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Please can you tell me how low paraproteins have to be befor a Sct
Usually within 10 per cent of yr current para protein, so if for example its 50, the they will do it when it comes down to below 5. Hope that helps.
They didn’t talk to me about percentages, just said when I had completed 6 -8 cycles of chemo.
If you have a Nurse Specialist perhaps ask them although the previous answer is very clear.
Kind regards
Karen
Hello there,
I have a similar question but regarding the ideal level of free light chains (Lambda) before starting SCT as my type is light chain myeloma.
In January I was started on Lenalidomide and dexamethasone as I began to relapse in June 2015 after Padimac induction which completed in December 2013. I asked if I could have Velcade which I thought had worked well for me first time around, but my consultant thinks it could have provided a longer remission.
Lenalidomide + dexamethasone has shown a much slower flc drop rate. When treatment started I was told I would get 2 or 4 cycles depending how I responded. After 2 cycles levels had dropped from 430 to 168. Next FLC measurement will be made at the end of cycle 3 (fri 15th April) but my consultant wants me to start sct in 1 to 2 weeks, which would mean starting sct regardless of FLC results after cycle 3. I asked if I should continue with cycle 4 but was told my name had reached the top of the SCT waiting list and my FLC levels may not get to normal range anyway.
I’m still in shock at the suggestion as I’ve read and heard at Info days that ideally FLC levels are best to go to normal before SCT to give hope for better outcomes. I also asked if I could get another drug added in to cycle 4 to improve my chances of reaching normal but was told this would affect my blood counts so not attractive.
Would love to know if anyone else experienced this type of decision pre sct or any other approach. I’ve had a few very stressful days and nights since the above plan was put to me.
Thanks for any info,
JanT
Hi Jan, I would ring the helpline to discuss this one – my understanding is a 90% reduction from what you set out with is optimum and as near to normal as possible before SCT. In the US they really strive to get to the lowest numbers pre SCT but I feel our treatment regime is sometimes lagging behind. I could have got lower by adding to velcade and dex and whilst my consultant kept saying he’d consider it he didn’t. When I was harvested the cyclosophamide (which I wanted adding) thankfully did reduce my numbers to near normal but more by luck than management I think. When I went to a different hospital and spoke to the consultant doing my SCT this question about numbers he kinda just put it down to individual judgement. In the US they feel you have the best chance of a longer remission if starting off at the best point – I don’t know if this is proven to be correct or if it is to do with their payment of treatment – either way I would push for answers/2nd opinion until you are happy. This is your health/body so you have the right to know the ins and outs of their decision making process and it is their duty to explain their decisions to you. I say this with the benefit of hindsight as I didn’t question and after it was all over and I researched with “less pressure” on me I wished I had been much more assertive for answers on lots of things but, having said that, there is so much pressure on you pre SCt it is hard not to just get swept along by this roller coaster ride…the what if questions come a bit later when you have more time to breathe and reflect on it all. Good luck with it all. Rebecca.
Hi Rebecca,
Thank you for your post which I definitely found comforting. I was harvested in Feb 2014 so won’t have cyclophosphamide now to reduce FLC further. I really want to change the plan and delay SCT start to give best possibility for long remission but it may not be easy. I haven’t heard many stories of patients influencing their care plans at my hospital. I’m not sure how many try. My Consultant’s plan originally was for Lenalidomide maintenance following SCT but I said I didn’t want maintenance – 1st relapse and desired a drug free period. They mentioned then Consolidation following SCT instead but I expressed fear of inreased risk of secondary cancer but I’m not sure that would sway. It is like they don’t necessarily strive for best SCT outcome, planning initially for maintenance. An awful lot of patients at my hospital seem to be on long term maintenance, and particularly Lenalidomide. I’ve learned this from chatting to people in the service’s waiting area.
I will take your advice Rebecca and contact the help desk. Thank you again!
Best Wishes
Jan
Hi Jan, I personally think consolidation after SCT for a short period is what I would have liked – all things being equal and they do this in the US ( 3 months or so?). Having said that your body is very low after SCt a further hit, for me, would have been difficult. I was not on a trial so ineligible for maintenance – I spoke to Prof Jackson at Leeds and he said (altho he may have been being kind as I wsn’t getting it!) that having maintenance, in a sense, is using up a treatment option before you really need it. We do not have finite drugs/combo drugs to try (like in the US) so there is much sense in this. I am high risk cytogenics so in the US I would automatically have been given it but I am now 2yrs 4 months drug free from SCt and wouldn’t trade in a drug free period unless there was overwhelming reason to do so – quality of life rules for me. Personally, rushing into an SCT because you are nearing top of the waiting list is not a good enough reason and perhaps, if your consultant sat and explained the thought process this may be only a small part of it. I finished my treatment in the July and due to hospital admin etc I ws put on the waiting list September and actually had it over Xmas – My consultant at my little hospital was getting quite tetchy about the delay because velcade is not really known for its long remission status. I had to phone the hospital every day to see if there was a bed but think leukaemia trumped myeloma and my hospital had to try and exert pressure in the end to get me in as they were considering putting me on maintenance as an interim. Good luck
Hi Rebecca,
Thank you for your very informative reply. I plan to seek advice from the MUK helpline tomorrow and then call my consultant.
