Interleukin-2 treatments for Stage 4 RCC

I am on it now

March, left radical removal 12cm mass, 2 lymphs and nothing else. Began Assure trial, was on Sutent. 3 mths out, scanned, founed 1.8 x 1.2 mass where kidney was (tissue is suspect) and two tiny nodules on left lung. Got off trial Dr suggested IL2. Got scared. Went to Houston/Baylor for 2nd, said go for IL2. I am young, tough, cancer is localized and in good shape. Round one couple weeks ago, skipped then repeated. I am on my 5wk break now, scan on Nov 3 and hopefully repeat due to success. I was on 37.5 Sutent, but never felt bad. The IL2 First course, got rough by end. Took 12 bags. Went home on Sunday a.m., stay inside till noon monday, started spraying cotton that afternoon and was combining soybeans Tuesday until Sunday night before next round. Took about 1.5 days to resume average status. Second course: Side effects hit ny second bag, got pretty rough. Take adantage of anything to make you rest. Makes recovery better. Got 8 bags. missed last 3 and went home on Sat eve. This round took unti about Wednesday noon to feel decent. That was week before last, in other words, as of tonight I have been home 8 days. Joint pain, esp shoulders and 4 nights of sleeplessness. Am working, but need to take frequent breaks. I would really not mind talking in on the phone about this in more detail. jk PM me your contact info if you want to talk.

IL-2
I had high dose IL-2 in june of 1992. Right kidney removed 2/92 mets in both lungs indicating multiple tumors through out. Commenced IL treatment in June of 1992. Treatment was very controversial at time with some top doctors against it.

The treatment it self can be rough during the time it is being administered ie: very strong flu like symptoms.serious diarehea, possible blood pressure crashes. I was pretty sick during treatment days. However, unlike most chemo treatments I recovered very quickly ie: two or three days. After second dose I was at my daughters field hockey game the second day home. I found it was important to use the skin creames they give you. After first dose all my skin peeled off from head to foot. It didn't happen after using the cream during second dose.

Results: I was cancer free until 1999 I would be happy to discuss further if you wish

It worked for me!!! Good Luck

fighting_the_fight said:

Interleukin-2 Treatments for RCC
Dinosaur40,

Thank you very much for your response to my post. I would very much like to discuss your treatment and results in more detail. Also, is it safe to assume from your "Results" post that your cancer has returned? If so, I would like to discuss that also, if you care to share.

When I make my decision of whether or not to undergo this treatment, I want to know that I have researched it as thoroughly as possible from the medical viewpoint and from the viewpoint of those patients who have undergone the treatments. In other words, I want to feel that I have made an informed decision regarding my care.

Thanks again and I look forward to hearing from you again.

Fighting

Interluken 2 Treatments
After right kidney removal in July 2010, had scans in Sept showing mets. I have been on Nexavar for two weeks with minor side effects. This week I broke out in a rash all over but nothing I can't deal with. For those of you in Int 2, did your oncologist discuss Nexavar? I'm wondering why mine did not discuss the Int 2. I am going to get a second opinion next week and plan to discuss this question.

fighting_the_fight said:

Interleukin 2 Treatments
JIsrael,

Thank you for your post. I am currently on Nexavar. I lost my left kidney in November 2004. Went almost 5 years with no signs of a recurrence. Then, in September 2009, nodules were found in my lungs with one lymph node showing involvement. I was given a choice of many therapies and I chose Interferon Alpha and Avastin combination. I breezed through this therapy with flying colors. I was on this regimen for three months when it was determined that the meds were effecting my remaining kidney, so I was taken off and put on Sutent. That lasted a month. I lost over 50 lbs. from November (when I first started treatment) through February. I had ALL of the side effects from Sutent (most of my weight loss occurred during this one-month period) and the Sutent was stopped. I was then put on the Nexavar.

My oncologist mentioned the option of Interleukin 2 from the get-go but because you have to be in ICU during the time it is being administered, and because it is so toxic, it was not his first line choice for treatment. However, because I had significant shrinkage of the nodules with the other therapies, he is now considering this as an option for a possible "cure"...even though the possibility of a complete cure is very minimal.

