[DaiCroParticipant]

I attended my consult prior to my final (8th) Velcade infusion on October 3rd only to be told that as I had been stable with negligible light chains for 2 months that I didn't need to have the last treatment… in short I was in remission.

Yahoo!

The day after I started with a cold that went to my chest and stayed there for 10 weeks.

Yah Boo!

Xmas came and went with me feeling 'goodbut'… (goodbut is a feeling summed up by: 'I'm okay but surely I should be feeling better than this if I am in remission?')

I attended for blood tests on the 20th December so that the results would be ready for my consult yesterday. They were… and they proved that my remission is over.

The consultant, well known to me but not my regular consultant, looked at the computer for the results and she went quiet… but bless her, her face betrayed what she was reading with her nose wrinkling and her mouth set in a slight grimace. She turned the screen around to show me the results… which showed that my blood results from the November consult showed upward movements from 0 to 19 and the results from Dec 20th showed movement from 19 to 97…

So that was that… my remission lasted 6 weeks but took 12 weeks to confirm.

So, onto Revlimid and Dex… and we left the hospital an hour or so later in a daze… with alll the meds (including pre-empt anti-biotics for the first 2 cycles) with orders to attend in 2 weeks for a white cells check up with my lead nurse.

We arrived home with Janet in bits and our daughter Kirstin and granddaughter Edith (nearly 4) called in on their way back from the shops for a cup of tea and a buck-up for her Mum. We had the tea and a sandwich and chatted through the implications and the new treatment while Edith tried on her newly acquired 'Snow White' costume which lifted the atmosphere no end.:-)

The phone rang… it was my regular consultant, who had just found out my news via the Monday pm case study meeting. She offered me the chance to partake in a trial… Rev & Dex combined with Carfilzomib. If my 24 hour urine test shows myeloma then I will qualify (everything thing else fits the bill).

So back in today for a lunchtime meet with my consultant to talk over the trial and pick up my 24 hour 'pee bucket'. The trial is 50/50 the above combo or just Rev and Dex… I want the Carfilzomib… even though it will mean a year of Velcade type infusions on a 2 weeks on – one week off cycle.

Bit of a whirlwind around here at the moment but I will keep you informed.:-)

Hey bloody ho.:-P

Dai.

[brochoParticipant]

Oh Dai it really does seem unfair that your hard won remission was so short! It sounds as if your excellent doctors are really on the ball thoughwhich helps to take the sting out of it a bit though . I will cross everything for you to get the Carfilmozib on the trial Hang in there Dai your strength and wonderfully positive nature will get you through . I hope Janet is feeling a bit better today it must have been an awful shock for both of you lots of love Bridget x

[eveParticipant]

Hi Dai

So sorry to hear your news.All your hopes built up then crashing down again,this is what we felt when Slim was on CTD one minute on are way to remission with kappa light chains at 10,bone marrow taken for trials only to be told when we saw consultant,that he was shocked to find it had gone up to 80% in bones although kappa light chains were showing a low reading!!!!!!

You know Slims story from there,HE has had 4 BMB but well worth it for peace of mind,and that now this his bench marker,he looks on them as a necessary evil,but he just finds them uncomfortable.:-(

I find it hard to believe they can just rely on kappa light chains plus blood results for remission,I know MRI scans are expensive,but at the end of the day it,s your life,they also have PET scans to show activity.Seems it comes down to money again.but we have had this discussion before.

I can understand Janet being in pieces I was struck dumb,that,s unusual for a chatter box like me 😛 ,hang in there Dai build your strength up as Slim would say you can hack it.Love Eve and Slim.

[DaiCroParticipant]

Hi Bridget & Eve,

Thanks for your support… I have just arrived home from the hospital and a meeting with my consultant. She came down from her office, grabbed my file (big, bulging, with an easy to recognise tattered cover) and found an office. There she went through all the provisos and qualifiers for me to enter the 'Aspire' trial.

"Aspire' is being run and funded by Onyx (the manufacturing company responsible for Carfilzomib). The only possible fly in the ointment is that Onyx insist that there must be a definable amount of Myeloma in my urine… not a lot but definable. Because my relapse has been picked up by the FreeLight test it might not register yet; so….

My consultant has given me 2 sample bottles (3 Litres per bottle) for 24 hour urine tests. If the first one doesn't register the required amount she wants me to wait for 3 weeks and then try again. That means no treatment in the interim. She will keep me on weekly blood tests to monitor my relapse and will only put me onto the Rev/Dex combo if things look like getting out of hand. She says we have a window of opportunity because my relapse has been spotted so early and it is worth waiting if it means I get on the Carfilzomib trial.8-)

I agree, wholeheartedly.:-)

Of course, even if I do qualify, urine and all, the trial is still randomised 50/50… so I might end up on the Rev/Dex combo anyway… but in my opinion it is certainly worth the wait to see.;-)

[b]If there is anyone out there on the 'Aspire' trial (650 worldwide) I would like to know how you are getting on.[/b]

Regards

Dai.:-)

[OutdoorsPaulParticipant]

