Helpful kidney patient comments

I posted my issues about sutent vs. the interferon/IL-2 trial on the kidney board list and a few people responded. A couple responses were very helpful and are pasted below:

Date: Wed, 28 Oct 2009 04:23:59 -0700
From: "Ralph T. Evans" <ralphevans@SBCGLOBAL.NET>
Subject: Treatment options

About a month ago I was diagnosed with a 10cm Kidney cancer tumor
and four one inch ones in my lungs (2 in each). Our Oncologist, Dr.
Sharma of the cancer center in St. Jude's Hospital, presented my facts
to their "Tumor Board" that suggested Sutent but to consider IL-2 since
I have "young" (55) and healthy.
Our doctor consulted Dr. David I Quinn of USC because he has great
experience with Kidney cancer, developing trials and the use of IL-2.
He is suggesting a trial that is using Interferon with IL-2. I worry a
bit that our first doctor is deferring to Dr. Quinn because of his
greater experience and will a doctor in charge of trials (who we will
see 11/16/09) have sort of an inherent conflict for getting and doing
the trial as opposed to my own chances. From reading on the net, I
think his philosophy is that the kidney medications like Sutent are not
curative and that if someone is healthy enough to do IL-2, they should
do it first in the modest hopes for a cure.
What do you think?

Date: Wed, 28 Oct 2009 11:41:24 +0000
From: Liz Lewis
Subject: Re: Treatment options

My personal opinion is to go fo hdil-2 first and not any non high dose il-2.
My husband also had mets in his lungs and had a complete response to hdil-2 if it doesn't work you can move on to other drugs. I am assuming you have clear cell. Also with your location you may want to see Dr. Figlin in LA others on the list could provide his contact info
Good luck

Date: Wed, 28 Oct 2009 08:46:04 -0400
From: Lynne Tartaglia
Subject: Re: Treatment options

Ralph I do know that IL-2 is much preferred as the
first line of treatment. It is THE only regimen with
a small but statistically measureable complete
response rate. I also know-from my husband's
experience-that trying Sutent first is seen as a
much less preferred option. Sutent strains the heart
and IL-2 after Sutent can be very dangerous. There
is also some belief that Sutent use interferes with
teh body's ability to use the IL2 to turn on its
antibodies. My husband did Sutent first because his
onc is not a fan of IL-2. When after several years
we had to choose a new path, we went to another
hospital for a 2nd opinion and they were willing to
try IL2 post Sutent only if he passed a battery of
heart, lung, and stamina tests and was treatemtn
free for 2 months. Which he did. We did two rounds
of IL2 and while he got stability we did not get
reduction and without reduction they would not go
forward.
The good news is that if you try IL2 and are not
able to get complete response, you can very well go
to Sutent as a second line treatment and see
response. You will hear from lots of people on this
I suspect but my experience is they will
overwhelmingly recommend IL-2 first. Not sure about
the trial though I think there are participants
onthe list. Best of luck.

Date: Wed, 28 Oct 2009 09:13:18 -0700
From: Peggy Zuckerman
Subject: Re: Treatment options

Dear Ralph,
I too was diagnosed with a large tumor and lung mets, mine being too
numerous to count. I also entered into a clinical trial after my
nephrectomy--have you had your surgery--and when the trial was not
successful, did go into a HD IL2 treatment. Thankfully, that was very
successful.

Dr. Quinn is well-respected, and your oncologist is to be commended for
searching additional help for you. The addition of Interferon to IL2 may
indeed be a plus, but you should compare it to the traditional HD IL2
program. will you get as much IL2 and as frequently, will entering into the
trial preclude you f rom going through the HD IL2 program and vice versa.
There are many questions to prep for your discussion with Quinn.

Additionally, you might also talk to someone about doing an ablation on the
larger lung tumors; there have been tremendous advances in that technique.
Since you are/will be in LA, you might also get another opinion either at
UCLA or the City of Hope. There are many options, and you should have a
full range to choose from as you go forward.

Good luck, and best wishes,
Peggy Zuckerman
5 years out and healthy after HD IL2 (average of 8-9 doses per week)