[cjleedsParticipant]

I am 71 and have lambda light chain myeloma first diagnosed in October and confirmed with a bone marrow in November 2023. My free light chains were 170 upon diagnosis but climbed to 2000 by February 2024.Perhaps more significantly the light chains were causing significant kidney problems with episodes of very high creatinine. At this stage my consultants decided that it was time for treatment. I was keen to have a stem cell transplant but more than one consultant advised that DRd was my best option even though I had no other co morbidities. After discussion with my family I agreed.
I am now half way through my eighth cycle and I must say that although I have found the treatment tough ( dexamethasone ups and downs , fatigue shakes etc) it doesn’t sound as bad as others with different treatments have experienced. One troubling symptom has been awful diarrhoea with very loose watery orange stools. I raised the possibility that this was bile acid malabsorption caused by lenalidamide a while ago but the consultant that I saw at that time said it may be just diarrhoea caused by the lenalidamide and not BAM. After my most recent monthly consultation the consultant I saw suggested it may be BAM. and prescribed cholestyramine. Thank goodness! The diarrhoea has cleared up and coincidentally I feel better than since I started the chemo. This may be coincidental and it could be that at last my body is getting used to the DRd treatment but I can’t help but think the two are linked. I will post updates later but I am interested in how others with BAM have found the treatment.

[rabbitParticipant]

Hi cjleeds,

I haven’t had BAM but I have to comment on how you seem to have been treated.

If you were diagnosed in November 2023 but treatment didn’t start until February 2024, that was around 3 months in which the myeloma was allowed to run riot.

Then you self-diagnosed BAM, but your consultant diasgreed and you went through an unnecessary side effect until now.

Consultants have the technical knowledge but they are not infallible gods. Us patients, I believe, have to build up our knowledge (by the standards of laypeople) and stand up for ourselves.

Likewise, the NHS is on its knees and we have to make sure that we get the treatments we need when we need them.

Regards
Rabbit

[cjleedsParticipant]

Thank you for your reply Rabbit,
You make some interesting points. With regards to my treatment delay of four months , I didn’t really think of this as a problem at the time. I assumed that the free light chains were monitored and allowed to rise as I was feeling well and the kidney problems regarding high creatinine were only noted after monthly blood tests on two occasions ( it was after the second occasion that treatment was recommended ).I did wonder at the time if the delay was also due to the fact that DRd as a first line alternative to stem cell transplant was only given the go ahead by NICE in october 2023. Having said all that my latest free light chains are 34. To be fair to the consultant I initially raised the possibility of BAM with ,the diarrhoea was controlled to a certain degree by loperamide, and so I wimped out on pressing my conviction that it was BAM. You make an extremely valid point about learning as much about our conditions as possible and this site with its many contributors is invaluable,
kind regards
cj

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