[mervyn53Participant]

Hi

I am new to this so all advice welcome. I was diagnosed with MM early December 2014 after I collapsed at home. Was in hospital and immobile for 3-4 weeks but they let me out on 24/12. I have been on velcade, dexi,cyclo etc since then and my paraprotein scores have gone from 74 at the start to 48 after 2 cycles, 18 after 3 and now 9. I am still on the velcade and the rest once a week, but I have no idea how this para reduction compares to others.

My consultant says that we will have a conversation about stem cell soon. One guy in the hospital said that he had had it and he felt awful for 3 weeks and then it took 6 months to feel ‘human’ again. Is that typical ?

All advice/experience welcome. Up till now I thought I was fit !

[CarolsymonsParticipant]

First of all welcome and I know how you feel. I thought I was the fittest 63 year old in London till diagnosis! Sounds like you are doing really well. It is true the SCT lays you low for a couple of weeks and it does take quite some time to recover. But if you can gain a good remission and be drug free for a while I think it is well worth it.

Carol

[mervyn53Participant]

Dear  Carol

Thank you for that. I have read that really they only give you two goes at SCT.  If you get your paraprotein level really low, isn’t it worth saving those two goes and not having the SCT until the MM comes back ?  Any view on that ?

Thanks.

Mervyn

 

 

[CarolsymonsParticipant]

Hi Mervyn
I know of people who have had 3 SCT’s but for me I was desperate to be drug free and the SCT achieved that. After I finished the initial treatment with a good response, my light chains started rising again so I would have been back on velcade (probably) straight away. Also I think it was better to have the SCT early on when I was still strong. Still not sure if it was the right decision, but I am 65 now and 13 months in remission, off to the gym and swimming most days back home in sunny Australia. Also just booked a 3 month trip to travel Europe in May.

Carol

[mervyn53Participant]

Hi again and thanks again for that. I will probably go for it. It would be great to get back running.

Would also like to travel worry-free.

Enjoy your trips and gym.

 

Mervyn

[graemeandrewarthaParticipant]

Hi Mervyn

Welcome to the forum even though we would rather not be here.

I am 68 and reasonably fit. I was working up to last year until my leg became to painful for stairs and ladders.

I have recently been through SCT at Southampton Hospital. Yes it is unpleasant but as all will tell you it is doable.

There are ways to alleviate or help you get through it. I thought I would go running out of the hospital but the only one running was the porter pushing the wheel chair!!!!

However you get stronger as the days go on and have to listen to your body. If it says go for a rest then do it. Don’t over stretch yourself at the start and believe me things do improve.

Just had my 100 day bone marrow test and will go for results next week. If all well Australia for me to see family.

I believe that SCT is the way to go hopefully giving me extended time.

Regards

Graeme

[mervyn53Participant]

Dear Graeme

 

Thanks for this advice. Very helpful.  I hope your bone marrow test goes well and you have a great trip to Oz.

 

Mervyn

[mattkboParticipant]

Hi Mervyn,

It sounds like your PP is responding well to your treatment. I was diagnosed at 42 with MM with PP at 49 which decreased after 6 x 3 wk cycles of CDT and then a SCT. Yes SCT are challenging but as Graeme said they are ‘doable’.  I was in for just under 3 weeks. You’ll have a great medical team around you to get you through it.

It can take a while to recover from the transplant, but again to quote Graeme if you ‘listen to your body’  and take one day at a time, then you give yourself a better chance of getting back to doing the things you love.

My thoughts about the SCT were simply that I had got my PP down to 1 and believed that the transplant would give me the best chance to get the disease into a long remisision.

Matt

[mervyn53Participant]

Dear Matt

 

Thanks for this. It looks like SCT is the way to go. I hope it is working for you.

Live long and prosper.

Mervyn

[mattkboParticipant]

Hi Mervyn,

My SCT worked out well thank you, gained full remission last April. Just trying to stay healthy everyday now.

Take care,

Matt

[mhnevillParticipant]

Hi Mervyn

I just caught up with your post. You didn’t say what age you are. I was 65 at diagnosis, had a plasmacytoma removed from my spine then radiotherapy. 18 moths later I went on CDT and after six lots was in complete remission. I am now in my fifth year post diagnose. I didn’t have a SCT and seem to have done as well, if not better, than some who did. I continue to have monthly Zometa infusions for my bones.

I suppose it just goes to prove that MM is a very individual disease.

Best wishes to you in your decision making.

Mavis

[CarolsymonsParticipant]

As soon as I finished the initial treatment of CDT with a good response, my light chains and paraprotein started rising again, so it was either on to Velcade or SCT. To me SCT was the better option and nearly 14 months later I am still happy with that decision.

Carol

[mervyn53Participant]

Hi

 

Thank you for these inputs. I am 65 so the same age as Mavis. I think I have to wait and see what the consultant says on 31 March. He has his own clinical trials and is said to be one of the best in UK.  I hope so !

Mervyn

 

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