have been a lab error (maybe as a big bounce at 15 month as well).  That being said it looks like you have been in CCyR for 15 months.  That is good and staying so for 24 months would be ideal for probability of remaining there and even dropping in the future.

My oncologist feels that lower CCyR numbers are no reason to change and said it's best to let it reveal itself over the next few months (slow trend up or down).  Of course I'm praying that I see a sudden drop after plateau which I have read of many such cases.  

Remember that the definitions/parameters have changed over time and earlier people would not have given our numbers a second thought and reached good results years later.  

I think they pop out to us because of the natural lure of ND and TFR (functional cure).  I will update this thread in a couple months when I get my next results.

Thank you for posting your positive results for those of us who are around the same age and seeing very similar trends.  Very encouraging.

I was just looking at my own results, it took me 19 months to achieve MMR some years back. I wasn't the fastest responder.

I got my most recent result today (on 20mg of Sprycel, after an 18 month dose reduction plan) and it was MR5 - which is a first for me. It's been hovering around MR4-4.5 for a while before.

David.

Busaboy, David, and ColoradoGuy. Thanks for sharing your experiences. I feel much less anxious when I hear about similar trends. Sometimes I think it would be better not to know the milestones set out in the guidelines.   

My history mirrors David's, except it took me 22 months to reach MMR way back when.  But I'm in the same place now, on 20 mg Sprycel.  (The 22 months were on Gleevec, so perhaps for me, Gleevec was turtle food and if I'd been on Sprycel from the get-go I might have been faster.  Who knows.)

Hi, 

I had a similar trend too. It took me 2 years to reach MMR:

  • 100% - January 2014
  • 1,03 - October 2014
  • 0,63 - February 2015
  • 0,07 - February 2016
  • ...

The interesting part is that I wasn't concerned with the results because I was feeling well at the time, in good shape and just returning from a very cool trip overseas. In 2017, when I started being serious about knowing more about CML, I panicked. My PCR back then was (October 2017) 0,0132, but when I compared my trend with the optimal guidelines I got upset...

The good part about being upset and confused, at least for me, is that I try to go after more information and ways to improve the condition that bothers me. Since switching TKI or increasing my daily dose wasn't possible, I let the optimal guidelines on the side and I sought other ways to improve my life (Diet, exercise and sleeping early). 

You will reach MMR and go beyond that. 

Best regards,

Update for my 27 month result is in.

0.12% which is welcome news considering it is only .02 from MMR.

Previously

0.58%
1.2% (Sprycel to Nilotinib)
0.36%
0.34%
0.12%

Of course Im always hoping for a zero on both sides of the decimal point but I thank God for these results. Hope this is encouragement to those following these posts regarding less than perfect results.

I have been taking D3 and recently K2 and I also joined a gym with my wife and have been able to run 4 miles for the first time in years.
I hope to share better news in 3 months but for now Im grateful.

ColoradoGuy, that is great news and very encouraging for those of us with less than stellar results! I assume your oncologist was happy with these results? 

I have not met with him yet but I think he will be happy as he has mentioned that he has patients hanging around 0.2 for years. Glad to be able to share.

I thought I would provide an update. I just got my 24 month results and am now at 0.106%. I am very excited about these results. My oncologist commented again that I am very slow and his other patients responded faster, but he seemed satisfied with the results and continuing with Sprycel. For what it's worth, I'm very excited with these results. Each test under CCYR makes me feel a little better that I don't have a mutation. Hopefully this helps encourage slower responders.

That is great news!  My oncologist wasn't 'excited' about my 0.12 result but he was also not worried and felt that we should continue as we are doing.  I was excited and relieved when I got the result.  I think that for some reason younger patients sometimes tend to take longer to reach MMR.  It it by far more important to stay there than it is to get there.  We are trending in a good way and God willing the next few months will bring even bigger relief.  Thanks for sharing.

I seem to recall the turtle won the race over the rabbit? ... but I could be mistaken.

Did you add anything to your diet to "assist"?

I've continued to take Vitamin D supplements and for about 4 months now have been limiting the amount of meat I eat (about once a day or less). The decision to cut back on meat was more related to just overall health and not specific to CML.