Good luck with your treatments. Please keep us posted on your progress, and may God be with you and yours as you fight this fight. Someone very eloquently told me that because of my positive attitude (which I think is as important as any drugs the oncologist may give me), "I am living with cancer...I am not dying from it." Someone also said "I have cancer, it doesn't have me." I hope my post has been helpful.

Fighting

Statisitcs are hard to interpret
When my Dr. first mentioned IL2 and I came home from the news, I spent the weekend in the internet reading all I could anout IL2 and got very discouraged with the "minimal" chance it provides.

The second opinion in Houston changed all that. As they all say, it sepends on the individual. I am 10 days away from the scan that will show if it is working and I am getting anxious/nervous/excited/scared, you name it.

My impression is, the 20% response, 9% complete, 11% partial: Keep in mind everyon included in the #'s, very minor to grave and barely able to survive the regimen. In no way do I want to hurt anyone's feelings, but that is the scary part of statistics. Houston gave me more of an 80% chance of response to the IL2 treatment. Young, localized, stong health, clear bones and organs. Now the scan on Nov 3 may show I am full of cancer.
Hopefully not. I do dread two more weeks of treatment and recovery, but I feel it is well worth the effort.

BTW Got the bill for the first week of IL2, insurance billed the hospital for $162,000. Not cheap therapy.

beanfarmer said:

Statisitcs are hard to interpret
When my Dr. first mentioned IL2 and I came home from the news, I spent the weekend in the internet reading all I could anout IL2 and got very discouraged with the "minimal" chance it provides.

The second opinion in Houston changed all that. As they all say, it sepends on the individual. I am 10 days away from the scan that will show if it is working and I am getting anxious/nervous/excited/scared, you name it.

My impression is, the 20% response, 9% complete, 11% partial: Keep in mind everyon included in the #'s, very minor to grave and barely able to survive the regimen. In no way do I want to hurt anyone's feelings, but that is the scary part of statistics. Houston gave me more of an 80% chance of response to the IL2 treatment. Young, localized, stong health, clear bones and organs. Now the scan on Nov 3 may show I am full of cancer.
Hopefully not. I do dread two more weeks of treatment and recovery, but I feel it is well worth the effort.

BTW Got the bill for the first week of IL2, insurance billed the hospital for $162,000. Not cheap therapy.

Thanks for sharing the cost.
I knew these were all expensive drugs but I hope my husband's insurance will cover the cost of IL2. He is completing his 8th bag at $5,000 a bag we were told. That doesn't cover hospital, doctors and everything else. I would love to follow your results with IL-2. Thanks for sharing.

ejneary said:

My experience, So Far
I was diagnosed with a 8 - 9 cm tumor on my right kidney on Jan 1, 2010. Right radical nephroctomy removed the kidney and tumor in Febrary 2010 and I went on ECG 2805 (blind clinical trial of either Sunitinib or Placebo, and Sorafenib or Placebo.). This went on for 54 weeks during which I received scans. There was one scan where a few "Spots" appeared on one lung back in December but they decided to continue the trial and watch these.

My last scan, once the trial was over, was in April. This scan, instead of coming up clean like I had hoped, had shown several tumors throughout my body cavity with lesions on both lungs. I was shocked and severely depressed to say the least. My doctor immediately suggested IL2 treatment. Upon further investigation, it was discovered that if my clinical trial was actually Suntinib and not Placebo, IL2 would not have been approved since Sunitinib causes degradation of the heart muscle which might negate the ability for the provider to approve IL2 treatment. They do somewhat tell you this when you are signing all of those papers for the clinical trial but the course of treatment should metastasis occur, was not considered so anyone following this path should be very aware of what drugs might negate IL2 treatment as a valid course of treatment should it be needed.

Once my clinical trial was unblinded, it was discovered that I was not on Sunitinib but WAS on Sorafenib (I knew that because I had 54 weeks of Diarrhea!)

