[KeithH17Participant]

Hi all
Got back from a great holiday on Sat and started treatment today Tues.
I'm taking 1x25g capsule of Rev for 21 days with 40g Dex on each of the first four days of each cycle which
will be scaled down over a period of time with 1 week's rest between each cycle.
I also self inject with Tinzaparin every day to keep the blood flowing to the right places.
Bloods will be checked on a week to week basis and I'll continue with the Zometa every month as usual.
I have a lump on my forehead which appeared about a month ago which may or may not need RT.
The consultant want's to see if the Rev shrinks it down before deciding any treatment in that area.
And there you have it as promised and I'll update as things move on.
One other thing to mention,this is not a trial as I originally was lead to believe because the trial in question
has closed due to there being sufficient data extracted from it.
The treatment I'm receiving is the same,only the monitoring of it is slightly different.

Good health to you all…Keith.

[PerkymiteParticipant]

Hi Keith, the holiday sounded good! Best of luck with the new treatment.

Kindest reagrds – vasbyte

David

[eveParticipant]

Hi Keith

So glad you could enjoy your holiday with out treatment hanging over you.

Would be grateful if you keep us informed of how you get on with treatment as it is nice to know what is in the pipeline and how it is working.
Pinching Toms saying Onward and Upward.Eve

[HelenParticipant]

Glad you had a good holiday Keith, fingers crossed for the Rev/Dex
Love Helen

[tomParticipant]

Hi Keith

Welcome back 😀 am sure like us all that has been away when we are back it soon becomes a distant memory Lol

Good Luck with the rev and dex and as for the injections :-/ I for one wouldn't look forward to that :-S but if it has to be done its done 😎

Good Luck with it M8

Tom "Onwards and Upwards"

[BADGERParticipant]

Hi Keith

glad you had a great holiday there will be many more I am sure fingers crossed for the new treatment hope you dont stuggle too much with the DEX
lOVE jO X

[EvaParticipant]

Dear Keith,
Let us know how it's going. And now that your holiday is over, remember to do things each day that are an expression of who you are, even if you can't get around much.
I used to run when I was younger. I'm on Thal but not on Dex at the moment and I've set myself the task of walking a certain distance every day. It's been very good and I don't know if this is a coincidence, but my neuropathy feels better since I've been exercising.
Eva

[DaiCroParticipant]

Hi Keith,

My first two cycles were monitored on a fortnightly basis…. With general bloods and a Freelight test (Bence Jones). Cycle 3 was as normal and I was declared 'off probation' from Cycle 4 onwards. I am now on week 2 of Cycle 5 and I seem to be fashioning some sort of normality.

I take 25mg of Rev, daily for 3 weeks and then a rest and I take my Dex every Tuesday (which is wiped out as a 'stay in and sweat' day.:-) Each day after that improves until Monday… Which is an almost 'normal' day.

I hope Rev & Dex proves both efficacious and kind.8-)

Regards 🙂

Dai.

[KeithH17Participant]

Thank's for all your replies guys…Like you Dai I also take 25mg of Rev for 21 days and the dreaded Dex for the first four days of each week although I've been told this will be gradually scaled down.
The first two cycles are the worst apparently mainly due to the fatigue but then as the body adjusts things hopefully will settle down somewhat.
What doesage of Dex did you start on and are you on a trial?

Keith.

[DaiCroParticipant]

Hi Keith,

I have taken my Dex once a week from the start… 2mgx20=40mg every Tuesday.

My bloods were monitored fortnightly for the first 2 Cycles (I was told 3 but they gave me a 4 week appointment at my 3rd consult).

I was interred with a lung infection during Cycle 3 and I was told that my upward rise in my light chains may well mean a relapse and they wanted my permission to put me forward for a Bedamustine trial… just in case, so I had to say yes. My lead nurse, who covered my interim bloods, said the upward rise was most likely 'blip' judged but the other blood results and ratios but it seemed the medics either disagreed or were not taking chances

My Kappa Light Chain readings went from 311 to 226 to 135 to 212 (to 175) to 125. The bracketed reading 'slipped the net' and wasn't picked up due to 'holidays'… that was the last actual reading when the medics visited my sick-bed (and sent me home with AB's various and food for deep thoughts).

