I have learned to ignore the frequent posts about new drugs in trial, as I found that most lead nowhere, and most do not do anything for us.
However, I do believe at this point in time, we actually have a lot of drugs that really might be very effective for us in trial.
Actimid, which is an analog of thalidomide and Revlimid, has been in trial at the Mayo Clinic. The trial was recently suspended, but only because the doctors are trying to work out the dosages. The name actually has been changed to palinomide or something like that.
NPI-0052 which is a new proteasome inhibitor (like Velcade) supposedly more effective with less side effects. I asked Dr. Berenson about this, and he said "it is just another Velcade", which I said did not seem like a bad thing to me. However, he also added he expects to have an even more effective proteasome inhibitor in clinical trial next year, but he has not been at liberty to tell me anything more.
Finally, although an HDAC inhibitor called PXD-101 was once posted about much on the acor list, it was never found to be effective. However, there is another newer one by Novartis that really looks promising, that is being tested together with melphalan at some places, and with either Revlimid or Velcade at others.
LBH589 See this link to get your hopes up.
There are some other things in trial that I found fascinating. I actually posted most of this on the acor list, but as usual it was all censored, and I am not sure why exactly.
I believe that particular post was censored as there is one very interesting trial that has to do with training the immune system of mm cells to recognize malignant cells, and I compared this to an alternative place that apparently the acor listowner feels he has to censor.
Perhaps what they specifically doat that place is B.S., but there are lots of legitimate scientists working on the same line of reasoning..to get the immune system to seek out, recognize, and destroy cancer cells. I had read that the practical application is 5 years away (light years ahead of most genetic approaches), but apparently, by the trials I came across on clinical.trials.gov.
I believe the time is much closer than 5 years.
Alex Maas
Hi Alex,
I am actually on a trial of CC-4047 (now called Pomalidomide?) at Mayo in Rochester. This is the analog of thalidomide and Revlimid that you speak of. This trial has not been stopped - the dosage is 2 mg daily, every day (no weeks off) and dexamethasone 40 mg once a week. For me, the dex has been reduced twice, and is now at 12 mg once a week. I also take an aspirin a day to reduce the chance of a deep-vein thrombosis.
Results are very good so far after my seventh 4-week cycle. M-Spike down from 2.7 to 1.0 and now either stable or still trending downward - time will tell. My doctor has indicated that a very large majority (almost all) of the 50 trial subjects have had a response to the drug, even some for whom Revlimid no longer works.
Best of all, no side effects yet except a reduced heart rate (bradycardia). No one is worried about that, including me, because I'm a runner with a strong heart anyway. I think we can afford to have a little hope about this drug.
Take care, Don
I am wondering how long you have been on the trial. Also how are your red/white cell level?No issues with fatigue?
Best wishes, hope it can help you for a very long time
I was on revlimid for about 19 months. The worst thing was the fatigue.
Kevin
I am wondering how long you have been on the trial. Also how are your red/white cell level?No issues with fatigue?
Best wishes, hope it can help you for a very long time
I was on revlimid for about 19 months. The worst thing was the fatigue.
Kevin
Don-
Thanks for posting info on CC-4047 or palidomide as I searched wikipedia and could not find anything. Please continue to let us know about your progress. Yes, we will have a little hope about this drug. Thanks.
David
Hi Kevin,
I have not experienced fatigue with CC-4047, or any other significant side effects except bradycardia - my heart rate is about 10 beats per minute lower than it was before the trial began. In particular, white counts are quite normal. Red count and hemoglobin are at the low edge of the reference range, or just below, but this doesn't translate to fatigue for me. My red counts have always been on the low side. Plenty of side effects attributable to DEX, though.
A little bird recently told me a secret: The Mayo trial of CC-4047 may re-open soon, with 30 more spaces reserved specifically for people for whom Revlimid is a failed regimen. I'm guessing that Celgene and Mayo really want to know if CC-4047 can rescue some folks who cannot be rescued by Revlimid. No info yet on what "failed" means. The original trial criteria required an M-spike of at least 1.0, so I'm guessing that will be another requirement, though I don't know that for sure.
Anyone interested, I recommend contacting your Celgene representative, who may know more about this than your doctor unless you go to Mayo.
Don
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