So, after a pulmonary test and a treadmill test to test heart function, I was approved for IL2 treatment and went to Kaiser Riverside two weeks ago. The staff there are experts. Very knowledgeable at what they do and caring. They gave me meds to control all side effects and the only side effect that I had was rigors. However, after reading on the web that demorol is the only cure for this, I immediately hit the call button when I felt them coming on. They were gone within a minute of the demerol being injected.

I had no vomiting, no diarrhea, no headaches, no other issues. I felt awful, but I was not that sick from it. I was only able to take 6 doses though before I became neurotoxic. It was at that time that I became agitated and began to want to pull out the cords and "Get back to work". My wife was very concerned. I do not remember any of this and my wife said that it took a lot of demerol to get me to go to sleep. I was discharged the next day after they stopped the treatment.

I am not sure if this is working yet. I am not sure if only 6 doses is enough to see any changes. I have heard people taking 10 - 14 doses and can't imagine that myself right now.

I am due back in Riverside next week to begin again. I pray to God that this stuff has an affect. I am 47 years old and have a family that I really can't afford to leave right now. I have asked God for an extension and am praying several times daily for this treatment to work. I pray that for others going through this, that they also are successful in reaching NED. That is my goal.

I will let you know what happens after the next week treatment.

John

Round 2
Round 2 begins today. Not really scared, but just want to get things going. They managed my side effects really well last time. The only thing that concerns me is the neurotoxic part which they also managed well but I need more bags of the treatment than 6 per trip. I am afraid that they will drop me out of the program if I can only take that much and it is not showing improvement.

How many times did other on this treatment last and how many times did you return before a change was noticed?

Any input would be appreciated.

John

ejneary said:

My experience, So Far
I was diagnosed with a 8 - 9 cm tumor on my right kidney on Jan 1, 2010. Right radical nephroctomy removed the kidney and tumor in Febrary 2010 and I went on ECG 2805 (blind clinical trial of either Sunitinib or Placebo, and Sorafenib or Placebo.). This went on for 54 weeks during which I received scans. There was one scan where a few "Spots" appeared on one lung back in December but they decided to continue the trial and watch these.

My last scan, once the trial was over, was in April. This scan, instead of coming up clean like I had hoped, had shown several tumors throughout my body cavity with lesions on both lungs. I was shocked and severely depressed to say the least. My doctor immediately suggested IL2 treatment. Upon further investigation, it was discovered that if my clinical trial was actually Suntinib and not Placebo, IL2 would not have been approved since Sunitinib causes degradation of the heart muscle which might negate the ability for the provider to approve IL2 treatment. They do somewhat tell you this when you are signing all of those papers for the clinical trial but the course of treatment should metastasis occur, was not considered so anyone following this path should be very aware of what drugs might negate IL2 treatment as a valid course of treatment should it be needed.

Once my clinical trial was unblinded, it was discovered that I was not on Sunitinib but WAS on Sorafenib (I knew that because I had 54 weeks of Diarrhea!)

So, after a pulmonary test and a treadmill test to test heart function, I was approved for IL2 treatment and went to Kaiser Riverside two weeks ago. The staff there are experts. Very knowledgeable at what they do and caring. They gave me meds to control all side effects and the only side effect that I had was rigors. However, after reading on the web that demorol is the only cure for this, I immediately hit the call button when I felt them coming on. They were gone within a minute of the demerol being injected.

I had no vomiting, no diarrhea, no headaches, no other issues. I felt awful, but I was not that sick from it. I was only able to take 6 doses though before I became neurotoxic. It was at that time that I became agitated and began to want to pull out the cords and "Get back to work". My wife was very concerned. I do not remember any of this and my wife said that it took a lot of demerol to get me to go to sleep. I was discharged the next day after they stopped the treatment.

I am not sure if this is working yet. I am not sure if only 6 doses is enough to see any changes. I have heard people taking 10 - 14 doses and can't imagine that myself right now.

I am due back in Riverside next week to begin again. I pray to God that this stuff has an affect. I am 47 years old and have a family that I really can't afford to leave right now. I have asked God for an extension and am praying several times daily for this treatment to work. I pray that for others going through this, that they also are successful in reaching NED. That is my goal.

