People regularly ask me, "Why don't you do surgery on both tumor locations." I say that they just don't seem to treat metastasized renal cancer with surgery (much). There are some people from the renal cancer mailing list that have had lung tumor Cryoablation (a metal with freezing liquid running through it to freeze/kill tumor like a freezing scalpel). Here's one person (pasted in below) that is a real surgery advocate which I bring up as some sort of alternative in case drugs fail. The mailing list is about 1000 people that post messages about their renal cancer situation and answer questions. You get about 10-20 a day in a digest letter.
Hi Alan: I have had 3 sessions of cryoablation for my lung mets over the past 11/2 years. My follow up CT scan for the last session is in a couple weeks.so I can't report on the last cryo session quite yet. However the prior 2 sessions have killed the lung mets that were treated. There remains some scar tissue but the tumors are dead. I am hoping for the same results for my 3rd cryo session. I also am hoping not to get any more mets as I am 21/2 post rad neph. Naturally we all hope we don't get anymore mets so that statement is a tad obvious. Cryoablation is a very viable treatment for lung mets. The key is to find a good Interventional Radiologist that is experienced in Cryo. I was fortunate to find Dr. Brad Johnson who is extremely skilled and headquarters at OSF in Peoria ,IL. I am surprised that more RCC patients do not pursue Cryoablation for lung mets given the high success rates I have both personally experienced as well as others great results I have read about.I suspect that most Oncologists prefer the strict drug approach and are reluctant to send their patients to alternative Dr.s. That was certainly the case with my 1st Oncologist. So I arranged the referal myself, and got a new Oncologist to boot . Drugs may work for some,but I prefer to either surgically remove or ablate the mets. I like the idea of getting rid of them. Incidentally, I did take 50 mg. of Sutent for 6 months right after my rad neph. I experienced good shrinkage. I did not technically fail Sutent but made the decision to go the cryoablation route instead. I figure we have so many people on Sutent that if the long term results for some reason trend up I could try it again at a later date. Or perhaps one of the new drugs may emerge with higher efficacy stats as well. We all need to make decisions on our treatments and even though there are more choices lately,none stand out as outstanding in my eye. I didn't mean that to sound negative . I am happy to be alive and won't let RCC beat me mentally. I only wish that more cancer research was being done. If people knew how very little money is being spent on research there would probably be a revolt. I would like to think so anyway. Be Strong and good luck to all.
Saturday, October 31, 2009
Thursday, October 29, 2009
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)
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)
Wednesday, October 28, 2009
Opinions
Cheri has a client that markets medical stuff. He has many friends. He said that he's heard some very bad stories about trials and has a "hotshot" oncologist friend he's going to ask. I'd expressed some concern about our two doctors already knowing each other and not getting an independent view from them on Sutent vs. the Trial. Dr. Sharma doesn't do that many kidney cancers (no general oncologist will because they are rare) and specialists tend to be guys like Quinn. Will Quinn's concern (recommendation) be to benefit his trial or my chances? These trial guys have to be a bit Machiavellian since they do trials with placebos and need to get people in. So we concluded that I should try to squeeze in the City of Hope right before or after Dr. Quinn to have them weigh the two therapies and/or would they suggest some 3rd thing (darn that would be complicated).
Tuesday, October 27, 2009
Not just IL-2 but an IL-2/Interferon Trial
In consulting with Dr. David I. Quinn of USC about using IL-2 on me, it turned out that Dr. Quinn is running a trial there to test the use of IL-2 with Interferon on otherwise healthy patients. Some previous trials have tried to temper the tough side-effects of IL-2 by combining it with some amount of Interferon. Studies show that patients taking IL-2 do better with their kidney removed first. We will probably go with this and they probably want to do it. It gives us one more thing to try leaving us the whole spectrum of the other six FDA approved medications afterwards. We will see Dr. Quinn on 11/16 for the consultation on this.
Saturday, October 24, 2009
Treatment
My test results turned out as the doctors thought: kidney cancer cells in my lungs. The doctors of the Tumor Board decided that it would not be helpful at this time to remove my kidney. The tumor "grows into" you and is not easy to get out. It's risky and a trauma on your body. The "modern" view, they say, is to leave it in and do systemic therapy like chemo or immuno therapy.
