[DaiCroParticipant]

I attended my consultation yesterday to find out that my second 24 hour urine test still failed to show sufficient myeloma in my urine… the last qualifier I need to carry on with my trial audition. 🙁

I have filled in all the paperwork and my consultant will rush me through the rest of the qualifiers (Cardiac/full body scan/ bloods etc.) as soon as my urine shows 0.5 myeloma. The pig is my urine has always shown presence of myeloma very quickly as the other relapses but this time it is refusing to show (0.025 last test) – the 0.5 needed is a very low marker so it should be there soon.

So we have decided to hold on until next week to try for a third time – doing the necessary on Tuesday so as to take it in and have my bloods done on the Wednesday – giving more chance of the results coming back for my next consult on the 27th February. My consultant is getting concerned because the trial may close any day soon – if she gets so notified we will bring everything forward and rush it through in time for the closure date and hope for the best.

So far my bloods are holding up – everything has dropped across the board but nothing to get concerned about yet. I have some rib pain when I turn and/or stretch too much and the pain in my shoulder refuses to ease or go away… so my consultant has put me on my honour to report as soon as it starts to get too bad – my last 'FreeLight' test – taken on Feb 2nd wasn't back from Birmingham as of yesterday… but if it shows a high reading my consultant will make the call and I will go straight onto Revlimid & Dex. So Its more or less the same old, same old (ish). I'm hanging on for the 3rd 24 hour urine test next Tuesday and then wait for the 27th for the results… and hope that we make the magical 0.5%.

Of course, even if we do make the mark and pass all the other qualifiers my name will still go into a hat and drawn out… with a 50/50 chance of being accepted onto the 'Aspire' clinical trial – one of the 700 people worldwide.

The 'Aspire' trial of 'Carfilzomib' will continue but 'Onyx', the USA manufacturers and trial conductors, have already applied for its license in America. Carfilzomib is from the same family as Velcade but seems to have better, longer lasting results with far fewer side-effects. If I do make it I will have Carfilzomib twice a week for 3 weeks with a week off between cycles with 18 cycles in all. That would tie me down to the day-care centre at the hospital for approx. 3 hours x 2days per week with each infuse lasting an hour but I can only say 'Bring it on' because unlike Rev & Dex, which keeps the MM quiet – Carfilzomib actually knocks the disease back – hopefully into remission status. Even if it does I will have to continue with the Rev & Dex indefinitely… until it eventual fails… but the Carfilzomib will give me the possibility of an 18 month extension with as much as the Rev & Dex can extend it to follow.

Carfilzomib is taken with Revlimid and Dexamethasone. Those that don't get picked out of the trial hat get Rev & Dex alone… so, unlike some trials, you know your not on it… but Rev & Dex is my next step anyway…

I plucked up the courage and asked the consultant if their was a median for Revlimid and she said yes (ish). It is changing (for the better – the more results they get in) but it looks around the 30 months marker – although they have patients at Nottingham who have passed the 2, 3 and even 4 year markers on Rev and Dex alone.

If I don't get on the 'Aspire' trial I will start on Rev & Dex and hope to last long enough to see Carfilzomib with a UK license and available as a next step for me.

My SCT lasted only 10 months and my Velcade only 6 weeks but I do respond well to treatments when I am actually receiving them… and I am hopeful that Rev & Dex will prove the same… but Carfilzomib on top will suit me even better.

Staying positive…8-)

Thanks for reading.:-)

Dai.

[brochoParticipant]

Hi Dai it is such a nuisance when you cant get the results when you need them! Like you I used to be very responsive to blood tests until after my first relapse , since then I have become a non-secretor This is likely to excludeme from some trials as they will be unable to measure performance It is so frustrating so I know how you feel although you have the added pressure of getting onto the trial before it closes The results for Rev are improving all the time so thats not a bad default treatment , unfortunately it didnt work for me but then I am an awkward bugger!!Heres hoping Carfilzomib gets its licence sooner rather than later Being positive is the only way to go love Bridget x

[DaiCroParticipant]

Hi Bridget,

Thanks for replying. I asked in your thread exactly what treatments you have had… I was wondering how you fared on Revlimid… but you have said that it didn't work for you – did they give a reason, or did it become obvious through tumours, new disease etc.