Happy to see your results at 24 months!  It's interesting to see how perspective changes as the years go on.  When I was "new" to this, nothing much was made of not reaching MMR before two years, so I at least didn't have the anxiety of feeling like a turtle.  I thought that part of the deal was going great.  (I was, however, overwhelmed by Gleevec side effects, a different story.)  I'm sorry that people of today are made to feel so afraid and unhappy, when what they're experiencing is just a variation of the so-called norm.  Anyway, it's in the guidelines now, so on we march, and adapt.  I'll add my voice to others in assuring you that turtles quite often go on to double zeros to the right (and Beyond! to echo Buzz Lightyear).

Image result for buzz lightyear to infinity and beyond

Love 'im!

Hi There,

Just wanted to thank you for consistently posting your test results as I am going through some PCR fluctuations  (got results yesterday that I jumped from .3 to .7) and have been fairly concerned. I’m 38 and was diagnosed shortly after turning 24 and after Gleevec for about 8 or 9 years I switched to Sprycel. The turn of events was that after multiple PCR-U test results, I went off Sprycel 18 months ago to see if it was causing some chronic nerve pain I have been dealing with. It didn’t help (more related to me thinking I was a hero in the gym), and I went from PCR-U to 7.5 after 4 months. So the last year or so of being back on Sprycel I’ve been steadily dropping and got back to .3 for two consecutive tests, until this last one. Recognizing my situation  is perhaps a little unique, it’s nice to find a few reminders on this thread, after years of being fully confident in my PCR results, that the numbers can bounce around a bit. 
 

I’m happy to hear your results (and others on this thread) are stable and hope you’re enjoying fatherhood. As a father of 3 (all came post diagnosis) I can certainly relate to the worry (but blessing) that comes as a result of CML uncertainty and having young children around.  
 

Thanks again. 

 

Hi ipmaki,

I was 28 when I was diagnosed and I also missed many of the goals. I did not attain MMR until 21 Months. I have noticed a lot of younger folks having overall higher PCR numbers and missing milestones. In the old forum we used to refer to slow responders as "turtles". I came up with a sort of set of "turtle goals", seems these are more realistic timelines for folks who do not respond at the "normal" rate expected by many oncologists...

3 Months Less Than 10%
6 Months Roughly 1%
12 Months Less Than 1%
24 Months Less Than .1% (AKA MMR)
48 Months Less Than .01% (AKA DMR)

I am 53 months in and I am currently at .05 although I once hit .0008 but I am currently trying my second shot at dose reduction to 50mg my PCR doubled on my last test but going to give it 8 more weeks and see if I can get back near .01 again on the 50mg, trying to stay hopeful but worst case I just go back to 100mg or maybe try 70mg.

I just got my 27 month results and still not MMR. Unfortunately, that means I'm not even meeting "turtle goals". My 27 month results are 0.128% up from 0.106%. Granted not a large difference, but discouraging when you think this'll be the time you get under 0.1%. However, I did notice the new NCCN 2020 Guidelines seem to indicate staying under 1% is the goal? Is that correct? If so, makes me feel slightly better.  

Last note, Coronavirus related, I got my blood draw with limited issue last week (people in the waiting room keeping their 6-foot distance and a lot of masks). My oncologist decided a phone call was adequate for my appointment. They didn't seem to think I was at increased risk, but told me to be cautious. I'm still treating myself as increased risk and staying quarantined until I'm told to do otherwise. Anyway, hope you're all staying safe.

Below 1% is the target goal for maximum  'progression free survival' (over 95%). At this level, progression free survival rates are indistinguishable between patients who are undetected vs those who are under 1%. CCyR indicates zero CML cells counted under a microscope. Patients who achieve CCyR (same as FISH = zero) have the same success rate as those who achieve a very deep molecular remission or are undetected. No difference.

My research oncologist was only concerned with my achieving CCyR - after that, PCR was to track depth of remission and to be a "canary" in the mineshaft.

I agree that is not much of an uptick.  It's possible to see a couple of results around there before a drop.  Regarding the 2020 Guidelines that is how I understood them as well and it made me feel better.  I have my labs on Monday so I will post once I get them.  I have only had one wild result on the downward trajectory (1.2) which is when I switched to Nilotinib but I'm starting to think it was a lab error.  I was also at 0.12 at my 27 month and believe that under 1.0 is a good result.  I was 0.36 and 0.34 before the 0.12 so you may see MMR next.  Thanks for the update.

My results are in....0.16% up from 0.12% so really not much of a change (although a 0.04 swing in the other direction would have had me jumping up and down).  I was REALLY hoping that I would break the 0.1 threshold but I will remain hopeful that it is coming.  

