[blobgobParticipant]

Hi Rebecca,

That is indeed encouraging to hear that you have gone 11 years post SCT with no further treatment. I appreciate that this is not the norm, at least not at present!

Are you on any maintenance treatment such as lenalidomide?

Regards,
Derek

[blobgobParticipant]

Hi Missm,

I’m also in the “lambda light chain club” and your initial diagnosis reminds me very much of how my cancer was picked up!

My kidney function was down to 12% on hospital admission via A&E, but after five chemo cycles I was in full remission and my kidney function was back to normal. That is where we differ, with regards to kidney function.

So when I went in for my SCT I was feeling pretty much ok, but that quickly changed after the malfalin, and the next 10 or so days was spent lying on my hospital bed hoping I would feel better the next day.

But I did get better, and was out of hospital after 2 weeks, less my hair and a little weight. It took a few more months to fully recover.

As to whether you should go ahead or not due to your reduced kidney function, I think if I was in your situation I would go along with what the experts say. This is after all what they do every day. Any treatment to reduce your paraprotein levels is going to improve your kidneys long term efficiency.

Best wishes,
Derek

[blobgobParticipant]

I was lucky, my bone marrow biopsy was painless. It was taken from the base of my spine when I was an inpatient in hospital. It was taken by a junior doctor under supervision of my consultant!

This confirmed Multiple Myeloma and my treatment started a day or two later. 5 cycles later I was in remission.

[blobgobParticipant]

Apologies, I was in hospital for 2 weeks when I had my SCT not one, but I can’t see any way to edit my earlier message.

[blobgobParticipant]

I had lesions and fractures all over my torso, when I was initially diagnosed, the worst being when I cracked my sternum after I had a “mega” sneeze! So every time I coughed or sneezed after that I screamed and everyone thought I was having a heart attack! I dreaded the next sneeze which often came on me suddenly.

But my lesions had all healed after 5 rounds of chemo (Velicade, Dexamethazone, Thalidomide) so when I went for my SCT I was feeling quite good and fully mobile, and sneezing without pain!

But withing 24 hours of taking my Malphalan, I was pretty much bed bound as I felt so weak, with a commode by the side of my bed, as getting to the loo was such an effort even though it was not far away. For the next week, I pretty much lay on my bed and watched videos, and snoozed a lot. But after a week I was able to walk out the ward, Kings in London, and things just got better and better from there.

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