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Encouragement for turtles

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Good morning everyone

This is just a message to encourage those who, like me, are / were really slow to respond to the TKIs and are worried about their slow progress.

I was diagnosed in 2015 with high risk CML based on every possible score - enormous spleen, 11% blasts - borderline accelerated phase.  After starting on dasatinib, it took me 24 months to creep over the line to MMR and I missed all the targets along the way: I was in "warning" or "suboptimal response" at every time period.  

After finally reaching MMR, I developed lymph node swelling on dasatinib and had to change "downwards" to imatinib in 2018.  Since then I have had a slow downward trend with a few scary upswings in BCR-Abl - 0.03, 0.08, 0.03, 0.01, 0.008, 0.011, 0.018, 0.004, 0.013 and finally, in the most recent test, have reached MR 4.5 at 0.003% (at 71 months of TKI treatment).  I'm still on 400mg imatinib, and my doctor is not keen to reduce the dosage given the high risk.  

I have actively tried to increase my Vitamin D uptake thanks to scuba's advice and am maintaining a level of around 80-90 for Vitamin D, with 40 minutes in the sun each day (easy if you live in Africa) and daily supplements.  It really seems to have helped.

I wish everyone here on the forum all of the best - I cannot describe how much this forum has helped me.  Just knowing that we are not alone means so much, and I am so grateful for the advice I have been given and for the friends I've made here.  Even turtles can cross the finish line!

Best wishes from South Africa

Martin

 

Hi Martin

Really assuring story and congrats on the successful treatment! I am somewhat slow as well and almost a year into treatment. I just wanted to ask if dose reduction will ever be on the table for you or does your consultant consider you as high risk indefinitely?

 

Timo

Hi Timo

Thanks for the kind words!  I'm sorry you are also a little slow, and I know the extra stress and worry that this causes.  I hope that you will start seeing a downward trend soon - for me, I got stuck at several plateaus during my treatment and then, quite suddenly, experienced a big drop to another plateau. 

Although dose reduction isn't on the cards right now, the evidence seems to show that the longer one is treated with a TKI, the more successful a stop attempt would be.  We discussed the possibility of this and my doctor hasn't ruled it out, but she wants me to maintain this low level of BCR-Abl for at least three years before considering it.  This is given that I have very few side effects and given that I was high risk.  So for now the plan seems to be to stay on 400mg until 2025 at the earliest and then considering a stop trial.

Good luck with your continued treatment - I am sure you will get lower.  These TKIs are amazing.

All the best!

Martin

Good to hear that it is on the table and I believe in the future more and more people should eligible for TFR or at least dose reduction.

My 9 month result was 1% BCR-ABL and next week will have my 11 month test. Fingers crossed.

 

Timo

Dear Martin,

Thank you so much for your post and your encouragement for those who are slower to respond to TKI therapy. Like you, I was diagnosed in late chronic phase with a massive spleen, low Hgb and consequently a high Sokal score (even though my white cell count was only just outside 'normal range' at 17). By the time I was eventually treated with imatinib (clinical trial) I was certainly in accelerated phase and it was not at all clear that I would respond well enough to 400mg. After 3 months it was clear that I needed a higher dose and thanks to the clinician leading the trial, it was agreed that my dose be increased to 600mg even though this was outside the trial protocol. I was fortunate and did respond, if slowly. After what seems like a very long time (probably 12 months) my PCR result was as low as 0.5% which, given my initial prognosis, seemed like a miracle. My treatment then became a little more complex given an imatinib resistant mutation was identified and other TKIs were not available at that time, but I am in no doubt that imatinib got me back to a second chronic phase, from which my clinicians were able to 'get creative' in order to ensure my survival. I remain deeply grateful for their expertise and willingness to think 'creatively' so to speak.

Thanks again for sharing your encouraging story, I am sure it will help many who through no fault of their own, find themselves asking for advice and support on this forum. Patient to patient support is the raison d'être of the CML Support Group. 

Best wishes and congratulations on finally reaching MR 4.5

Sandy

 

 

 

Great news, Martin !

I do believe there is a story where a turtle wins the race! I like turtles.

A key phrase in your comments is "...were at high risk". You are not at high risk any more. That was the past.

