[wendyduffieldParticipant]

Hi Christine and Chris
I am so sorry to hear the news that the SCT has been considered to be a failure at such an early stage. No wonder you are feeling devastated. I am sure that Dr Cavet will come up with some alternative treatment or trial for Chris as there are lots of trials out there, but the reason the MUK5 trial may not have been mentioned is that it is a randomisation between Velcade or Carflizomib although the trial is running at Christies hospital very shortly. Given his PN caused by velcade and/or thalidomide that may be why it hasn't been mentioned.
Thinking of you

Wendy x

[CarolBradley1Participant]

Hi Christine
So sorry that things are rough but HOPE this helps. My act failed in Oct last year with a horrific 97% but they have finally got it down down with PAD.We have just been told that they are abandoning any further idea of a second act as I don't Ha ve enough stem cells so as am starting a low "consolidation" course of velcade on Monday.
I DO understand hoe frantic you feel but there are new novel drugs out there,especially if you have made it clear your willing to go on a drug trial.
Best of luck to you both. Carol xx xxx

[christinepughParticipant]

Hi Carol

Thanks for that, yes it does give us hope.I'm just worried that because Chris has had pretty much everything prior to sct that it won't work this time round. It's strange how his pp's have never been over 40 yet have such high plasma % yet a mm friend of ours had pp's of 70 and only 30% plasma. Anyway it's just numbers isn't it at the end of the day.Dr Cavet knows Chris will try anything he said he is going to contact his peers in the UK and see what they say.

I'm really glad that it has worked for you though and hope it continues to do so.

Christine X

[christinepughParticipant]

Hi Wendy

I've been trying to find out about muk 5, Dr Cavet did mention something but to be honest it was a bit of a blur. When Chris goes for bloods on Tuesday he said to call in if we had any questions. But yes that would be an obstacle if we got velcade and knowing our luck we would. How ironic that the drug that worked best for him had to be stopped due to side effects. Sods law or what !!

Hope you are doin ok Wendy, I'll check on your posts when I've sent this.

Take Care

Christine X

[christinepughParticipant]

Hi Tom,Megan,San,Mavis, Chris and David

Thanks to you all for taking the time to reply to our plight. We have great friends and family but hearing from people who really know how it feels does lift you and give you strength. Last Tuesday was the worst day we've ever had, and for a couple of days after you wonder if you will ever recover,but you do.

I wish I could remove my brain to stop it thinking things I don't want it to think.
In the end I'm here to support Chris and be strong for him which he really deserves, so getting the help and good wishes from this forum plays a big part in enabling me to do that, so thank you again.

Christine Xx

[HelenParticipant]

Hi Christine
I don't have much to add but I do wonder what you mean by keeping fit, is Chris working out? It's just that the effort involved with work out and muscle maintenance uses lots of energy, and I'm just wondering if that is causing a lot of stress to his already very pressured body?

Love Helen

[christinepughParticipant]

Hi Helen

No nothing daft. Chris was extremely fit until he started chemo in March last year, he ran marathons, did long distance cycle rides etc but since the sct we go for a walk most days couple of miles miles at most and he does gentle exercises to strengthen his weakened muscles at home. He has got a 10 day pass for the local fitness centre but is just going to try a swim and see how he goes. He did cycle to the hospital during his stem cell harvest to the amusement of the nurses but he hasn't had the energy to get on his bike since.

Christine x

[HelenParticipant]

Hi Christine
That's all right then! I was told that getting back to pre mm fitness was going to be very very slow and not to push myself at all in the first few months. I never did get back to that point before I relapsed.
Let us know how you get on tomorrow.
Love Helen

[DaiCroParticipant]

Hi Christine & Chris,

I have been following your thread with deep interest and keenest sympathy… 😐

The longest serving MP in the House Of Commons is called the 'Father Of The House', purely for his longevity as a member and some supposed wisdom or memory of events undertaken in his or her time there. I am not sure if I am the MUK's equivalent, as a matter of fact I suspect not… but I must be close. 🙂

I have not heard of such a rapid declaration of failure in my time here… of that [i]I am sure[/i] and my heart goes out to the both of you. All of us who have had to face relapses to one degree or another can understand the pain and angst that other MM sufferers go through… it is an absolutely horrible experience in which you wonder how on earth you are going to find the wherewithal to continue… wondering what comes next and how you are going to bear it.

To a certain extent a relapse is a relapse… I have had 4… 2 (SCT – 10 months) and Velcade (2 months remission after a highly successful 6 Cycles that produced full remission) were all consuming and I didn't know how to cope. The next one, Revlimid, (10 months) was irritating and angered me (another story for another time) and the last one, Bendamustine (4 months) had me saying Okayyy! And now I am back on Velcade…

For you and Chris to get such devastating news after a relatively few short weeks seems to me to be insuperable news… but news there always is and I assume that Dr. Cavet is news gathering with a vengeance. I also assume that the MUK5 trials will be one of those pieces of news. If I could have access to any treatment at this time… and I am at the scratching around and Kitchen Sync time believe me… I would grab hold of the MUK5, with both hands… and never mind that little trickle of negativity with the [i]'I'd bet we would get the Velcade'[/i], you're allowed that, you've earned it… trust in the random treatment fairies, they are pretty good I have heard. 😉

Of all the new treatments (both of them) and the novel drugs in waiting, Kyprolis (Carfilzomib that was) seems to be the best and certainly produced the most bullish results from my consultant to say the least. God knows why Chris's treatment regime seemed to stop so suddenly and leave you with Chris's PP's at 23 going into his SCT (another unheard of high score)… have your medics addressed this?:-|

I do hope that you have some good news soon, as well as some positive and effective treatment that allows Chris to move forward into a settled regime… and a bit of peace of mind for yourself.:-)

My mantra was/is [i]'Whatever It Takes[/i]',.. I hope Chris finds one to suit and grasps it firmly. My one bit of advice would be not to try for what he was before… just try for the best he can be right now… and to reach for your hand when it get's a bit tough.8-)

With much respect and love.

