Tagged: Black woman
This topic contains 8 replies, has 4 voices, and was last updated by 
I am a 62-year-old self-employed black woman who loves the gym and would consider myself very healthy. After most of December 2022 I wasn’t feeling well and on January 3rd, 2023, I decided to go to A&E after not being able to get a face-to-face appointment with my GP. Whilst at A&E, they diagnosed me with dangerously high calcium levels and admitted me to save my life. As they investigated further, they discovered that my kidneys were failing, and on January 6th, 2023, I was diagnosis of multiple myeloma (lambda light chain), a condition I’ve never heard of before.
The news came as a shock! I had to start treatment immediately due to my Kidney GRF was 3% and Lambda light chain 22921. My regimen included Velcade, daratumumab, and other medications, with some minor side effects, such as severe eye infections, which have thankfully cleared up.
Fast forward six months, and I’ve undergone the process of harvesting my stem cells. However, due to my kidney function (now at GRF 34% and lambda light chain 622), I haven’t agreed to proceed with stem cell transplantation (SCT) yet. It’s been a rollercoaster of emotions and reading a lot of insights to know what the right thing to do. My renal consultant initially mentioned a target kidney function GRF of 40% for optimal outcomes, but now they’ve changed their view and think I should do it now. This inconsistency has left me feeling betrayed and very uncertain and if I can trust what they’re saying.
I’m concerned about the potential damage to my kidneys and if there’s other options out there than the STC?
Trying to reach out to patients in my situation, to hear about their experiences before and after SCT.
I am struggling with everything.
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
Welcome to the forum Missm
You can always ask for a second opinion at a different hospital (on NHS) if you remain unsure what to do. Although it can feel uncomfortable for the patient to ask for one (at least it did for me), hospitals are used to this and good doctors won’t take it personally.
The decision to recommend stem cell transplant at this stage has almost certainly been made by a multi disciplinary team meeting in your hospital, between renal consultants and haematologists. It may be helpful to ask why there is a discrepancy between what you were told before, and current advice. I’d try to understand what their reasoning is.
For most myeloma patients, most of the time, there are clear pathways (dictated by NICE anyway) that all UK myeloma specialists would agree on, such as the advisability of having a stem cell transplant if the patient is fit enough. However there are some patient scenarios where there is more of a balancing act, weighing up relative risks and benefits of further cycles of treatment Vs transplant for example. This is more of a delicate balancing act, the art of a good haematologist.
Many myeloma patients have a degree of kidney damage, even if less severe than yours was at diagnosis, and transplant centres have experience caring for myeloma patients with renal issues.
As you probably know, at the moment stem cell transplantation is the only option which enables myeloma patients to be virtually treatment free (maintenance is in tablet form & has easier to live with side effects). Statistically patients will have 5 years of myeloma being in the background rather than centre stage, and for many of us, a good quality of life can be resumed.
Best wishes,
Jane
Hi Missm
Ive just come across a UK paper from last year about ASCTs for MM patients with chronic kidney disease, which looks hopeful that it is a good step to take:
https://www.nature.com/articles/s41409-022-01657-y
Hope you can follow the link.
Jane
Hi MissM,
Similar to you I was diagnosed at 50 with renal failure and about to be taken for dialysis. Lambda light chains are worse on the kidneys and I only had a reading of 1120. Anyway, because I am high risk with translocation 14:16 I was accepted for SCT and think kidneys were then low 20s. I had to get a 2nd opinion from another hospital (Leeds) due to kidney function:expert opinion. I Sct’d at a hospital where access to dialysis was available – but I didn’t need it. I was told at the consult that some on dialysis SCT and then no longer need dialysis – so this gave me much needed hope. The high dose chemo did not damage the kidneys further and think kidneys were slightly better at around gfr 26 when I left hospital. I was told my kidneys would not recover further but 5 years later they very gradually improved to 40 and now in my 10th year they are a stable 42-44. So never lose hope. I would seek an expert second opinion and choose a hospital which has access to dialysis should things initially go worse. My original hospital – which didn’t want to SCT me – would have had to transport me to another hospital should kidneys go into failure – this is not appropriate for reasons of hygiene and the fact that S&D stage would have made it really unpleasant also. I am in my 11th year of MM and have had no further treatment – so it was a good decision for me. We do all react differently but have known others whose kidneys have gradually improved even tho we are told they won’t. At the SCT consult I was told I had a 20% chance of not making it – but I was 50 and ultimately based my decision on my “gut” instinct. You are young and fit – a massive plus that totally skews the statistics they quote. It’s a big decision and when I have to make it again I will trust my “gut” again. It’s all guess work as MM is so individual so go with your belief. Good luck
Rebecca
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
Hi Derek, I have not yet achieved 11 years post Sct as it took me a year to lower my light chains etc in order to SCT. In those days you only got maintenance if on a trial and because of my kidney function I wasn’t eligible so I have had no further treatment. At the time my consultant said I could look at having maintenance as using a 2nd line of treatment up early – but I was kinda glad the decision had been made and no further treatment. Since SCT my neutrophils have always been below range and with my kidney function I didn’t want further toxicity tbh. As with SCT and any treatment – our reaction is very individual and therefore hard to judge statistically. If I had maintenance I would have put my long remission down to the maintenance – which I know, only now, would be incorrect. There are many people who have hit double figures etc from SCt without further treatment but I guess the nature of the beast is that we are more active on forums when on treatment etc. I was told initially due to my high risk status I might get 18 months remission and if lucky I would be seeing them again in 7 years – unfortunately it is guess work but I like to think it gives us all hope as there are so many of us that don’t fit the “expected” due to the individuality of it all.
Thanks for replying Rebecca.
I’m quite a few years behind you in this journey, so I can only hope I make it as many years post SCT as you before I need possibly a second SCT. The other half of my sample awaits me in storage!
Until reading this forum I was not aware it was even possible to go 10+ years SCT in remission. But I also know many people don’t go anywhere near that far.
As you say it is a very individual journey.
Thanks for giving me a little more hope!
Hi – as an example – I met a lady when I was first having treatment and she’d gone 20 yrs using just velcade and dex twice! The second time 12 years from the first. We are told your second SCT generally gives you only half the amount of time as the first- one guy got 7 years from the first and currently 12 from the 2nd. With the development of drugs etc everything is possible if you find the drug that suits you. If I’d researched all the good stories out there at the beginning things wouldn’t have seemed so bleak. There are alot of people living well with MM but when in that phase it’s human nature to try and step back and not post.I believe local support groups are full of long termers. Believe it too – and if you are proven wrong then the belief/Hope would, at least, have made this long and winding path more durable. MM is very much a mental game – spend your time developing a strong mindset with good coping strategies and you’ll do ok 👍🏻
You must be logged in to reply to this topic.
