[DaiCroParticipant]

I have just had a phone call from the hospital to tell me that the funding for my Bendamustine treatment has been approved.

I have a consult next Monday, so the plan is to have the consult as normal, get the new prescriptions (Dex & Thalidomide) and then have the first intravenous dose of Bendamustine.

I will still be chasing up the last results for my free light chain test… and if they were the same or had decreased then I will add the possibility of returning to Revlimid in the future. My light chains went up by 400 over a 7 months period… when I relapsed after my SCT, it took 3 months to confirm, set up and start on Velcade… and my light chains went from 60 to 450 in a 2 month period. I am convinced that the only reason that my light chains did not reduce during my Rev & Dex regime was because my then rampant C: Difficule was stopping the Rev from absorbing properly… I am convinced that my body, released from the grip of C: Diff, would respond to Rev & Dex.

So, bring on the Bendamustine but I will not forget the efficacies of Revlimid.

Dai.

[DizzylizParticipant]

Hello Dai,
Brilliant news! But I agree with you about the rev: being there to try again, I also hope the bendamustine works for you, good luck and take care Dai

Love liz & kev xx

[jmsmythParticipant]

Dai some more great news. Well done!!! Take care
Love Jean xx

[BADGERParticipant]

Great news Dia

lets hope this is the one everything crossed keep well and stay strong
BIG BIG (((HUG)))
lOVE jO XX;-)

[mhnevillParticipant]

Dear Dai

At last some really good news from you. I couldn't be more pleased. You so deserve for things to go well now and I hope that Bendamustine breaks all records in its positive effects on your MM.

AND, I know what you mean about keeping Revlimid in the back of your mind for the future, but hopefully, after the Bendamustine you won't need maintenance. I do think that sometimes, we as patients, have a better idea of what suits us. I have a very good feeling about Thalidomine and feel sure it was what helped kick my PPs into touch.

All best wishes and prayers. Will especially keep you and Janet in my thoughts over this Christmas.

Love Mavis x

[tomParticipant]

Well done Dai, I am not the only one on here that hopes it works a treat for you Dai with little side effects.

Keep strong and stay well

Tom "Onwards and Upwards" xx

[VickiParticipant]

Hi Dai,

Just checking in and hoping that the new regime will work wonders for you :-). Go on you can do it….you deserve the success as you are so supportive of the rest of us!

Vicki and Colin x

[StanstanParticipant]

Hi Dai

I cannot get back onto our discussion with this new computer. I had a PE and DVT in 2001 after an operation on my leg following a motorbike accident. I told the hospital this so they wre aware. I was then put on Clexane 40mg along with CDT. This was fine for a few months. then they decided to up the Thalidomide from 100 to 150 mg. I took this for 2 days and collapsed in the morning with a PE. I came round and when in A & E, I collapsed again, they had to send the crash team to revivie me.

Since then, while in my local hospital, they took me off all drugs apart from the Clexane. They decided it was the Thalidomide that caused the PE as it thickens the blood and have taken me off it completely..
They have now put me on 120mg Clexane.

I was told that I will not be going back on Thalidomide. They have just done a bone marrow biopsy in Southampton and on 3rd January they will decide what to do next. All I am on at the moment is the Clexane.

See what happens next. How are you doing? What have they decided with you?

Love Charlie

[VickiParticipant]

Hi Charlie

Just wanted to say hi and glad to hear from you. Just to give you a bit of encouragement, Colin has had his SCT and whilst it wasnt easy, it seems to be paying dividends at the moment.

Keep your chin up and keep going:-)

Vicki and Colin x

[TerryMGParticipant]

Hi Di,

Keep me in the loop on this and let me know how you get on. I an awainting appointments to have Radio Theropy on my Right leg. I think it is so big that Rev cannot work on it alone.

Good luck…. Terry MG

[Author]

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