Normally they would start me off with Sutent pills which attack the tumor by attacking tumor cell receptors and it attacks the process in which the tumor attached to veins to sustain itself. There are a few medications and each has a certain chance of working. Normally they don't use IL-2, an old and powerful immuno therapy medication that can have dramatic results for the small percentage of people it works for but is very toxic. My doctor is going to talk to the same doctor that I was seeking my 2nd opinion from to see what he thinks of using IL-2 on me (which was brought up but not concluded upon at the Tumor Board). The strategy is that you use the difficult therapy, that will probably have me in the hospital off and on, at the beginning when I'm strongest. Later on, after other therapies, I will be somewhat compromised. There are many more medications than there used to be but they are still limited in number (6). If the others fail, I will be wishing that I tried IL-2. The chances of it working are under 10% (from what I read) but that is a 10% that, perhaps, I can't afford to throw away.
My doctor ordered the Sutent for me but is going to talk to the USC doctor (David I Quinn) to get his input on using IL-2 (Interluekin). If Dr. Quinn thinks that I should try the IL-2, I should be starting that within a couple weeks. Otherwise, I'll be on the Sutent pills.
Here's a Wiki piece on IL-2: click here. Here is a Wiki piece on Sutent: click here.
Normally they would start me off with Sutent pills which attack the tumor by attacking tumor cell receptors and it attacks the process in which the tumor attached to veins to sustain itself. There are a few medications and each has a certain chance of working. Normally they don't use IL-2, an old and powerful immuno therapy medication that can have dramatic results for the small percentage of people it works for but is very toxic. My doctor is going to talk to the same doctor that I was seeking my 2nd opinion from to see what he thinks of using IL-2 on me (which was brought up but not concluded upon at the Tumor Board). The strategy is that you use the difficult therapy, that will probably have me in the hospital off and on, at the beginning when I'm strongest. Later on, after other therapies, I will be somewhat compromised. There are many more medications than there used to be but they are still limited in number (6). If the others fail, I will be wishing that I tried IL-2. The chances of it working are under 10% (from what I read) but that is a 10% that, perhaps, I can't afford to throw away.
My doctor ordered the Sutent for me but is going to talk to the USC doctor (David I Quinn) to get his input on using IL-2 (Interluekin). If Dr. Quinn thinks that I should try the IL-2, I should be starting that within a couple weeks. Otherwise, I'll be on the Sutent pills.
Here's a Wiki piece on IL-2: click here. Here is a Wiki piece on Sutent: click here.
Wednesday, October 21, 2009
Biopsy
I had the biopsy and I'll be resting a day. Friday at 11:15 the doctor tells us the results and what the board is recommending for my treatment. Cross your fingers!
Thursday, October 15, 2009
Needle biopsy
10/20 I get a needle poked into me for an outpatient biopsy of tissue in my lung. They'll feed that info to the board meeting 10/22 that suggests my treatment.
It turns out that my friend Ken Hicks had the same oncologist and has the highest opinion of him.
It turns out that my friend Ken Hicks had the same oncologist and has the highest opinion of him.
Saturday, October 10, 2009
Oncologist
Cheri and I met with the oncologist and he seemed very good. The facility is impressive and the doctor listened, fully answered questions with background information and seemed totally up on the latest treatments.
They will biopsy, with a needle, a tumor in my lungs to make sure it's kidney cancer cells. If it's not, they'd probably surgically remove the damaged kidney. If it is, he talked about "living with cancer". He says that it is not a matter of how long you have now but to live with this like you'd live with another disease like diabetes. He says there have been amazing advances for this illness in the past decade with treatment going from one approved method (chemo. IL-2) to 5. That means far more things to try to push back or cure the cancer invasion.
He said that surgery isn't recommended where the cancer has entered the blood and invaded other areas. It doesn't get rid of the spread out cancer cells. You have to go after the cancer on a broader scale with a treatment that affects all the areas invaded.