Ipmaki - we are on a very similar trajectory (timeline, BCR/ABL, age, family, etc.) and I am going to keep this in perspective knowing that the standard you mentioned now shows us being in the safe zone (what my 8 year old calls "in the green").  If I stay at these values for years and never get to TFR I will concentrate on enjoying my family and life and press forward (similar to Type II diabetes).  

I pray for better results but am content with the current results.  It would be nice however to hear from other members that are not below 0.1 and have not been for a long time or ever.  

Take care of yourselves and stay safe and isolated.

BTW - I got my BCR/ABL results in one day which is incredible and has never happened before (usually takes 10 days).

ColoradoGuy, thanks for providing an update. I definitely agree with you. It would be nice to have that little adjustment downward instead of upward even though they are so close and probably within lab error. You mention hearing from other members in our situation (over 2 years on 2nd generation drugs, above MMR, and below CCyR). I know there aren't many of us, but I recently saw a facebook group on CML and did a search for the words "slow response" and "turtle" and found at least five or six people in similar situations. Some of them are now well within MMR, which made me feel better. Hopefully we hear from even more people. I really appreciate hearing from other slow responders and knowing we aren't that abnormal for not reaching undetected in 6 months! Also, that is an incredible turnaround time for testing! 

Hi mate,

I am 24 months into treatment on Nilotinib. I was diagnosed at 38. Like you guys I have small children. @ 18 months I was at 0.118% and now at 24 months I am at 0.164%. My 1st uptick and massively distressing. According to my oncologist this is the same result as my 18month result and I am “stuck” (not sure how he can say it’s the same result as the last) Told me not to worry but might increase from 600mg to 800mg if no mutations or switch drugs if I have a mutation. Currently waiting for the result by the seat of my pants. Can’t help but think a mutation is lingering... Hope it’s one that can be treat if I have one.

Seems it’s only a handful of us around with these similar results. Reassuring to hear anything less than 1% is the new guideline but can’t help but worry about the uptick. It is within the margin of error but doesn’t remove the unneeded worry does it!

All the best guys.

Alex

Hi everyone! 

I wanted to say I enjoyed reading everyone’s post about the experience they are going though. It makes me feel less alone with my cml that other people are have the same experience as me. I’m glad people are making an improvement on there PCR! I’ve been on 27 months of Sprycel and been on mmr for 24 months! Wish everyone best of luck and keep safe! Keep us posted
 

much love from Texas! 

I wanted to update this thread as well.  I finally snuck just under MMR (0.084%).  It has been 33 months since diagnosis and I did not reach MMR while on Sprycel (just to provide a refresher).

1.2% (Sprycel To Nilotinib), 0.36%, 0.34%, 0.12%, 0.16%, 0.084%.

I realize it is just under MMR but mentally it is a welcome result after 33 months.  I thank God that I have been in CCyR since 6 months and very happy to sneak under MMR.  It may bounce up a little on the next one before going down again (as it did in my previous two) but I hope not.  

Just to provide some good news for those not responding quickly while on 2nd Generation TKI.  If you are in CCyR then things are very good.  Thank you guys for posting your results and thoughts in this thread as it has provided me some context and relief.  

So update on switch to Nilotinib.  I had broken slightly into MMR for the first time after 15 months on Nilotinib and then slightly lost the response at 0.13% at 18 months.

Now after 41 months total (20 on Dasatinib and 21 on Nilotinib) I have my lowest number yet at 0.043%.  For those not responding to first TKI even if it is a second generation TKI don't jump to major decisions (cycling through TKI's/Transplant/etc.) if you have values in CCyR (under 1.0).  You can still get there and there are others in your situation.

Hi ColoradoGuy,

That is great news! Congratulations! These blips are so stressful. I'm glad to hear you continue a downward trend. As an update, I have my labs scheduled for early February and meet mid-February with my oncologist. We plan to discuss switching to Nilotinib depending on my results. She has left the decision up to me and I continue to debate whether I should switch. My numbers are in a relatively safe place and side effects aren't horrible with Sprycel. However, I would still like to see that next zero if possible and maybe avoid the potential for future pleural effusions. I know everyone reacts differently to these medications, but how would you compare Sprycel to Nilotinib? Thank you for your updates. It makes me hopeful to hear success stories with us slow responders.

Thank You,

Ian

Thats aweomse mate really glad to hear. Yep these pesky plateaus and blips are frustrating (and worrying naturally). Thats a nice response.

