Newly diagnosed - Endurance athlete

[Devjon]

Hello,
I was diagnosed with MDS on Wednesday, it certainly came as a shock and I am not sure what to expect.
In some respects it was a relief to get a diagnosis as not knowing what was going on was very frustrating.
I have been a runner for more than 30 years and over that time have got to know my body and my mind extremely well. I have in some events pushed myself to my limits of physical and mental endurance, and misjudged my limits on a few occasions This experience has been helpful in that I knew that the fatigue that I was feeling was qualitatively different.

I had noted and accepted the gradual deterioration in athletic ability that comes with age and adapted my training regime to suit.
It was in April of last year during the build up to a race in South Africa that I got ill with a cold / flu type virus. This stayed with me for about two weeks. I am sensible enough to have rested completely and did not try to resume training until I was sure that the infection had cleared up. When I tried to resume training I experienced extreme fatigue after running about five miles ( my previous pre flu type bug long training runs had been about 30 miles ) . I rested again and tried again but I was unable to get beyond 7 or 8 miles without being wiped out. This leads me to wonder if the MDS could have been triggered by the infection ?

I had colonoscopy / gastroscopy which showed negative for coeliac disease and showed no malignancies which was reassuring. It was also frustrating in that it was now April of this year and I was no further forward with a diagnosis and starting to question if there might be a psychological aspect to my symptoms. I thought that I could rule out malabsorption / bioavailability issues by adopting a strict Gluten free/ Soya free / Vegan diet whilst taking an Iron tonic ( Floravital ) and sublingual MethylCobalamin. I am a lifelong vegetarian so this was not too much of a stretch.
After 6 months of this regime I was feeling healthier and not as fatigued,( possibly due to weight loss due to the diet ) , but still had no endurance. It was at this stage that I was referred to the Haematology team who took a bone marrow biopsy and at last I know what the cause is.

When I got home from the Hospital with my diagnosis the first thing I did was enter next years Bournemouth Marathon, now I just need to work out a training strategy

Sorry if this post is overlong, just needed to put things down in words, and I suppose the valid question is could my MDS have been triggered by my infection?

Best wishes to you all,

Devjon

[Russell]

Hi Devjon,
I can just about remember my own thoughts on first diagnosis - why me? I've never been a runner but I have a background of competitive rowing and rugby, always careful about what I ate, so, like you, I wanted to know the cause. But the simple answer, I understand, is that most of us will never know. There's some good info on here, and Sophie Wintrich is a great help - do speak to her. And don't over do it - listen to your consultant.

Russell

[Devjon]

Many thanks for your response Russell,

I expect that it will take me a little while to think things through. I have a cheerful disposition and am fortunate in that the many years of long distance running have helped me to develop a mindful and accepting outlook on life.
I see from your Sig that you competed in this years London Marathon, I would be interested to hear how it went, and your training regime leading up to it.

Thanks again,

Devjon

[chris]

Dear Devjon

Welcome to the Forum.

Think it's more likely that you had had MDS for a while and the infection was as a result of having MDS rather than a trigger - especially if your white cells are affected? Also, haemoglobin tends to go down after an infection so that would not have been helpful to your endurance levels.

If you have not already been in contact with Sophie, please do so as she can send information about MDS.

Apart from people who get secondary MDS following previous chemotherapy for other cancers, causes for primary MDS are pretty much unknown other than smoking and exposure to benzene being risk factors... and of course, age - though I guess you are still below the normal age of 70+ for getting this disease - as are many of us on this Forum?

Not sure where you are receving your care but hopefully you will have had your full bone marrow biopsy results and an indication of your risk status by now - all very important in determining when and if you receive any treatment? Russell is in quite a different situation, having had a stem cell transplant and returned to normal levels of blood cells!!! Good on you for planning a marathon but, as Russell says, take medical advice on what you should be attempting and be prepared to pare back activity if the disease progresses. Unfortunately, no amount of mind over matter or positive attitude can do the work of those little red blood cells in getting the oxygen around and this is where you might need to rely on your accepting outlook on life to come to terms with these unwanted limititations!

Not sure where you live but there may be a Regional Support meeting somewhere near you. Check this website for details.

Hope all goes well

Chris

[Devjon]

Hello Chris,
Thanks for the prompt response, I feel a bit daft in not considering the infection might have been as a result of the MDS, especially as I would always come down with cold sores in the week after running a 100K for example, ( anything shorter was usually ok)
I am still awaiting the full results of my biopsy as the specialist said that the sample was poor quality but the lab thought that they could do something with it, but if not they would take another sample. I had my bloods taken after seeing the consultant and they mentioned tissue typing, but to be honest although I understood all the words and was nodding in all the right places I did not really take it in. I suppose that until I get the full results then I am in Limbo so to speak.
They did say I was young ( I am 64) and very fit ( I used to run Ultras up to early last year ) and I have several siblings who might be suitable donors if it comes to that.
I live in Poole, I will check to see if there is a support group nearby.

Thanks again for the response, especially for pointing out it is likely that I have had MDS for quite a while, I shall use it whenever any of my friends mentions having beaten me in a race

Devjon

[chris]

Dear Devjon

If you live in Poole, if I were you I would seriously consider asking if you can have your MDS care done at Bournemouth under Dr Sally Killick - if you are not there already? She is one of the UK top specialists in MDS and indeed led a working group to complete the recently published revised UK guidelines on MDS and treatments so she really knows what she is talking about!!!
It is planned to start up a patient support group in Bournemouth so please contact Sophie for details and keep checking the meeting dates on the Events tab on this site.

Tissue typing is what they do to see if you have a match among your siblings. They take a sample from you and a sample from each of them. Each sibling is a 1 in 4 chance of being a match I think. Fingers crossed - though these days they are saying that a well-matched unrelated donor is just as good.

Yeah, hold your horses with Dr Google until all the results are in as it really does make a difference to prognosis and treatment options and if you have to have a repeated bone marrow biopsy it will be worth the pain to ensure a good sample and subsequent clearer results.

Glad you now have an excuse for previous poor performances.....but just think of the superiority and extra cred you will get if you beat a friend who hasn't got MDS !!!!

Best wishes

Chris (also young in your definition by 1 year less, ha ha! Used to be quite sporty but not in your league - now just trying to keep moderately active with walking and gardening as enlarged spleen and potential damage risk rules out too much leaping around!!)

[Devjon]

Update-
I had a second bone marrow biopsy as the first was not of sufficient quality. I saw the specialist last week and the good news is that I am in the low risk group. I requested a transfer to Bournemouth as it is a centre of excellence and I am waiting for Bournemouth Hospital to get in touch.

[chris]

Hi there.

Great news - both about your results and your transfer to Bournemouth. Hope this means you can put a stem cell transplant on the back burner but don't worry if they still go ahead with tissue typing. This is often done with MDS patients - even those at low risk -just so that they know whether a donor is available should push come to shove!

There may also be some other treatments which could improve your haemoglobin - depending on what type of MDS you have. Do ask about this and your chromosome results and full bone marrow biopsy report when you get your appointment at Bournemouth.

Kind regards

Chris