Comments on: Making Therapy Decisions With Eyes Wide Open

By: Beth and John

Beth and John — Sun, 13 Apr 2008 20:53:29 +0000

Chaya and PC–

I don’t think there is another couple in the US that has done as much research and invesitation for CLL and then turned around and shared it with others. Your sharing is amazing, Hugs, Beth and John

By: becky

becky — Tue, 01 Apr 2008 21:01:37 +0000

Haven’t had time to read all that is here but I wish them all the best and will remember you in my prayers . I wonder if there is someone out there who is farther along in the stemcell transplant process for cll than my husband who had his in July 07 , and I wonder how they may be feeling?

By: Robert

Robert — Tue, 01 Apr 2008 00:59:52 +0000

Chaya & Harvey,

Congradulations on soo much you have done for the CLL community. The decision to go for the mini-allo transplant I am sure has been a tough but well informed decision for you…….. God knows that we all wish you the best.
But, I hope to add, that there may be a day when mini-allo won’t be the best option for most all of us CLL patients. Thus, I just wanted to add some thoughts. Maybe out of false hope or out of what I believe to be true hope that we may be facing better choices in the not too distant future.

Even now, today March 2008, there are some really promising drugs that have just entered into phase I/II clinical Trials. Trubion pharmacueticals has started a promising CD-37 tx that according to Bird, may turn out to be the best therapuetic yet for CLL.
Medarex just opened their clinical trial with a Cd-19 treatment that also seems scientifically very sound. There are others being developed.
In an abstract from a T Robak, several other developing treatment stratagies are discussed.

There is no doubt that the decision you’ve made with “Harvey” is the correct one. But for those who can continue knocking down their CLL (assuming it can be done that one other next time before a future mini- allo) there is hope with newer treatments coming down the pipeline.
In my case, I’m chemo naive still, but I know that I will require treatment in the next year or so. MD Anderson wants me to start treatment when my count gets around 150, not the high numbers that we’ve seen in the past for that first treatment. There is rational now in not letting the cancer get so strong. Attacking it before it becomes heavily saturated into every nook of our bodies so to speak.
Hopefully we all have learned in your web site the fact that we’re in an envirnment where there is no clear cut path that leads to the end of the tunnel. What may be right today may be wrong tomorrow and what may be right for one patient very well could be wrong for the next.
If there is one thing that every one of us needs to do in following your example, it is simply to become extremely well informed. Our best advocate is ourself first and by studying everything we possibly can, we can increase our odds of getting the most out of life. Getting the most not just with more time on earth, but also in the quality of that time as well.
You and Harvey are in our prayers.

By: Chaya

Chaya — Wed, 12 Mar 2008 02:25:06 +0000

Looks like I was right in my estimate of survival of Genitope’s MyVax vaccine. Here is a snippet from the company press release just a couple of days ago:

Press ReleaseGenitope Corporation to Suspend Development of MyVax(R) Personalized Immunotherapy
FREMONT, Calif.–(BUSINESS WIRE)–March 10, 2008–Genitope Corporation (NASDAQ:GTOP) today announced that, based on a meeting with representatives of the U.S. Food and Drug Administration (FDA) to discuss the previously announced results of Genitope’s pivotal Phase 3 clinical trial of MyVax(R) personalized immunotherapy in previously untreated follicular B-cell non-Hodgkin’s lymphoma (fNHL) patients, Genitope intends to suspend development of MyVax(R) personalized immunotherapy. Genitope is evaluating its alternatives with respect to the other aspects of its business, including development of its monoclonal antibody program.