But I agree we need to hold our nerve on switching meds or jumping to conclusions when the evidience is clear like a massive climb or lots of consistent "significant" climbs. I think a lot of unexperienced docs do this prematurely I am just glad my doc was happy to wait it out (hes always super relaxed about it all).

Alex

Ian - I had almost no side effects beyond the first 2 to 3 weeks on Dasatinib (the first two being really hard and painfull).  Honestly I wish I would have had a better/sustained response on Dasatinib because, although I have gotten used to it, fasting before and after taking the Nilotinib does get in the way at times.  My jump before switch was like 0.32 to 1.2 if I remember correctly so switching was probably not a bad idea.  I may have still been fluctuating above 0.3 if I had not switched.  

I think reducing dasatinib dose can fend off pleural effusions but it is trial and error of course.  I have had no side effects at all on Nilotinib but do have to avoid eating two hours before and one hour after taking the medication.  Hope your numbers surprise you next month but if not then Nilotinib is worth a try.

Hi Ian,

Please do me the favor of updating your CML history on the LLS forum.  

https://communityview.lls.org/users/ian

Thanks in advance.  

Buzz

Hi Buzz,

I will update my CML history on the LLS site. To be honest I've avoided the LLS site a bit after someone told me I'd go to blast crisis after not reaching MMR in the first year. It didn't sit right with me after my multiple appointments with specialists. 

Ian

Thanks for the update Ian.  I can understand your upset.

Like others here, I'll be looking forward to seeing the results of your Feb. test.

Buzz

Blimey glad I never joined that site. Not only was the advice/comment completely stupid it was also completely wrong. For me this is the only support network outside of family and friends I need. I’ve seen many people in CCYR for many years without an issue at all. It’ll be the same for you and I am sure MMR is coming.

Al

Yeah, I'm an anxious person by nature and the comment definitely lead to more anxiety. In the site's defense there are many well-informed and incredibly helpful people that frequent the site. In the past they have provided advice that I greatly appreciate. I also like the CML history section that Buzz mentioned. For me, it just made me a little hesitant to post again. Anyways, as always I appreciate everyone's helpful and encouraging comments. Thank you again. 

You and me both mate. I eagerly await your next PCR test. Hang in there!

Hi All,

I thought I would update the group on my recent results. At 36 months I am at 0.11%. So a slight decrease from last test and roughly the lowest I've ever gotten but just continuing to bounce around between 0.1 to 0.3. Doctor wants me to continue on Sprycel 100mg as I have limited side effects. I sound like a broken record, but I was really hoping by 36 months to have lower values and start talking about lowering my dose. Oh well, not in the cards for everyone. Hopefully this experience helps others with less than stellar responses in the future. I'll keep updating you all and hopefully one of these days I'll be under 0.1%. 

Thank You,

Ian 

Well not the desired result but pretty much MMR. I hovered there for like a year then suddenly a decent drop. Still may go back to that. Can't say for sure obviously but as long as I am at a minimum in CCyR I don't really stress. Well I do for the 30 seconds before I look at the results but that is about all. At least you are still on Sprycel so that is good. Cycling through them with bad results is what we should probably keep an eye on more so.

Hi Ian,

Well as my doctor said to me when I hovered around 0.1 for a year "you're stable". He was never concerened I think it just takes us younger guys much longer to drop. I believe it will come for you. I have seen people on here that hovered around those numbers for many years and did eventually drop. It has no bearing on prognosis for the future. And as Colorado guy said as long as we stay CCYR which is the most important milestone then why care. MMR although nice to be in for piece of mind thats all it is statisically no different.

Alex

Hello, I am in a similar situation, I am a young man (23) diagnosed 10 months ago, who is responding slowly, I have read that young people respond slower perhaps because being young they do not go to the doctor frequently and only go when they have symptoms clear, in my case I had no symptoms, I had a normal spleen size, ¨only¨ I had 19K of WBC, sokal and low eutos .. and even so, response is quite slow, I have observed that older people respond better than younger ones and women somewhat better than men, at least initially, it makes me think that perhaps it may be because young men have larger livers than women, and in better shape than older people, which makes me function "better". the liver, maybe it works faster and therefore it takes less time to eliminate the tki which can translate into a lower concentration or for less time and therefore a slower response, I just wanted to express this thought about it, what do you think? Why do you think that the response of young people is usually slower initially? Regards.

