So, my question here is: Does anyone have any advice on immunotherapy
drugs? Should we try to persue the doctors to give her IL-2 instead? I
don't even know if this drug approved for this use here, but it should
be interesting to know if anyone has any experience from using any of
the drugs.

Björn Fagerstedt
Stockholm, Sweden

-----------------------------------------------------------

The Karolinska is one of the very best cancer hospitals in the world.
Take the advice of your mother's oncologists.

Hello Björn,
I saw Steph's reply, wo will leave the treatment decision to your mother's
doctor(s).
I do want to say how sorry I am  to read about your mother's cancer.

Both those locations seem unusual (to me), but then we don't get a lot of
advanced kidney cancer patients here.  I did try to search that out, but
decided maybe you could ask on the ACOR lists?
There's one for Kidney-Onc http://www.acor.org/mailing.html?l=k and one for
Metastatic (under M)
There's a lot of subscribers on the Kidney list, so be sure if you click to
"join", to select the "digest" mode, so you won't be overwhelmed with
individual messages.
Please keep in touch and let us know their finding or information you glean
elsewhere.

It's sad when cure is no long possible. Every life (human being) makes a
difference, in one way or another, on this earth and I'm sure, in your
lives.

If we can be here for you, please don't hesitate to post, anytime.
J

Hello Björn,

My name is Dan and I was diagnosed with RCC in December of 2003. They
removed the grapefruit-sized tumor and I was disease free for one year.
Then the cancer came back at the end of 2004 and I have been stage IV
ever since. I have 28 mets throughout my renal fossa bed, abdomen,
lungs, heart, and several other locations. My prognosis was
approximately six months to live without successful therapy.

I began IL2 in January, 2005. IL2 has a low rate of success in Stage IV
RCC - something like 15%. *However* - if it works, it can lead to the
patient being cured.

My IL2 resulted in no change, and we felt that Interferon would
probably not fare much better, so we (me, my wife, and my oncologist)
began pursuing Angiogenesis chemotherapy drugs most of which were still
in the trial phase.

The basic objective for these drugs is to cut off the blood supply to
the tumors. They are not a cure, but they can help slow the spread
and/or growth of the tumors.

I began Avastin infusions and later combined these with Tarceva
tablets. Unlike IL2 where I had to be in the hospital for over a week
for each treatment, Avastin became an overnight infusion every other
week. The side effects are nominal - especially compared to IL2.

This Avastin/Tarceva cocktail was slightly effective as stalling the
mets from spreading, but after three months, it became obvious that I
was not reacting enough to these treatments for them to be effective.

That's when my wife introduced my oncologist's office to Bayer's new
drug called Sorafenib... as well as Sutent. Like the others, Sorafenib
was not yet FDA approved. Please forgive my ignorance as I am not sure
how this effects you in Sweden. Here in the US, if a drug is not FDA
approved, it is usually not covered by insurance.

This situation with Sorafenib changed about three weeks ago when
Sorafenib became FDA approved - - it is now called "Nexavar."
Miraculously, Sutent was also just approved by the FDA. This means they
are more likely to be covered by insurance.

Most of all, Sorafenib/Nexavar has a 41% chance of positive reaction on
RCC patients. Through God's grace, I had a positive reaction. My tumors
actually *shrank* for the first time since my diagnosis. The tumors
have not spread any further. We are keeping a watchful eye.

Should the cancer begin to overcome Nexavar, I will move on to Sutent.
Should Sutent have little or no effect, there are two new very
promising drugs being developed (their respective names escape me at
the moment) and should be availalbe soon.

The things we did that impacted my treatment included the fact that:

1. I never believed the prognosis. Sure, I was scared, frustrated, and
all those things... but I just never believed my time was up. Attitude
is everything.

2. We went to many doctors... not just one.. and we constantly
challenged the ones to whom we went. Many of them had no idea there
were new drugs being developed by Genentech, Bayer, Pfizer, or other
pharmaceutical companies. It was the first time they had heard of
Tarceva, Avastin, or Sorafenib.

