[bandityogaParticipant]

My husband has just gone into hospital this week for high dose cyclophosphamide in preparation for second SCT using radiation instead of mephalan. Since he received the cyclophosphamide his kidneys are not functioning very well but the consultant thinks it may be the myeloma progressing as he hasn’t been on any treatment for 3 months to preserve his stem cells. They have reduced the dose of gscf and said the SCT won’t go ahead and he is in a very bad place. Finding it hard to believe as we were told last week that all bloods, kidneys etc. were good. He has had several treatments which didn’t really work apart from CDT and revlimid got his FLC down to have his SCT which gave him 18 months remission.

Not ready to give up yet and going to ask for second opinion from myeloma specialist.

Has anyone had poor kidney function after having high dose cyclophosphamide?

Feeling anxious.

Maureen

[evostickParticipant]

Hi Maureen, how poor is poor? I was diagnosed back in February after a routine blood test showed unexplained kidney failure. At one point I got down as low as an eGFR of 7.

Yesterday I started my 6th cycle of velcade/dex (no thalidomide due to the kidney function). My kidney function has slowly worked its way up to 23. Right now the plan is to finish this cycle and start prep for a SCT, aiming to go in to the QE at the beginning of November.

I have managed to avoid dialysis throughout but I have been told that the high dose of chemo is likely to have a negative effect on my kidneys and there is some talk of putting me on dialysis for my hospital stay. All this is dependent on whether my kidneys continue to improve (and by how much) in the short period between the 6th cycle ending and the SCT.

Sending you and your husband my best wishes and hoping for positive news

Eve

[bandityogaParticipant]

Hi Eve

ian’s kidney eGFR is 6 and as he has had several treatments the consultant thinks this is end stage. I am praying that today his kidneys improve and I will talk to the specialist at The Beatson to see if his SCT, using radiotherapy can go ahead.

Hoping you continue to improve and get your SCT.

Maureen

[rebeccaRParticipant]

Hi Eve, I had my Sct with a kidney function of 20+ maybe 23ish – I can’t remember details now as it was 31/2 yrs ago. SCT carries greater risk with poor kidneys but you do have a lower dose of melphelan to compensate. The Sct did not impact the kidneys further and 31:2 yrs later with no further treatment they average around 32-37. It took about 18 months after Sct before I saw much improvement. After the cycl for stem. Ollectiln my kidneys went up about 4 as the Mm burden was reduced (my kidney function is impacted negatively by just a rise of 10 in kappa/lambda. I had to Sct at a hospital that could finalise me, if needed, without travel but I didn’t need it. My bloods – which are pretty rubbish in general – took a long time to come good (for me) which I blame on the kidney element. Hang on in there and hold onto hope.

Hi Maureen, Sorry to hear about your current situation, fingers n toes crossed for improvement x

Rebecca

[evostickParticipant]

Hi Maureen, good luck to you and Ian, I really hope you get some good news and thatcher radiotherapy is an option.

Rebecca, thank you for your feedback. Sounds like you and I are/we’re in a similar situation. Although, I am quickly learning that with Myeloma, no one is the same!! Did you have to dialysis during your SCT or did you just manage to maintain your 20-23?

It seems mad but I am more fearful of dialysis than I am of cancer! I’m only 40 and I’m rubbish at making lifestyle comprises so the thought of being plugged into a dialysis machine 3 times a week forever, scares the living hell of me!

Eve

[bandityogaParticipant]

Hi Eve and Rebecca

Ian’s kidney function is improving slightly each day but still far from normal. He has never had an issue with is kidneys even whe his FLC where 4000 on diagnosis. I think they said it was 550 and normal is 200. No FLC results but think it is the myeloma attacking the kidneys. Consultant advised that as Ian has had several treatments and not much success with any other than SCT is there another treatment available which won’t attack his kidneys and does he want quality of life without any treatment. It is so tough for me as I fought for his first SCT which gave him 18 months remission or are we resigned to having several months on palliative care. Carflizomib has been passed by SMC recently but consultant said he didn’t meet the criteria as he has had more than 3 treatments but I will phone and ask the nurse on Myeloma Uk to confirm this.

Ian is such a kind and caring husband and doesn’t deserve this. I pray that there will be a treatment that will work for him.

Go for the dialysis and good luck for the futre.

Maureen

[rebeccaRParticipant]

Oops for typos meant dialysis me not finalise me! Not ready for that yet!

[rebeccaRParticipant]

Hi Eve, I have not had dialysis tho at diagnosis time went to around 5! They repeated my blood tests as didn’t know how I was standing (I was a fit 50 yrs) I was told by someone on the forum (tho in a private thread) that kidneys could improve and his improved about 3 yrs later and he also told me of a friend who went through SCT on dialysis and 4 years later came off dialysis. I was in a very dark place then more because of my kidneys than MM. He gave me tips to assist kidney function but honestly other than drink the water I do not do anything differently now. 6 months after SCT I was back playing in tennis matches and now I exercise a lot and am not hindered in any normal day to day life with my kidneys. We are all different and my consultant was very concerned about the possible impact of cyclosophomide for stem cell collection. For me it was Ok and I think the younger you are the better it is. I was told I had a 20% of death re SCT because of kidneys but the gamble paid off. Now, I feel, always go with your gut instinct re treatment – not very scientific but them MM is very individual perhaps that is as good as any measure. “Life shrinks or expands by the extent of your courage”

[evostickParticipant]

Maureen, good luck with the Carflizomib research, let us know how you both get on x

Rebecca, thanks so much for your comments, they were exactly what I needed to hear!

 

Take care everyone x

[bandityogaParticipant]

Ian’s kidneys are slowly recovering and we were advised he should be home by the end of next week. His FLC are now 5000 which is very surprising as his bloods were monitored every 2 weeks. Consultant has asked us to consider if he wants to carry on with treatment which might not give him much remission and have not so nice side effects. He is eligible for carflizomib and we can access daratumumbab through our private insurance.

It’s a very worrying time. Has anyone had success with daratumumbab?

Maureen

[janwParticipant]

Hi Maureen

A really worrying time for both of you. What were Ian’s light chains when he was originally diagnosed? I just wondered whether they were higher than 5000? I would certainly try to find out more about Ian’s genetic make-up of his myeloma in order to try to determine whether there is any available evidence on Daratumumbab or Carflizomib having good results controlling and reducing his specific individual myeloma. There might not be this evidence available, but in America they are certainly trying to identify which drugs work better with different types of myeloma although it still appears early days in this area. You might be able to discuss this in more detail with a specialist myeloma consultant in London via your private medical insurance. I hope you find an option to more forward with.

Jan x

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