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Hello All,
I’m new to MM, and on my third cycle with Velcade, steroids and Thalidomide. Initially the MDT thought I might have serious kidney damage, so at that time they fixed me up with an appointment with a kidney specialist at another larger hospital, to discuss the possibility of dialysis. Subsequent kidney creatinine blood tests and flow rates have shown that the initial damage has rectified itself, and there’s no need for dialysis yet. Thank goodness! The consultant then wet on to give my wife and I some very useful information concerning the effects of paraproteins and lambda light chains on the kidneys, which we found very useful.
However, the thing is: the kidney consultant then said he sees lots of patients with MM. He has one 90 year old lady who has had MM for 10 years, has never had a stem cell transplant (SCT), and has had remission for the full 10 year period. But he added she is an exception.
I’m a 66 year old man, and he said that a SCT would be very risky for me. And irrespective of whether I had it or not – there’s a strong likelihood that at some point in the remission I would relapse. He then said that in his opinion and I quote him, “MM doctors and nurses are always full of optimism, but in my opinion the first relapse is on the slippery slope…” So the impression that my wife and I got was that after a relapse, the outcomes are not very good at all. In fact he added that if you had a relapse and had associated kidney failure, then was it worth having dialysis if you had only been given 3 months to live?
So – was he just being a bit pessimistic, or saying how it is? Does anyone know what the outcomes are after a relapse, especially if SCT is out of the question? Are they so bad that I should write a new will?
Peter L
Hallo Peter
Unbelievable! I would say completely ignore him and put your faith in a haematologist. Everybody responds differently to treatment and also there is a great deal of effective research being carried out. At the age of 66 I was told I was too old for a sct, now over 5 years later, on revlimid maintenance, I have barely detectable myeloma in my bone marrow and feel excellent. I am confident that when/if the myeloma becomes active again there will be a new treatment for me. All the best to you.
Annette
Thanks so much Annette,
Being at this early stage of MM, and just getting used to the terminology and the disease itself, I must say I get a little confused with what’s going on. But your post has cheered me up no end – and I’ll convey it to my wife who was a bit “shell-shocked” yesterday. Thanks again.
Peter
Hiya Peter, I tend to agree with Annette, listen to the haematologist. I was diagnosed at 67, had a stem cell transplant at 68. Had 26 months completely free of drugs, travelled to USA, Hawaii, Spain, Greece and over the UK. Lived life as one should! my pp’s were at 9 when I relapsed. My age now 71. I have just started on velcade, dexamethasone and thalidomide plus an assortment of additional drugs to counter infections and other problems that may occur. Pp,s have dropped to 4.5. The intention is to get the pp,s down to zero then onto a second stem cell transplant using my cells taken and stored from the first SCT.
My consultant says that the second SCT may or may not give such a long remission, they don’t know, as everyone’s reaction differs. If I relapse again there are further treatments available with more coming, my consultant reckons that she will still be seeing me when I hit 85 years age ( she’s obviously younger than me)
I’m sure your kidney consultant was trying to be helpful but I would talk to haematology. Does your hospital have a myeloma specialist nurse, a long talk with her/him would help. Also talk to the myeloma UK nurse over the phone and get as much literature from them as possible. Don’t know where you live but you will find a myeloma support group close by.
Best of luck with your journey.
Regards
Tony F
Hi Peter, Your consultant seems somewhat blunt without giving you any supporting information for his views. I got MM at 50 with severe kidney damage and they have recovered to a stable 30% gfr – I live life as normal on this. -went for SCt because of my age and it is considered to deepen the length of remission. The consultant told me there was a 20% risk of death with sct with kidney issues (presumably in case the chemo or subsequent infections wiped them out)so 1 in 5 chance. I have high risk MM – thought to be more aggressive – hence going for it. You will know now that we have a cancer of relapse and remission – until we have exhausted the drugs supply and when the cancer becomes immune to all the different drugs. I was told the average length of remission with an SCT is 2 years and without it up to 18 months. BUT we are not an “average statistic” and our disease and how we react to each type of chemo is unique to us. My consult ended with him saying “I am sat here like a bookmaker – some people we think will do well don’t and some people we think will do badly do well..hopefully we will see you in 7 years time talking about another SCT…but we just don’t know…”. So I guess this is where optimism kicks in and that haematologists see such individual results that mean you can’t write one person off and back another winner – because they never really know how our unique disease and body reacts. However, it is generally true that once you relapse the remission length becomes shorter and you cancer becomes more immune to previous drugs but there are a few drugs to try and a lot do well on a low dose maintenance drug which you continue with until it stops working and then you try another one – altho we do not have finite drugs to try. Your bone marrow biopsy will have been analysed to determine your risk factor also – your cytogenic profile. Relapse will always have a higher risk factor with kidney issues as chemo can effect them further (velcade doesn’t) and infections are much riskier. So, I think there is some truth in what he says but you have to put it in context of a very individual disease and body. I’m firmly in the corner of optimism – I was told my kidneys would not recover from 16% – they stayed there for many months but very gradually improved and then stuck at my current level but they do not impact my life and I exercise well etc – I have never seen a kidney specialist but the consultant who sct’d me said you can live a normal life on creatnine upto to 200 but your health will always be compromised by them. So my advice is to try and stay healthy by exercising, eating well (minimal red meat) and keep hydrated with 3lts of water a day. Best wishes,
Rebecca
Hello Tony,
Many thanks for your post – and the encouraging news that it’s not a bleak outlook after the first relapse. We (wife and I) were a bit shocked at the end of our meeting with the kidney specialist, but talking to our brilliant oncology nurse (have just comeback from Queen’s Hospital today for chemo), and reading the posts on this www; – we are beginning to put the issues into context. So thank you again, and I hope you continue to see your consultant when you’re 95 or older!
