[MariParticipant]

Hi Eve,

Sorry when I read this back it sounded very grumpy, I think I spent too long this afternoon struggling with some work that would just not work out!

Thank you for asking. Stephen is doing ok. He has just started cycle 5 of velcade, which he hopes will be his last. After two cycles his pp had dropped from 23 to 12, so he is hoping he is nearly in remission now. We have an appointment with his consultant locally next week to see how he is doing, and then he is seeing Prof Schey at Kings to discuss the next steps. He has three siblings so is wondering if they will consider him for an allo graft, but there are a lot of issues to consider around that. I was interested to hear that Jet is going for one. The pattern his MM seems to follow is one of good response to treatment but only relatively short remission.

The velcade has gone very well, with very little in the way of side effects. As he already has a fair bit of peripheral neuropathy from the spinal compression,so we were particularly worried about this. We were very firm about wanting subcutaneous Velcade and he has had it. Our lead nurse at Kings told us they do it fairly routinely now and that was enough to convince our consultant in Pembury. We were surprised to learn that it was only licenced in the US in January. Anyway it has worked very well for him. Thank you Dai for bringing it to the board and alerting us to the possibility.

I dont tend to post much about us unless I think it might help someone else. Sometimes it does not feel right claiming too much attention if i am not here often enough to provide my fair share of support as well.

I am glad to hear that Slim is doing so well. I am sure that makes life easier for you both and you can comtemplate a easier future for a while. I am very sorry to hear that your grandson is not so well though. I hope that things will be better for him and your daughter soon. I know how difficult and stressful family illness can be. My dad was recently diagnosed with fairly advanced bowel cancer so I have spent a fair amount of time travelling up to North Wales to see him of late, while we wait for his operation. That is pretty much all my news. I do pop in from time to time and I keep up with how you are all doing. I think of you often, especially those of you going through tougher times, especially Dai and Bridget. And I am pleased to see all of you continuing to do well, Tom and David, whilst others are coming out the other side of affective treatments, as Slim is. I am a bit worried about Gill and Stephen, but I think the last I heard was more positive so i hope that continues.

We just spent a week in Lower Town,Fishguard, Cwm Abergwaun where Steve and his friends spent a few happy evenings jamming in the Ship, so Dai was very much in my thoughts then.

Anyway much love to you all,

Mari xx

[MariParticipant]

Goah sorry folks, did not mean that to be such a long post

M x

[eveParticipant]

Hi Mari
The long post just makes up for you not posting for awhile:-)

We all have are ups and downs on this rocky journey,some times I feel only the world of myeloma exsit,and then I have to remind myself there are lots of people struggling with different things,so I tell myself to snap out of it and be grateful.(:-) 🙂 🙂 smiley face comes on.
Gill and Stephen have gone to France for 5 weeks,so quality of life must be good as can be.I think they have been told what the out come will be,and have made decisions with this knowledge.
Must admit we thought long and hard about SCT,some Myelomas are hard to treat,and to be feeling good for the first time in a long time,then have SCT and write off 6 months not knowing how long you will get,is hard.But i don,t have to tell you,you have been there:-(

Any way enough of my thought,so nice to hear from you,Jet is posting might be worth flagging her to know more about her Next SCT.Love Eve

[EvaParticipant]

Dear Mari,
Do you have any idea what the age cut-off is for a mini-allo?
I thought it might be 50?
I'm asking because I might wish to raise the issue with my consultant. I'd need a donor match as I'm an only child. I'm worried that by the time it's recognised I need an allo I'll be too old. I'm still responding to other treatments. My impression is that if you are about forty you might get an allo at the beginning. If you're approaching fifty my impression is they see whether you've still got responses to other treatments. If you have any info on this please let me know.
Very best to you both,
Eva

[MariParticipant]

Hi Eva,

I dont know about the age cut off for an allo transplant or any sort. We would like to find this out. Steve is 55 but considers himself to be very fit and he coped very well with his first SCT even though he only got about a year's remission from it. He is hoping this will be in his favour despite his age. He has two brothers and one sister and is hoping one will be a match. I understand same sex donors are more advantageous. I think that unrelated donors are considered to be too risky by some consultants. The whole things seems a grey area and there is so much we need to find out. I understand that many doctors now feel that an allo transplant is too much of a risk these days, especially as there are so many new treatments available. I hope this helps and i will try to let you know any further information as I find it. Good luck with the rest of your treatment,

Much love

Mari xx

[zasrsParticipant]

Hi Dai Bridget and all

I often pop into the forum, but dont always post. Always pleased to see so many old friends posting merrily or not as the case maybe!
My son and I have just finished lambing our larger than usual flock, very hard at times, Gordon is all over the farm, Charlie my younger son seems to have taken his place on the big red tractor. My daughter has just had another baby she told me she was expecting the day I was told to take Gordon home. So difficult + wonderful as well.
Keep well my cyber friends keep taking the drugs!
Sarah xx

[DaiCroParticipant]

Hi Sarah,

It's lovely to hear from you and life on the farm. I imagine Gordon is everywhere because he always was and even if he is only there in spirit his voice and his ways will be echoes on the wind and in the fields and yard… that I imagine, is inescapable.

I'm glad that Charlie has claimed his Dad's tractor and I am sure he thinks of Gordon often as he works it around the farm… and a new grandchild too… I remember you telling us of the untimely announcement.. but untimely or not s/he is here… and cannot help to bring some joy into your daily life… difficult then, wonderful now.

I think of Gordon and Peter very often… I had imagined them accompanying me through this mm journey and it was a powerful blow when they both went so quickly… it sobered me… worried me… but now I realise that it was/is not yet my time and I should be grateful… I am grateful, for every single day I wake, regardless of how I might feel.:-)

I live in a very rural spot here in the Vale of Belvoir (Beaver)… there are more farms per square mile as in any part of the UK I am led to believe. Janet and I love watching the seasons change by the state of play in the fields… crops and livestock tell their own story and I always keep an eye out for a red tractor… and on those rare occasions when I spot one I can't help but smile to myself… but it is for my eyes and minds eye only. We love to see the lambs, they never fail to delight us.:-) 😎

Keep well Sarah… you and Min and Tina are often in my thoughts.:-)

Dai. xxx

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