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Looking to reduce dosage of Imatinib 600mg to 400mg

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Hi all,

I joined the CML club in early 2014, age 28, and after 5 years on Imatinib 600mg I would like to try to reduce my dose to 400mg.

At diagnosis I had the following in my CBC:

Leucocytes: ~422.620
Blasts: 4%

Other symptoms included: Splenomegaly, weight loss, night sweats and lack of sleep.

I started on Hydroxyurea, then, in two weeks I began taking  400mg Imatinib. Unfortunately, after a month my CBC showed my Leucocytes got up again (51.420) after reaching normal levels. This had my haematologist increase imatinib dosage to 600mg. From then on PCR has been used to track BCR-ABL levels.

Here is the history of my PCR tests:

  • 1,03 - October 2014
  • 0,63 - February 2015
  • 0,07 - February 2016
  • 0,02 - May 2016
  • 0,089 - April 2017
  • 0,0132 - October 2017
  • 0,02 - April 2018
  • 0,0091 - July 2018
  • Lower than the detection limit - January 2019
  • Lower than the detection limit - May 2019

*The detection limit of the last two tests is 10 copies of BCR-ABL in 100,000 cells.

Why am I considering a lower Imatinib dosage? This year, our national health care system had a shortage of Imatinib and I had to buy it on my own for a period of two months. Because I was already curious about dose reduction I decided to buy only two boxes of 400mg in order to see if that would have any significant impact in my BCR-ABL levels. After these two months of dose reduction, my last PCR test came with “Lower than the detection limit”., as mentioned in my PCR list.

Finally, my question is: Has anyone here with a similar CML background reduce the dosage of Imatinib and had success with it? Could 600mg be an over-treatment at this point of my CML history?

I also would like to mention that I have no side-effects from Imatinib. I used to have nausea but this hasn't happen after I made improvements in my life-style and diet. Maybe I could mention these improvements in another post If anyone is interested.

Many thanks in advance! This forum is very helpful, specially because it is open, easy to navigate and has amazing CML stories.

Israel - You are doing very well. 400 mg is the standard starting dose and after your 600 mg dose to get control of CML, 400 mg is certainly sufficient.

More importantly - in my opinion, your story details how CML can get burned out. It is very likely you have exhausted CML stem cells and now have a high degree of control over the disease. You could even consider reducing dose to 200 mg imatinib as a maintenance dose. As you don't experience side effects you can feel (and Imatinib has a long history relative to other TKI's), even staying on 400 mg is not an issue.

I can envision a treatment free future for you. Keep "undetected" for two-three years and you could stop imatinib completely.

As I often say, CML is not going to kill you. It is history.

Hi!
Congratulations on the good result!

May I ask what your results were between February 2015 and February 2016 (if any)?

Reason I ask is that that’s about where I am now timewise. My PCR BCR-ABL history:

Jan 2018 (dx): 114%, start Imatinib 400mg
Apr 2018: 12.7%
Jul 2018: 1.3%
Oct 2018: 0.19%
Jan 2019: 0.47%, increase Imatinib to 600mg
Apr 2019: 0.13%
Jun 2019: 0.32%

It’s been 18 months and it seems I’m stuck just above MMR even with high dose Imatinib. So doc made another bone marrow biopsy now to check for any remaining CML-cells or any mutation. Depending on results they say they may switch me over to dasatinib or nilotinib. Test is to see which one. Or I may also remain on Imatinib 600 for another 6 months if tests show nothing. 

So I’m curious if you (or anyone else) have ended up with such good results on Imatinib eventhough they seemed to ”plateau” between year 1 and 2. 

Hi, Israel! Are you brazilian? If you are, i have some thoughts about your treatment. First of all, you're doing very well. Second: there aren't many good labs for pcr tests in brazil. I'm working with the brazilian L&L Association (Abrale) trying to pressure the Health Regulatory Agency to establish some regulations/standards about pcr tests (some labs simply don't analyse as much samples of the control genes as necessary to report a deep response. many patients were showing undetectable results within 3-6 months from diagnosis, and, then, when they changed to another lab, the result was much higher). I'm not saying that your results are not that good, but to take care with some labs.

So, if you're going for a dose reduction here in brazil, you must look for a reliable lab and have a monthly test for the first 6 months and always keep in touch with your doctor. good luck!

Hey Lucas!

Yes, I’m Brazilian! I live in Florianópolis, where I have been under treatment since my CML diagnosis.

I know of Abrale and think this organisation does an amazing job of raising awareness about CML in our country. Really glad you are in touch with them.

Regarding my PCR tests, not all of them were sent to the same lab, but some did go to a lab which my haematologist felt comfortable with. The name of this lab is Insitus Genética, located in São Paulo, and the results they have provided are the following:

 

BRC-ABL: 1,03%           Number of BRC Transcripts Don't have the numbers      Date: October 2014

BRC-ABL: 0,0132%       Number of BRC Transcripts 28.606,00                            Date: October 2017

BRC-ABL: 0,0091%       Number of BRC Transcripts 73.278,00                            Date: July 2018

 

This labs says it uses real time PCR (Q-PCR) with TAQMAN Probe.

The other lab I started sending my samples to, which is the one that came with “Lower than the detection limit”, is called DASA. Here is the information I have regarding my last two results on this lab:

 

BRC-ABL: Inferior than the detection limit      Number of ABL Transcripts: 18.588,02     Date: January 2019

BRC-ABL: Inferior than the detection limit      Number of ABL Transcripts: 28.341,54     Date: May 2019

 

DASA lab says it uses QuantiStudio 12K for PCR testing with the BCR-ABL kit from Qiagen. The link to the Qiagen kit shows that the kit's sensitivity has a limit of detection (LOD) of 0.0069. 