I will let you know what happens after the next week treatment.

John

After first round
OK, not many people responding to this thread but i think it is important enough to keep it living for anyone else having to go through this regimen for metastatic RCC... So far, I have not found anyone else going through this at the present time with my level of metastasis which is a drag because I feel like I am wading through this alone with no direction or warnings to help prepare. I am going to keep describing my situation until I am through this so that others can get an idea of what to expect....

My last post was just after I was released from the hospital. Release instruction indicate that you are not supposed to drive for 1 week however, since I was told to drive, not fly by my oncologist, I had to SIT for 7 hours from Riverside back to the Bay Area of California and just watch. Now, I LOVE California. I love watching the scenery go by and even enjoy places like Buttonwillow and Coalinga but to not be able to drive at least part of it was painful. My wife's decision was absolute, NO DRIVING FOR YOU.

Once we arrived home, I assumed it would be fine and I could start activity again ASAP. I was wrong. On Monday, I became extremely depressed and felt a lot of panic. Panic in breathing, and in the efficacy of the treatment. I spent the day unable to think about anything but that and it was a pretty dark day. Tuesday was more of the same with a few more brain cells firing on different things but still worry and panic. OH, and LOTS of skin peeling! Another side effect of IL2 (Even eyelids).

Finally, on Wednesday, the clouds began to clear and I was able to focus on some projects that took my mind away from the darkness and I realized that some of my "me" was returning. Though I had read about the side effects of IL2, I saw more the physical side effects and didn't really consider the mental ones. I am here to tell you that they are AS DEBILITATING as the physical ones and not to be underestimated. Today, I feel much better and it really did take the better part of a week to recover, mentally and physically. So the suggestion to not drive, well, it's probably a good one.

The next emotional hurdle will be the CT scan which will determine if this is working or not. Today is June 12 and that doesn't happen until July 7. Meanwhile, I can feel tumors inside and have a dry cough from the lesions on my lungs which all make me wonder if this is working. So this is an emotional roller coaster time in this treatment cycle. We visited a local cancer support center to try to get some outside insight. VERY HELPFUL folks and I recommend anyone here going to one!!! The only problem is finding other people with your situation. This is still very difficult and finding someone to compare notes with would really be helpful but I haven't found anyone yet. We did speak with two other folks (Patient and caregivers) who were battling various cancers and I think we ALL went away with the thought that we were glad to not have what they did, but it really illustrated how crappy this disease is in WHATEVER form it comes in. We all have our own battles to fight. Treatment for any cancer SUCKS!

As for IL2 so far? Don't believe everything you read on the internet. Side effects are managed VERY WELL with drugs and care these days. Yes, it is no fun but not the awful thing that others have talked about from years past. Practitioners have learned a LOT in recent years and physical side effects are managed well in most cases. Be careful of the stuff that happens mentally though afterwards. If you are aware that they are going to happen, you can prepare. I was not aware and it really surprised me. It does get better over a few days though.

More updates as the scan gets closer and I have more appointments.


Take Care!!!

John

ejneary said:

After first round
OK, not many people responding to this thread but i think it is important enough to keep it living for anyone else having to go through this regimen for metastatic RCC... So far, I have not found anyone else going through this at the present time with my level of metastasis which is a drag because I feel like I am wading through this alone with no direction or warnings to help prepare. I am going to keep describing my situation until I am through this so that others can get an idea of what to expect....

My last post was just after I was released from the hospital. Release instruction indicate that you are not supposed to drive for 1 week however, since I was told to drive, not fly by my oncologist, I had to SIT for 7 hours from Riverside back to the Bay Area of California and just watch. Now, I LOVE California. I love watching the scenery go by and even enjoy places like Buttonwillow and Coalinga but to not be able to drive at least part of it was painful. My wife's decision was absolute, NO DRIVING FOR YOU.

Once we arrived home, I assumed it would be fine and I could start activity again ASAP. I was wrong. On Monday, I became extremely depressed and felt a lot of panic. Panic in breathing, and in the efficacy of the treatment. I spent the day unable to think about anything but that and it was a pretty dark day. Tuesday was more of the same with a few more brain cells firing on different things but still worry and panic. OH, and LOTS of skin peeling! Another side effect of IL2 (Even eyelids).

