Hi All, My names Terry 41 years of age and i was diagnosed with ALL March 2020, i had over 45 rounds of chemo, 5 days of TBI and fortunate to find a 100% donor who saved my life, now 2 years and 5 months post BMT, and doing well, only issue i'm finding is I'm still unable to get my fitness back as every time i start, i pick up little injuries and it still effects my fatigue, i have prioritise rest & sleep. i'm unable to push my self in all physical aspect of my life, its frustrating, as before my diagnoses i was running, playing football, and going to the gym I think what maybe holding me back is the site where i had Multiple Bone marrow Aspiration is very sore and today i had a sharp pain after walking which shot straight down to my calf... has anyone else experienced nerve damage?
Hi Tezza10 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups….. I am flagging in my friend Paul1969 as he has had a similar journey as yourself….. although I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so I have had a lot of treatment including 2 Allo (donor) SCTs June 2014 then Oct 2015.
Recovery can take far longer then you would want or even hope. It took me a good 2 years post my second Allo to get back to anything like my pre SCT fitness but even now, over 7 years out I still have to work at keeping fit….. but I am doing as good as any other 67 year old.
I have not had problems with my BMB sites but have lots of other post SCT ‘left overs’ as I call them….. and one is long term nerve damage mainly in my neck.
We do actually have a dedicated Stem cell transplant support group and you may find this link helpful Life after a SCT - A Survivor's Guide
Hi Tezza10 Terry
I had a 9/10 mismatched allo stem cell transplant in May 2013 following a diagnosis of ALL in Sept 2012 aged 42. During that time I too had a lot of treatment including 15 bone marrow aspirates. I agree with Mike in that it takes 2 years plus to begin to get over the treatment. I still wake up some mornings and ache like I have had a marathon gym session which I haven't done and have a lack of energy. I also need more sleep now as well.
Yes the areas on the back of the pelvis remain tender. Mine don't really trouble me know but if it I push them with my fingers they are still tender and sensitive.
Are there things that my body stops me doing.. not really. I walk the dogs, go sailing, play golf regularly, work full time etc. Do I play high energy sports like football etc. No I don't, but I am 53 now! You have to give your body time to recover and perhaps accept the fact that life will become a bit slower and there are days when you feel sluggish but over time you get used to it and just push yourself through it and get on with things.
I have heard people say that going through the treatment is like surviving a nuclear war and aging your body 10 years. Yes it has an affect and I don't think you ever get back to pre treatment levels of fitness as there is always some niggle or after effect of all the treatment, but it does continue to get better even after 2 years out. I think it took me about 5 years to fully recover and then I had to accept I was 47 not 42 and I my body had been through a lot.
Give yourself time it will keep improving.
You can have a read of my journey by clicking on my name here PAUL'S JOURNEY
Any questions feel free to ask.
Paul
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