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Hello everyone my husband is 57 and was told he had myeloma just 8 weeks ago we found out after he was rushed to hospital after being constantly sick for two weeks we was told first that he had kidney failure and then a couple of days later myeloma. My husband has started velcade and is on dialysis is there anybody else who has got myeloma and kidney failure and does it effect the treatment you have and is the out come poorer for those with both my husband is still sick on most days does anybody else suffer from sickness I have so many questions can someone help me.
I presented with kidney failure due to Myeloma but was lucky enough not to need dialysis. Have his kidneys made any recovery?
Mike
No unfortunately they haven’t made any recovery and the more time that goes by the les likely that they will recover, even though he is responding to the chemo and his light chains are going down they also told us that he wouldn’t be able to have a kidney transplant because of the myeloma but he will be able to have a stem cell transplant it’s all very confusing.
When my husband was told he had myeloma he presented at thirty six thousand light chains does any one know if that is excessively high.
Hi Sandra
So sorry to hear you & your husband are having to deal with this.
Have you rung Ellen or any of the other specialist nurses on the Helpline ? They are very helpful & have been a great source & support for many of us. You can e-mail them if you prefer.
I hope this helps
Cx
Hi Sandra, Sorry you are here, MM is very difficult to understand and the important thing to remember is that it is a very individual cancer so when you read through literature etc always bear that in mind. If you go to the information section on this site there are lots of guides to help you understand this complicated disease. I was admitted with kidney failure (had been in failure for several months – diagnosed as labyrinthitis and a non-specific virus by my Dr!) An indication of its individuality is my light chains were 1120 and I went in with 5% kidney function and severely anaemic. I have read that “typically” when light chains get above 10,000 it is likely they will damage kidneys but for each person it is different. Your husbands light chains are high – the normal level of light chains you should have in your body is: Kappa light chain between 3.3 – 19.4 mg/l and Lambda between 5.71 – 26.3 mg/l. There are always kappa and lambda and your husband will be overproducing one of these – your Dr will know which type he has. These are the levels you are aiming for in your treatment. I was on velcade/dex for 8 months pre SCT – velcade is a good drug and known to be kidney friendly – which is why he is on it. I suspect he will get some increase in kidney function when the burden of the light chains have been removed but to what extent is an unknown at present. I was at 16% for several months and thought they wouldn’t improve – I SCT’s at 28 (18 months ago) and currently at 32 – 33% now. Never give up hope of improvement. I had my SCT in Leeds and was told someone SCt’d on dialysis and later came off dialysis. Generally, when you have light chain MM you tend to track the light chain levels as a measure to the extent of disease rather than paraproteins. With regards to staging (from your other posting) you can look it up and calculate from your husbands results but I believe your Dr is right that it is unimportant because with new drugs (of which velcade is one) being at stage 4 instead of stage 1 just means that you have more MM to get rid of with more body or organ damage but if you respond well to treatment then you have the same chance as a stage 1 person who does not respond so well to treatment – remember it is very individual. Kidney damage is always an added factor of risk – many chemo drugs can impact further on kidneys or you may have to have a lower dose which may not work as well and the risk of infection is ever present and can do more damage to the kidneys so yes it is less favourable but the important thing is how well you respond to treatment. Some people can get remission from the first induction drug but others may have to try different chemo’s to get to remission – that, I believe, is more important than where you started from. Do ring the helpline they can explain everything and you can ask them anything – they have a wealth of information and can help advise you what you should be asking from the consultants. This is all a huge learning curve and so try and take it one step at a time – don’t look too far ahead – concentrate on seeing how well the treatment goes – velcade is known to be particularly good for light chain myeloma and educating yourself on all things myeloma. Try not to look at a lot of sites as it is scary and you will come across survival rates that are out of date with the new drugs on offer today. I only use this site and the US Myeloma Beacon site – that is very informative also. Best wishes,
Rebecca
Thank you so much Rebecca you have helped me so much explaining things in a way that I can understand, and made me feel as though I’m not alone in all this, unfortunately my husband is just sticking his head in the sand and doesn’t want to know any information about his condition apart from the basics, but I’m one of those that needs to know everything the more I know the more I will be able to help him thank you again for getting back to me.
