One of our faithful readers commented on the "Clinical Trial" posting with a series of really good questions and comments. So good in fact that I decided to post what he wrote followed by my responses to them. My responses are in italic.
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I assume that you do know that lenalidomide is the generic name of Relimid, and that likewise bortezomib is Velcade..
Yup - I did know that.
Is there a reason why your oncologist can’t arrange for the Velcade injection and blood test to be done locally? I realize that you’re in a clinical trial, but you’d think that they could accept blood shipments from NH and allow for injections by somebody local. That’s not tricky stuff.
We certainly did ask about getting the Velcade in Laconia or Hookset, but it turns out that it is a requirement of the clinical trial that it all be done at DFCI. And we really think that being in on the clinical trial is a good thing. We figure that we have really top notch doctors trying to prove that our Arm of the clinical trial is the one that keeps people alive the longest.
Regarding the "blood shipments" though, this could be the reason for requiring that it all be done at DFCI. Understand that they draw blood and 20 minutes later the results are available - not only to our doctors, but also to us via something called "Patient Gateway". They want the results before they give me the Velcade. This was especially important back when I was having trouble with my sodium. They actually ran the blood test three times over 2 1/2 hours - thus enabling me to actually get the treatment. Pretty impressive if you ask me.
The jury is still out on whether stem cell treatment is a good thing or not. It is extremely dangerous. Wiping out the immune system is insane (but necessary). Scientists are unsure whether the stem cells that they are transplanting are 100% good or whether some of them are in fact mutated and spawning cancerous cells. There is a school of thought that cancers actually originates in stem cells, not just downstream. Of course, if there were a proven method for cleaning the extracted stem cells, this could lead to a perfect cure.
Yes, the jury is still out on this issue and I am sort of on the jury. This is the whole point of my clinical trial. It is only because the jury is still out that I agreed to be on the trial. That plus the fact that I get the stem cell transplant anyway at the end. I just hope it works as well then as it would after cycle 3.
It’s curious that in Arm A of the clinical trial, they are harvesting stem cells after 3 cycles, but then continuing to do 5 more. If each cycle helps clean up the bad stuff, then more cycles should yield cleaner stem cells. On the other hand, if 3 cycles leads to a minimum, and the next 5 are merely delaying relapse, then maybe that is the best time to harvest.
I had exactly the same question. It turns out that three cycles is when most people have gotten solidly into remission. Apparently, one of the RVD drugs (I have forgotten which) makes the stem cell extraction more difficult and less effective. So it is a balancing act between greater remission and getting a good harvest of stem cells. The reason for the 5 follow-on RVD cycles is to see if 5 RVD cycles is as effective as the stem cell transplant. Apparently, there is some sort of 8 cycle limit due to toxicity of one of the drugs.
By the way, I incorrectly stated in yesterday's blog that Arm B does stem cell harvest after 2 cycles. That was in error. Arm B does harvest after 3 cycles - same as Arm A.
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I assume that you do know that lenalidomide is the generic name of Relimid, and that likewise bortezomib is Velcade..
Yup - I did know that.
Is there a reason why your oncologist can’t arrange for the Velcade injection and blood test to be done locally? I realize that you’re in a clinical trial, but you’d think that they could accept blood shipments from NH and allow for injections by somebody local. That’s not tricky stuff.
We certainly did ask about getting the Velcade in Laconia or Hookset, but it turns out that it is a requirement of the clinical trial that it all be done at DFCI. And we really think that being in on the clinical trial is a good thing. We figure that we have really top notch doctors trying to prove that our Arm of the clinical trial is the one that keeps people alive the longest.
Regarding the "blood shipments" though, this could be the reason for requiring that it all be done at DFCI. Understand that they draw blood and 20 minutes later the results are available - not only to our doctors, but also to us via something called "Patient Gateway". They want the results before they give me the Velcade. This was especially important back when I was having trouble with my sodium. They actually ran the blood test three times over 2 1/2 hours - thus enabling me to actually get the treatment. Pretty impressive if you ask me.
The jury is still out on whether stem cell treatment is a good thing or not. It is extremely dangerous. Wiping out the immune system is insane (but necessary). Scientists are unsure whether the stem cells that they are transplanting are 100% good or whether some of them are in fact mutated and spawning cancerous cells. There is a school of thought that cancers actually originates in stem cells, not just downstream. Of course, if there were a proven method for cleaning the extracted stem cells, this could lead to a perfect cure.
Yes, the jury is still out on this issue and I am sort of on the jury. This is the whole point of my clinical trial. It is only because the jury is still out that I agreed to be on the trial. That plus the fact that I get the stem cell transplant anyway at the end. I just hope it works as well then as it would after cycle 3.
It’s curious that in Arm A of the clinical trial, they are harvesting stem cells after 3 cycles, but then continuing to do 5 more. If each cycle helps clean up the bad stuff, then more cycles should yield cleaner stem cells. On the other hand, if 3 cycles leads to a minimum, and the next 5 are merely delaying relapse, then maybe that is the best time to harvest.
I had exactly the same question. It turns out that three cycles is when most people have gotten solidly into remission. Apparently, one of the RVD drugs (I have forgotten which) makes the stem cell extraction more difficult and less effective. So it is a balancing act between greater remission and getting a good harvest of stem cells. The reason for the 5 follow-on RVD cycles is to see if 5 RVD cycles is as effective as the stem cell transplant. Apparently, there is some sort of 8 cycle limit due to toxicity of one of the drugs.
By the way, I incorrectly stated in yesterday's blog that Arm B does stem cell harvest after 2 cycles. That was in error. Arm B does harvest after 3 cycles - same as Arm A.
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