Thursday, December 31, 2009
Post-surgery
I'm taking it easy recuperating. In just over a week though I was able to walk over a mile although I'm dragging as I get back. The cold clean air, after the rain etc., is very nice to be starting my outdoor exercise. Next week I get my staples out and a couple weeks later I talk to the oncologist about doing the tests to start the immunotherapy (HD IL-2).
Sunday, December 27, 2009
Surgery
I went in Monday 12/21 for my pre-operation hospital stay. They did lots of preparation and tests that kept me busy all day. 12/22 they did the open kidney removal operation which took more than 6 hours. It went smoothly and they accomplished everything without complication. I was supposed to be in for about 7 days but even on the day after I had all my color and good mental disposition and ended up staying only 5 days. The incision was all up my middle and across and under my chest. Very big. I'll have lots of pain from coughing, sneezing, laughing, blowing my nose and other things for weeks. I have to take blood thinners for 6 months due to the potential of blood clots and vicoden for pain. Cheri and Jeff say that I look better than before the surgery in that my face looks less tired and thin than before. It's tough to move around but I'll work to walk etc., ASAP, and get back to normal and ready for the treatment next month or thereabouts.
Thursday, December 17, 2009
It was a bit of a rollarcoaster this week. After my MRI they said that the surgery had to go off and that my tumor had worked it's way too far up this vein that goes to the heart. Laproscopic just couldn't get it all with the small incisions. I had to have "open" surgery. Going after all the tendrils and going up a heart vein sounded risky to me and I was a bit shaken by that. I emailed the oncologist, Dr. Quinn, that maybe it's too risky and we should go right to IL-2.
We went and saw the surgeon, Dr. Schuckman, 10am on Wed., 12/16, and she said that it is major but that it's routine for her, a "no brainer" and not that risky. She says once they control the vena vein (it had a longer name), that they just pull the piece out of the vein that was partially blocking it. Dr. Quinn reviewed the MRI and texted Dr. Schuckman, while we were there, and said that he recommended going ahead with the surgery.
Depending on the opportunity available, since they are in the chest too (and remove one rib), they may remove the two tumors in the right lung. This may aid the high dose immunotherapy that will probably start late Jan. or Feb., to have less large tumors to deal with so that it will just be attacking tumor cells and small tumors they couldn't see or didn't have access to.
She, Dr. Schuckman, said that my lung tumors won't give me symptoms unless they grow a lot (I'm always wondering if my cough is related to them and she said "no"). She said that there was no invasion into any bones (which is very good). They will take out some lymph nodes around the kidney just in case since a couple are swollen a bit which could be invasion or infection from being next to a tumor.
I asked about the weight loss and she didn't feel that it was related to the cancer in that it was too slow over too long of a period. She said they are not sure why kidney cancer would cause weight loss but it might be that the growths are inefficient high energy tissue that burns more calories that one might think for their size.
I go into the hospital for some preliminary stuff Monday, 12/21, and 7:30 on Tuesday they start the surgery which may take about 6 hours. I'll be in for 5-7 days with the first 2 being in intensive care. Then it's about a month at home for recovery from this type of surgery.
She also said that between the 12/9 MRI and the 10/22 CAT scan that the visible tumors had not changed in size. This is, naturally, good news.
We went and saw the surgeon, Dr. Schuckman, 10am on Wed., 12/16, and she said that it is major but that it's routine for her, a "no brainer" and not that risky. She says once they control the vena vein (it had a longer name), that they just pull the piece out of the vein that was partially blocking it. Dr. Quinn reviewed the MRI and texted Dr. Schuckman, while we were there, and said that he recommended going ahead with the surgery.
Depending on the opportunity available, since they are in the chest too (and remove one rib), they may remove the two tumors in the right lung. This may aid the high dose immunotherapy that will probably start late Jan. or Feb., to have less large tumors to deal with so that it will just be attacking tumor cells and small tumors they couldn't see or didn't have access to.
