[stanley-1960Participant]

I have just got back from latest consultancy and am a bit shocked but happy. My consultant and myself decided in June to stop Revlimid maintenance 10mg over 4 years due to constant chest infections in winter after a second SCT in 2021. I was on the same drug for 18 months previous 25mg to get me ready for transplant. After my first transplant in 2014 I managed SCR with normal free light chains for several years before a slow serological relapse by 2020. I have never reached SCR since even after the second transplant. So I had a sense of foreboding going to clinic today without having my comfort blanket revlimid for the last 4 months. Unbelievably my free lights have dropped to within the normal level and the ratio is the same. This puts me in stringent complete remission (SCR) for the first time in 8 years😮. My consultant who is director of haematology was honest enough to say she hasn’t got any answers to explain the reversal other than the strain on the kidneys now off chemo has reset in some way. As others have said this is the strangest disease with surprises around every corner.
Stay safe everyone,
Stanley

[blobgobParticipant]

Thanks for sharing this Stanley.

[rebeccaRParticipant]

Hi Stanley, What a fantastic early Xmas present you have received. So pleased to hear everything is better than ok and no drugs! I have been out of range for 2 years now but the numbers are small and don’t really budge and I have no symptoms so hoping it continues like this for a few more years. Will be 12 yrs at Xmas since my Sct with no maintenance so all good and hopefully it’ll be the same for you without maintenance.
Take care
Rebecca

[stanley-1960Participant]

Hi Blobgob,
No problem sharing. Like Rebecca it can be good for others especially newly diagnosed to see the bigger picture and longer journeys of old hands like myself and Rebecca.

Hi Rebecca,
Great to hear from you again and your current status of no treatment you are the real A star. I’m just a pretender to your crown. My 12 year anniversary will be March next year. I must admit I feel incredibly well off the Revlimid. Bloods excellent, just had a heavy summer partaking in the odd beverage( as one must do) with no side effects. Are you still on the courts knocking that bit of rubber about😁. I was just wondering how are friend Richard is doing?

Take care,

Stanley

[rebeccaRParticipant]

Hi Stanley,
Unfortunately, I have seen no posts from Richard but just come on now n again – probably near blood time – so could have missed him.
I had a hip replacement in June (very worn/impinged) I was given an “active” hip replacement and as I’d only stopped tennis 6 weeks before the op (due to the pain) I have recovered fantastically well and was ralleying – but no running- at 7 weeks and at 12 weeks running around as good as 10 years ago n pain free. So I have retained my position in the teams and can actually play twice in one day now without any adverse effects! Tho trying hard not to over do it. When I had the op my lambda light chain was scarily high for me n affecting my kidneys and they didn’t know if it would revert back to (my new) normal but at 8 weeks it did! I think that’s when I was fully on my fitness regime so I really do think exercise can play it’s part in keeping Mm at bay – my theory and I’m sticking to it!

[stanley-1960Participant]

Hi Rebecca,
Wow More inspirational stuff with your recovery. I’m hoping to take a leaf out of your book. My speed walking 15 miles a day finally caught up with me with both knees bone on bone. I was managing to get to the pub and back 3 miles but felt it the next day. Just had the full knee replacement last week on the one knee. Exercises are tough but great progress considering not quite 2 weeks. Also had neurosurgery on the neck in last September. Had bone spurs growing into the spinal cord on c5-c6 and c6-c7. I now have 2 new discs that should be fully fused soon. Your theory of keeping active is vital if MM patients can. I can’t wait to go yomping in the countryside it’s incredible for mental health as well(on my own) the silence helps the mind really think for me.
All the best
Stanley

[Author]

Posts