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This is my first ever post on the forum. I was diagnosed in Aug 2014 and due to my youngish age (now 48) I opted to go on the Myeloma XI trial. I had CCRD for 4 cycles responding very well with levels of over 2000 dropping to virtually zero after 2 cycles then to nothing.
I had my stem cells harvested and had an auto SCT in February 2015, was also given Revlimid as a maintenance treatment and until 2 days ago was told I was in complete remission. However it appears the MM has now broken back through with my levels now at about 250.
I WOULD LOVE TO HEAR SOME GOOD NEWS RIGHT NOW!! It really feels like I went for the gold standard treatment and got a relatively short period of remission. Now I am waiting to hear what my options are but I feel lost and confused, almost worse than when first diagnosed. I guess I put too much faith in SCT and now want to know what I can expect or hope for.
Feeling very frightened and low and my wife having been a pillar of strength is really down so I thought it best to seek some support and information on the forum.
Thanks for reading this. Any replies welcome and suggestions for coping gratefully received.
Buzz
Hi there,
Like you I was in my 40’s (just a few month’s before my 50th) when I had my diagnosis and later had the auto SCT which also turned out to bit of a bit of failure. My IgG dropped from 36 to 24 only but stabilized enough for it to be left alone. It wasn’t even classed as remission by the medics. Unfortunately after 14 months it started to climb back up and I have been having Revlimid since.
I know how you feel about the SCT, the medics have asked me if I would consider an allo SCT to which I replied the first SCT didn’t work, why should I have another. Now what my consultant said is that there are some new treatments that they are expecting to be licenced soon and that they may be worth a try when Revlimid stops working, as we know, it will stop. I ought to point out I live in Germany so the projected new licences might be slightly different to the UK’s
I think the message is that there are still options and that while others hold SCT as the pinnacle for treatment there are other treatments that suit others better. There are some on this forum who have achieved remission without SCT and there are others who won’t be given SCT because they haven’t shown a big enough improvement. It really is a case of standing up, dusting yourself down and moving onto the next treatment. Unfortunately you will get more knockbacks but those on the forum who remain optimistic and positive I think fare better. MM will always be there but it’s a case of not letting the bugger get you down.
Richard
Richard
Hi Rob
Many thanks for your reply. It has helped me put a bit of perspective on the return of the myeloma. I think it is now time I started to try to understand this disease a bit more and also what my specific type is.
Having followed the Myeloma XI trial and got through it relatively well and then had the SCT and again responded well I gave very little consideration to what would happen when I did relapse so I am now trying to work out what my next course of treatment might be.
My consultant seems to be implying I need to move on to a different treatment soon as the last 3 light chain readings were 26 then 98 and now 250 over the space of 3 months. As I am on the trial I am tested every month so I guess we will need to see what this months are.
So many questions! Fully understand you are not an expert but if you have any advice as to what I should be asking that would help.
4-5 months Post SCT I was out on my bike doing 60-70km on some rides! I am now working full time and my energy levels are not quite as good but I can walk for as long as I need to and have just spent 8 hours going around Harry Potter studios with my kids last week!
Thanks again for your reply, would be very grateful for any more insights.
Buzz
Morning, before commiting to any new treatment I think you need to do your research as to the risks and side effects. Read trial reports, research documents, anything written by professional bodies. There’s plenty available on the internet, some are quite old though. One of the reasons I rejected an allo transplant was because the risks of mortality range from from 1 in 5 to 1 in 2 dependent on age, fitness, level of MM etc. (Source http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3017399/. A bit old maybe but worth noting. I really don’t like playing Russian Roulette with my one and only life.
I would also suggest to keep as fit as possible, I believe there is a link between the level of fitness and progress of the illness, there are a number on the site who try and do some exercise.
Keep working, it gives you something else to think about and is great for self worth. Unfortunately my stamina levels dropped dramatically, I have a part time job now and at the end of the week I am totally worn out but I won’t stop working.
I would also suggest getting a second opinion.
I can’t think of anything else for the moment, but please feel free to post me if you want anything.
Richard
Richard
Many thanks for the quick response.
Agree with the working and the exercise! Helped me no end so far.
Will keep you posted; hoping for an update in the next few weeks. Given the rapid rise in my light chain numbers I’m expecting to have to make a decision fairly quickly but will try to get as much info as I can beforehand.
Have a good weekend!
Buzz
Hi Buzz, Sorry to hear about your situation and I guess you may be one of those where it is easily treatable to a good response but comes back very quickly. We all pin our hopes on SCT being “it” but it never changed my minimal residual disease etc in any way – I am 2 yrs from SCT – so did it deepen my response? who knows as there is no test to determine this. In your shoes my priority would be to look to going to some top people for second opinions/trials – this helpline will tell you who/where they are. If I were you I would focus on the fact that they have not found the treatment compatable with your MM yet but there are a few more combinations to try and this could mean all the difference. Jet Black (blogger) relapsed quickly from her SCT but is doing well from her allo – remember, you are young and have many options. In the meantime, whilst work is a good distraction make sure it doesn’t wear you down and take “breathers” if necessary to make sure you stay at your optimum health. I think you have a tough time ahead based on your results – but it is all still there to play for – so acknowledge this and actively seek out good coping strategies that will get you through the doubts/down days – flex your mental muscles as much, if not more, as your physical muscles – consider yourself an athlete preparing for the race of your life as they put equal measure in their strong mental attitude. This is a bit different from the “distraction” of exercise/work and all of them have their role to play in helping us through this. I tend to “harp” on about mental wellbeing and mindfulness because, to me, that is what gets you through this especially when young with children – I feel I can/could destroy myself/life much more quickly through my own mental torture much faster than MM could ravish my body! – on treatment or in remission it will now always be there, never forgotten, so we all need to intelligently know how to deal with effectively. I am not intending to be the voice of doom as I live a great life, have a good work/life balance, exercise well etc but I do attribute this to exercising mental strength on a daily basis via strategies that work for me. Your partner must be also in mental turmoil and probably holding things back to show “strength” for you so now would be a really good time to get literature/talks/ mindfulness “taster” etc that you could both look at and decide/try what will work for you – tool up for the fight! stay positive and take one day at a time and you’ll come through this. Good luck
Rebecca
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