My haematologist said that our local hospital would have their own PCR equipment this year (2019). I looked for the information regarding the equipment and was only able to find out about Xpert® BCR-ABL Ultra Kit, which claims to have a LOD as low as Log 4.5.

Do you recommend any labs I can send samples to? 

Going for dose reduction is not an urgency for me, but if the possibility is there I would like to try. Like I mentioned in my initial post, our healthcare system wasn't able to provide us with Imatinib so I was with the option of either reducing the dose to 400mg or nothing at all. The take away from this event was that I was encouraged to try a new approach to managing my disease. I will mention this "episode" to my haematologist and will work on future possibilities, even though dose reduction and TFR don't seem main-stream here.

Best regards,

 

Hi Scuba!

Thank you for the information and the words of encouragement.

I have been researching about possibilities to reduce my Imatinib dose for some time. This forum has been very, very helpful on this matter. Treatment free is also something that interests me, and every time I read stories of people trying it, succeeding or not, I get very motivated.

I’m not in an immediate rush for a dose reduction, but I do want to go that direction if the possibility is there. My primary goal is to live a healthy life and do whatever I can to get my PCR tests as low as it can go. Honestly, taking the pills is the easy part, the hard part is to deal with the whole bureaucracy to get them.

At the moment I’m back on Imatinib 600mg, just to be on the safe side. My plan is to have a few more PCR tests and depending on the results I will try to reduce my dose to 400mg.

Thanks, really like reading your posts.

Hi Poppert!

I didn’t have any PCR tests in between February 2015 and February 2016. My national healthcare system isn’t able to provide the optimal PCR test frequency, so big gaps between tests can happen, unless you go for private labs (which is something I have recently started doing).

If you check my PCR trend you’ll notice it took me two years to go below the 0.1% mark.  I was neither happy nor sad about it because I wasn’t aware of optimal response timelines at the time. When I did start researching more about optimal responses I thought I was going too slow, I freaked out a  bit, but my haematologist said switching to a different TKI wasn’t necessary because the PCR trend was still going down.

That being said, I would be curious to know what your PCR trend will be in the long run. But if you have to switch to a new TKI, embrace it. After all, in a lot of cases, second generation TKIs seem to render better responses. Maybe your body will be able to absorb the new TKI better than it absorbs Imatinib.

I stuck with Imatinib because of its cost-beneffit. Even though I get it from our national healthcare system, in case I need to buy it I can,. Imatinib is much cheaper in comparison to the other options. Still expensive though…

Hope this information helps you.

Best regards.

Hi all,

I want to give an update on my treatment since I last opened this thread.

In July, I started to take a reduced dose of Imatinib every other day, alternating between 600mg today and 400mg tomorrow. The whole month under this plan, I never missed a dose and was very consistent with the time I took the pills.  My latest PCR result performed last week (August), is <0,003% or >4,5 Log.

I intend to continue with this dosing plan until my next PCR, which due in three months, and if the result remains the same, I'm going to reduce the 600mg day to 500mg. These are baby steps towards a dose of 400mg a day or possibly lower. 

Apart from being consistent with taking the pills, I also would like to point out that I have been consistent with diet, exercise, and having a positive attitude in general. Without going into too many details, here are a few things I do that might be of your interest (I understand these are subjective):

* Focusing on digestion as the parameter for good health
* Be outside as much as possible (sun, rain, storm)
* Intense exercise
* Positive visualizations

I hope this information is useful to the community.

Best,

Hi,

Quick update on my dose reduction journey. I had two more PCR tests since I last posted to this thread:

 

- November: 0,0073

- January: <0,00025

 

The tests weren't performed by the same lab, though these labs are the ones I have been sending samples to for some time already. So, after the January test I started alternating between Imatinib 400mg and 500mg every other day.

Interestingly, this time around my other tests indicated high TGO - 87 (Reference values are 10-40) and upper range glucose (99).

Best.

1.03N/AN/AN/A20150.063N/AN/AN/A20160.070.02N/AN/A20170.0890.0132N/AN/A20180.020.0091N/AN/A20190.00.00.00.020200.000250.0120.00820.00420210.011   

* N/A = Not available

  Imatinib 600mg  Imatinib 600mg / 400mg every other day   Imatinib 500mg  Imatinib 400mg

__________________________________________________________________________

Hello everyone,

I am updating this topic with my latest PCR results, in case someone is experiencing a similar scenario. At the end of 2020, I reduced my dose of Imatinib to 400 mg and the last 2 PCR results returned 0.004 and 0.011.

I understand that some of you like to see a history of PCR tests alongside the dose used, so I tried to include this in the table above (hopefully the format is right). It will also help me for future reference.

EDIT: Table format doesn't seem to work so I included my results below:

* 2014: 1.03
* 2015: 0.063
* 2016: 0.07
* 2017: 0.089  |  0.0132
* 2018; 0.02  |  0.0091
* 2019: 0.0  |  0.0  |  0.0  |  0.0073 (600mg / 400mg every other day)
* 2020: 0.00025 (600mg / 400mg every other day)  |  0.012 (500mg)  | 0.0082 (500mg)  |  0.004 (400mg)
* 2021: 0.011 (400mg)