Some doctors wanted to jump straight from IL2 to bone marrow
transplant, which is an "all or nothing" prospect. Fortunately, my wife
convinced Dr. Sencal's office (my doctor's name is Dr. Jay Klarnet) to
become a partner in the trial drug programs for Avastin, Tarceva, and
Sorafenib. They are also signed up for the Sutent trials - which have
now concluded.

3. We're being aggressive. In addition to my chemo, I also underwent
embolization - Dr. Tobin embolized two large tumors in my renal fossa
bed. They are now showing full necrosis... they are dead. Of course,
this may not be feasible for everyone; I'm just trying to explain
things from my perspective and my history.

4. I have been blessed with an incredible support group, including my
family, friends, my coworkers, my classmates (I just completed my MBA),
neighbors, and even complete strangers. As I said in #1, attitude is
everything - and seeing people come together and give so selflessly of
themselves is nothing short of a miracle.

Even in these dire circumstances, I feel I am blessed.

I digress...
Recent changes in how cancer drugs are tested and released to the
public have quite literally saved my life... and the lives of many
others.

I hope this message is of some use.
God bless you and your mom :-)
You will be in my thoughts and prayers.

Please write me if you have any questions.

Dan

Two years ago I had a partial left nephrectomy for renal cancer. The CAT
scan at that time showed no metastasis. "Spillage" must have occurred during
the surgery. Six months ago I had two tumors in my brain and four in the
muscle wall at the back of my abdominal cavity, behind and below the
incision.

The brain was treated with gamma knife and my 6-week MRI looked good. My
next MRI is 6-months.

The oncologist was going to start me on Avastin+Xoloda, but then they
entered the Sorafenib clinical trial. Now that it is a commercial drug it is
called Nexavar. My two month CAT scan showed a shrinkage in the abdominal
tumors. Sorafenib/Nexavar has some strong side effects, but nothing like
what I've read about for I-A or IL-2.

Because I have had a positive response to Sorafenib/Nexavar my oncologist is
going to give me some time off the drug - two week on and one week off - to
see if that improves my side effects.

The clinical trials say that Sorafenib has a 92 % chance that the tumors
stay the same size or shrink.

If I can provide any more information just contact me.

Ed

My mother was diagnosed with renal cell cancer (kidney cancer) 1.5
years ago. She had a nephrectomy shortly after the diagnosis. No
metastasis was known of at that time. 6 months ago she had a relapse,
two brain mets. However, these might have existed a year earlier since
no brain CT was conducted at that time (unfortunately according to the
treatment protocol, which I have learned seems to be the same
internationally). The brain mets were treated with the gamma knife
(Sterotactic Radiosurgery) at the Karolinska Hospital in Stockholm.
That worked amazingly well and three months after the MRI showed a
complete shrinkage of the tumors.

Now additional tumors have been found. One tumor is located in the
stomach/esofagus (which seems to me a very strange met location for
RCC?) and one in one of her breasts. We have not yet received lab
results of the biopsy which was conducted on the stomach tumor so yet
we don't really know if it is a RCC met or actually a different primary
tumor.

The situation is of course very difficult and there is obviously almost
no hope of cure. The doctors have been talking about immunotherapy. I
have learned that Interferon-alpha is the drug of choice here. Browsing
through some good web resources (for example Steve Dunn's
www.cancerguide.org) I have however found some material stating that
high dose Interleukin-2 (IL-2) might offer superior results (and much
worse side effects) than Interferon-alpha.

So, my question here is: Does anyone have any advice on immunotherapy
drugs? Should we try to persue the doctors to give her IL-2 instead? I
don't even know if this drug approved for this use here, but it should
be interesting to know if anyone has any experience from using any of
the drugs.

Björn Fagerstedt
Stockholm, Sweden