[DaiCroParticipant]

Thanks Scott…

As I see it you are leading the pack… with me and Keith treading on your heels.;-)

The problem is that Rev & Dex might settle down and give me 18 months to 2 years… perhaps more if Kyprolis (Carfilzomib) is licensed while Rev & Dex are still working… my consultant was quite bullish about the efficacy of Kyprolis working with Rev & Dex. But the treatment could relapse at any moment as well… talk about living from month to month!!!:-/

Do these Proteane Inhibitors work with Bendamustine as well? I don't know that much about Bendamustine… how are you finding it?:-|

There are several good medicines out there at the moment… it's a matter of getting them licensed and into Europe while we are still in the game… hopefully.:-| 😎

Dai.

[KeithH17Participant]

Hi all, I am currently on the 5th cycle of Rev/Dex and had my last blood test on 22/10/12 which showed Hb 10 WBC 2.1 Plts 37 Neuts 1.2 and PP's 2.13gl. I will be having the next check on 05/11/12. Platelets and Neuts are the main concern so I'm hoping there's an upward trend at the next check. I feel ok in the main although I have picked up a cold over the last couple of days which has left me with a horrible cough. I am still off tinzaparin because of the low platelet count which will be reviewed on Monday. When I had my stem cell harvest they got enough for 2 transplants which I have now had. Like you Dai I only got a matter of months in terms of remission so now it's a life of going from one treatment to another until they run out and then what? I know the line from the consultants is one sct is the norm and in rare cases two but what about 3 if enough cells can be mobilised from a second harvest or even a donor sct if a suitable match can be found? Has anyone heard of any other possibilities when the options run out? I feel that N.I.C.E. will be having the last word on whether I live or die and that makes me feel very uneasy.
When you talk about Kyprolis it gives me hope but will we get it in time? With all the uncertainty going on regarding drugs being made available or not I can well understand patients feeling depressed with the uncertain future.
We don't have the time to wait so if the treatment is available then we need to have it asap.

Good health to all.

Keith.

[scott9Participant]

Hi Dai

I've just logged on again. To answer your question, I'm having no problems at all with the Bendamustine. I don't like the steroids, but who does. The dex is only once a week so I can cope with it. Hopefully the Bendamustine etc will get the light chain readings back down again, but then what? I don't fancy the Stem cell transplant option as my kidneys are badly impaired so there is a higher mortality risk. However I may have no choice in the matter. It could be that or nothing and nothing means the cancer will be back again. Living with this is no fun, is it.

Keep fighting all.

Scott

[eveParticipant]

Hi
I have come on to comment because I so admire you fight against Myeloma,here you are three people who have gone through all this treatment and are still in there battling.

I know you all have no choice if you want to live,but its the stamina I suppose I admire,any body reading your posting,and not know much about your treatments,must be thinking WOW,plus how can they be so off the cuff.

So Keith Dai and Scott,If I wore a hat I would take it off to you all,keep on with your holidays,special days,and all the things you enjoy,may be that is the best drugs of all.Eve

[mhnevillParticipant]

Hi you three!

I'd also take my hat off if I wore one!!!!

Love and best wishes to all of you.

Mavis x

[tomParticipant]

Well I have a Bald(ish) head so I wear a Cap and that is Raised to the rafters for those three 😎

Tom "Onwards and upwards"

[Author]

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