[justmeParticipant]

Hi everyone,

This is my first post, It’s taken me a while to work up the courage to post anything.

Just a bit of background information. I was diagnosed with Myeloma in February 2021 at the age of 38, although I was symptomatic a long time before eventually being diagnosed.

I have light chain Myeloma with 14:16 rearrangement and 1p loss. Upon diagnosis I was in renal failure with my kidneys functioning at 23%. I had four cycles of Velcade and cyclophosphamide with Dex from February to May and then was lucky enough to go on to have a SCT in July. Since my SCT my kidneys have struggled and are continuing to deteriorate. I was just wondering if anyone had any similar experience or any advice or tips on improving kidney function.

This may sound crazy but I think I’m more worried about dialysis than the cancer at this stage.

It’s been a really difficult journey, and I was hoping the SCT would help stabilise kidney function so I am a bit disappointed with recent blood results.

Lots of best wishes to everyone on this journey.

[shropshiremumParticipant]

Hi there.

I was diagnosed in November of last year, following a routine blood test that revealed I had just 12% kidney function. It came completely out of the blue, although I’d been feeling a bit ropey for a couple of months and had been suffering from achy legs. I was 47 at the time and was still breastfeeding my 2½ year old, plus I’d had a couple of tick bites in the summer, so menopause, late motherhood and Lyme disease were all on my radar! Cancer was not something I’d considered…

Anyway, my kidney function dropped as low as 10% during treatment (VTD), and dialysis was something I was really worried about.

I had my stc in July, and was petrified that my kidneys would deteriorate, but fortunately they held out. Since then they’ve slowly improved and at my last blood test two weeks ago, they were at 19%. That’s still very low, but any movement upwards is good.

I don’t really have any advice for you, but just wanted you to know you’re not alone. I still feel that I’m on very shaky ground. Dialysis would have such a huge impact on my life (in addition to the myeloma), that it’s always going to be there at the back of my mind. I have a small child and a partner who’s in the Navy, so there are logistical issues to figure out, should I ever need it.

All I can say is hang on in there, speak to your medical team, and do you have a renal consultant on board? My renal CNSs are lovely and very supportive.

Susan

[justmeParticipant]

Hi Susan,

Thank you for your response. I too have a young daughter and my husband works away so that’s something that has crossed my mind with regards to the logistical process should I require dialysis.

It’s interesting that you mention a renal consultant, I don’t have one so I think this maybe something I mention to my medical team on the next visit.

I’m just hoping this is a small blip and things start to stabilise when it comes to kidney function.

All the best to you and I’m pleased to hear your kidney function is slowly improving.

Best wishes x

[shropshiremumParticipant]

Hi there.

Just thought I’d check in to see how you’re doing. Did you manage to speak to your team about getting a renal consultant on board?

Susan

[justmeParticipant]

Hi,

Thank you for the message, I hope you’re well.

My consultant is currently on leave but I have an appointment with her next week. I recently had a blood test which showed a slight improvement in kidney function so I’m holding on to that. Mentally, it’s taken me a while to start seeing the positives without catastrophizing symptoms. I’ve had some dark times.

Met my consultant in Leeds last week following my bone marrow biopsy, I’m in complete remission so now moving on to maintenance, extremely pleased with this.

Can I ask if you personally experience any symptoms with poor kidney function?

I hope you’re doing well.

JustMe

[shropshiremumParticipant]

Hello.

Sorry for the delay in replying. Aside from the general fatigue, which is also associated with the myeloma, symptoms related to my kidney disease aren’t too bad. I do have to get up in the night more frequently (for a wee!), and I occasionally wake up with a headache.

Both of these were symptoms I had before my diagnosis, so it was a lightbulb moment when I first spoke to a kidney CNS and she listed the possible symptoms of kidney disease.

As an aside, at a dental check up a couple of years ago, my dentist asked me if I ground my teeth, as doing so at night can cause headaches in the morning, apparently (I’d had some experience of waking up with a headache). Unfortunately, I’ll never know if my kidneys were already deteriorating at that point.

I have to do weekly Eprex injections and am on iron tablets. At diagnosis, I was put on amlodipine to keep my blood pressure down to protect my kidneys, but since my SCT it’s been fine so I’m not on them at the moment.

How about you?

[Author]

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