[brendParticipant]

Hello folks,
I was diagnosed in hospital in November and have been on Velcade since then. I will be starting my last cycle in a couple of weeks. Last time I met with my consultant he said my prognosis is very poor and because I’m such high risk he recommends a tandem Autologous transplant.

I met with some of the transplant team for the first time yesterday and asked how common is a tandem, the response went something like “We talk about doing them a lot.” Plainly one has to respond well to the first to get to the second, but I did no get the impression that they do that many…. is there anyone here that knows of how common Tandem ASCT is in the UK?

As they explained it to me once I finish on Velcade (VCD) I will then be transferred to the care of the High Dose Treatment team until they deem they are finished with the transplant team at which point I’m handed back to the oncologist…. Does anyone know if this is standard NHS practice or just the way it works here (I did ask the team but they did not know how it works in one trusts.)

I find this very frustrating because it means I will not have access to my Myeloma consultant to look at any maintenance options, trials etc etc until some stage later in the year and naturally I’m keen to have those conversations.

Thanks for reading, looking forward to the replies.
Brendan.

[rebeccaRParticipant]

Hi Brendan, sorry to see you here and unfortunately can’t really answer your queries – i have had SCT only but if you search for tandem trabsplant on the home page you will access previous discussions from those offered it and those who did it. You may also find it useful to discuss with myeloma information line as am sure they will know how common it is etc. i think it is not very common as usually offered to the younger/fit patients. What are your cytogenics that make you high risk? and does this correlate to how you have responded to treatment so far?
Rebecca

[brendParticipant]

Thanks Rebecca,
Re-reading my post, I may not have made myself clear. What was proposed was a tandem (back to back) Auto SCT – no allo element. Actually I was not aware of the “mini Allo” until I read it on here. So I have not discussed that with anyone.
It’s good to read other peoples stories but I’m not overly worried about the transplant(s) at this stage. Who knows if they will even happen ’till the tests and harvesting etc are done?

As I say what has me more on edge right now it feels like the only option on the table is to finish my Velcade, hope the transplants work out and wait for my light chain numbers to start going back up before we can discuss any other options. Set against the backdrop of an aggressive Myeloma with poor prognosis.

There is certainly evidence to show maintenance after SCT will give better outcomes but the transplant team just told me this is not funded. So I’m just trying to understand if other people faced this problem and if so what they did about it.

Thanks,
Brendan.

[rebeccaRParticipant]

Ok. I had the same worries also at diagnosis – i was 50 my kidneys took the hit and I had a poor prognosis re cytogenics 14:16 in that only a few light chains seriously impact my kidneys and is v aggressive on me. I had to fight for an Sct due to kidney damage and no access to maintenance as currently offered only on trials. This is my take on it all – we have a relapsing/remitting cancer and whilst new drugs are being made they are not unlimited – maintenance takes up an option in remission state and the same drug will be given as a treatment at some point down the line until it stops working. Whilst you are statistically high risk/poor prognosis remember mm is unique to the individual – i responded easily to treatment and am over 5 years post SCT drug free and living life as normal. If you read the Myeloma beacon you can find lots of stories that buck the statistics so don’t think what they are telling you will ring true for you – often how you respond to treatment is the best indicator. As with all things MM it is one step at a time and unpredictable – you will continue on a chemo drug until it fails snd then they’ll change it – you will have the transplants – the second smaller one being like a consolidation treatment – kinda like a big blast of maintenance all in one go. Then you will be in remission living life as normal with no clear future plan of treatment until relapse and then “what next” will be figured out dependant on length of remission etc. It is best to try and look at it one stage at a time only otherwise it will be very hard mentally. In time you will realise this is a marathon not a sprint and so the urgency of planning the future will wain as it is dependant on many “unknown” factors. MM, for me, was/is more of a mental battle than a physical one – so try and focus your energy on strategies in your control to live well with this. “Living in the moment” is often quoted and it is so true along with finding early on coping mechanisms that will work well for you – and your family.

[brendParticipant]

Many thanks Rebecca for a great post, I might say a targeted response ;). Great advice which I will do my best to take to heart.

I have light chain MMM. I have 14:16 and 17p deletion and q1 gain so my consultant was very clear that these three mean I do not have a marathon distance left to run. As you say time will tell, but it’s only natural to try and see what options exist.

It’s very heartening to hear you have responded well and stayed well. For my part, my kidneys went from marginal dialysis territory (12% or so) back to normal range right now (90+). My light chains started at 14K and have fallen to 200 odd – I do not know if they will go much lower. So I’m hopeful I will continue to respond well to treatment with minimal side effects.
If I can ask one more question, how are you monitored? Do you get blood tests or is it just a case of waiting for the onset of symptoms?

Thanks again for the reply. It means a lot to me.
Brendan.

[rebeccaRParticipant]

The 14:16 translocation is controversial somewhat re risk (at one point it was classified as standard) in that it aggressively attacks kidneys but does not necessarily mean it is aggressive to treat – as with me. Obviously my kidney function will hinder future treatments but I may have recovered them fully had I not been on the misdiagnosis route by my GP – but it is what it is. My light chains were about 1200 only and kidneys at 5-7% on diagnosis currently at 30. Velcade based treatment seems to be good for response but they will change/throw in something else if they cannot get your light chains as low as possible pre Sct. I am now monitored every 3-4 months now as my kidneys appear stable. Post sct think it was weekly/monthly then extending as stability sets the pattern. I have a barrage of blood tests that will give you full blood results, kidney function, kappa/lambda levels and ratio.

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