She, Dr. Schuckman, said that my lung tumors won't give me symptoms unless they grow a lot (I'm always wondering if my cough is related to them and she said "no"). She said that there was no invasion into any bones (which is very good). They will take out some lymph nodes around the kidney just in case since a couple are swollen a bit which could be invasion or infection from being next to a tumor.
I asked about the weight loss and she didn't feel that it was related to the cancer in that it was too slow over too long of a period. She said they are not sure why kidney cancer would cause weight loss but it might be that the growths are inefficient high energy tissue that burns more calories that one might think for their size.
I go into the hospital for some preliminary stuff Monday, 12/21, and 7:30 on Tuesday they start the surgery which may take about 6 hours. I'll be in for 5-7 days with the first 2 being in intensive care. Then it's about a month at home for recovery from this type of surgery.
She also said that between the 12/9 MRI and the 10/22 CAT scan that the visible tumors had not changed in size. This is, naturally, good news.
Saturday, December 12, 2009
Tests
The blood sample, MRI and cardiac stress test (treadmill) was a long day along with a bit of LA traffic. It was interesting and nothing was painful. The cardiac test went fine. I won't know the MRI results for some time unless there is something new on it that they need to tell me about.
Now I have a couple more tests on Wednesday. A mag3 scan for kidney function and meeting with the cardiologist about the stress test. The Friday after that, 12/18/09, they've scheduled me for some standard pre-op screening meeting which I assume is probably mostly talk.
Then on 12/22 I have to get to the hospital at 5:30 am and out goes my kidney. 2-4 days in hospital after that and 2-4 weeks recovery before starting the high dose interleukin.
As good as the internet is for general research, the real topper for getting the final answers to sort of verify what the doctors tell us has been a listserv mailing I get daily with about 10-20 emails in one digest letter of people in my situation talking about what their doctors tell them and answering people's questions. It was so reassuring to hear that other people that researched things well would do what we're doing. Back 30 years ago you blindly followed a doctor's advise and just had to have hope or faith. Now you can go in knowing that this rare illness is being treated properly. This must take away so many worries for so many people.
Now I have a couple more tests on Wednesday. A mag3 scan for kidney function and meeting with the cardiologist about the stress test. The Friday after that, 12/18/09, they've scheduled me for some standard pre-op screening meeting which I assume is probably mostly talk.
Then on 12/22 I have to get to the hospital at 5:30 am and out goes my kidney. 2-4 days in hospital after that and 2-4 weeks recovery before starting the high dose interleukin.
As good as the internet is for general research, the real topper for getting the final answers to sort of verify what the doctors tell us has been a listserv mailing I get daily with about 10-20 emails in one digest letter of people in my situation talking about what their doctors tell them and answering people's questions. It was so reassuring to hear that other people that researched things well would do what we're doing. Back 30 years ago you blindly followed a doctor's advise and just had to have hope or faith. Now you can go in knowing that this rare illness is being treated properly. This must take away so many worries for so many people.
Friday, December 4, 2009
Pre-surgery tests
I go in for some pre-surgery tests on 12/9/09. An MRI to take a close detailed look at the problem area, a test to see how the remaining kidney is currently doing and a cardiac stress test (treadmill?). At least none of these hurt but I'll be there all day.
Tuesday, November 24, 2009
Insurance is your friend?
I previously called the insurance about the first batch of "Explanation of Benefits" forms that show what they would pay. They were going to re-work all of them because they were wrong (and not paying anything). I got a denial letter on the biggest item, a CAT scan. I called and the lady said that whoever did it got the formula backwards on their paying 60% till the deductible is reached and then paying 100%. She said they would re-work it. I brought up a $450 urologist consultation that it said they were not paying anything and she said that it was because there was something in the diagnosis that suggested that it was a pre-existing condition. I said that would be crazy and that I'd know if I had kidney cancer treated before. She said they sent a questionnaire to the doctor and were waiting and that should fix it.
Ridiculous and immoral.
