This topic contains 12 replies, has 6 voices, and was last updated by 
eve 9 years, 11 months ago.
This week I had a meeting with one of the top MM specialists in Germany for a second opinion. My SCT wasn’t a total success and the medics wanted to carry out a tandem SCT. Well after explaining that Velcade had only managed to drop my IgG level from 52 to 36 and that the SCT only managed to drop them down to 23 he agreed with me that a second SCT might not be a good idea. What he did point out was that the calcium levels in the blood are normal and that a raised IgG level at that level by itself is not such a major problem. I have had 3 full blood tests since SCT and the IgG has stayed level at 23. So the medics are treating it as been stable and so it’s wait and see now with monthly blood tests. If the IgG gets worse than it’s back to Chemo I’m afraid.
Hi Dick lets hope that things remain stable for as long as possible, it is great that you have such a good consultant to support you, lets hope that the chemo is a long way off, best wishes to you and your family love San X
Hi Dick, sorry it’s not been as successful as it could have been but has got you to “stable” – we tend to pin in all our hopes on SCt and yet I think it’s only about 20% who achieve CR from it. I spent literally a year trying to get to SCT without actually thinking beyond it – SCT was my goal. I went into SCt with IGG lambda light chains at about 60 and there was no change after SCT until the 100 day test and then it had dropped to 7 with kappa at .4 so very low but ratio still out of kilter – consultant says he doesn’t know if its active at such a low level (tho’ he hates to tell you anything that isn’t positive). I am being tested every 2 months now so we will see if it goes down more or remains stable tho’ consultant is calling it remission – guess maintenance when it rises. I think you are right not to do a tandem I have done a lot of reading whilst off and in the US they like you to be in CR before SCt and some say anything above 50 light chains make the procedure “iffy”. A Uk guy I was speaking to did not achieve 2 yrs from his SCt and was told he had to be in CR to have a second one – so there must be some truth in it – altho’ we seem to just have enough treatment to get to an acceptable level to SCT. I have never been given my IGG figures only light chains so I will ask at my next consult. I guess if you have no symptoms you can remain drug free and stable for a long time. Watch and wait is something I’ve never thought about before but I guess it’s only when its blood test/results that it makes you think more. If my levels remain the same in June I am going to ask the consultant if I can just have the tests but not go in for the results and wait for them to get in touch when they need to. I feel great now so don’t want to keep analysing numbers – I have already done that and predicted my relapse – mimnimal residual disease at .3% (no change after SCT), poor cytogenics, no maintenance… but somehow it doesn’t bother me so much now and I just think “who knows” I feel great so what more do I need to think of. What we cannot alter let’s ignore and enjoy the time until we’re not allowed to ignore it anymore I say. Hope is independent of the apparatus of logic and I have a lot of hope – misplaced? who knows? who cares? it works for me.
Best wishes,
Rebecca
Hi Rebecca,
Interesting that your consultant hasn’t told you your IgG figure. Are you MM type IgG- Kappa? It may be that you may be type IgA for example or don’t secreet proteins and so they base their staging on the light chains. Watching and waiting is along the lines of no news is good news. I still have the bone pain, the breathlessness after climbing a flight of stairs and the chest pain everytime I yawn or sneeze so I know MM is still very much there but I’m still here and still functioning most of the time so that is good. Like we all have to, you learn to adapt and we are all generally hopeful I believe.
Hi dick, I’m IGG Lambda but have never had much of a M-spike (diagnosed at 1120 light chains) think it was .6 at diagnosis but not sure as they don’t really look at that. My consultant is lovely but likes to just generalise but will give specifics when asked eg at 100 day BMB result he just said he was happy with my bone marrow – when pushed he looked and SCt had made no change to 0.3% but I’m sure he knew that all along. Early on I asked him my cytogenics/risk – specifically asked if I had translocations or deletions and he said no I was just standard. When I went to the other hospital they went through them with me! I did feel then, tho that my consultant had been sort of right to withhold this info as at the time had very little kidney function and had enough to worry about adding something else that I can’t influence I guess is a bit unhelpful mentally and may have pushed me over the edge. Anyway, now I know how our consult works I ask for specific no.s and get them – obviously I’ve never asked for the IGG so don’t get it! but I presume it pretty much follows light chains? if my light chains at 7 then presume the IGG will be in range? Not really sure I care at the moment feel I’ve done my bit with SCT and don’t want to dwell on anything too much until I have to – I am very lucky not to have bone damage as that is my worse fear (apart from the obvious) as my interests etc are exercise related. Have you had the BMB result yet – did it reduce it any? I am glad that I did the SCT as if I hadn’t (and my husband didn’t want me to do it cos of kidney risk) I would have always wondered “what if” and that would be mental torture for me.
Hi Rebecca,
I haven’t had a BMB. Here in Germany they want to do it at 4 weeks post SCT, I said no and pointed out that in the UK it is done at 100 days. My consultant said that in the UK they do it properly! So it has been delayed. I still haven’t one because my blood indicators are preferred by my consultant as she believes they give a more accurate picture. The chap giving the second opinion and my consultant both agreed with us when we pointed out that the BMB only gives a snap shot of MM in one particular area of the body and that an MRT would be a more accurate indicator, so there we are. Unfortunately there are people like Slim who don’t excrete paraproteins so the BMB has to be done.
