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Anaemia from Imatinib for an athlete

Hi everyone, first post here :)

Does anyone have any information or tips on how to combat the anaemia caused by taking Imatinib? I'm on 400mg/day.

I'm an athlete (runner) and I've never really looked at my blood results before until the other day when I noticed that my HB was 13.1 and Hematocrit was 38. I realise that for a lot of people those figures are perfectly fine and others suffer with it more than that, but for me it's really frustrating as my running means everything to me and for an athlete those figures are terrible and they are holding me back from what I can really do. I'm always tired but I put it down to the volume of training we do (up to 13 times a week, 80-100 miles), but for some reason I decided to look at my blood results last week and noticed the low figures.

So...... this is where it gets a bit complicated as from what I can gather from my own research it is not an iron deficiency anemia and so the usual trick of supplementing with ferrous sulphate/ascorbic acid won't help (my ferritin level was fine ~88, which shows no iron storage problems), similarly eating iron rich foods would have no effect. My MCV value was within range and towards the high end (95.3) so I guess no B12/Folate deficiency either? So it must just come down to the imatinib suppressing the production of red blood cells - but is there anything that can be done to fix that? I don't think I'm low enough to need something like EPO but there has got to be a way to combat this?

I've been PCR 0.000% for years and so I do know how lucky I am to be in the position I am in, and if there is no way to combat the low red count then I will have to accept that, but I want to exhaust every avenue before then.

Thanks :)

Hi,
Firstly, congratulations on your pretty spectacular molecular response- I am assuming you are in the UK and your PCR's are done at a specialist lab?

From reading the very focussed research you have already done into other possible causes I must agree with your conclusion that it is imatinib that is the cause of your 'anaemia'/ through its effect on the red cell population- HGB levels do vary and yours might be envied by some, however as you say this is relative to the individual and their lifestyle. Your career as an athlete obviously is very demanding and in that context, as an athlete your HGB is not good enough. Nevertheless, imatinib does make most people very tired because it is known to suppress red cells which over the longer term can and does have an accumulative negative effect on quality of life for some people.

Apart from all the usual things that can be done to increase your HGB- and you have mentioned most if not all of them- the only option I can see is that you talk to your doctor about the fact that your quality of life is not what it should be.
You are living with what a lot of clinicians would consider a Grade 1 side effect and therefore tolerable and a small price to pay to combat a life threatening disease.

However, there other clinicians who consider that Grade 1 and 11 side effects, as suffered over the longer term, significantly affect quality of life and should not be ignored. There are choices out there and we should be more proactive in finding ways to combat such long term if low level negative effects.

In your case, with your very low and stable level of residual disease (0.000% for some years?) your doctor might consider either:

a. changing your TKI, as side effects can and do differ between them,
or
b. enrolling you in either a stopping trial, or if you are in the UK the DESTINY trial which de-escalates your dose to half (200mg) for 12 months, and if you hold a good molecular response at a reduced dose, stop altogether to see if you can achieve TFR.

If you do not like the idea of a stopping trial, it might also be worth considering a dose reduction (with close monitoring by PCR of course) for a short period to see if this solves the problem of red cell suppression...it might be a way forward for you.

I hope this is helpful, there is no doubt that long term TKI therapy can and does have an effect on quality of life, and whilst it is great that most CML patients manage to live normal lives we cannot just stop there and accept our lot and be grateful. There are choices out there- 5 TKIs, and for those with optimal responses the chance to try de-escalation and/or stopping and living in treatment free remission. TFR is a fairly new concept and is a direct consequence of the stopping trials, but one that may well become a reality for more of us in future.

Sandy

Hi Sandy - thanks for taking the time for such a detailed response.

Yes I'm under Prof Clark at Liverpool. I was diagnosed 10 years ago yesterday (!) and have been in molecular remission for almost all of that time. I can't remember exactly when I achieve 0.00% but it was pretty much straight away from what I can remember, all from 400mg imatinib which I've been on ever since. That was in the days before they could measure to 3 decimal places, but when they could it was 0.000% on that first result as well. I've been extremely lucky and well looked after by Prof Clark and his team.

Funnily enough not long after I posted this message I was contacted by the staff at the Royal after the Prof had given his opinion on my problem. In a nutshell, as suspected there is nothing that supplementation can do. Similarly the Prof would not consider something like EPO due to the worry of stimulating the bone marrow and the resulting effect on the CML - I wouldn't be allowed to take that and compete anyway I suppose.

So he's invited me in to talk about the DESTINY trial. There was no mention of switching to another TKI, although to be honest I'm reluctant to do that anyway seeing as how well I've done on imatinib and there being no guarantee that a switch would fix anything (and not present more, or worse side effects). There will be two options for me, to do it as part of the trial, or as you have said, outside of the trial as a monitored dose reduction to 200mg/day with monthly PCR tests.

If I was single and only looking out for myself then I would do it tomorrow, but with a young family there are a lot of other considerations I have to make before deciding. I know what their view will be, but I guess we have to sit down and talk it out. Hopefully going in to speak to Prof Clark will address a lot of the issues they may have.

Thanks again for taking the time.
Best regards,
Gareth

Hi Gareth,

It must be very reassuring to have had such a brilliant molecular response to IM from the beginning. I do know there are others with similar stories who might also join DESTINY. I agree it is not an easy decision, but I feel it is a pretty safe option given that you are treated by Prof. Clark and the team at L/pool- who are excellent I agree. Please update us here as and when you make your decision.

Best wishes,
Sandy

Thanks Sandy - I think the fact that I would only go to 200mg a day for 12 months is particularly appealing. With frequent PCR tests it seems very low risk but the benfits could be great.

Hopefully I will have a decision soon and can get in to speak to Prof Clark about where to go from here.

Hi Gaz - cannot help on the issue

but saying hello from another runner (although not very fast), took up running a few years ago and now try and go for a run every few days (not always possible) about 10 k at a time

I do it to try and keep fit (44 years old DX 7+ years ago) and stay healthy rather than races or some such

Always wondered if there was a club for runners with cancer/leukaemia

anyways I am on garmin connect, strava and endomondo as robmargel

rob

Hi Gazowell,

I read your post of few years ago: I'm on the same page, because I like to do trail running on the Alps, but I was found positive to CML and am fighting to combine the two things. I started Imatinib 400 mg in May 2017 and this year I've been running 45 km D+ 2800 m on the mountains. Not so fast, but I crossed the finish line.

did you find any method to increase hemoglobine levels?

thx

Hi Gaz. Just realised this original post is some years ago. Can you update me - I reduced to 200mg a year ago. Thanks