Ridiculous and immoral.
Monday, November 23, 2009
Surgeon
Dec. 22 for my surgery! Merry Xmas! The surgeon, Dr. Gill, has done more laproscopic surgeries than any other team in the world. His team has developed some of the techniques used.
Dr. Gill asked some history questions and typed as we went. This allowed him to have his report done while we were there and he gave us a copy. He explained how they will make 4 small incisions and not cut any muscle. It's a major surgery with a major vein that needs to be cut off. I'll be in the hospital for 2-4 days with 2-4 weeks further recovery at home. Normal "open" surgery is about double the hospital time and recovery time at home.
To get prepared for it they need to do a heart stress test, an MRI for the extent of the tumor invasion of the main renal vein (to know exactly where to cut it off) and a Mag3 test (some sort of scan) to see how my other kidney will handle the increased workload (is it currently doing 50% of the kidney work or less?).
Dr. Gill asked some history questions and typed as we went. This allowed him to have his report done while we were there and he gave us a copy. He explained how they will make 4 small incisions and not cut any muscle. It's a major surgery with a major vein that needs to be cut off. I'll be in the hospital for 2-4 days with 2-4 weeks further recovery at home. Normal "open" surgery is about double the hospital time and recovery time at home.
To get prepared for it they need to do a heart stress test, an MRI for the extent of the tumor invasion of the main renal vein (to know exactly where to cut it off) and a Mag3 test (some sort of scan) to see how my other kidney will handle the increased workload (is it currently doing 50% of the kidney work or less?).
Thursday, November 19, 2009
Ducks in a row
I have six court appearances in December. I set four of them to be done by phone through Courtcall yesterday. If one is too close to surgery, I'll have someone else do the call. I also taught my continuing education class about "Computers, security and malpractice" to three of my attorney friends. We have to do 24 hours every 3 years and I get triple credit for teaching so that's 9 hours for last night. I'm due to have the 24 hours done by January and this does it for me for another 3 years since I've done bits and pieces over the past three years in short classes I went to or audio listening.
Tuesday, November 17, 2009
Hospital entertainment
I posed the question to the listserv group of survivors about what to do in the hospital while on high dose IL-2 and a couple came back with answers one might expect (watch or listen to audio) while one suggested that not only will you not feel like reading, watching casual tv or listening to audio (except music) but that you might not even remember the week! Ouch.
Getting the second opinion
We went to the City of Hope yesterday and saw two doctors. One took more information from me and told us a lot about the treatments while the other was sort of the #2 man on the kidney cancer team there (which is about 20 doctors). They have an interesting trial going on, that I qualify for, but it would make more sense if I had already done a couple of the FDA accepted treatments. The trial involves giving you two medications: everyone gets this newer one that attacks tumor vein attachments (for nourishment). Some people in the trial will get Interferon (which is sort of like Interleukin) and others will get a medication like Sutent that attacks tumor cell receptors.
Dr. Pal said that Dr. Quinn is a great doctor and that I would be in the very good hands. He said that the high dose Interleukin-2 was the best initial option for a healthy patient like me in that it is the only treatment with evidence that it can produce a "durable" response (which a layman might call a cure although you are never "cured" of cancer since you do need to be checked very regularly). Other medications are very promising but too new to know how many years they might work.
City of Hope does not yet offer HD IL-2 treatment such as USC offers although they are putting together a program to do it. It is very nurse intensive because of the close watch they have to keep you under.
This was all very reassuring because it reaffirmed what we already knew and confirmed that the treatment suggested by St. Jude's Tumor Board and Dr. Quinn of USC was the best way to go.
Dr. Pal said that Dr. Quinn is a great doctor and that I would be in the very good hands. He said that the high dose Interleukin-2 was the best initial option for a healthy patient like me in that it is the only treatment with evidence that it can produce a "durable" response (which a layman might call a cure although you are never "cured" of cancer since you do need to be checked very regularly). Other medications are very promising but too new to know how many years they might work.
