Monday, May 23, 2011

Clinical Trial

Today I got an appointment at MD Anderson Cancer Center for evaluation of entry into a clinical trial for exactly what I am diagnosed with.
http://clinicaltrials.gov/ct2/show/NCT00496587

I will be traveling Wed for a Thursday appointment and will return Saturday afternoon.
This is exciting to me (Praise God!) since:
it feels more like we have a real plan
we saw an online success story similar to my condition.

Initially I thought I would have to push out the appointment to next week because the ticket cost was very High (~$2000), but after calling United, they were able to get me a free miles ticket. The only thing is that I couldn't return on Friday night as I wished so I will return on Sat afternoon. (Another Praise!)
(They actually say we need to be prepared to spend up to 7 days for this, but was told that this normally is jut 1 extra day to get test results etc.)

One of the exclusion criteria was no major surgery in the last 28 days. So if Karen had asked them to continue and remove the kidney/gall bladder/colon, I would not be eligible for this clinical trial.

I had sent an email to the oncologist on Saturday with two possible clinical trials I found, he responded that I could pursue either one if I wanted.
This morning, I sent the following questions, and he called me with his answers:

1) Does the combination of drug in either of the clinical trials sound promising?
A) - He is very interested in any clinical trials since he feels that they would not be spending the money on it unless they felt there was a logical reason to try it.
He asked if I was willing to travel for it and which one I would be interested in.
He then called MD Anderson and they called me back to schedule.
2) I keep seeing IL-2 option even used with sarcomatoid. Why is that no longer an option for me?
A) -The IL-2 can still be used, but has no better record with my type than the more traditional solution he was proposing.
3) I may confused, but as I understand it, sarcomatoid is a transition/differentiation/modification of a base type (underlying histology). What did mine start as? How does that affect the treatment choice?
A) - The histology can't be determined from the small nodule they removed. they will need a much larger sample so won't know until the kidney is removed and pathology done.
4) This article http://www.cancerguide.org/rcc_subtypes.html indicates that the transition to sarcomatoid makes it more susceptible to chemo.
It also indicates that sarcomatoids may be treated more like normal sarcoma than like RCC.
"Interestingly though, sarcomatoid RCC can respond to chemotherapy,
and most of the chemo regimens which have worked with sarcomatoid RCC
are primarily used to treat sarcoma."
Is that correct?
A) - It is correct, but it just means that chemo has almost zero results against standard RCC and has slightly better for sarcoma, but what the first two options we were looking at are not actually "chemo" they are "molecular agent" and those have better results against normal RCC, so he believes the odds of these molecular agents would be better than true chemo on the sarcomatoid as well.

I was also told that the urologist surgeon prefered to wait on the surgery hoping the tumor could be shrunk to reduce the risk of the surgery unless my symptomatic pain was too great. So, I would not be doing the surgery prior to the chemo.

2 comments:

Nurse Laura said...
This comment has been removed by the author.
Nurse Laura said...

Wish I could be with you for your clinical trial appt, Steve! I hope you can have Karen on the phone during consultation so you can both hear the same thing at the same time. The information can be so overwhelming. Please don't hesitate to call me anytime (24/7) if I can help in any way. Thank you for keeping this blog, it is a wonderful way to keep people informed and you can share what you are going through. My thoughts and prayers continue to be with you, Karen, Zach and Ben.
Laura