This topic contains 18 replies, has 11 voices, and was last updated by 
Clucky 11 years, 7 months ago.
Hi,
My dad; Richard; aged 57, was very recently diagnosed with multiple myeloma and lymphoplasmacytic lymphoma (they couldn't decide). He has had three sessions of chemo of Bortezomib and Dex-something-or-other and that was put to a halt because of sickness; chest infection and further kidney failure.
He was admitted for kidneys working at 20%, which was raised to 25% but when he was sick on his birthday (July 17th) and the following day they dropped to 13%. He was discharged again this monday, after a short stay in where they raised his kidneys again, to 15%. He has been sick since discharge but thankfully he seems okay now.
It's been such a quick process from seeing him reasonably okay to being so ill. He will need dialysis but then he can't have chemo while doing so.
I guess I was just wondering if there's anyone else here who has had such bad kidney failure and managed to get, well, better? Or should we just face reality and that he isn't going to get better? What is the best option?
Also about dialysis, he has the choice of it being pumped in his stomach or in his jugular – which one is best (less dangerous/painful/etc)?
Thank you so much.
– Dee.
Hi Dee
Just popped in to say hello,and wish you well.
I cannot help you with this there are a few people on here who have had kidney problems,I think there is a chap in the west country,who plays in a band,I know he had SCT even though he was having treatment for kidneys,if i am right he went on to have a machine at home for his kidneys.So do not give up hope,look at back posting see if you can find it.!!!!!
I know what you mean when your Dad looks at other people who look great,and he looks awful,have the same thing with Slim at the moment, (but Hey) we all cannot look the same:-)
You have to raise your Dad from the pit he is in,I take it he has been told to drink plenty of fluids to clear his Kidneys,does not seem right to me,if he is not drinking and being sick,ring your helpline!!!!!!!!
Sorry I cannot be of more help.Love Eve
Hey 🙂
Thank you, that still helpful. He's not being sick at the moment, unsure as to why he was being sick anyway but hopefully he'll stop feeling queezy soon.
I don't know how to make him feel better because I obviously have no idea how he is feeling, or in fact anything about this cancer, really. He knows that we all care about him and stuff. I don't really know what else to say.
– Dee.
Hi Dee,
Thankfully I have never suffered with kidney problems, although my Myeloma, the Bence Jones (light chain) Myeloma, is supposed to be 'high risk' for kidney problems.:-(
In a nutshell there are two main kinds of Myeloma:
Heavy Chain: Measured by the amount of Paraproteins in the blood.
Light Chain: Measured by the amount of Kappa Light Chains in the blood.
Your Dad should have been told which type he is. (Light Chain is rarer).
I imagine that getting your Dad's kidneys functioning correctly will be the first priority.
Who attends the consultations with your Dad? They should be able to ask questions and take notes… your Dad will no doubt be slightly overwhelmed at this stage and will not be up to taking notes.
There are some excellent guide booklets available on this site… hard copy or downloads… which cover all the basics and quite a few of the advanced topics. If you want a chat with a professional you can ring Ellen or one of her staff… they are used to dealing with people who are new and confused… we have all been there believe me.:-|
Welcome to the forum, I wish that you hadn't needed to be here… but as you are, welcome and I hopw that we can help you with specifics as you go along.:-)
Dai.
PS. I believe Jo (Badger) a regular here had/has kidney problems… perhaps she will pop in soon and offer some advice.
Hi Di
My husband had renal failure with hiss myeloma and if I can be of any assistance let me know. You can have dyalysis with chemo if his kidneys drop to 10 or below.
Hi Di
The person I was thinking of goes under Clucky,so if you find the posting it should tell you a bit more about his treatment,its his wife who does the posting Eve
Hello Dee
I was admitted to hospital with pnuemonia and renal failure and what turned out to be MM i had cdt from the start and it was touch and go with my kidneys i did not have dialysis it may come in the future but at the moment my kidneys function between 15 and 20% I have been in good partial remmission since april 2009 as long as your dads kidneys are stable he should avoid diaysis they ajusted the dose of some of the CDT drugs so I didnt not have such a high dose of cyclophopermide sorry about spelling)
i was diagnosed jan 2009at the age of 61 the type of diaysis on offer is the one in the stomach which you have to do every day or one in a vein which is three times a week I would choose the one in the vein for at least you get 4 days off but I hope it never happens I have been fairly well in this time and have had serveral holidays some to europe
Love Jo x
Hi Dee,
Like Jo, my kidneys are working at about 20%. I'm on dialysis watch at the hospital in case they drop to 10%. I've opted for the dialysys you can do yourself at home. Basically you plug yourself into a machine when you go to bed and unplug yourself in the morning. That seems so much easier than the hassle of going to the hospital all the time. My myeloma is kind of under control – readings going up a bit, but so far so good.
