[macklebaeParticipant]

Hi, by way of introduction I’m 50yr old male, 5 weeks since diagnosis precipitated by a rather dramatic airlift following Renal failure! Had been feeling rubbish since Christmas following COVID in Dec; during Jan my wife got better but I just got worse…put off going to the GP thinking it was a post-COVID hangover. COVID just a coincidence. Tests revealed chronic kidney failure (5% output) then few days later the Myeloma bombshell. Chemo started (Bortezpmib & Daratumumab) with dialysis 3 tmes per week.

I can’t fault the NHS care & I appreciate this is all still early days. It is I think another 6 weeks or so before the Renal Consultant will confirm if my Renal failure will be classified as chronic or whether they expect some recovery of kidney function. So, without looking too far ahead, & without being pessimistic, I would value anyone’s experience in dealing with Myeloma & Chronic Renal failure. Specifically for example, is having Renal failure a barrier to some Myeloma Treatments where you would otherwise have been a candidate (e.g. SCT)?

More generally, at an emotional level, I am kind of rationalising the Kidney failure in my mind as the future path to recovery or enduring treatment options (as well as the effect on daily life) seems fairly Black & White. The Myeloma diagnosis by contrast I’m not sure I’ve processed, just numb, denial, shock? I think this is because of the considerable uncertainty at this stage in terms of e.h. life expectancy, exacerbated as I don’t feel ill from the Myeloma and thankfully chemo side effects have been minimal. Consequently, I am struggling to rationalise the diagnosis snd what it might mean for my future…how ill might I get etc.

Any advice, experiences gratefully received.

Thank you.

Derek

[kh0305Moderator]

Hi Derek
Sounds like you’ve had a truly awful start to the year 🙁 Hopefully though with the diagnosis your medical team can get you feeling better and the MM under control.

My dad was diagnosed in January 2013 with MM following many months of going to Drs with what we now know was bone pain culminating in pneumonia which got him admitted to hospital and finally the MM diagnosis. I can’t speak to the kidney failure part as somehow dads kidneys were mostly unaffected. In terms of the MM though, the sickest dad was with it was at the start pre and just after diagnosis but once the chemo kicked in he got progressively better over time and by minus 2014 (post SCT in aug 2013) was living virtually normal life and remained in ‘remission’ until Dec 2020 when the first signs of MM rearing its head again were some hip pain. Dads now on IRd ongoing until it stops working for him and blood counts have plateaued for now so hoping that continues. Current discomforts are mostly side effect related to the IRd rather than the MM itself (mild neuropathy, some GI issues again mild and chemo fog).
Hope that might help a little. Everybody’s MM journey is different but there are so many treatments available and more coming along that it’s very treatable. Good luck with your treatments and hope you are feeling better soon xx

[mulberryParticipant]

Hi Derek
My myeloma damaged my kidneys to some extent prior to diagnosis. I have IgG lambda myeloma and I understand that lambda light chains, being twice the molecular weight of kappa light chains, are more likely to clog kidney tubules.
My kidney function improved during induction treatment for the myeloma and has stayed stable in the 4 years since.
I have seen reports from myeloma patients who have required dialysis (which I didn’t) that their kidney function too has markedly improved during treatmwnt, although it can take about 3 months. I hope that you too have this experience.
Jane

[macklebaeParticipant]

Hi thanks for your reply and the information provided has provided me with some more targeted questions to can ask my Consultant next week. It also reinforces the need for me to have patience!

Kind regards.

• This reply was modified 1 year, 7 months ago by  macklebae.

[macklebaeParticipant]

Hi, thank you for the reply and what comes across as a relatively positive story about your dad which is heartening to hear for someone at the start of all this.

Not having chemo side effects or MM symptoms other than the kidneys makes it somewhat surreal as I said in my first post…just need to have some patience and see if the chemo has an effect.

Thanks again.

Kind regards.

