[MariParticipant]

Hello everyone,

Having had 5 cycles of velcade and reached a paraprotien level of less than two, we had an appointment with Steve's consultant at King's yesterday. I am not sure what we expected but Steve assumed he would not be a candidate for a second SCT having relapsed after less than a year. As he is one of four he wanted to explore the possibility of a donor, allogeneic graft. The Prof was pleased with Stephen's progress and gave us a very interesting run down of the latest research and trials being carried out that inform his thinking when considering treatment. He told us that although they probably carry out more transplants than anywhere else in the country they rarely carry out allo grafts. He feels the risks are too great for too little benefit. He talked about a mini allo done in tandem with an auto but again was not convinced that it would give any appreciable extension to remission. He said he has come around to the idea that less intensive treatments were giving better remission, in other words drugs instead of transplants. He was very positive about the number of new drug therapies coming through, although he was fairly scathing about the vaccine from Israel. Apparently they are working on some kind of immune treatment at Kings.

Anyway the surprising outcome of this is that Stephen is to have a second SCT. He is going to have one more cycle of velcade and is being referred to the transplant team for about a months time. Apparently there is a slightly different new protocol now that our consultant feels might be beneficial for Stephen.

Yesterday Steve was very unsettled about this as he had been hoping for some treatment free time, especially as the IV velcade was really taking it's toll on him after only two doses, no neuropathy but such terrible exhaustion.

So we set off on the journey that is a Stem Cell Transplant, I cant decide if it's better knowing what is ahead or not,

Love Mari x

[EvaParticipant]

Dear Mari,
First of all, best of luck to both you and Steven.
I have a question for you as I am possibly in a similar situation to Steve. I will have to decide whether to consider going for another transplant, or trying to stick with some novel agents first. I'm assuming that it might not be worth going for another transplant now, as I wouldn't expect a remission even as long as my period of convalesence.
Unless…… Do you have any way of finding out what the new protocol might be and how/why that might improve results?
Eva

[MariParticipant]

Hello Eva,

Steve's consultant is very clued up about the current research and I got the impression that it very much informs his clinical decisions. He was talking about the statistical data supporting various regimes but he did not go into any detail about what the protocol is. Steve got the impression that he was talking about going back to the way they used to do things as he felt it gave better outcomes. This is not very helpful, I know. I hope things go well for you and you find a good treatment, whatever you do. The Prof did say that he felt that the less intensive treatments were often giving better outcomes than intensive treatments such as SCT,

Good Luck,

Love Mari

[TrigletParticipant]

Hi Mari,

Like Eva, I too would be interested in the new protocol, if you do find anything out. I've been told that I'm relapsing and I'll probably have to have some 'more treatment' by the end of the year. I was astonished that another sct might be on the cards as I'm 65 and thought I'd be too old. I was expecting maybe Velcade, but not that. Nothing has been discussed yet and I'm not due another appointment until the 25th June so I've got to wait a bit. Please keep me posted – I also see Prof Schey/team at Kings (I live in Maidstone).

Lovely to hear about your recent break in Bournemouth – I do wish the sun would come out and [b]stay[/b] out very soon.

Kind regards
Rosie

[eveParticipant]

Hi Mari
Did Steve have enough stem cells or will they do another harvest!!!
Rosie my husband Slim is 68 this year and is having his first SCT starting Sunday,i think it,s not so much age,it,s how fit you are,because Slim had pneumonia which left scaring on his lungs,we thought they would say no,but they have said he is fit enough.They did decide not to give him full does chemo,because his kidney readings were out.

Mari when you find out about the new protocol ,I will be interested too.Eve

[MariParticipant]

Hi everyone,

I did try to quiz Prof Schey about the different protocol but he was not letting on. Steve got the impression that it is an old protocol that they have realised works rather well. We will let you know as soon as we find out but we dont expect the transplant to take place until late summer early autumn. Steve is having one more cycle of Velcade before they start the work up. He is about to start week two of the cycle and apparently they like them to be clear for a while before they make a start. He will have to have all the range of tests again and go through a harvest. He got 5 million on his first harvest, Eve, and they put them all back in his first go. I am writing this on Sunday, having been away this weekend with my Dad. I hope that by now Slim is settling into Davidson Ward, I remember that worrying wait for a phone call to confirm a bed was available. I assume then it's Melphalan on Tuesday and you are off. I will be thinking of you and hoping everything goes well. Are you going to stay up there or travel up and down? I made it in to see Steve most days except a middle weekend when I went down with a dreadful cold. There is a direct train from Sevenoaks to Denmark Hill, but I think you are further down the county. Do take care of yourself as well during this time, it's going to be tough. I remember there were times when Steve hardly opened his eyes during my visits, but the difficult times pass surprisingly fast and it is all worth while when you get to remission and can start enjoying life again.
Rosie, I guess you will probably have velcade first to bring you into to close to remission. Prof Schey sees SCT as a consolidation of this treatment , as I understand it. Steve went into the Oncology centre in Maidstone for his Hickman, I think this is the thing he is least looking forward to about going through the procedure again.

Much love to you all,

Mari

[GillParticipant]

Gosh such memories SCT, Prof. Schey, Davidson ward, limited allowable foods (a great many eggs hard boiled for 10 minutes, salad cream and a few other bits) Always a daily paper.

We are not too far from Kings (we live in Orpington Kent) but still a darned long walk from Denmark Hill station to Kings.

Good luck to everybody with SCTs coming up and fingers crossed that you all get a good long time from them.

Gill x

[MariParticipant]

Yes Gill I agree, it feels so strange to be going back to all that again and I have to admit to being more than a little nervous, especially second time around.

It's so good to see you posting again, I have missed seeing your presence on the board. I guess this means you are back from France. How are you both? I hope Stephen is feeling well and you both enjoyed your time away,

Much love Mari xxx

[eveParticipant]

Hi Mari

Slims on Waddington,had to change wards as beds have to be seen to be filled with bodies all about filling beds these days,after 3 hour journey made him sit round for 2hours,as you can imagine I lost the plot a little bit,it worked,next day was moved to have chemo,only given half does as kidney function not good,after not having much liquid for 5 hours it was understandably .

Today will have harvest about 5o clock,doing very well,temp went up slightly and straight on to antibiotics ,with Ezra liquids looks better than he has done for sometime,the last couple of weeks have taken there toll on the whole family.
My daughter and son in law are doing the best to hold things together as they have becky and Katie to care for,and I am parked on there door step.I get the train from Otford to Denmark Hill,she insist on cooking for me,when she has enough to contend with .
Time for harvest so I will stop now.Eve

[MariParticipant]

Dear Eve,

I am glad things are going to plan for you now. it must be tough for all the family after what you have been through lately. I am glad you are able to stay with your daughter, it makes the journey much shorter for you. Steve has got the dates for his workup in mid june, then stem cell harvest in mid July, followed by the transplant in late August. Hopefully we can get a holiday in sometime late July early August. I dont know Waddington, does Slim have a single room? Steve found it invaluable, especially with an en suite bathroom when the runs started.

We will be thinking of you and hoping that all goes well for you now that Slim has had his cells back. Look after yourself and family too,

Much love, Mari xx

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