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Hi, my mother was recently diagnosed with Multiple Myeloma and started the Chemo, at first we have all been positive and she seemed to react well to everything, today however I found her crying and in pain, she said she was struggling to breath and was in pain, she is quite a proud women and seemed more upset that I found her in this position and pain. So I made her go to the hospital.
Is this a normal symptom in the Myeloma does anyone know, I know my mother does not want anyone to worry for her, so I fear she may be hiding some details, I am going to go in and see her Doctor on Friday, at the moment she is in hospital over night on a drip, presumably to flush her kidneys out.
It is troublesome times and I feel the pain that everyone involved with this disease goes through. God bless you all.
Stu
Hi
You did the right thing getting mum to hospital as the sooner they are aware of any problems the sooner they can treat them.
Kidneys can be affected by Myeloma and the hospital will be testing mums blood at the end of each treatment cycle to check how they are functioning. She will be asked how she is feeling, whether she has nausea or tingling or pain. Tell mum she needn’t suffer in silence, her consultant will always want to know so that treatment can be adjusted to relieve symptoms. In our area we are lucky to have a couple of specialist nurses available to answer questions at any time and also an emergency number.
Myeloma UK have lots of helpful booklets for patients and carers which you can download or have sent to you. My husband has Myeloma and has never wanted to know the ins and outs of the disease, he just keeps his head down and gets on with the treatment. I have read them and on the odd occasion he has talked about things I have been able to refer back to them for info.
All the best
Teresa
Hi thanks for the reply, she has Acute Kidney Injury and they want to keep her in hospital for 4-5 days, not sure if that time scale is normal or not.
Thanks for your reply, it is great support.
Hi,
My husband had Acute Kidney Injury when in hospital after his SCT. Six months later his kidney function is normal.
best wishes
Teresa
Hello Stu,
As Teresa says in her post – there’s a lot of free downloadable info’ guides (or can be sent to you in booklet form) from this website. “Myeloma and the kidney” is one such, and if you haven’t got it already – it’s well worth a read. Don’t know how far you’re into this nasty myeloma journey with your Ma, but if it’s her kidneys that are affected, one of the tests that assesses this is the eGFR (estimated glomerular filtration rate) test. It calculates (in ml/min) the effective flow rate of waste products through the kidneys, and is easily performed from the results of a blood test. Prior to MM my eGFR was normal at about 75 to 80 ml/min, but afterwards it took a bit of a bashing… The other confusing thing is that you might hear medics talking about eGFR percentages. In my case above they could call it 75% to 80% — it all means the same — and is interchangeable because the best eGFR is around 100 ml/min, so it’s got the same value as 100%! The other thing of course is that MM can be VERY different for different patients, and if it’s kidneys involved, it could be a lightchain MM (and there’s two different types of lightchains), or some other paraprotein problem, or some other underlying cause. And of course each patient’s kidney reactions can be different as well as their recovery rates, which are vastly improved once well re-hydrated. As the info’ guide says, “drink loads of fluids!” Very best wishes to your Ma, and keep us “posted” regarding her recovery. Good luck,
Peter
Thanks for all the replies,
She has been getting a bag of water put into her blood everyday and the weekly chemo has doubled up to twice a week. I think this is now her first full week in hospital with no real idea of when and if she will be getting out, but considering the condition she seems to be in good health, is however making a note about a very painful spine while in bed.
Thanks for the information, and yes it is acute kidney.
I have some more information just in, she has been classed as High Risk and is going to Southampton Hospital for some more aggressive treatment, they also said they will be giving her some palliative pain relief, it sounds really really bleak, she is shocked and upset but is remaining strong and still hoping for a remission.
Hi Stu,
My husband is being treated at Southampton. He had Acute Kidney Injury during his stem cell transplant and was in for 3 weeks, on intravenous fluids 24/7 but now all is normal. The staff are absolutely brilliant, they are the experts in our area and can access new drugs. Dr Jenner obtained a trial drug for my husband which worked when others didn’t. The palliative team are geared up to make sure your mum is as pain free and comfortable as possible, it does not mean end of life.
Its great to hear that your mum is remaining strong,
wishing her all the best,
Teresa
Hello Stu,
Medics sometimes (sometime often…) use an unfortunate choice of words. And as already mentioned ‘palliative”, in your Ma’s case really means to ease the pain and discomfort, and doesn’t infer anything more sinister. To put your mind at rest, I would ask her consultant exactly what the situation is, and what the interpretation of that unfortunate word is. Before MM, in my younger days, I used to do a lot of sports, and believe me I know how spine and back pain can echo through the body and completely bring a person down. So any drug relief (especially at the outset), is probably, and unfortunately, very necessary. Also the “at risk” label may be a temporary thing, until the MM treatments start to kill the MM cells, which in turn will help your Ma’s kidneys recover. Again if I were you I would seek clarity from the experts.