We walked out of there more optimistic since this is the man that knows this illness best, compared to the general pract. or the surgeon urologist.
He also said that they work with UCLA and do their trials here at St. Jude. He suggested a world class specialist in kidney cancer from USC, a Dr. Quinn, for the second opinion. He said that this would get us a couple things. Trials being done with USC would be available to me if treating there (to have two teaching/research hospitals at my access) and that another "set of eyes" on the records can lead to different views and treatment suggestions.
They will biopsy, with a needle, a tumor in my lungs to make sure it's kidney cancer cells. If it's not, they'd probably surgically remove the damaged kidney. If it is, he talked about "living with cancer". He says that it is not a matter of how long you have now but to live with this like you'd live with another disease like diabetes. He says there have been amazing advances for this illness in the past decade with treatment going from one approved method (chemo. IL-2) to 5. That means far more things to try to push back or cure the cancer invasion.
He said that surgery isn't recommended where the cancer has entered the blood and invaded other areas. It doesn't get rid of the spread out cancer cells. You have to go after the cancer on a broader scale with a treatment that affects all the areas invaded.
We walked out of there more optimistic since this is the man that knows this illness best, compared to the general pract. or the surgeon urologist.
He also said that they work with UCLA and do their trials here at St. Jude. He suggested a world class specialist in kidney cancer from USC, a Dr. Quinn, for the second opinion. He said that this would get us a couple things. Trials being done with USC would be available to me if treating there (to have two teaching/research hospitals at my access) and that another "set of eyes" on the records can lead to different views and treatment suggestions.
Thursday, October 8, 2009
There is some conversation going on in my Facebook space that you might want to check out. Lot's of noise too but it's interesting. To use Facebook though, you have to register rather than just clicking on a link like you do to see this page.
Oncologist
My urologist has sent records to an oncologist and they're supposed to call me for a visit. I think it will be more of a "meet and greet" since the treatment will be suggested after the 10/22 "Tumor Board" meeting.
Wednesday, October 7, 2009
Cancer
I went to the doctor 9/25/09 for a checkup and possible urinary infection (blood in my urine 3 days before: ick) and the doctor thought the problem was higher up like at the kidney. He sent me off to get blood drawn and a few days later to get a CT scan ...of my chest (due to suspicious things in my x-ray) and abdomen.
A couple days after the CT scan he called me back and said that it was bad and that it looked like kidney cancer and to see a urologist and then an oncologist but that this sort of thing was difficult to treat. The urologist confirmed the diagnosis and said that he'd look into whether I fit for trials of treatment they do at UCLA and to get me started with an oncologist. I have 4 one inch lesions in my lungs from the kidney cancer.
This is a good summary of kidney cancer: click here.
I am now winding down my law practice to just have low key cases that won't take much work. I'll work a couple hours a day. Mostly, in case the treatment doesn't work, I'll be taking it easy and enjoying myself. On 10/6/09 I started my new schedule of enjoying the mornings and going to the office for a while around 1-2pm to take care of remaining work issues, home business, friend/family calls and medical matters.
My urologist has set me up with St. Jude's "Tumor panel" which is made up of specialists in several field in oncology. On 10/22/09 he will present my condition to them and they will suggest a course of treatment.
A couple days after the CT scan he called me back and said that it was bad and that it looked like kidney cancer and to see a urologist and then an oncologist but that this sort of thing was difficult to treat. The urologist confirmed the diagnosis and said that he'd look into whether I fit for trials of treatment they do at UCLA and to get me started with an oncologist. I have 4 one inch lesions in my lungs from the kidney cancer.
This is a good summary of kidney cancer: click here.
I am now winding down my law practice to just have low key cases that won't take much work. I'll work a couple hours a day. Mostly, in case the treatment doesn't work, I'll be taking it easy and enjoying myself. On 10/6/09 I started my new schedule of enjoying the mornings and going to the office for a while around 1-2pm to take care of remaining work issues, home business, friend/family calls and medical matters.
My urologist has set me up with St. Jude's "Tumor panel" which is made up of specialists in several field in oncology. On 10/22/09 he will present my condition to them and they will suggest a course of treatment.
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