Hello,

I’m also in the under 1%, no MMR, club. Limited sympathy for those going from TFR to MR4 posts. 
 

Diagnosed with a wicked WBC count of 675,000 July 2018. 
 

2 years of 100 mg dasatinib. BCR Stayed pretty stable at 0.3.

Mutation analysis showed no known mutations.

Four months of interferon in conjunction with dasatinib in an unsuccessful attempt to use natural immune function to lower numbers. Didn’t work but I lost 20lbs in 4 months.

1 year off meds to have a healthy baby. BCR stayed at 0.2 first 6 months, then got to 10% at end.

Two cml specialists agreed that no MMR on dasatinib wasn’t acceptable. Recommended trying Ponatinib instead.

Started ponatinib 30mg, after 3 months result 0.2, 7 mo result 0.2. 

One CML Specialist totally unsatisfied, giving me 3 months for a log drop or wants to pursue transplant. 

Ponatinib is the strongest drug, so not responding to that doesn’t jive with doc. 

Getting another second opinion soon, but thought I’d add my data to the slow responders group. 

I’ve been following post for years, post updates if you have them. 
 

 

Jill,

Was there any reason that you did not continue Dasatinib?  I never got below 0.1 on 100mg Dasatinib for the first 18 months.  I switched to Nilotinib and that seems to have helped me break the CCyR threshold and is slowly moving down (and sometimes staying the same).  I know of someone that is on Ponatinib for 8 years and never has broken 0.2.  He did have T315I which is why he is on Ponatinib (since trials).  Right off the bat I would ask the following:

1.) Why did you not restart Dasatinib? You can live just as long as anybody in MMR while in CCyR without the same hope for TFR.

2.) Are you taking your meds without fail and also Vitamin D

3.) Did you have a mutation test?  Ponatinib is almost always reserved for T315I mutation or non responsive CML. I would not categorize 0.3 as non-responsive.  

IMHO you are soooo far away from talk of a transplant based on the information you provided.  The latest NCCN guidelines categorizes CCyR as meeting target.  

I have never heard of as high of a WBC so congrats on getting it under control from the start. 

Hi Jill,

Congratulations on the baby! That is very exciting. Thanks for posting your information here for other slow responders. I agree with ColoradoGuy that there should be other options before transplant. I think it is good you are getting a second opinion. I've seen several posts from people on Ponatinib that haven't reached MMR, but their oncologist is comfortable with their stable response. Dropping from 10% to 0.2 % by 3 months and staying at 0.2% for 7 months doesn't seem like a bad response to me. I, myself, have actually been fluctuating now in that range for quite some time as you can see from my past posts. Recently dropping to 0.09% then back up to 0.18% (42 months), and my oncologist is not worried. Still hoping for more drops in the future, but I'm mentally comfortable with this plateau now. 

I think others know much more about this and I'm sure will post soon, but maybe it is possible Ponatinib just doesn't target the particular mutations and some other TKI could be more effective? I'm not sure Ponatinib is always the best option for every mutation. Hopefully others with more knowledge on the subject could weigh in on this. Congrats on the baby again!

Ian 

Hi Jill,

Any doctor who is recommending a transplant to you when you are CCyR is guilty of malpractice. Find a new doctor.

Patients who achieve CCyR have the same progression free survival (> 95%) as those who are MMR or 'undetected'.

In fact, the single most important indicator of success is whether cells are observed via florescence under the microscope. This is CCyR (i.e. no cells observed).

Personally, I don't understand why you were not re-started on low dose dasatinib following your pregnancy. You may actually have achieved a deeper response than 0.2% PCR. I'll explain below.

Given that you successfully carried a pregnancy to term and quickly returned to PCR < 1.0% tells me you are close to crossing over and getting into deep remission which may set you up for drug discontinuation down the road. The residual cells you have are likely a different clone not susceptible completely to TKI's, but also not expansive either. By lowering your dasatinib dose to 20 mg, your immune system in conjunction with dasatinib might very well shrink the remaining population of cells. This happened to me when I went from 70 mg (never 100 mg by the way) to 20 mg. When my dose was lowered to 20 mg. my CML PCR collapsed - and then I became "undetected" a year or so later and now I am free of any drug (TKI) for the last six months still "undetected" in TFR (treatment free remission). I believe you can get there too.

Your strategy might include using nutrition to create an unfavorable environment for CML which helps augment the performance of the drug (dasatinib).

