Thank you for these postings. I have read Rebecca’s helpful and perceptive postings over the last few years and found them very helpful.

I don’t assume anything about remission periods, except that overall there must be the law of diminishing returns. otherwise, doctors would do them again and again.

In my case I…[Read more]

I had my first stem cell transplant two years ago. Now my paraproteins have started to go up again and I have signed up for the clinical trial, part of which will be a second stem cell probably in the first quarter of 2018.

I realise that it cannot be a scientific forecast, but does anyone out there have experience of the relationship between…[Read more]

I read this post with interest. I had my first SCT a few months ago and am not feeling too bad apart from the hair loss.

What makes you say that ‘as I rapidly approach my first relapse’ ?  Your paraproteins have gone up ?

I ask so that I can watch out for whatever you say the warning sugns are.

all the best

Mervyn

I am in a similar position to you; diagnosed about a year ago and immobile with 3 crushed vertebrae. After 6 cycles of velcade, now two months after SCT and more or less OK.

For those of us that like(d) going to work, there is a great void, as you say.  This has to be filled and the more time wasted moping about  the house w…[Read more]

I had a lot of sleepless hours when I was on velcade, dexis etc. The thing that worked for me was a tea called ‘Snore and Peace’ made by the Clipper company.

Try it. Nothing to lose.

Good luck

Mervyn

I was taken into Addenbrookes in Cambridge in late Novemeber with 3 crushed vertebrae and paraproteins at 74. After 6 cycles of Velcade and dexis and cyclophosphamide paraproteins were down to 5, but Dr. Crawley advised SCT.

I had the SCT on 16 July and they let me out 16 days later. Yes, I felt rough while I was there and I had…[Read more]

I wish your mum well. SCT will not be easy for her. Please read the article I recommended. You will find it helpful.

best wishes.

Mervyn

I am happy to report that I have been allowed out after 14 days after the SCT. Still very tired indeed.

I should report to anyone interested that I stopped writing my diary because (a) I was very tired and weak (b) I didn’t think a short daily grouse was contributing anything and (c) I stumbled upon an account that seemed to me to…[Read more]

thank you for this. I am not so sure I am doing well. Did not write yesterday because I felt so terrible and had no energy. For now day 7 the stomach cramps have gone and feel better but we will see how long it lasts.

mervyn

started the day with more energy and thought that this is getting better but by lunchtime I was back to feeling weak and rough. Tried to eat some lunch but couldn’t face it.

maybe tomorrow.

mervyn

thanks for the advice and support. Day 4 nothing much has changed. Feel very rough and weak. Slept most of the day. Still not eating. I survive on banana scandishakes provided by the hospital. My neutrophils are still 1.8 so maybe the worst is still to come.

mervyn

Now on day 3 and feeling rough and very weak. Don’t want to eat anything. The thing to remember is that they give you the melphalan on day 1 then the stem cells on day 2 with 18 hour drip. On day 3 they leave you alone. It is in your body so the fight can commence. The doctor says it will be like this for 4-5 days.

Couldn’t write…[Read more]

A long day if you wake up early as I do. There were the usual bloods and so on, but then you have to wait for results, the doctor to call in and the chemo from the pharmacy. We got started about 1400 hours with about an hours worth of liquid being pumped in so as to pump out quickly.

Then we had the chemo and an hour of sucking ice…[Read more]

M

Many thanks for these words of advice. I will see how I feel when I get in there.

Hope all goes well for you guys.

Mervyn

Thanks for this. Very helpful.

M

I am heading for the transplant in July. Any tips ?

Thanks.

Mervyn

Yes is the answer to the question in my case. I was diagnosed with MM in December 14 when before I thought all was well. At that point was immobile with 3 crushed vertebrae. They put me on chemo etc 2 weeks on 1 week off 2 jabs a week and my paraprotein have gone 74 48 18 9.  Now 1 jab a week and next clinic 31 March where they have said we…[Read more]

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

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

Live long and prosper.

Mervyn

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

Mervyn

Would also like to travel worry-free.

Enjoy your trips and gym.

Mervyn

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

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…[Read more]