Finally, on Wednesday, the clouds began to clear and I was able to focus on some projects that took my mind away from the darkness and I realized that some of my "me" was returning. Though I had read about the side effects of IL2, I saw more the physical side effects and didn't really consider the mental ones. I am here to tell you that they are AS DEBILITATING as the physical ones and not to be underestimated. Today, I feel much better and it really did take the better part of a week to recover, mentally and physically. So the suggestion to not drive, well, it's probably a good one.

The next emotional hurdle will be the CT scan which will determine if this is working or not. Today is June 12 and that doesn't happen until July 7. Meanwhile, I can feel tumors inside and have a dry cough from the lesions on my lungs which all make me wonder if this is working. So this is an emotional roller coaster time in this treatment cycle. We visited a local cancer support center to try to get some outside insight. VERY HELPFUL folks and I recommend anyone here going to one!!! The only problem is finding other people with your situation. This is still very difficult and finding someone to compare notes with would really be helpful but I haven't found anyone yet. We did speak with two other folks (Patient and caregivers) who were battling various cancers and I think we ALL went away with the thought that we were glad to not have what they did, but it really illustrated how crappy this disease is in WHATEVER form it comes in. We all have our own battles to fight. Treatment for any cancer SUCKS!

As for IL2 so far? Don't believe everything you read on the internet. Side effects are managed VERY WELL with drugs and care these days. Yes, it is no fun but not the awful thing that others have talked about from years past. Practitioners have learned a LOT in recent years and physical side effects are managed well in most cases. Be careful of the stuff that happens mentally though afterwards. If you are aware that they are going to happen, you can prepare. I was not aware and it really surprised me. It does get better over a few days though.

More updates as the scan gets closer and I have more appointments.


Take Care!!!

John

Stay Strong
John, just read your story and wanted to reach out, if briefly. Dark days are so hard to deal with and I'm sorry for yours. I hope everything works out for you and you live long and happily. Good luck finding someone who shares a similar situation. It's difficult to feel alone, but of course, you are not alone.

ejneary said:

IL2 Treatment
I have been searching for other peoples experiences regarding this treatment and have found little "New" information. The problem with anything in this area that is older than a few years is that this treatment has been honed to make it easier for the patient to handle. What is frightening is when you read posts from the early 2000's that talk about treatment related mortality and side effects that are horrific. The meds that they administer now do such a great job of controlling this that it is different. Now, I worry that I am only able to take 7 doses before I become neuro toxic which might mean that I will not get the benefit of those who have made it to 12 or 13 doses per cycle. I think that this treatment is important enough for folks with MRCC that there needs to be more information and more up-to-date information. Hopefully, my experience is a good one and that this works and people might not be so afraid to go this route.

These are dark days indeed and I appreciate your support. All of us have experienced the friends and relatives not knowing what to do for us. They say "Anything you need...". I just reply that prayer is really the only thing that they can do but is the best thing that they can do. I fear that I am overloading my God with too many requests these days. He already hears the same message from me every 5 minutes. Hopefully many voices will help.

Take Care of yourselves and thanks!!!

HD IL2--seven years later
Seven plus years ago, I was diagnosed with a large tumor, about the size of decent orange, and with my lungs full of tiny mets, "too numerous to count." Obviously, I was in tough shape, and without few options. At that time, none of the current targeted drugs were available, though I did participate in a clinical trial, which not successful in my case.

But I had been blessed with a surgeon/urologist who recommended that I enter a HD IL2 program, which I did about four months after surgery. I was 56 at the time, generally healthy--except for cancer--and determined to do anything to live.

My hospital experience was tough, or so they tell me. I cannot remember but flashes of the four weeks I spent there, just a few seconds in each of the weeks. My most difficult periods were due to my low blood pressure, which is normally low, but apparently went off the charts several times. Since there are very rigid rules about getting the measured dosages, given at 8 hour intervals, or not at all, depending on the patient's decision, this made a tricky balance. Of the few times I remember being lucid, I concentrated on raising my blood pressure, so that I could stay about the desired level so that I could get the next dose.