1. Increase vitamin D3 supplementation so your blood D level is at least 70 ng/ml. At this dose (+/-), CML blast cells differentiate into daughter cells and die off. CML blast cells are the real problem in CML and when reduced to zero or near zero, gives time to experiment with dose overall.

2. Take vitamin K2 (200 mcg) per day.

3. Take 400 mg magnesium per day (avoid oxide formulations). Half before bed time.

4. Take 200 mcg selenium (very important)

5. If you like mushrooms, eat Shiitake type - as much as you can tolerate (I take mine in soup and sauteed with broccoli)

6. Eliminate sugar from your diet. Low carb is best, but if you like carbs, (and who doesn't!), keep it natural (no bag of chips).

7. Curcumin - 2-8 grams per day (as C3 complex with pepper). Curcumin alone is likely to cause your remaining CML to collapse. It interferes with the very pathways involved in CML growth by down-regulating them (nf-kB for one).

Doing the above will help confuse CML stem cells so they go into apoptosis. CML clones will die off due to "non-support" and the low dose dasatinib will be vigilant in attacking new CML stem cell division and any other CML cells trying to re-establish disease. Over time, CML can die out. Selenium is proven to interfere with CML stem cell expansion. So by hitting CML from all sides, your normal system takes over.

An important point - the fact you were able to go off drug for the pregnancy and remain in chronic phase informs you have time to experiment with dasatinib dose (i.e. 20 mg) and see what happens. Worse case, nothing or a slight rise. Best case, CML collapses below 0.1% Risk in trying is near zero. The lower the dose of dasatinib which works is best. Dasatinib also suppresses our natural immune system. So by lowering dose (which works), you are also improving the odds your own immune system will take up the fight against CML as well.

And then there is fasting - but that is really tough to do.

Hope this is useful to you.

 

1. Docs want MMR, both agreed should try another strongest med (ponatinib).

2. Vitamin D was crazy low at first, and I was taking 50,000 for a few years. I agree I need to get this checked again.

3. Mutation test showed no known mutations

Glad to hear about the Ponatinib patient that has been going strong for 8 years!

My doctor said my wbc was the highest they had any seen. The cough that wouldn’t go away, turned out my rbc were crowded out so I couldn’t get oxygen. Had Leukapheresis and about 8 transfusions. I’ve already got so much foreign blood and if I get a transplant I’ll be a true Frankenstein. 

I remember when you posted about your switch to nilotinib, I was so happy for your reduction. 

As I said I plan on talking to another specialist, here in Chicago, hoping she will agree to let me hang out in the under 1% club indefinitely (no transplant).

I’ll keep you posted as the year progresses.

Thank you for your response. I have been reading your replies for years. It’s so kind of you to respond to so many posts. 

I may have misspoke on CCyR, I thought that meant under 1% BCR, but I see it’s something else. Last fish analysis in 2019 showed 1.5% BCR/ABL. 

I will definitely start taking more vitamin d and look into some of the other supplements.

Based on your advice, I did intermittent fasting for about a year after diagnosis. Lost heart and motivation when I never got on MMR, but I agree I should begin again.  

The nurse at the pharmacy school asked about Curcumin, a way back, and they said that it would increase the potency of the tki

”Curcumin may increase levels of dasatinib through CYP3A4 inhibition

Based on recommendations for dasatinib + CYP3A4 inhibitors, it states to avoid strong inhibitors and if they cannot be avoided to decrease the dose of dasatinib (in this case, it would be recommended to decrease the daily dose from 100 mg to 20 mg). Since we do not know if curcumin is a strong or moderate CYP3A4 inhibitor, would recommend to avoid taking curcumin to avoid the risk of toxicities and unnecessary dose reductions that may adversely affect the patient's treatment.”

I am glad that the consensus here is so hopeful.

We need a name for our cohort, the 1%, ‘waiting for mmr’, ‘the young and the bcr disabled’, ‘breakpoint club’. 
 

'the young and the bcr disabled' was funny ..... I like that one.

CYP3A4 is known as the "grapefruit" effect in that many drugs are not metabolized well when grapefruit is in the diet. Grapefruit 'can' downregulate CYP3A4 as can Curucmin - But in Curcumin's case you would have to take a lot of it and then it only lasts a few hours.