Dai. xxx

[tomParticipant]

Hi Christine and Chris
Well I honestly cant add to that excellent post of Our Dai's its spot on, no rush nice and steady, you both will have to learn to change with the MM, but always always fight it.

Love tom Onwards and Upwards xx

[christinepughParticipant]

Dai

You are a bit of a superstar on here and I'm grateful that you have taken the time to post. Yes we are still reeling from the news and and after hours of looking last week, I stopped trying to find anyone else who had been in this situation because like you say it's pretty unheard of.
You mention about his regime stopping but we ran out of drugs ! The sct was used pretty much as a form of chemo to try and get the pp's down. I wish he hadn't had it now obviously he would be in a stronger place physically to try something new.
Chris desperately wanted the full allo he believed with his tenacious myeloma and chromosome abnormality that to hit it big and chuck someone's else's cells in was his best shot. But the powers that be decided it wasn't to be.
I've had a quick look at MUK 5 but seem to remember no more than 3 lines of previous chemo ? Hope I'm wrong.
Chris has been amazing through this whole process and above all he so deserves a break, not a massive one just a small one will do.

Thank you again for your wonderful words which are a great comfort as all the messages are. I'll keep you posted.

Christine Xxx

[DaiCroParticipant]

Hi Chris,

Superstar??? That's a new one to me… that's Tom's field…regular, yes but not as regular as I once was because I don't have as many contemporaries as I once had… people going through the sam things etc., – I am now quite ahead of the field… mind you, saying that I am on Velcade for the 2nd time, after a very successful 6 Cycles last time, with a full 8 Cycles, stretched out over as long as possible if they do their job… and if they do then it would be absolutely wonderful – stretching my treatment out over a 8 to 10 month period… that really would be something. 😀

I am holding out for that and hoping… but MM has a way of jumping up and biting you on the bum. Still, at the moment I am hopeful and willing to run with it with a spring in my step and hope in my heart, even though I feel like a wet rag… but no pain and no new problems so far. 😉

I hope they find something for Chris to latch on to… something that clicks and sets all the tumblers rolling in a forward direction. He certainly deserves a break I also have to say that our Andy & Steph have had not too dissimilar a journey to you and Chris… Andy has never reached his SCT stage – they threw every drug in the book at him but couldn't find a combo or single drug regime to bring his PP's down to a safe level for his SCT – as a matter of fact he was referred to a top man in Newcastle and the Professor there tried again but still couldn't fond the answer. Andy will put me right but I believe that his PP's were similar to those of Chris at best but they were deemed to be not at a safe enough level to proceed… which made my eyebrows rise when you said that Chris was allowed the go ahead. :-/

Andy!!! :-0

Here is hoping for something from MUK5… or something akin… And if they can keep me going then who knows? Perhaps repeats of older, tried and tested treatments might be a way of keeping us going until something is found that takes us forward.:-)

Much respect and love.8-)

Dai.

PS… My PN has stopped me recording for a while but here is one of my favourite compositions for you to listen to..:

http://soundclick.com/share.cfm?id=7443648

Click and it should load automatically. 😎

[andygParticipant]

Hi Dai and Chris
Dai is right I've been through most the standard and some not so standard treatments to no avail. My PP's stubbornly remained in the mid 30's. The criteria I was given at the start of treatment, when my PP's were 50, to get to SCT was at least a 50% reduction in PP levels. So that would of put me in the lower 20's bracket. Anyway that wasn't achieved and by the time I got to see the Prof in Newcastle autoSCT had been ruled out due to the amount of chemo I'd had, 12 months worth, damaging my bone marrow to much. At one stage I had very little bone marrow left. I was then put forward for an alloSCT as a matter of urgency by the Prof and a match was found but deemed not "good enough" for me to survive the process. So here I am 20 months post diagnosis still taking toxic drugs, I'm on cycle 15 of RCD, not knowing what will kill me first the drugs or MM, my PP's are hovering around the 20 mark and my Neuts are steady 0.9 – 1.0 so I'm borderline Neutropenic all the time.
Having said all that I'm feeling at my best since diagnosis and I'm presently by the pool in Greece just about to enjoy a cold beer. We've learnt to make the best of now and not to worry about tomorrow. Who knows what the future holds. Till then I'll keep taking the drugs with crossed fingers and we'll enjoy life the best we can.
Mine isn't a typical case but there again everyone's journey is individual all we have in common is we have to learn to live with MM as best we can and people do live with MM for a long time.
Best of luck with Chris's treatment and don't give up hope.
Right it's time for that beer – Yamas

Every day is a gift

Andy & Steph xx

[VickiParticipant]

Hi Andy and steph,

Glad to hear you are sunning yourselves in Greece….my money is on your pps being right down when you come back. It's the sun and the beer :-). But for now you guys have a great time 🙂

Hi Christine and chris….wishing you so much luck with chris.s treatment, there's alway a plan and always hope. You guys have really been though the mill and on the roller coaster!,

Best of luck Vicki and Colin xx

[VickiParticipant]

Ps I think Dai and Tom are superstars 🙂 too

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