I’m the opposite to you as well, I have no kidney damage but some bone damage, I believe the bone damage is limited because my work was so physical, it involved lifting upto 6 tonnes of product a day by hand so before diagnosis I was physically very fit. I suppose because of the physical work I drank a lot anyway and so didn’t have any kidney damage. A lot to be said for having a physically hard job.
Hi DickB
Sorry your results aren’t as good as you’d have hoped, but the advice you have had so far sounds reasonable.
And Rebecca… I too have no M spike, only IGA lambda light chains, when I was diagnosed they were at 690 only but I was dreadfully anaemic with 40% myeloma on bmb.
My response to induction treatment was quick and I went into SCT with 4 months remission behind me. I was in complete remission for about 14 months when it slowly crept back, light chains at 155 when treatment started again a year ago.
The plan is to leave me for the time being and see how long this remission lasts. 5 months so far, no SCT planned yet as the last one didn’t last long and I had a horrid time after it.
I’m not hung up on the numbers any more…. It becomes too invasive and I found it messed with my head a lot, I will get them next week … It’s soon enough.
One thing I have now come to realise is that my future may well be one of 6 months on treatment then some months off, until the drugs stop working. This has taken me a while to come to terms with, and I still optimistically hope to have much longer before needing treatment again.
You just have to pack as much living into the time off treatment as possible.
Helen
Hi Helen, I have read how if you respond quickly it comes back quickly – in the 1st month of velcade I came down from 1120 to 140 but then it took 7 mpnths to get it to around 60ish – would this be classed as responding v quickly? And on the subject of hair again….I have heard how the kinks and curl go in time (mine still too short to know if it will do this) but does it ever revert to its normal colour in time? – finding going from blonde to black a tad too much of a change.
Hi Rebecca,
I believe that a steep drop at the start of Velcade followed buy a flattening out of the curve is normal. As for the hair, I have a simiar thing, I was before chemo blonde/light brown depending on sun bleaching. I still can’t work out what colour I’m going to end up. My stubble gives me a black moustache and blonde beard.
Hi Rebecca
I’ve not heard that but it’s a possibility, my consultant is thinking I’m really only responding to the steroids :(, hence the rapid drops and quick return. Hey oh it’s just wait and see! I went from 690 to 60 in one cycle and was down to 12 after 3 months. This time it was 155 to 40 in one go! The ratio has never been right until January this year.
As for the hair… Well mine came trough very curly and one black to one white… But very very dull, hence the colour, now , underneath my ‘surfers’ mop it is brown again, I lost over half my hair this last round of chemo… Cyclophosphamide effect, more brown hair has returned though.
Dick, when you get your hair back you could be 3 tone!
Helen
Hi Dick
Haven’t been on for a while. Sorry to hear your SCT didn’t last as long as we all would have hoped. At least your Consultant seems to be ” working with you” which is encouraging. Do hope the drugs get, and keep things stable.
All best wishes.
Mavis
Hi Mavis, thanks for that, that’s the trouble with MM, it’s a real lottery.
Hi Dick
After 3 years plus on this roller coaster and learning an awful lot on the way,plus hospitals have very different ideas about when treatment should begin plus how test are interpreted !!!
We have come to the conclusion ,when you have your BMB have bloods taken before hand if you need any bloods or platelets have an infusion ,then they can see in detail how effective they are on slides,plus have an MRI Scan around that same time,it will give a full picture,of your Myeloma.
I feel this wait and see policy is ok on someone who will not be going forward for SCT,but you are relatively young,with a young child,and should be looking at a back to back SCT.
Why don’t you get in touch with Jet,you will find her on UK Myeloma via Facebook!!!! There is a separate group of people who have back to back SCT,Ellen on here should also be able to help you get in touch with Jet,as she is in contact with her,do ring Myeloma UK free number.
At your age you should be looking at hitting it hard while your immune system can take it,SCT then a good period free of treatment,3 years of constantly swallowing tablets not only knocks your immune system,but causes other problems along the way,you know yourself having liver problems.
My own believe is they now have enough knowledge to do individual treatment,as they know exactly what type and individual problems people have from BMB,they waste a lot of money not doing individual treatments for patients,this causes problems for the individual people eg immune system,liver,kidney problems,which effects the quality of a persons life,and it’s what patients die from not the Myeloma.Also as the Myeloma progresses,it changers,eg non Secretor or high risk,
Everyone has to weigh the risk of Back to back SCT,lots of people try to put ordinary SCT off until necessary,but if the original SCT has not worked,you do have to contemplate tablets for the rest of your journey with all the hazards they bring,or a chance to be free of no treatment like Jet. Food for Thought,I wish you well Dick.
I do not come on here very often as so difficult to get in on my I pad,so I use UK Myeloma on Facebook which is not an open site.I do miss many people on here,but when you get to Slims position there are more lows than highs on this roller coaster,but I do look in to see how you are all getting on.good luck to you all,it’s time to go and smell the bluebells again.Love Eve
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