Dasatinib is metabolized in less than 5 hours (half life). Taking dasatinib at night followed by Curcumin in the morning would more than separate the two. And even then, the effect is minimal. I have never had an issue or concern taking Curcumin (up to 8 grams back in the day) and dasatinib. I never worried about grapefruit either.

2019 FISH is too outdated. Do you know what your FISH level is currently?

I believe you are right about CCyR. 1.0 to 0.1% on international scale (IS).

I’m going to get on taking these supplements, and I’ll have to check on the half life of Ponatinib as well.  I’ll ask doc for another Fish at my next appointment in 3 months. We plan to check progress then.

It’s been a sad day, I thought this might be the drug that finally got be in remission.

Thank you for all the optimism and tangible suggestions.

Half life of Ponatinib is 24 hours (on average). More than 5 times longer than dasatinib.

I would have given dasatinib more time to work at lower dose. Just my opinion.

Hi everyone

Thank you for this thread. I learned more reading this thread than I have from other CML sources online. It’s so helpful. My wife was diagnosed with CML in May 2021. She is 29. She is on 400mg of imatinib.

At 3 months of treatment her wbc counts have stabilized/normalized to 4.1 (used to be 28). Her hemoglobin is too low now though. 

She had her first molecular test this week since starting imatinib. 

The results say log reduction 2.5 and international scale 0.33%. I assume that means her bcr/abl is 0.33? Our doctor didn’t explain the results… hence why I managed to find this forum. 

She doesn’t frequent CML forums or Google  about CML so I have taken it upon myself to get educated for our benefit since we need to understand her blood results. I read the Philadelphia Chromosome book recently to learn more about CML, so I hope it’s okay I am here. This is the only forum I could find that was easy to use and had helpful responses. 

 

thank you again for your posts and I wish you all the best of luck and health. 

Hi, and yes of course you are welcome here. This site and discussion forum is expressly for CML patients and their families/friends. It is understandable that your wife does not want to engage about her CML- I was exactly the same when first diagnosed and my partner did all the research etc. until I felt able to face it all. 

From her molecular result (PCR) it looks like she is responding very well (optimally) to imatinib - 5 months from diagnosis the result is really good at 0.33% (IS).

It is a shame her doctor did not explain this result, but that is often the case unfortunately. However, you have read the qPCR booklet and that's a great start in order to educate yourself about a complex disease like CML, TKI therapy; test results; qPCR; log reductions; International Scale; optimal responses; treatment timelines; clinical recommendations etc etc - there's a lot to learn, but this remains an ongoing process and some of us are still learning, even after 20 odd years!

Please continue to ask questions and use the patient expert knowledge that is generously shared by all on this forum. Meanwhile, enjoy that first PCR result, (and log reductions) it deserves celebrating.

Sandy

 

 

Her bcr-abl PCR percentage is 0.33%. This is an excellent result on imatinib after only six months. Any level below 1.0% is considered cytogenetic remission (CCyR). CCyR is the single most important metric in terms of progression free survival. At 0.33%, your wife is in a good place (over 95% survival rate - and the 5% who don't make it are usually very old and have other issues in addition to CML).

Her low hemoglobin is a sign that her "normal" blood is not fully returned yet. This takes time (many months). Her leukemic blood has been largely wiped out creating a "void" sort of speak. Her normal blood stem cells are ramping up to replenish her normal blood while imatinib keeps CML from coming back. In time her blood will normalize or get close to normal. She can help this process by taking B-vitamins and heme based iron supplements. Eating some red meat if she eats meat will help as well.

Once her bcr-abl percentage gets at or below 0.1%, she will be at major molecular remission. This is the next milestone. At or below 0.01%, PCR testing precision and accuracy decreases dramatically. Right now she is little over a log higher than that threshold and heading in a good direction.

Thank you for the responses. So insightful and helpful. Great explanation about the low hemoglobin. I see everyone’s CML journey is unique. Thank you again. 

Hi everyone,

Some good detail in this thread. I'm in a similar situation as others here.

Quite upset that I've likely failed a 2nd gen TKI after having fair results over the first 6 months.

I was told sensitivity is ±0.25 log, so I'm unfortunately beyond that with two consecutive tests showing an increase.

 

I'm a little surprised that the oncologist did not take any action after the 22/06 results.

I took an ignorance is bliss approach and didn't follow up until my next scheduled appointment in August.

I had a second BMB then, and will be back in 6 weeks to potentially change to Bosutinib.

