Hello

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I was diagnosed with Multiple Mtloma October 24 after a blood test by my Gastro Consultant (Ulcerative Colitis) noticed some unusal results.

Near the end of December I started Chemo and at the end of June I had a Stem Cell Transplant.

Main side effect of the Chemo/Transplant is the neuropathy in my legs, as a type 2 diabletic I had a little in my toes but it spread up to my knees and is painful most of the time, I had to use a walker for a few month but can now manage with a stick, opinion says I have a 50/50 chance of getting full use of my legs again.

I still have a lot of fatigue which I expected to have resolved by now 6 months on from transplant, is that normal, am I expecting too much too soon?

Regards

John

  • Hi  John    welcome to the Forum   if you have not  posted previously,    i am Kevin AKA  Vespa,   male  68  and  now 21 months post Stem cell transplant,       i am in Remmision,   and like you i have  mild to severe Neuropothy  most days,   particularly in the afternoon and evening,    i take  Pregablin,   2 x 50 mg    twice per day,     i was told this was the side effect of the treatment,  DVTD,     4 cycles,   transplant and then  2 more cycles,    i  was also on Lenolidamide  maintenance,  but had to come off,  due to severe skin reaction,          i feel i have come a long way and   resolved myself to enjoy the new me,  as the alternative was not great!      i  am pretty active,  but get  frustrated with   fatigue  or not able to do all the things i used to do,   i am certainly no  couch potato  and  love the grandkids coming to play and make rice krispy buns etc.       i am not sure we ever get back to "  the way we were"  but   grab the  remission time  with vigour,   and    be honest with the people who care for you,  on what  you can and can not do,        i feel there is so much to look forward to,  and a  wedding ( daughter)  in late december,   2  boys and partners and baby  ( not met yet)  coming home for Christmas and the wedding,     please never feel alone,   reach out with your thoughts and concerns,   a lot of good  folks on here will give you  good advice and encouragment,         best Wishes,   Kevin    a merry Christmas,   early 

  • addition from Kevin,      boys  coming home from Australia,  i meant to write !       i also  missed one of the boys wedding down under,  due to treatment,   and could not travel,   broke my heart !   Kevin

  • Hi John am 71 and was diagnosed February 23.  Had a stem cell transplant September 23 and have now been in remission since then.  I have terrible neuropathy in my feet and nearly upto my knees. My consultant is unsure if the feeling will ever return!  I take Pregablin twice a day 300mg in the morning and the same before bed together with all my other  medication. I drop off straight away and put it down to my Pregablin but the fatigue sometimes hits me like a train.  My life isn't the same as before obviously but somedays I'm OK then other days I feel like i haven't slept.  It's all part of the journey but someday I have a nap in the afternoon and one in the evening too.  Just listen to your body and if you need to sleep then do it. Im sure many more people on the forum have the same issue so don't feel you're the only one.  Hope this helps.  Take care