So my light chains were actually dropping again, as per lead nurse prediction, and continued to drop but for some reason they didn't order a FreeLight Test at my next consult (3) so I won't know where I am now for another 3 weeks.;-) 😛

Not on trial… but it feels like it at times.;-)

Dai.

[scott9Participant]

Hi Keith

Good luck with the treatment. Hopefully the effects won't be too bad.

Dai: Poor old you as you have been through the wringer with this disease. I really hope your light chains settle down and you can get on with your life as best as possible.

I'm due to see my professor on 23 July to find out if my readings are a blip or whether I have to have more heavy duty chemo. Life ain't easy for us lot is it!!!!!

Keep strong.

Scott

[KeithH17Participant]

Thank's for the prompt reply Dai and very succinct as usual.
I'm taking 2mgx20 on days 1-4 the same 9-12 and 17-20 is that the same as yourself?
I don't have the Light Chain MM so it can't be traced in the urine and even the blood test is not so conclusive which means a BMB to be absolutely sure. I've also read on here that the Free Light Test is expensive to carry out so they try to avoid doing it unless it was important to do so (what's more important than a person's health?) but no stone should ever be left unturned in my opinion,disagreement in the medical profession is of much concern to me.
Have you relapsed Dai or was it a blip? I had my bloods checked yesterday prior to start of treatment although I don't yet have the results as yet…My results as at 07.06.12 are as follows Hb: (11.1) WBC (3.0) Plts (79) Neuts (1.4) and my Paraprotein levels 22.40gil.

Keith.

[DaiCroParticipant]

Hi Keith,

We are taking the same amount… Me in a once a week glut and you spread out over twice weekly.

No, I haven't relapsed… Far from it at the moment with my blip, from 135 to 212, back down to 175 and then down to 125. There was no FreeLight ordered last month so no idea wher I was at the last consult but when I went into the clinic for my pre-consult bloods I asked if a FreeLight was ordered and the new female phlebotomist said 'No'. The senior phlebotomist turned around and said 'If Mr Crowther orders a FreeLight Test' then he gets one'. I said, 'Yes please' and he said 'Sorted' and one was taken. Nice to know.8-)

With Revlimid being a therapy, rather than a chemotherapy, I might never reach the magic figure of 13 to qualify as in 'Remission' but if I can get down to something like 50 and stabilise, then that will do me fine. I don' really start feeling the effects of MM until I hit 200+ so anything stabilised under a 100 will suffice.

I do hope that your PP's reach a good figure before they stabilise. Staying on Rev & Dex until Carfilzomib comes on board (Kyprolis will be the Trade Name) would be good for both of us because used in tandem with Rev & Dex it can knock MM right back and give Rev & Dex a new lease of life. the good news is that the 12 good men and true of the US FDA voted by 11 for – 1 abstention iin favour of licensing Kyprolis. Now the full FDA committee doesn't have to follow the findings of the advisory committee but it usually does. That means it could get it green light for full licensing on, I believe, the 27th of July next. If so, then it could reach Europe & the UK for review and licensing by next summer (2013) or just after.

I have been following Carfilzomib/Kyprolis very closely after just failing to get on its World Trial in February (it closed late February with me qualifying for everything except 0.5% urine in my MM – 2 weeks later I was there… 2 weeks too late).
My consultant is very bullish about its efficacy… And so am I… So am I… with knobs on.:-) 😀 😎

Dai.

[KeithH17Participant]

Thank's for the info Dai and pleased to hear you have not relapsed. I also have been following the progress of Carfilzomib and at the last MM info-day I attended the consultants there were also very bullish about it's use.
The only problem I can see is the snails pace at which everything seems to go at once things reach our shores.
Your timescale seems a bit optimistic to me although I do hope you are right. I was reading an article in the Daily Mail one day this week which said that we as a health service were wasting money trialling drugs that had already been tried and tested in other countries and proved to work but because of silly protocol we have to go through it allover and causing unnecessary distress to the patient as well as racking up the cost.

Keith.

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