A bit of background: During my 2nd cycle of Lenalidomide and dexamethasone I got a high temperature and was admitted to hospital. After 2 days in, 1 day at home and 6 days back in with high temperature again, they admitted they couldn’t source the infection and thought it may have been viral. I had no other symptoms other than high temp. Unfortunately it meant I was put on 2 courses of strong Antibiotics probably needlessly. Anyhow, over this time I stopped len and dexamethasone, so had 11 treatment free days in the 2nd cycle instead of 7.
So, following from the above, the other reason my consultant said to start sct now is that the drop in my levels has slowed down. I’m concerned about this conclusion given the break in treatment and infection, and that my latest FLC measement was from 3.5 weeks ago and 2 days after leaving hospital. I’m going to try to speak with my consultant tomorrow to clarify. So after 4 days of being quite stressed, I’m a prepared to try to improve the situation . I’ll update with how I get on.
I totally agree with Prof Jackson. I’ve heard from a very reliable source that triple treatments including Lenalidomide have shown good results in US clinical trials so that will probably be heading our way in future.
Thanks again Rebecca and so glad your SCT has been such a success. I too am high risk cytogeneticly speaking – so very encouraged by your outcomes.
Take care,
Jan
Thanks Jan – always remember with high risk cytogenics that it is still an “individual” disease and so how we each react to it is also very individual. I have heard of a high risk case in US still in remission 10 yrs plus which proves this point/glimmer of hope! My understanding/feeling of it is I must have only had a small % of the HR translocation. I went into SCT with 0.3% bone marrow and came out with 0.3% – didn’t budge. This clone was not initially the dominant one but on first relapse that’s when I’ll know about it as the stubborn clone will no doubt now be the dominant one – but we will see. Whilst I had a small amount of MM it really damaged my kidneys so getting to SCt meant going to see different consultants to see if they were prepared to take the risk (I seemed to be the minor “bit” player in the risk taking!!) I was extremely well going into SCt and would have liked to SCT at first relapse but Prof Jackson s argument was that next time my numbers may not go down as much (MM increasing resistance, presumably from the HR clone being more dominant then?) and my body may not be in as good shape due to more chemo (by body for me they meant kidneys I think). Velcade is well known for quick drops in numbers even for HR cytogenics but once its plateaued that’s as good as it gets – I had 8 months of velcade (max time) altho after 4 cycles it plateaued and didn’t budge again until harvesting. I believe my consultant kept me on it longer because I was trying to get to SCt and having to have 2nd opinions at different hospitals and, therefore like maintnence as an interim. Perhaps they know you have plateaued and see little bodily benefit in continuing the route pre SCt – however, because of your break you may perhaps be able to compromise and see another cycle through but, if it has plateaued, moving on may be best. I don’t consider my SCt to have worked in that my light chains and MRD did not alter really after SCt but I was only on velcade/dex which is not known for long remissions typically so perhaps it deepened my response or .. perhaps it didn’t ( I managed from July to xmas SCt with no increase in numbers so I may have been one of those who bucked the trend anyway). This is all so “unscientific” and “unknown” it can be quite frustrating as now on relapse I will be offered another SCt on the basis of the success of my 1st, which I personally think it wasn’t, but no-one will ever know! Your concern for secondary cancer, which I think is just proven for revlimid and then counteracted by the increased survival chance by being on rev maintnenace is also valid with the high dose melphalan also I think. My immune system rarely hits the normal range and my numbers have been consistently low since SCT – my consultant attributes this to long term effects of the melphalan! so I guess I am always at risk as my immune system is not up to scratch to fight anything off but I just concentrate on one cancer at a time! Good luck with it all, the imponderables are so frustrating but I do feel your consultant will actually give you more in depth reasoning if you push. I think consultants are used to the vast majority of patients shaking their heads in agreement with whatever they say and therefore offer minimal information for ease – unless pushed. Having a second opinion was really good for me because the consultant purely reviewed my case with no holds barred and in details. In fact, my little hospital consultant ( who I wouldn’t swap for the world as he is lovely) withheld my cytogenic profile and clearly told me I had no translocations and so it was a shock when my 2nd opinion ran through my bone marrow profile and agreed to SCT me purely n the basis of my poor cytogenics. Due to my kidneys he also bluntly told me there was 20% risk of death but then proceeded to talk through other scenarios if I didn’t SCt at this point. It was most enlightening/informative to say the least. Good luck and let me know how you get on x
Jan
My husband has free light chain myeloma. He didn’t respond well to velcade nor revlimid. His FLC were 168 and I asked if he could have a SCT. One consultant said no but another disagreed and he had his SCT in May 2015. His FLC were then 500 but he then had cyclophosphamide and melphalan. He has been in remission since then and doing very well. If your FLC have plateaued or are rising I would go ahead with your SCT.
Maureen
Hi Jan
My consultant thinks we should try to get the light chains as low as possible, however long it takes. It is difficult to understand why yours thinks that a bed in a hospital is good enough reason to do SCT even if your light chains are still dropping. I was on Lenalidomide and Dex for 8 cycles, and looking back could have been even longer just to make sure that I have plateaued. Anyway, most likely SCT and consolidation gives the same result as longer treatment and SCT. Good luck
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