CML is a population/clonal disease. Like rats, fleas and roaches, if I may make an analogy, CML gets out of control if you let it. How you treat and have success with an infestation is different than when the infestation is brought under control and maintenance is left. I know. I have dogs and until I knew better, I had to deal with infestations of fleas often. But now, I no longer do because I broke the cycle (by understanding the cycle).

CML is like that. At diagnosis, your CML was out of control and difficult to get under control (Sandy and my situation were similar in that regard). But once you brought CML below 0.1% and now you are below 0.01%, your situation is no longer "high risk". You have attacked the core problem over time and CML is now a shadow of itself in your body. And at the same time you did other things (vitamin D) to enhance your own bodies immune defense mechanisms.

You are a candidate for dose reduction now - although I would consider low dose dasatnib (20 mg) over imatinib.

Once you become 'undetected', then you can start a 3-4 year clock to test treatment free remission.

Regardless, you are in a good place.

Martin - Thank you for sharing.  This is certainly encouraging for those of us with less than optimal responses.  I too switched from Dasatinib when I got a result from 0.32 to 1.2 although I now think it may have been a glitch because it is the only result that doesn't fit my trend and I did not do a retest to confirm.

0.81% (18 months), 0.53%, 1.2% (Switch to Nilotinib), 0.34%, 0.12%, 0.16%, 0.084%, 0.13%, 0.043%, 0.054%, 0.015%, 0.045%

As you can see it is stubborn but on a slow downward trajectory with bounces as well.  I was also probably high risk as I had a couple other anomalies like an extra Ph+, a deletion on chromosome 9, a low level bcr-able p190 (in addition to p210), large spleen, and a WBC of 258.

I recently had a test to confirm the p190 is no longer there and it is not.

I spent a lot of time worrying because I was told by a couple of people that I was in trouble (one a doctor, and one on a different forum) but then realized that there are others that go on a downward trend slowly.  I am thankful for my friends and families prayers and for other resources such as this forum which has been a great source of information for putting things in the proper context and learning other ways to fight this (vitamins/etc.).

Congrats to you and I hope you get to ND.

Congratulations and thank you for posting.  This is very inspiring.  

Hi Timo

Sorry for the late reply - in between power outages and some crazy times at work, I haven't been back to visit the site.  I agree with you that more and more people will become eligible for TFR so we should never rule it out!  

I hope your 11 month test is good and shows a significant downward movement.  Also crossing fingers - please let us know!

Best wishes

Martin

Hi Sandy and scuba

Thank you so very much for your responses to my post and for the encouragement and kind wishes.  Sandy, your story helped me such a lot when I was first diagnosed, and it's amazing that your doctors were able to think out of the box so creatively and help you in your recovery.  It serves as a reminder of how much has changed since imatinib was discovered, and what a game changer it actually is - if I remember correctly, one of the newer TKIs would have been active against the mutation you developed?  Your story also brings hope that apparently insurmountable obstacles can be overcome.  I'm sure that as time goes by doctors will have better and better techniques and drugs to enable more of us to overcome slow progress and reach TFR.

I am so grateful for your constant posts about Vitamin D, scuba, as I have been following everything you have said.  I take the curcumin and selenium too, and I am 100% convinced that these three supplements have helped me over the line.  Your analogy about roaches was really interesting to me, because I realise I may be thinking about CML in the wrong way.  I thought that "high risk" means that my disease shows aggressive features and has some kind of biological tendency to spread more quickly.  But your explanation makes a lot of sense to me - the infestation is gone and there are few of those pests left.  I would love to go onto 20mg Sprycel and will raise it with the doctor next time - I definitely felt better and had more energy on 100mg Sprycel.  But I'm not holding my breath, since the doctor is concerned that I may develop lymphoma on Sprycel given that it caused lymph node swelling.  I'll keep everyone updated!

Thank you again.

Best wishes

Martin

Hi ColoradoGuy

Thank you for your message - I'm glad my story has been of some use.  These bounces really cause us to feel worried and anxious, but it looks like you are on an overall downward trend and are also well controlled. 0.045% is a good place to be!  In my experience there was a lot of bouncing and then a sudden large drop, followed by more bounces.  I'm sure you will reach much lower as time goes by.

Hopefully you also reach MR4 and ND in time.

Best wishes

Martin

 

Thank you Tater1 - all the best for your recovery too!

Sorry - I've seen that all my messages are now collected at the bottom and not replies to individual responses! 

Have a great week everyone.

Martin