City of Hope does not yet offer HD IL-2 treatment such as USC offers although they are putting together a program to do it. It is very nurse intensive because of the close watch they have to keep you under.
This was all very reassuring because it reaffirmed what we already knew and confirmed that the treatment suggested by St. Jude's Tumor Board and Dr. Quinn of USC was the best way to go.
Tuesday, November 10, 2009
Seeing the First Specialist
11/6/2009: Doctor Quinn of USC was very impressive and accessible. His nurse practitioner talked a mile a minute but we'd read all this stuff on treatment on the internet and didn't get lost. After we give the "go", they'd operate soon with non-invasive laproscopic surgery by a doctor that we are told is a master of the procedure.
After the surgery, when I am functioning pretty normally (which should not take long thanks to the non-invasive surgery), they will need to do some preliminary stress tests to make sure that my body, heart and lungs can take the stress of high dosage Interleukin-2. When I start I'll be in the hospital for a week with lots of inter-venous doses every day and under close watch. I will feel terrible. I get a week off but I won't be real energetic. I do another week on and then wait about a month before the scan to check the effect. If it didn't shrink, they would test a couple weeks later because sometimes it takes time. If it does shrink then I should do a second month. Only 1 person of 220 had done 3 month cycles: everyone else just one or two. Two cycles of a month each is normal. Someone of my phys. makeup has "up to 25% chance of cure". It's been 5-15% but he says that I have a better chance due to my health.
They suggested Cheri (or someone that knows me well) stick around as much as possible to watch my demeanor in case I become confused or worse which means that it's affecting my mind and I they would need to tone it down. Yow.
If it fails, I would go on Sutent a couple months later or perhaps a drug trial at some later time. Sutent has milder effects and can cause some shrinkage but is not a cure. There are a few medications like that to try if Sutent does not work on me.
City of Hope no longer does high dose IL-2 so It's very unlikely that I'd be able to go there. They might even tell me to stick with USC because HD IL-2 is the only hope for a cure. But we'll see if Hope says something surprising. I see the doctor there on 11/16/09.
After the surgery, when I am functioning pretty normally (which should not take long thanks to the non-invasive surgery), they will need to do some preliminary stress tests to make sure that my body, heart and lungs can take the stress of high dosage Interleukin-2. When I start I'll be in the hospital for a week with lots of inter-venous doses every day and under close watch. I will feel terrible. I get a week off but I won't be real energetic. I do another week on and then wait about a month before the scan to check the effect. If it didn't shrink, they would test a couple weeks later because sometimes it takes time. If it does shrink then I should do a second month. Only 1 person of 220 had done 3 month cycles: everyone else just one or two. Two cycles of a month each is normal. Someone of my phys. makeup has "up to 25% chance of cure". It's been 5-15% but he says that I have a better chance due to my health.
They suggested Cheri (or someone that knows me well) stick around as much as possible to watch my demeanor in case I become confused or worse which means that it's affecting my mind and I they would need to tone it down. Yow.
If it fails, I would go on Sutent a couple months later or perhaps a drug trial at some later time. Sutent has milder effects and can cause some shrinkage but is not a cure. There are a few medications like that to try if Sutent does not work on me.
City of Hope no longer does high dose IL-2 so It's very unlikely that I'd be able to go there. They might even tell me to stick with USC because HD IL-2 is the only hope for a cure. But we'll see if Hope says something surprising. I see the doctor there on 11/16/09.
Thursday, November 5, 2009
Health Insurance is going to be a fight?
I just got the first few "Explanation of Benefits" forms and it looks like I'll have to challenge many of them. They don't want to pay hardly anything. In a way, I find this more upsetting than the diagnosis: You are sick and your expensive Blue Shield insurance is going to make you nit pick, fight and appeal as you go along on basic things that are obviously necessary and normal? Disgusting.
Saturday, October 31, 2009
Surgery?
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.
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.
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.
Subscribe to:
Posts (Atom)