Best wishes,
Peter
Hi Rebecca,
Many thanks for your reply, and the details you enclosed. I think the one thing that I’m starting to understand (being new to this long journey) – that’s coming through to me loud and clear, is the variability of the disease, and how it, and the treatments affect a particular individual with MM. So, as you say, while the ‘average measures’ like length of remission are useful, it still all depends on the particular patient’s unique response, which is so difficult to predict at the outset. It’s a bit like trying to play chess blindfolded and not being quite sure of the rules, (who would be a bookmaker in these circumstances!). And in these circumstances, I think your advice is very good: lean towards optimism, rely on the hematologists and maintain a healthy lifestyle – as far as practicable. So thank you gain.
Very best wishes,
Peter
Hi Peter,
So much good advice and helpful information in the previous posts.
I am going in this week for a Stem Cell Transplant and hoping for a longer and deeper remission as a result. The Doctors do have to explain in great depth the potential outcomes for each step of this unwelcome journey we all have to take with a MM diagnosis. Which I have to say made the stem cell a challenging consultation to get through and very upsetting but necessary. I guess we all have to know what we are dealing with and make informed choices in partnership with the Haematology Team. Doesn’t have to be a pessimistic experience though because fighting the war against MM is a marathon and not a sprint (I borrowed those words from another forum member).
There is so much helpful information on the forum. Take a look at the thread in newcomers “How confusing is this journey” where I got so much helpful support/advice and information when I was first diagnosed.
I have also used the Myeloma UK helpline and would encourage you to give them a ring for a chat. Don’t underestimate the emotional and psychological impact of being diagnosed with a cancer and be kind to yourself. It is a tough time as you adjust to a whole new way of being.
Best wishes Karen
Hello Karen, and thanks for your post.
Yes, I’m starting to get to grips with MM – and it’s proving to be a “life-changer” to us, in terms of management, treatment and it’s future variability. I’m going to look at the “confusing journey” section now (haven’t done so far) and may well use the helpline as you suggest.
Many thanks again, and best wishes to you for the future,
Peter
I have to say that Renal Consultants do not figure highly in my list a competent practitioners. When my GP suspected problems but with no idea of what they might be, I was under the the “care” of a renal specialist. After a weekend in hospital for test I went to see him and he told me very bluntly that I had an incurable cancer, Multiple Myeloma. Being both alone and very shocked (nobody had mentioned any chance of my slightly high protein levels possible resulting in a terminal diagnosis) I was very quiet, he then went on to say (and I shall never forget these words)….
“Now is the time that intelligent people ask questions”
One day I hope another consultant returned that favour to him.
That was in 1997, I had a SCT in 1999 and am just in the process of going through a stem cell harvest for SCT no. 2 aged 64. Had 15 excellent years in between. Every persons Myeloma is different but Myeloma UK is always the place to get current and objective advice.
“Don’t let the b*****s get you down!”
Andrew
Hello Andrew,
Thanks so much for your post. And you’re living proof of long remissions. Well done fella!
I still can’t understand why the consultant I saw was so pessimistic? All my blood test results and kidney flow rates are very positive and encouraging, so I’m going to take all the good news and comment from your post, especially the last sentence, and keep it uppermost in my mind the next time (2 weeks) I see my next lot of doctors.
Incidentally, my wife also thanks you for your post and is very encouraged by it’s contents. Although, as you say MM is very individual – it’s great to get some info’ on very positive outcomes like your own. And long may it continue.
Thanks again,
Peter
I found our consultant to be very negative too. My husband had CDT which gave him 1 year’s remission, then 3 cycles of velcade and dex which didn’t work, 4 cycles of revlimid and dex brought his FLC down to 54 but consultant said, his words, we were in a very bad place, no SCT as he was refractory and he would have to think about a trial. We were both very upset at this news but when we asked another consultant at the clinic about a SCT she referred us to The Beatson in Glasgow and he had a SCT in May. His FLC are now 16 and we are hoping for a good remission. Booked a holiday to Ibiza next month and living life to the full.
If you aren’t happy with a consultant, ask for a second opinion. Find out all you can about myeloma and question anything you dislike or are not sure of. The nurses on myeloma.org are very helpful.
Maureen x
Dear Maureen,
Thanks very much for your post and it’s great to hear you’re on your way to the sun next month. Have a smashing time! Can I ask you how old your husband is please? The rather pessimistic consultant I saw said a SCT would not be good for me (I’m 66 and was in good health), but looking at the details of the SCT and the long stay in hospital, and the risks, I’m tending to agree with him on that particular issue.
Also, having just started with this difficult, variable disease, I’m rapidly getting to grips with some of the terminology. I understand that you can either have kappa or lambda FLCs causing the problems, do you know the type your husband had?
I will certainly start asking for second opinions as you say…
Have a great time in Ibiza, and continuing best wishes to you and your husband.
Peter
Hi Peter
My husband is 59 and has Lambda FLC. I do not think you are too old for a SCT as a friend of ours had one at 71. As long as your bloods are ok and you are fairly fit, you should be offered a SCT. Ian’s FLC were 540 when he harvested. Can I ask what your FLc are?
We are now under a different consultant and feel a lot happier.
Good luck with the treatment and let me know the outcome of the second opinion.
Maureen x
I think you definitely need to talk to other consultants. I’m 64 and undergoing the full SCT (yeahh… got full stem cell harvest over on 1st day and that was today!), None of these things are very pleasant but they are manageable unless they come up with serious reasons why it’s not for you.
Remember by having an SCT you keep all the other treatments in reserve for later use as (as far as I am aware) none of them are effective for ever
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