 

Any others here with experience failing Dasatinib? Would a dosage increase to 140mg be the logical next choice before changing medications?

I left a message with my doctor on this option, which we had not discussed during my appointment.

 

30's Male - Dasatinib 100mg

DX 21/09

21/11 - 3 month - 2.4% (1.62 log reduction)

22/02 - 6 month - 0.4% (2.4 log reduction)

22/05 - 9 month - 0.7% (2.15 log reduction)

22/06 -Retested at 10.5 months - 1.0% (2.0 log reduction)

22/08 - 12 month - TBD

 

Yes I failed Dasatinib.  I don't recall numbers exactly but they went something like the following:

64%, 23% (three months), 1.9% (six months), 0.81% (9 months), 0.53% (12 month), 0.32% (15 month), 1.2% (18 month), Switch to 600mg Nilotinib with no other tests.  Five years a couple of days ago and most recent three results 0.017, 0.017, 0.015%.

I remember being very worried but then realized that there are others in the same situation and the vast majority of us slowly but surely get under 1.0% (which is the most important metric) and continue a slow, and sometimes bouncy trend further down.

You did not fail dasatinib. Dasatinib failed YOU. It's good you found a TKI which does work for you.

What a positive comment ! Just what I needed .  I have been feeling a real failure each time my consultant says she's " very disappointed" with my BCR ABL results , or indeed any of the regular bloods.  Somehow she makes it feel as it's my fault. I know there's nothing I can do about the results but it still leaves me feeling pretty low. Your comment really helps. Thanks.

Very good comment. Truth is we are all different and our paths (med/dose/rate of BCR decrease) will all be different but by and large, the vast majority of us will meet on the MMR side of things.

As I mentioned in my previous post I was at 0.3 on sprycel for around 2 years.  After 7 months of 30mg ponatinib was at 0.2  They increased the dose to 45mg and I finally achieved MMR at about a year 0.06%. Lowered to 30mg and 3 months later at 0.05%.  Next steps are to either lower to 15mg or try switching to bosutinib or something else as I have no appetite on ponatinib and have been losing weight.  Wanted to keep this thread up to date for the second-gen slow responders.

That's great news, Jill. Good luck with dialing in your dose.

Adding my own results on 100mg Dasatinib. Latest PCR was down surprisingly, but FISH showed around 2%. I'm a little unsure on the significance of this.

I'll likely be making a switch to Bosutinib.

3 month - 2.4% (log 1.62)

6 month - 0.41% (log 2.4)

9 month - 0.71% (log 2.15)

10.5 month - 1% (log 1.99)

12 month (via PCR) - 0.5% (log 2.33)

12 month (via FISH) - 2% (log 1.7)

That's great news, Jill. Good luck with dialing in your dose.

Adding my own results on 100mg Dasatinib. Latest PCR was down surprisingly, but FISH showed around 2%. I'm a little unsure on the significance of this.

I'll likely be making a switch to Bosutinib.

3 month - 2.4% (log 1.62)

6 month - 0.41% (log 2.4)

9 month - 0.71% (log 2.15)

10.5 month - 1% (log 1.99)

12 month (via PCR) - 0.5% (log 2.33)

12 month (via FISH) - 2% (log 1.7)

Taper11, your numbers are still relatively low, so request that you start on Bosulif/Bosutinib 200mg, and test, before moving up to 300mg.  If Bosutinib is effective, it will be effective at a low dosage against your low numbers.  

I thought I would update my results as others have done.

I was stuck at a ~2 log reduction for 8 months on Dasatinib. After switching to Bosutinib my results remained stagnant for another 4-5 months.

My most recent result is a 3.2 log reduction. I'm a bit baffled after enduring a year of subpar results, but pleased nonetheless to see an additional goose egg.

Dasatinib

3 month - 2.4% (log 1.62)
6 month - 0.41% (log 2.4)
9 month - 0.71% (log 2.15)
10.5 month - 1% (log 1.99)
12 month (via PCR) - 0.5% (log 2.33)
12 month (via FISH) - 2% (log 1.7)
13.5 month - 0.65% (log 2.19)

Change to Bosutinib @ 14 months

15 month - 0.4% (log 2.4)
18 month - 0.5% (log 2.3)
20 month - 0.06% (log 3.2)

Thats great to hear. I hit a few plateaus (most recent at about 0.020), but my latest result was 0.008. It just takes some of us longer, but take your meds as indicated and supplements and you will more than likely continue to see drops.