[susantrParticipant]

Dear Derek
I was diagnosed with Lambda light chain myeloma in 2016 after suffering severe backache, spasms, rib pain, nausea, extreme thirst and confusion to some extent. I had collapse of L3, (L4/5 were crumbling). I had a creatinine of 245 and kidneys were barely functioning. Upon admission I had aggressive hydration for 5 days, which eventually recovered my kidney function. Lambda light chain disease has a bad prognosis as it blocks the filtration in the kidneys. They are bigger than kappa light chains, which seem to find their filter through the kidneys. I had 90% blasts in my bone marrow. I had vertibroplasty to L3/4/5 and was started on the Myeloma XI trial, I had CDT then SCT. I consider myself extremely fortunate to have gained MRD -be after STC. Eventually after several months my platelets were at a level whereby I could be randomised for Revlimid maintenance. I started Revlimid, but unfortunately my liver did not tolerate the drug and it was stopped. That was 6 years ago and I have been off treatment (barring 2 weeks) since July 2016. I remain in complete remission with 90% kidney function. I changed my diet, omitting sugar, perused a plant based diet and take 8g of curcumin every day. I also consulted with Care Oncology in Harley Street and commenced Metformin, Mebendazole and Doxycycline (pulsed). We have all got to do what we believe is best for us, this is me trying to take back some control. What I would say is do a google search on any of the above drugs and supplements and see the pubmed articles eg curcumin + myeloma + pubmed etc. Curcumin blocks a lot of myeloma’s pathways, along with many others. This is just what I believe has helped me remain in remission. Everyone’s journey is their own we all have individual biochemistry unique to us, so please do not get bogged down with stastics. You are a static of 1.
Sue

[macklebaeParticipant]

Dear Sue, thank you for such a comprehensive and informative reply – extremely useful in giving me more research to do and in focusing discussions with my Consultant. Your point about being a ‘statistic of 1’ is particularly poignant.

Kind regards, Derek

[rebeccaRParticipant]

Hi Derek, Your diagnosis is very much like mine. I was 50 and been misdiagnosed, with no tests, with labyrinthitus a few months before crisis stage. Fit, healthy and never gone to the drs so trusted them (never again – be your best advocate hereon in) Hardly any blood and around 5% function. My lambda light chains were only 1200 but guess they’d been damaging kidneys for a very long while. Once the myeloma burden decreased gfr modestly increased. I was constantly told they cannot regenerate and would never get beyond early 20s. With a second opinion from Leeds I had an SCT a year after risking my kidneys which I think was 16-22 then? I have translocation 14:16 (damages kidneys rather than bones- high risk). Anyway no maintenance offered but couldn’t take it anyway as my blood neutrophils etc remain very low since Sct. So drug free and in remission in my 11th year with a gfr of 42-43. Took my kidneys about 5 yrs post SCT to get to a normal stable. I was distraught re kidneys more than Mm thinking they would finish me off first but I sought out the good stories ie a guy who Sct’d on dialysis and 3 years later he came off dialysis! There are many exceptions – I was told my genetics were aggressive – and yes it is – on my kidneys – but not on treatment’s. MM is very individual/unique to the person so don’t listen to the statistics because that’s not you. There is always hope and plenty of stories to support it – at 50 you are younger, stronger, fitter than the statistics – where the average age of diagnosis is 70yrs – never forget that. I play around 12 hrs tennis a week, long dog walks, life is normal. My gfr does not impact my fitness. Please read my old posts as I rarely post now- but I think they will make things seem lighter/doable. MM is by far a more mental struggle than physical struggle. Focus now on your coping strategies to live well with it.Btw my treatment was only velcade/dex in those days – better on kidneys.
Best wishes
Rebecca

[susantrParticipant]

Hi Derek
Didn’t type statistic correct but clearly you understood. I was given 3-5 years. Just FYI I was 51 at diagnosis, although there were no statics at that time for a 51 year old, they began at 60! Being positive will serve you well. We cannot change what tomorrow may bring but we can choose how to deal with it. Enjoy 1 day at a time. Going through STC is harsh (at least it was for me, it was 50/50 whether I would survive). However some people breeze through it, as I say your biology is unique to you. I would ask that you take a look at Margaret’s Corner MM blog she has so much information backed up by British journal publications. It’s educated me. Good luck in your journey. Sue

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