Hi Jillx,
thanks for your post. I’m sure you’re right in what you say.
Funnily enough, I saw my oncology nurse yesterday for a chemo injection and asked her if the light chains fell to within the normal limits (max value about 26 for the lambda LC), whether it qualifies for a ‘remission’. She said it would be up to the consultant, but added – that in all her years working with myeloma patients, – she has never seen them fall to zero!
I see the consultant next week.
Thanks again for you reply, and it’s great to hear that your Mum is doing so well. Best wishes,
Peter
Hi again Helen,
Thanks for the information. And the advice re: ‘individual responses’, which I completely accept, and I’ll use it ‘sparingly’.
Many thanks again, and best wishes for the future,
Peter
Hello Helen,
Thanks so much for your post. And I’m glad that my understanding closely reflects yours – that gives me confidence that I’m on the right lines at least.
I’ll get hold of page 38 of the guide (HDT/SCT), and see what it says.
You said that after the initial 5 month treatment (VDT), your Lambda LCs dropped to 291 – that’s brilliant! And that your abnormal stem cells dropped to 15%, (as shown by bone biopsies). Again, well done!
Can I ask how many biopsies you had for this, and were they taken from one area, or different locations?
I get the impression (from my hospital oncology nurse), that my particular team don’t use the ‘remission term’ now – they call it plateau (ing). I’ve no idea if this is a general thing, or just particular to my hospital. I’ll ask next time I see her.
Thanks again, and best wishes,
Peter
Hello again Andrew,
Absolutely brilliant that you’re so active between the harvest and the second stage of the SCT. Also the estimated timetable (which pretty much agrees with Annlynn’s earlier post). Can I ask how much remission you got the first time? And was this after your first SCT, or didn’t you have one?
Nearer the time I certainly will be speaking to the Myeloma staff. I’m just trying to get a broad sense of what’s involved at the moment.
Have a great time at the show – and when you get ‘aboard’ in the sun.
Very best wishes,
Peter
Hello Annlynn,
Thanks for your post. 17 days is not too bad. And it sounds as though you almost had a ‘fun time’ ha ha. But I take your point regarding the value of the SCT – I can see I’ve got some thinking to do. It’s just whether my general state of health and age (66) will cope okay.
Thanks again,
Peter
Hi again Sandra,
I’m going to have to change my laptop! I was about to post a detailed reply to you and lost the lot. Very annoyed, so if a very similar post from me pops up somewhere else – I apologise.
Speaking as a complete medical layman, what I understand from the various doctors is that MM’s light chains (LCs) are bits of para proteins (PPs) that get taken into the blood. The LCs can either be called lambda or kappa LCs. You can get either, but not both together. The LCs can cluster together in the kidneys and form a ‘cast’, which blocks the kidneys so they don’t filter properly. I read that about 20% of MM people get LCs only. I’m in that category and mine is the lambda variety.
My LCs were > 10,000, but now are down to 6 ! I had casts in my kidneys – but kidneys can recover and my flow rate has gone up to 37 ml/min, which means approximately a 37% efficiency. So tell your husband there is hope. In fact early on, all the doctors thought I would be on dialysis forever, it was only after treatment with Velcade, dex and thalidomide that the improvement was seen.
You say your husband’s kidney function is 8 – I’m assuming 8% ? I understand that 10% is the magic number (from the kidney specialist) – above which dialysis (long term) may not be required. So if the SCT provides this figure, or greater, dialysis may not be required.
You asked about my side effects: Sometimes they are exceedingly difficult to cope with. The steroids are the worst. They make my ankles and feet swell so much it looks like elephant’s legs. The fluid retention also goes onto my chest, and I get very breathless just doing the simplest of jobs – and have to rest. It’s a damned nuisance. I also get the shivers and shakes, but I’m not sure what drug (or combination) is responsible. That’s not saying all days are bad. I reckon I get 3 to 4 reasonable days a week, but the rest are rough.
You also ask re an SCT. And frankly, I’m not sure. I’ve had different professional opinions related to this, for my particular age and state of health. I’ve only had 3 treatment cycles so far, but it’s a question that will be raised sooner or later I fear.
I’m trying to find out the ‘average’ remission periods for those having SCTs and those not. But as I’ve now found out, ‘averages’ are a bit of a nonsense with this unpredictable, variable disease.
I do hope your husband improves quickly, and the sickness stops. Please tell me how he’s getting on. All my best wishes to him and yourself. And please check out all the medical things I said above with one of your medical professionals in case I’ve got anything wrong.
Peter
Hi Andrew,
Thanks so much for your post – and all you say makes a lot of sense to me. Do you know how long you’ll be in hospital (do you get a break between harvest and the full works?) for the whole thing? Has your consultant(s) estimated your likely remission time after your successful SCT?
Peter
Hello again Maureen,
Thanks for your post. I also have the lambda variety of FLCs. And they’ve dropped from a massive number down (in their thousands) to just 6 ! (with Velcade, steroids and thalidomide).
One of the problems regarding SCT, for me, is that it will be in a large London Hospital (which is in special measures), very difficult to get to for my wife visiting, and from what I understand – it’s a long time in hospital for replacing the stem cells, after the massive chemo’ doses to clear out the ‘nasties’ – which itself has got a lot of risks. I’m sure they will offer me a SCT, but I’ll need a bit more detail, at the moment before I think I’ll take it on.
Peter
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
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
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
Sorry about the two posts – I forgot I wrote the earlier one.
Peter
Hello Sandra,
Sorry to hear about your husband. I was diagnosed with MM two months ago, and it was a complete shock to me (and my wife). They only discovered it while I was in hospital with severe food poisoning from eating some dodgy fish in Dorset. My consultant was convinced that my kidneys were damaged beyond repair, because of the de-hydration caused by the poisoning and the fact that the nasties (lambda lightchains) being produced by the MM were more than 10,000.
So he fixed my up with an appointment to see a kidney specialist in the Royal London Hospital to discuss the options for dialysis. Prior to the appointment (I’ve now had 3 cycles of Velcade, dex and thalidomide) – my kidneys did recover. They now have a flow rate of 37%, so nothing seems to be impossible with this unpredictable disease. Also, my ‘nasties’ – the lambda light chains have reduced from that massive figure to just 6.
I still attended the appointment with the kidney man, and he told us that the base-line figure for dialysis is 10%. So, I think if your husband, with the right combination of drugs and good care could possibly achieve this flow rate or better – then (if I understand the kidney expert correctly) – there is no question of dialysis, certainly not in the long term, and that’s one thing less to worry about.
All the very best to your husband and yourself,
Peter (aged 66yrs)
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
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