Hello Dai
Sorry to read about the short remission but you are a positive bloke hopefully this new combo will turn things around.
I two had a blip over Xmas & new year not related to Myeloma directly.I went for a gentle cycle along the canal near home just to keep things moving after the Xmas glut. Anyway came to a arch bridge going over may route and narrowing my cycle area,I decided to sort of hobby horse i.e using feet to just keep me up right and guide me under the bridge…..:-( Paul made the wrong choice swerved to avoid a couple coming my direction and went head first into the canal!!:-P with bike.The bloke pulled me and my bike out…i said thank and cycled off feeling like a fool.
Thoe it does make me laugh.We then went away on holiday to Scotland for a week,near the end of the week i started to feel shivery and cold so luckily we were on our way back with my Temp at 38.6.Phoned the hospital who took me in for 2 nights on antibiotics.I am fine now.
If anyone says just go for a gentle cycle you will be OK…dont blo.dy belive them!
Hope that brought a smile to you as it does mine.
cheers Paul

[BADGERParticipant]

Well Dia
lifes a bitch:-( I am so sorry about the short remmission I will be praying for you in the hope your results are right In America they are using carfilzomid a lot I have been reading James Berensons blog and he has great hopes for this drug.:-) It will be a long haul but I would definately go for it you have nothing to lose
A GREAT BIG ((((HUG))
Love Jo x

[TerryMGParticipant]

Hi Di,

Sorry to hear about your news. I know how it must feel. I spent all my time learning to walk after spinal cord compression. I responded well to treatment (CDT) but did get DVT. This time last year was told I was in ?virtual? remission and then went through with a BMT in March / April. In May I was told I was in remission. In July the removal of the Hickman line had turned in to a secondary tumour site. In October started Velcade (see newcomers 2 Oct 2011). Within 2 weeks of the first cycle of Velcade, lumps that the doctors though were sites where I had injected myself with Clexane had disappeared. Two other bumps disappeared. (So they were tumours as well!) Just had clinic today?Igg down to 5.7 and M band 3.4. This sounds like good news but I know there is something in my left side that is getting worse while other things are getting better. This is really to say I understand your ups and downs!….. I just take everything as it comes as I keep on saying ?Failure is NOT an option?! (Apollo 13 space mission). Just stick with it and hang in there?. Best wishes?. Terry MG

[MariParticipant]

Dear Dai and Janet,

So sorry to hear your news a great disappointment for you both I am certain. I wish you luck with the trial, you seem so positive and upbeat, I am sure it will go well for you.

Please send my love especially to Janet, I understand so well how she feels,

Mari x

[AmelieParticipant]

Just wanted to send you my most positive vibes!

[DaiCroParticipant]

Paul, Jo, Terry, Mari & Amelie…

Thank you for your support. As usual, now that I know what I have to do I feel better equipped to deal with the disappointment and move on with as much fire and grace as I can muster.

This is a great board and I love it and all who frequent it muchly. 🙂

Dai.

[PerkymiteParticipant]

Hi Dai, I have been following your post and am saddened by your turn of events. Vasbyte my friend vasbyte.

I had my 3 monthly an appointment recently, 28 the Dec, and the Consultant said ?you are in remission? however when she gave me my PP reading it was now 2.4, but and this seems to be crucial bit the rest of my blood measurement had gone to ?normal?. In Sep it was 2.1, now 2.4 is slightly up but it is not a big difference. But, the last time I went I was told ?we do not use the term remission? you are on a plateau. It becomes all rather confusing for an old brain. How can I be in remission? I am waiting for the backup letter that is sent to my Doctor to have a good look at the blood readings! Not that it will make one iota of difference to anything. I know where I am going and nothing is going to stop me, 50th wedding anniversary here I come (Nov 2012). Which just happens to be 6 months past my predicted ?Sale by Date?? He he LOL

Kindest regards ? vasbyte

David

[mhnevillParticipant]

Hi Dai

I just can't understand why you should be having such a difficult time – one d–m thing after another. I do feel for you and Janet. Will keep everything crossed that you get on the active arm of the trial.

Good job you are both the sort who won't give up. I will also keep you in my prayers.

Lots of love.

Mavis x

[mhnevillParticipant]

Hi David,

Just know you will get to your 50th Anniversary and much beyond. Let's face it, in the scale of things, even though your PP is measurable, the figures are still very low. Mine is now 13 and still no treatment apart from zometa.

Onward and upwards as always!

Mavis

[eveParticipant]

Hi Dai

Just been looking at a site about the trials,sounds very interesting you better hurry up with that 24 hr bottle,as I got the impression that it,s only 700 per country.
Those big bottles get heavy,cannot tell you how many Slim has filled plus they are heavy to carry any distance,so as well as the brown bag it pays to use a couple of plastic bags for grip and strength.

Just looked out of the window,to see a beautiful red sky,sorry must go down to the beach to watch the sunrise Love Eve

[kaychappersParticipant]

Hi Dai I do wish you all the very best. When I was speaking to my consultant on Monday she was telling me about a new trial (did not take in the name) and she was so excited about it. It gave me hope that if I did need it I was more than happy to try it. Do let us know what you are randomised too. Kay x

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