Hi C
thank you I will certainly take your advice and get the support I need to help me understand what’s going on, as the ten minutes we spend with the doctor at clinic using words I don’t understand is not helpful and is very frustrating you think they would try and help us understand things better, I think they should run induction courses for all new comers it would certainly take some of the stress away from feeling stupid because you can’t take it all in in the few minutes that the doctors give you thanks again x
Hi Sandra, this cancer is a huge shock to everyone and it is a natural reaction for your husband to not want to know everything initially – I left hospital with no literature and said I would ask when I was ready. I made a pact with my husband not to look at the internet (he did, however, but never told me of his research and when I was ready I took a deep breath and looked and grieved all over again. I am sure your husband is just concentrating on the now and copng with the daily hurdles and that is fine. Be careful not to push/offer information in him and let him come round to it all in his own time but have the knowledge there when he voices his questions/concerns with you. I think this is very important when you have a consult – you should make a list, with him, of what questions you want answering and stick to that- go at his pace. I secretly recorded my consults as I forgot a lot of things in the panic of the moment and it was good to play back and digest later. Read up on it so you can understand some of the fundamentals they are telling you and I would ask for a print of the results – this is your entitlement so don’t be fobbed off – this will give you all your bloods and light chain readings etc and it is useful for you to track at each blood taking session how your light chains are reducing etc – it’s a great boost when you see a downward trend. Note also that the best results from velcade are generally in the first few sessions and then the trend slows down until it plateaus – this is normal so don’t expect huge jumps for ever. This is a marathon. not a sprint, so there is no need to overload yourself all at once. I have found over time I like to research and keep abreast of developments etc for when I relapse but I find it much easier to do now as I am not in a blind panic. Take time to grieve because if this diagnosis and then collect yourself up and move forward with hope and optimism – you will find lots of stories that are not all doom and gloom and realise lots of people live essentially a “normal” life. this is a cancer of relapse and remission and advancement of drugs for it are increasing at a much faster rate than a lot of cancers. My advice to you is to take time to have “your” time throughout this, take the time to treat yourself – even if its that’s just a catch up coffee with old friends – you need to be strong and energised so taking care of yourself and mental health is equally important if not moreso. Your husband needs to see your reassurance that everything will come good and you are both strong enough to take whatever is thrown at you. Optimism is infectious and he will be feeling very fragile – as you are no doubt – but nows the time to take the lead for him – for a while anyway. I am sure you have been told also that velcade makes you increasingly tired and the steroids send you buzzing/agitated/ metally all over the place for a few days and then on a downer – I always felt very wheepy after it. It may help if you write in a diary a pattern of his moods/sleep etc over the cycle and then you can forecast the effects and have your strategies to cope with them. For example, on my down day I planned a treat to uplift me, at certain times I avoided social situations as I used to have 3 conversations at once and listened to none as tho I was on speed. it was funny at first but then on that particular day I had a quiet one at home! It is all manageable and doable the best thing is to recognise the patterns and work with them to minimise any effects.
Rebecca
Hi Rebecca
do you know at what level the light chains have to go down to before they will consider a SCT and also when do you know your in remission, strangely enough my husband is more upset about his kidneys than the MM, he absolutely hates going on dialysis and says it’s going to ruin our lives if he has to do it for the rest of our lives, when he first went into hospital they were working at2 percent and now 9 weeks later there at 4 percent at first the doctors were optimistic about them working but now they say the chances are very slim and from a medical point of view they won’t work again, from the very beginning my husbands biggest problem was the sickness and although doctors have managed to slow it down to once in the morning ( we call it his morning sickness ) he has to take six tablets a day for it and wear a sickness patch I haven’t come across anybody who suffered with sickness like he has, the doctors said it’s the treatment but he was sick before he started treatment that’s what he was taken to hospital in the first place. thank you for your help Rebecca I really appreciate it. Sandra x
To Sct you need to be stable and as close to the normal range as poss.IF this is not achieved with the initial chemo then another type may be added to achieve as low as poss numbers – perhaps 100 or less.THere is the option of home dialysis and have read of someone on this forum who does that and has adapted his life well to it. REmission is getting the light chains in normal range and plasma cellsin tbe bone marrow within normal – less than 5%.his bone marrow biopsy will reveal the level of plasma cells and thid will reduce as the disease levels reduce with treatment.
Ok thanks for the info I will keep you posted of his progress he will finish his third cycle on Monday and then we see the consultant on Thursday so hopefully I will have some positive news to tell you Sandra x
Hi everyone just wanted to give you a update on my husbands progress he is just about to finish his 4th cycle of treatment only two more to go the side effects are getting a lot worse but on a good note his light chains are down to 470 unfortunately the kidneys are not doing anything but we live in hope and pray every day, as I know if they would just recover and he could come of dialysis it would make him feel so much stronger and he would be able to cope with all this so much better. Sandra
That is a wonderful result for your husband’s light chains….stay hopeful as he is certainly responding very well to the drugs so far.
Carol
Hi Sandra.
I’ve just realised I replied to an old post of yours in the GENERAL forum doh!
You may get more replies and advice if you start a new thread in the TREATMENT forum.
Like I said in the other post I’m don’t know much about light chains.
The minimum requirement for SCT I was told was a 50% reduction in paraproteins as your husband is light chains I not sure at what level a SCT would be considered. However there are lots of other things that would influence the prospect of a SCT.
I have been reading on a Facebook support group of a lady who is just starting home dialysis maybe that could be an option.
Every day is a gift.
Andy xx
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