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.

W5 Report on the high cost of cancer drugs (Canada)

Canada – The CTV investigative journalism program W5 will have a feature on the high cost of cancer drugs in Canada. The show airs tonight, Saturday, March 27th (check your listings) and there will be mention of Revlimid and multiple myeloma. I will post a link to the video once if appears on their website. For now, you can access the W5 website by clicking here.

UPDATE:
All 4 parts of Pills, Patients and Profits can be seen here. Two MM patients needing access to thalidomide and Revlimid are featured. 

Plasmaphoresis

In March of 2007 I was at my monthly oncologist appt for routine labs. I had previously had creatinine levels in the 0.8-1.0 range. Looking back in my records my creatinine on January 2, 2007 was 0.9. January 30th it was 1.0. February 27th it was 1.5. March 30th it jumped to 4.0. At this last level my doctor advised me he was going to admit me to the hospital.

At this time I had been on Biaxin, Revlimid and Dexamethasone for three months with not a very dramatic response. I had also received Zometa recently and had been on Ibuprofen. While in the hospital I was diagnosed with Acute Renal Failure (ARF). I was put on i.v. fluids and my chemotherapy was changed to Velcade. I also had a kidney biopsy performed which revealed I had “myeloma kidney”. My doctors call was to have me receive plasmapheresis treatments.

I first had to have a catheter inserted near my collar bone. The catheter had two lumens. One took the protein out and the other replaced it with albumin (I think Beth, I’m not 100% sure). I had five treatments, two as a hospital patient and the other three as an out-patient. It was an amazing experience. I was connected to this fairly large machine that had buttons, dials and lights along with the tubes that were connected to my catheter. The process took between 60-90 minutes. They can adjust the speed of the machine and it was necessary to do this a little at a time.

The process was painless. I do remember I was chilly during the transfer. They warmed the albumin before it was introduced to my system. They did tell me I might experience tingly sensations around my mouth but I never did.

During the process you could read, watch tv, listen to tapes or sleep. The nurse was there with me during the total procedure.

Each day I had treatment they took my labs and my creatinine continued to improve.
In September I did a SCT and my creatinine is now at 1.9.