I hope that you find a suitable treatment soon… in the meantime enjoy your new laptop and the new car in a few weeks time. I don't know if you are aware but the Motability scheme now gives a £250 cash back to [b]every[/b] car as long as it is in reasonable condition… assuming that you are on the scheme. We had our new Motability car in October and we paid an excess of £500 to get the model we wanted… but that was cut down to £250 by the Motability cashback scheme.

I hope you well enough to enjoy both… and are still fit and reasonably healthy enough to choose your next car in 2015… you never know, you really don't.:-D

Much love

Dai.

[brochoParticipant]

Hi Dai sorry I havent got round to answering you yet Revlimid , Velcade and Bendamustine failed to make any impact over periods of more than 3 months Each time a new tumour developed the latest is not the most painfulbut seems to have become very large in a short space of time so a bit scary especially the risk of paralysis I will certainly enjoy my new toys I am hoping to get the cash back but there is a scrape on the rear wing so I wont bank on it It is a much better scheme all round now than 10 years ago when I drove my daughters Motability vehicle and the fact that we dont have to find extra cash for servicing etc is a big relief Unfortunately the Motability scheme is the latest Daily Mail campaign, they use headlines that imply we are all scroungers who drive luxury cars!!As if ! I know I would be virtually housebound without a car now .!What car did you get? I went for another Astra as the lumbar support in the drivers seat is great for my back , and its pretty I am going to search for the best price for my laptop now PCworld have it at £309.99 reduced from £522 they say , even if it wasnt that dear I think it still seems a good price and has the features I want love Bridget x

[BADGERParticipant]

Hello Dia

glad you can stay positive although it must be hard. The rev and dex can be a regime its only low dex as i understand it there is a lady in my support group who has been on this regime for over four year and is still in plateau she could not take other meds thalidomide or velcade,fingers crossed for the 5%
Love and (((hugs)):-)
Jo x

[mhnevillParticipant]

Hi Dai

It really does seem one step forward, one back for you. Oh the frustration of not having enough pp! Sounds crazy doesn't it. Do hope you make the Trial. Something must work out for you soon. As you say, at least you respond well while on the therepy – trouble is the limitations it places on your life.

Sending all good wishes and love.

Mavis

[keenParticipant]

Hi Dai, it is such a long time since I visited the site I am sure you will not remember me but I came on today in search of some support from all our lovely friends out there and had to respond to your post as I have just started a trial called Eloquent which only opened last week. I got the arm that contains the new drug and have had one infusion so far, next one tomorrow. Luckily it went well, no side effects at all and they tell me if that happens on the first one the others should be the same so fingers crossed. The downside was my renal reading rocketed from 80 to 160 so I had to stay in Barts for 2 nights being pumped with fluids and now I am drinking for England. They said it was the MM as I had not had any treatment since plateauing in Aug so not surprising it finally caught up with me. Seems a coincidence though. We shall see what happens tomorrow. I am telling you all this because although of course I hope you get the trial you are waiting for, if you don't perhaps your consultant can advise re Eloquent. I actually came on today to see how people cope with Dex and Rev as that is part of the trial.Have people suffered with bad side effects? I was told it is very well tolerated, I'm waiting! Well Dai I do hope you get good news soon.Do you mind if I just wish Bridget good luck in your post. Best wishes to all friends out there. Sylvia Keen

[brochoParticipant]

Hi Sylvia good to hear from you but sorry you are back on treatment Eloquent seems an unusual name for a trial made me chuckle! When I was on Rev and Dex the fatigue was a bit overwheming but you do get used to it Constipation can also be a problem , my docs reccommended using 3 different types of laxatives regularly eg Movicol , Senna and Lactulose Its best to keep on top of it rather than wait for it to become a problem Good luck and let us know how you are getting on love Bridget x

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