[sanParticipant]

Hello Chris, is this new one as mentioned on the myeloma website today something that you could ask about, you would need the clinical trial and it is for relapsed myeloma?? best wishes San xx have a good bank holiday weekend everybody x

[bandityogaParticipant]

Hi Christine

My husband Ian has not been offered an SCT as he is not mobile at the moment but consultant said that after looking at all options SCT is not now considedred as first treatment. This is also the opinion in the US as there are other treatments that work without being so invasive.

Hope they can find an alternative for Chris.

Maureen x

[christinepughParticipant]

Hi Andy

Great that your posting from Greece, we are in need of some sun, as soon as our son finishes his GCSE's we might take off.
Surely there will be a drug that will crack through that stubborn exterior for both of you. There has to be. Chris's pp's are very similar to yours. You say you had a very high plasma % at one stage ? Did that just reduce with treatment?

Are you managing to work ?

We've had an email from Ellen from Myeloma Uk to say that Carfilzomib can be applied for as a stand alone drug not part of a trial this is a compassionate access scheme your haematology has to apply for you. Dai this may interest you.

Living for today is the best bet I agree, just training you brain to do that is a bit harder but we are trying hard.

Good luck

Christine Xx

[andygParticipant]

Hi Christine.
Sorry I'm a bit tardy in answering your post but I've been trying to have a break from thinking about MM – some hope!
Anyway my PPs are stable at the moment around the 17 – 20 mark, fingers crossed for my latest results, and my consultant is reasonably happy if they stay around the level. I did have very high plasma content at one stage I can't remember the figure now but it was very high. After I tried DTPace I had a Bmb and that showed I had very little bone marrow left though the myeloma plasma was still present. I haven't had a Bmb for over a year now so I'm not sure how my bone marrow is getting on though I haven't had any new symptoms either.
When I saw the Prof. at Newcastle he was happy to leave me on my current regime and had no need to see me again until something changes. The Prof did mention trials that could be tried in the the future and also mentioned Carfilzomib and stated that was only available on a compassionate access scheme at that time. My understanding is that it's a strict entry process to get on to the scheme – they'll want good results so I don't know who it'll be available to. But I'll face that hurdle when I get to it.
There's lots of new drugs coming available in the USA and showing promise in trials hopefully the EU and British regulatory bodies don't hold up their availability to long over here though I won't hold my breath.
Work wise I haven't been there for two years now due to quite severe spinal damage and drug side effects – I keep expecting the knock on the door telling me they are finishing me. I don't receive any wages though I do still receive holiday pay which comes in handy.
Training your brain to live for today is hard after all your always told to work, save and plan for the future!

Wishing you all the best and hoping they find the magic bullet for Chris.

Every day is a gift

Andy & Steph xxx

PS Vicki and Colin we did have a great time thanks – busy planning our next trip err trips whilst waiting pensively for the latest PP's results.

[mhnevillParticipant]

Hi Andy and Steph

You are both an inspiration!thanks! Making the most is the key isn't it. Yet I found myself loosing it the other evening. I had dropped my sticks for about the fourth time and was surrounded by dropped papers. I just felt so angry I couldn't do ordinary things. I should be used to it by now as I had bad arthritis before I started with back tumour and the dreaded MM!

Still, all that was just a blip and yesterday, for the first time for several years I took part in two services with help of crutches and perching stool! Soall is not lost. We just need to " live. In the day", but easier said than done. I feel very lucky to have the gift of faith, it still doesn't make for an easy ride, but it sure holds me up.

Do keep enjoying your breaks and enjoy this English sub too!

Love

Mavis x

[mhnevillParticipant]

Hi Chris and Christine,

Keep hanging on in there.

Hope your Son's exam go/went OK.

Love Mavis x

[christinepughParticipant]

Hi Guys

A quick update. We went for our first appointment since the bomb was dropped and had a pleasant surprise ! Chris's pp's have dropped to 14, the lowest since diagnosis. After the declaration by our doc that his sct had not been effective in reducing the myeloma and in his opinion would not reduce beyond that point (Day 58) it would appear he was wrong. We had a dreadful few days following that appointment and I feel annoyed that he didn't leave the door open for news like this.He was also very matter of fact about it and only mentioned it towards the end of the apt as if it was a minor detail !! Chris has been feeling very well lately, energy good and his counts are responding well now after a shocking start. The test was he went back to work last week for a couple of afternoons which he loved.