All the best
Scott
hi Scott
glad to see you are ok did you have a good holiday in spain, is the golf going well. I chose to go the vein way if i have to (fingers crossed i can hang on) because they said i could be trained to used the machine at home so I though 4 days off was better for me
Keep well:-)
Love Jo x
Hi Jo
Yep, Spain was very relaxing and not too hot. Wouldn't want to be there now though. Must be about 100 degrees every day.
I'm still trying to play golf. Great things buggies and electric trolleys. Just hop off hit the ball and hop on again. I'm not very good but it gets me out which is the main thing. I'm like you, praying that I don't deteriorate to need dialysis for a while yet. What with everything else, I could do without that! Plus it would be a real hassle arranging to go anywhere for a holiday. At the moment I just have to worry about pills and injection supply and slotting it in between hospital visits.
Keep well you too
Scott
Hi Dee
How is your Dad?? How are you?
Love Rachael x
Hi Rachael,
My dad is doing okay. By okay I mean he's alive and his kidneys are stable at around 15% again (I think, anyway). He said "a bit rough, I suppose the word would be. Tired, I'm just permanently tired, which more likely means I need a transfusion. It's not very nice"
But yeah, we're all doing okay I think. 🙂
How about you and your mum?
Lots of love.
– Dee.
Hi Dee, my mum is tired quite alot too, they have to listen to their bodies and go and lie down when it tells them too. My mum is doing really well Dee which was hard to imagine in the beginning I hope it will give you some hope x Her kidneys were only functioning at 20% I think when she was admitted and have now just gone back into the normal range which is fantastic as they were unsure they would get back to that. I think my mum was more ill with the first cycle of Velcade because of her kidneys, she was readmitted on week 3 of first cycle with temp and terrible sickness she had to have iv paracetamol and sickness drugs and then a blood transfusion. Now though Dee she has just started her 3rd Cycle of velcade and is a different person, it doesn't effect her as much and she has been out and about with my dad and hasn't suffered no where near as many side effects. Her paraprotein levels have really dropped too so its looking very positive at the moment. I really hope this may help you, I know its very individual and can change all the time but I wouldn't have imagined this much improvement when she was in the first month as it was a very scarey time and I had never seen her so ill. I really hope your dad starts to improve Dee, lots of love and if you ever need someone to talk to I'm always around x xx x x xxxx
Hi Dee
I am now 58 and was diagnosed very late in disease terms 3 years ago this month. When I was admitted into hospital my kidneys were down to 11%. After two lots of plasma exchange I was told I would be on permanent dialysis.
I have been extremely lucky because my kidneys have recovered steadily over the past three years. I am living proof that renal recovery is possible. My consultant told me to drink 3 litres of water a day and I am sure that has helped.
The decision on the type of dialysis is very personal as both types have their pros and cons. I opted for peritoneal dialysis in the end because it can be done at home, but I was lucky to escape the operation as my kidneys started to improve.
Cancer treatment is not nice but manageable. I am also a carer and had to help my wife even though I have recently been on treatment. I say this to encourage you that a positive attitude and sheer determination can work wonders in terms of recovery. I really hope your Dad improves. Try not to worry – there is lots of support available for the asking.
Kind regards
Martin
Hi Dee, we haven't checked the site out in ages – sorry. How is your Dad?
Bruce was 63 when he was diagnosed with Myeloma – he went into hospital as an emergency (Oct 2010),(kidneys were failing, but we didn't know that at the time). They put a line, first into his groin, then into his neck for dialysis. He had 8 cycles of chemo (thalidomide & dex) – then a stem cell transplant (Oct 2011). He was having dialysis 3 times a week, 3 & 3/4 hr sessions.
Jan 2012 he was told he was in remission. Feb 2012 we started training for home dialysis (haemodialysis – 2 needles in the arm). Training went well, and we have been dialysing at home since May 2012.
If we can help in any way, info…anything, we're here.
luv
Clucky
(Mal & Bruce)
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