Over the four weeks, I averaged 8-9 doses, which was enough to start my journey back to full health. during the rest period between weeks 1&2 and weeks 3&4, I had a scan report, with the blessed words, "significant shrinkage". Though it was really tough to go back into the hospital the second week, as I was stunned to realize that I remembered nothing of it, and had a hard recovery week, it was easy to return for weeks 3&4. Knowing I was fighting back and making progress was the most wonderful, powerful feeling.

It is now seven years later, and despite some short-term joint pains, and mental fogginess, esp as to time and chronology of the cancer events, I am living a healthy and energetic life. I have seen my children graduate--several times!, three marriages, two grandchildren, lots of holidays, new friends and new work and new homes. All of this is thanks to HD IL2, and the doctors who asked me not only for my "informed consent", but game me all my "informed choices".

The statistics that are reported are typically derived from the clinical trials, done over twenty years ago. Those first patients were brave pioneers, no doubt more desparate and sick than many of the patients who are being treated today. Certainly there is more knowledge as to handling the side effects, in choosing the best patients, and in offering the treatment at an optimum time. Thus, the actual response rates are probably far better than those quoted.

Let me know if I may add more information about my experience.

ejneary said:

My experience, So Far
I was diagnosed with a 8 - 9 cm tumor on my right kidney on Jan 1, 2010. Right radical nephroctomy removed the kidney and tumor in Febrary 2010 and I went on ECG 2805 (blind clinical trial of either Sunitinib or Placebo, and Sorafenib or Placebo.). This went on for 54 weeks during which I received scans. There was one scan where a few "Spots" appeared on one lung back in December but they decided to continue the trial and watch these.

My last scan, once the trial was over, was in April. This scan, instead of coming up clean like I had hoped, had shown several tumors throughout my body cavity with lesions on both lungs. I was shocked and severely depressed to say the least. My doctor immediately suggested IL2 treatment. Upon further investigation, it was discovered that if my clinical trial was actually Suntinib and not Placebo, IL2 would not have been approved since Sunitinib causes degradation of the heart muscle which might negate the ability for the provider to approve IL2 treatment. They do somewhat tell you this when you are signing all of those papers for the clinical trial but the course of treatment should metastasis occur, was not considered so anyone following this path should be very aware of what drugs might negate IL2 treatment as a valid course of treatment should it be needed.

Once my clinical trial was unblinded, it was discovered that I was not on Sunitinib but WAS on Sorafenib (I knew that because I had 54 weeks of Diarrhea!)

So, after a pulmonary test and a treadmill test to test heart function, I was approved for IL2 treatment and went to Kaiser Riverside two weeks ago. The staff there are experts. Very knowledgeable at what they do and caring. They gave me meds to control all side effects and the only side effect that I had was rigors. However, after reading on the web that demorol is the only cure for this, I immediately hit the call button when I felt them coming on. They were gone within a minute of the demerol being injected.

I had no vomiting, no diarrhea, no headaches, no other issues. I felt awful, but I was not that sick from it. I was only able to take 6 doses though before I became neurotoxic. It was at that time that I became agitated and began to want to pull out the cords and "Get back to work". My wife was very concerned. I do not remember any of this and my wife said that it took a lot of demerol to get me to go to sleep. I was discharged the next day after they stopped the treatment.

I am not sure if this is working yet. I am not sure if only 6 doses is enough to see any changes. I have heard people taking 10 - 14 doses and can't imagine that myself right now.

I am due back in Riverside next week to begin again. I pray to God that this stuff has an affect. I am 47 years old and have a family that I really can't afford to leave right now. I have asked God for an extension and am praying several times daily for this treatment to work. I pray that for others going through this, that they also are successful in reaching NED. That is my goal.

I will let you know what happens after the next week treatment.

John

CT Scan Day
is finally here. I get the first scan after the first round of IL2 tonight. I don't expect to receive feedback from it until next week... Wish me luck that it is working.

John