So we are happy that there is some hope for the future and will grab any good news with both hands as it has been very thin on the ground but are seriously considering a change in consultant.

(Ive got some info re peripheral neuropathy which I'm going to post under side effects also if anyone is interested further you can contact me via our blog christhebarbers.wordpress.org.uk )
Christine xx

[tonyfParticipant]

Well done Chris, just keep going. My pp is at 1.8 following my SCT in February, gradually getting back to normal. Not seeing the doctor until August.
Good news, hope work gets you going.
Regards
Tony F

[tomParticipant]

Well done Chris and Christine

Aint things looking better Despite your Dr 🙁 Keep it going and yes it might be worth a look at changing consultants as this MM aint no trial run its real and its here.

Good Luck to you both and hope it gets better and stays for a long time

Love Tom Onwards and upwards xx

[wendyduffieldParticipant]

Hi Christine

No wonder you are peed off with your doctor (Dr Cavet?),they sometimes seem to show a complete lack of sensitivity when dealing with [b]our[/b] lives and [b]our[/b] bodies and [u]our[/u] disease. I did question like others on here whether it was too soon to have concluded that the stem cell transplant hadn't worked.

However it came, enjoy and celebrate the good news, what is the plan now?

Wendy x

[christinepughParticipant]

Thanks Tom

It's a shame because we like him but just feel a bit let down recently. It must be all in a days work at times for the Dr's but like you say its not a trial run for us.

Christine x

[christinepughParticipant]

Hi Wendy

Yes Dr Cavet,we have felt confident up until now but think its worth getting another perspective for the next step. We asked him about Carfilzomib and he said its not available yet Ellen from myeloma UK said it is, so conflicting info. The plan is to do nothing at the moment as the numbers are dropping and he is well but we know it wont last so will be thinking about the next step very soon I imagine. Dr Cavet has suggested Pomalidomide.

Christine X

[eveParticipant]

Hi Christine

This is were you hit a number of things, one post code lottery,it is only in London at the moment:-( Two is NICE set the treatments which are CDT CDV and CDR the consultants are being put in a position to follow these three procedures,unless on trials.Only when these treatments have been tried can they proceed with other combinations.
If you look at my earlier post Questions are being asked in parliament about consultants leaving themselves open to having legal action taken against them unless they follow NICE guidelines.

Slim finds himself in the same postcode lottery,so CDR has to be tried before any other treatment.
He will also not be eligible for trials as the only way to measure the Myeloma is BMB it has not shown a true reading in blood or urine from the beginning .

Christine you do need,to take things slowly as consultants,look at paper work then give an opinion,it pays to do you homework,write your questions out,let him answer,go back and check your facts,then make an informed choice what you believe.Will it help to change consultant?????,
The jury is out on that one???

I am happy that hubby is finding life a bit easier.Love Eve

[steverowleyParticipant]

Hi Christine and Chris,

Really sorry to hear about your problems.

I know it's difficult but do try and keep positive through it all and I'm sure things will work out fine.

Do keep us posted on your progress and rest assured that we will all be rooting for a successful outcome!

With all good wishes,

Steve & Pauline xx

[wendyduffieldParticipant]

Hi Chris

I am about to get a second opinion, the MRI suggested Dr Cavet and he is widely respected but I decided to go out of Manchester as the two departments work closely together so I am going to see Professor Gordan Cook in Leeds soon. As far as I am aware the MUK5 trial is starting imminently at Christies (velcade or carfilzomib) so there must be some reason why Chris isn't eligible. You could speak to Heather McKinnon at Myeloma UK who is the clinical trials contact. I may be going to Christies to start this trial. On the other hand Pomalidomide is meant to be really good and I'm not eligible for that. As Eve said do some research, maybe speak to Myeloma UK and just take your time as Chris doesn't need to start treatment yet.

Wendy

[Author]

Posts