[KeithH17Participant]

Hello all, yes just as I thought I've relapsed once again after only 10mths.
See Consultant next Tuesday to discuss going on a clinical trial (Revlimid&High dose Dex).
This will be taken over a 21 day period with one week's rest.
At least it won't start until after my Holiday so I will be able to enjoy myself as planned all being well.
I'll post more details after I have discussed things with the Consultant next week.

Best of health to all.

Keith.

[DaiCroParticipant]

Hi Keith,

I am sorry that your suspicions have been confirmed.:-(

I wish you luck with the Rev & Dex… I am on Cycle 4 and so far so good.8-)

Enjoy your holiday… and then on with whatever it takes to last through to Carfilzomib and the other good looking treatments about to come online.:-)

Dai.

[DebsParticipant]

Oh Keith,
So sorry to hear that news….I can't imagine how you must feel about it.
On the positive, I'm glad you can wait till after your holidays, and if it helps, I never suffered badly with revlimid when I had it with dex (or without the dex now). The worst thing was the fact that everything tasted peculiar….not horrid, just weird!!!
Have a lovely holiday and take care
Debs x

[HelenParticipant]

Hi Keith
I'm sorry its come back, but get away and enjoy the holiday as much as possible, and as Dai and Debs have said I hope the Revlimid does the trick, I'm on it too – without Dex , and everything tastes funny for me too.
Hang in there
Love Helen

[KeithH17Participant]

Thank you Helen,Debs and Dai for your kind words.
There's another thing I forgot to mention,I have what looks like a lump near my forehead which started to appear around 3 weeks ago.
It feels tender to touch and I pointed it out to the Consultant who said it could be a Plasmacytoma which if so could be zapped with RT.
This was another thing I feared as Lytic lesions were found on my skull prior to my first relapse 18mths ago.
I mentioned this to the Doctor who said he would be keeping an eye on it incase it became bigger.
If it's not one thing it's another.
Another thing I need to know is will all of this mean I'll be taking meds for the rest of my life however long that is?
This is one of the things I'll be asking him on Tuesday along with anything else I can think of.

Cheers Guys.

Keith.

[DaiCroParticipant]

Hi Keith,

Regarding the meds for life, I have already broached that subject and the answer seems to be yes. Rev & Dex are therapies, not chemotherapies… therefore you take them until they stop working (median for those who suit the treatment is currently 30 months). I know that there is nothing official beyond Rev & Dex but there are trials and of course any successful previous treatments.

CDT worked marvellously well for me… so I will ask about that when the time comes… but even then.. if it does suit and work I imagine there will be a maintenance therapy involved.

Carfilzomib looks good… my consultant was bullish about it when I tried (and failed due to failing to get 5% Myeloma in my urine, after three attempts, before the trial closed) to get on it after my Velcade relapse. She said that unlike Revlimid, which damps down but doesn't eradicate MM, a fixed number of Cycles of Carfilzomib actually knocks MM right back… giving Rev & Dex (taken in conjunction with Carfilzomib) a longer run with few MM PP's or Light Chains to worry about.

If we can last on Rev & Dex until Carfllzomib is licensed here (looks like 18 months or so) then there is a good chance of a Rev & Dex extension beyond the 30 month median.

So there is hope… and other good looking therapies coming on line in the next couple of years.8-) 🙂

I'm not being new age here but I strongly recommend that you go to Amazon and order yourself a copy of the DVD 'The Secret'… for positivity and the 'Law Of Attraction' it really is superb.8-)

Regards

Dai.

[KeithH17Participant]

Thank's Dai for a very informative posting from you as usual.
Although Rev and Dex are well tried and tested the Consultant did say that I would be on a new trial and that I would be the first to be on it.
Maybe he mean't first in my area I don't know but will find out more when I see him next Tuesday.
Apparently the Rev is given over a 21 day period along with with a high dose of Dex which will be gradually reduced further down the line,number of actual cycles I'm not sure at this moment.
As for Carfilizomib I've also heard good reports about it and then as you say returning to previous therapies is another option…Velcade my last treatment worked very well for me with little side effects.
You have confirmed what I thought in terms of continuous ongoing medication but I consider that a small price to pay so long as the disease is kicked into touch for as long as possible.
But there's one small point I'd like to make and that is….does this mean the word remission no longer applies?
Answers on a postcard.

Keith.

[tomParticipant]

Hey Keith well what to say?? you know I feeel for us all when it fails such a darned illness this bloomin MM but am sure you are strong enough to fight it off and get back into remission 🙂

Get yourself off on your Holls and if you can push the MM into the background for a time.

Tom "Onwards and Upwards"

[BADGERParticipant]

Oh Kieth
Bl****dy hell I am so sorry I know it comes to us all but we just hope for a little bit longer, go away and enjoy your holiday and good luck for the next treatments this might be the one for you
Love Jo xx

[DizzylizParticipant]

Hi Keith

Sorry to here your news, just hope you have a good holiday before you start your treatment.

Thinking of you liz & kev xx

[mhnevillParticipant]

Hi Keith

I'm also so sorry to hear your news. Enjoy your holiday and come back with a positive head on!!! As Dai says, there are so many good stories at the moment with new drugs coming on line. Hang on in there. I know your positive attitude will see you through.

All good wishes.

Mavis x

[AndySParticipant]

Hi Keith,
I'm sorry you have relapsed, though it's good to know that there are more and more effective therapies being developed to give us hope. When I was on CDT everything had an odd taste which I was told was due to the Dex. I'll be able to find out soon as Dex will be part of my new regime too. Best of luck with your Revlimid/Dex trial.
Andy

[andygParticipant]

Hi Keith
Sorry that your fears have been confirmed. When we spoke at the support group you were very sure you'd relapsed. I'm on the Rev/Dex regime though not as maintenance as a treatment. Just started my 3rd cycle Saturday. Hopefully it'll do great things for us both.
Have a great time in Jersey and come back fighting fit ready to take on this next challenge in the battle with MM. You'll soon be sat in the sun watching England thrash the Aussies in their own backyard.
Wishing you all the best.
Andy

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