Monday, May 10, 2010

I’m on the Rev-Lite clinical trial

False starts:
After 2 false starts I am now on the Rev-lite clinical trial for relapsed myeloma.
False start #1 was a lytic lesion suddenly detected in my right femur requiring hospitalisation for intramedullary reconstruction nailing.
False start #2. 14 days after discharge I could not put any weight on my right leg and it was very painful. An x-ray showed there was now a fracture in the lesion, in hospital for 8 more days.

Clinical trial summary:
My Rev-Lite trial commenced on Wednesday 28th April 2010.
Study title: Phase II trial of low dose Lenalidomide and dexamethasone in relapsed or refractory multiple myeloma (Rev-Lite) in patients at high risk for myelosuppression.
The purpose of the study is to see whether a lower dose of Lenalidomide in combination with dexamethasone is effective in treating multiple myeloma which has not responded or relapsed to prior treatment, while producing fewer side effects in comparison to the higher dose used in previous trials.
Brand name = Revlimid. Generic name =Lenalidomide.
Treatment for first 4 cycles of 28 days is:
Lenalidomide 15mg dose on days 1 to 21, then 7 days free.
Dexamethasone 20mg dose on days 1-4, 9-12, 17-20, and then 8 days free.
Aspirin daily.
After 4 cycles the status of my disease will be reassessed. If my disease has shown improvement or remains stable I will continue on the study. If my disease has become worse my participation in the study will stop.
There are the normal warnings of many side effects.

Funding:
In New Zealand we have a public health service. Unfortunately the funding agency Pharmac does not fund Valcade or Revlimid. They are approved for use in NZ and applications for public funding are in the system. We have to compete for the Pharmac dollar along with all the other cancers and illnesses. If we want it we have to fund it ourselves. Currently 6 months of Revlimid costs about NZ$50,000. The Rev-lite trial is at no cost to me.
Private health insurance for cancers is a recent development in NZ that is gaining popularity though the cost is alarming. Previously we had believed that the health service would be the provider. I did not qualify for the Valcade trial but do for the Rev-lite trial.

My myeloma journey continues.

7 comments:

goodbloodbadblood said...

Sid;

I am happy to learn that after a few interruptions, you are finally going forward with treatment. I hope it proves to be successful and that you can once again pursue an active lifestyle.

goodbloodbadblood said...

Sid;

I am happy to learn that after a few interruptions, you are finally going forward with treatment. I hope it proves to be successful and that you can once again pursue an active lifestyle.

Sandy said...

Sid, it's good to hear you are in the trial and I join your support team in intending that it gives you a chance to have another arrest of this thief.

Pat and Pattie Killingsworth said...

Hi Sid-

What a great idea for a study! Low dose Revlimid has been working for me. My myeloma is slowly reappearing. Hard to say if it is because Rev doses are lower or if it would have happened anyway. We may never know. I'm just happy for you! I know it varies from patient to patient, but mg for mg, dollar for dollar, I feel Revlimid/low dose dex offers the best hope for long term response we have found so far. Might it help to add Doxil or Velcade and/or something else, too? Maybe. But that is a lot of poison to be taking if you don't have to, don't you think? Good luck, friend- Pat Killingsworth

Pat and Pattie Killingsworth said...

Hi Sid-
I forgot to add this: I just went back and checked your dex dosing schedule. Low dose? That is still a lot of dex! If and as you progress, bet you can get them to drop mg and/or frequency down. 20 mg once a week should be plenty--and is considered "low dose" here in the States. Good luck!
Pat Killingsworth

Sid said...

Thank you for your support folks. I never feel alone.
Pat, if my disease is stable after cycle 5, dexamethasone is reduced to days 1 to 4 only.
Sid

Susie Hemingway said...

Wishing you all good luck with this trial Sid. We are sending positive vibes for a very good outcome and will be following closely.