Hello

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

Hi Vespa and Bunky

Thank you for your welcome and comments. I am 68 (69 in Jan)

It is great to hear from someone who has been through it and know what it's like and can give realistic expectations, all the doctors say is 'things will probably improve'

For the neuropathy I am currently on Gabapentin and Amitriptyline, not sure if they are helping as I have noticed little improvement, getting out and walking seems to help more but then I suffer for the next couple of days. I am due to start lenalidomide in the next few weeks but not sure how that is going to go as I had to come off Thalidomide during transplant as the side effect were unpleasant,  red and swollen face.

My goal is to get well enough with my legs to get back on my Motorbike, at the moment that is not looking like it's going to happen but meanwhile I am now able to work on the projects I have, a 1956 BSA Bantam and a 1977 Honda 400/4 both for restoration.

Take care

John

Hi John,

Thank you for sharing your journey. I’m also a myeloma patient, diagnosed in 2014, so I really understand what you’re talking about. I feel exactly the same as you described. The neuropathy, the tiredness that comes out of nowhere, and the days when it feels like I haven’t slept at all,  it’s all very familiar. Some days I manage well, and other days my body just wants to shut down with naps in the afternoon or evening.

It can be frustrating, especially when life is so different from before, but like you said, listening to your body really helps. Knowing that others on this journey have similar experiences brings a bit of comfort.

Thank you again for sharing. Wishing you strength and better days ahead.

Take care.