Very best wishes to yourself and your Mum, and here’s looking to her improvement over the next few weeks.
Peter
Hi thanks for all the replies,
She finishes her first cycle of chemotherapy on Friday and the current hospital she is in have said there is nothing further they can do to improve the kidneys so she is being transferred to Southampton for a more aggressive round of chemotherapy. The current hospital has no specialists in the field of Myeloma and they basically conference call this guy from Southampton when they are stumpped. So hopefully it will be a case of which I have read in previous posts and threads that when the Plasma count comes down the kidneys improve, and apparently the cheamo she is on now has brought down the cancer cells a little.
The treatment they have been doing on her kidneys seems a little of a little however, they took her away from the gout drug that was part of round one and had her on a drip and told her to drink plenty of water. Yesterday they gave her a pint of fresh blood which has made them make the decision today that the hospital can not do any more and to Southampton she goes.
Is such a shame as she is so house proud and has such a beautiful garden, hope she gets to see it again. I am sure it is not end games yet, but currently is bad news after bad news, maybe this is all part of the journey, you know a month ago no one was even talking about cancer and in the last 3 weeks it seems to be getting worse.
Sorry to be bringing some negative views onto the message board, I guess it helps to vent and all the messages have been supportive, everyone is truly amazing and beautiful people.
Stu
Hi Stu,
Southampton will crack on and get your mum back on her feet, patients come from all over the South to be treated here. Lots of people get problems at the start of treatment and I know it can be worrying but things do settle down eventually. The first few cycles felt like a bad dream to us but 19 months later its just how our life is now – slower and sometimes uncomfortable but still able to get on with things.
Our consultant told us at the very first appointment that if you had to have cancer then Myeloma is not the worst, its very treatable even though its not curable. New drugs are coming along all the time. My husband has applied for Ill Health Retirement and his support letter from the hospital clearly states that he has many treatment options available to him as time goes on.
We’ll be at the hospital on Tuesday for Dave’s 4 weeks check up and Zolendronic Acid – look out for us if you’re there,
best wishes
Teresa
Stu,
I wondered why my running distances kept getting shorter just putting it down to old age (63 then) and bone idleness. This delayed my MM diagnosis and I only took serious action when dialysis (yikes!) was mentioned as my eGFR dropped to 13 (normal is approx. 90). It appears the wiggly filter tubes leading into them took a bashing from excessive paraprotein, causing my short breath and fatigue as I was trying to redecorate. Six months after diagnosis I ran a half marathon ….. OK, so it was in double the time I used to run it in, but we made it. Then I underwent stem cell rescue and six months after that my eGFR is back up to a staggering 25!! The delightful renal team convinced me to undergo the stem cell rescue as I was very concerned about the effect the chemo might have on the kidneys – and they were proved correct. My goal is to reach eGFR 30 and make it into a lesser AKI stage .. phew! There is sadly not much prospect of further improvement, but that isn’t stopping me from another half marathon in October. Some fatigue yes, but my point is the figures can be frightening, but moderation in all things helps get you back to a reasonable standard of life. I am way better than I was at diagnosis!
Hi Richard, I too suffered kidney loss on diagnosis after chemo was told 16 gift was as good as it would get. When I harvested and had Sct it was around 25 and stable. I am now 4yrs 8 months since Sat and still drug free and my kidneys have very slowly improved to a stable 39! My hope is they will hit 40 but have been 39 for 7 months now. I think there is always scope for improvement.
Rebecca
Rebecca, Very encouraging news ….. I’ll swap you 2 eGFR for 4 years drug free any day!?
Over the years I have made many imaginary “what if” swaps! Have been more hung up over kidneys than MM(now 55yrs) – I was always told there can be no further improvement but whilst it has been a veeery slow climb I don’t Think I’m at the end of it. I corresponded with a guy who had similar improvement as the chemo free years went by and his friend SCT’d on dialysis and 5 years later he came off dialysis – so I always seek out the success stories and hope to follow! I too do a lot of exercise which I attribute to everything good that has happened. I do not try to alter my gfr etc by diet as life’s too short but am sure I could squeeze 2+ gfr from diet if I tried without bargaining with you! I was ecstatic when I hit 30 and remained at 32 for probably a year before gradually progressing at a snails pace again. Carry on running and am sure you’ll carry on improving – though not at the same pace!
Rebecca
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