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Interleukin-2 treatments for Stage 4 RCC

fighting_the_fight
Posts: 10
Joined: Oct 2010

I am new to this website and to this discussion board. In November 2004, I underwent a radical left nephrectomy for Stage 2 RCC. I received no further treatment at that time because I was told by the urologist who removed the kidney that kidney cancer was non-responsive to both chemotherapy and radiation therapy.

I continued to have regular CT Scans of the chest, pelvis and abdomen. However, I did ditch the urologist and started seeing an oncologist. Last Fall, almost 5 years out, I was diagnosed with Stage 4 RCC as the cancer was found in my lungs and a lymph node. I have since been treated with Avastin and Interferon Alpha; followed by Sutent (didn't tolerate this one well at all); and am currently on Nexavar. I had 20-37% shrinkage in the lung "nodules" on the Interferon and Avastin treatment. Also, the cancer is no longer visible in the lymph node.

I am responding well to the Nexavar, but my oncologist has recently revisited the option of Interleukin-2 treatments. He feels this may be a good option for me since there no longer appears to be lymph node involvement and since the nodules in my lungs are small. At this time, no other involvement has been diagnosed.

Has anyone undergone the high-dose Interleukin-2 treatment? If so, could you please share your experiences with this treatment with me? So far, I have not missed a single day of work due to my cancer treatments. I continue to keep a positive attitude, and my oncologist claims that I have "breezed through" the three treatments I've been on thus far.

Thanks for any insight you may offer.

Fighting

beanfarmer
Posts: 8
Joined: Mar 2010

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

Email me your contact info if you want to talk.

jkbordelon@centurytel.net

fighting_the_fight
Posts: 10
Joined: Oct 2010

JK,

Thank you for your response to my post, and for the information you have provided regarding your Interleuken treatments. I would very much like to speak with you regarding your cancer and the treatments that you have received -- especially in Interleukin-2. However, I would prefer that you email me your contact information first. My email is moldngyoungminds@aol.com.

I look forward to hearing from you.

fighting_the_fight

DINOSAUR40
Posts: 2
Joined: Oct 2010

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
Posts: 10
Joined: Oct 2010

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

jisrael
Posts: 5
Joined: Sep 2010

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
Posts: 10
Joined: Oct 2010

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

beanfarmer
Posts: 8
Joined: Mar 2010

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.

fighting_the_fight
Posts: 10
Joined: Oct 2010

JK,

Thank you for the follow-up post. You are very right about the numbers game! I had not looked at them the way you describe them, but now I will!

Holy mackerel!!! I thought the $35,000.00 a month for the Interferon and Avastin treatments was bad. (I was on it for 3 months to the tune of $105,000.00). I'm glad you mentioned the cost involved and I am certainly glad that my husband has wonderful health insurance.

I tried calling you a week or two ago (hope you got my voice message). I still would like to speak with you. I will try to call one day this week during my lunch hour (12:30 p.m. EDT), but if I can't reach you then, what time would be a good time for me to call? I don't get off of work until 5:30 p.m. my time.

I look forward to speaking with you. I'll be keeping you and your family in my prayers, and I'll be keeping good thoughts for your November scan.

Fighting

crazyquilter
Posts: 3
Joined: Mar 2011

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.

sdkorte
Posts: 2
Joined: Jun 2012

How are you Now...

I am about to have this IL 2 . June 25th

What would you advise me to doo....

Can my spouse go with me...?

THANKS dk

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

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

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

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's picture
ejneary
Posts: 64
Joined: Mar 2010

Just was release from the hospital today after second round of IL2. The treatment was as it was last time. Flu like symptoms, no vomiting, no diarrhea, but a strong desire to get out of there and severe anxiety. They stopped after dose 7 this time. I had had enough. I am hoping that this time, it is starting to work. I will know if a few weeks when they do another CT scan WITHOUT contrast dye. The contrast dye can set up an allergic reaction and that will mean they might need to use steroids (Prednisone or the like) to rid you of those symptoms which will eliminate your chance for ore IL2 doses.

Anyway, I am back at the hotel now and trying to come off of all the meds they have you on while in the hospital. I feel good, tired but good. Hoping that this treatment works is a tough haul. On the one hand, you can't wait to stop the treatment and get out fo there, on the other hand, you want more so that you can get rid of the cancer. It really is a devil versus God in you struggle. Lots of prayers help but when you mind starts to go mushy, it is difficult.

More to come as the saga continues....

Good luck everyone in the battle and God Bless each and every one of you to have the grace to fight this battle!

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

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

gina1007
Posts: 2
Joined: Jun 2011

Thanks for the updates. I am very interested in hearing about your IL-2 treatments. Good luck and keep us posted!

dzerbonne
Posts: 4
Joined: Jun 2011

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's picture
ejneary
Posts: 64
Joined: Mar 2010

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!!!

Peggyz
Posts: 6
Joined: Jun 2011

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's picture
ejneary
Posts: 64
Joined: Mar 2010

in more information as I am in the middle of treatments 1&2 and 3&4... The difference seems to be though that instead of a week between them, I have 5 weeks between 1&2 and 3&4 and my CT scan is scheduled for next week to determine if the treatment is working. You might not be able to answer due to the change in protocol but did you have symptoms of your cancer and did you notice them going away as treatment progressed or not?

I ask because I am experiencing changes that I can feel internally that make me feel like this isn't working. In particular, I have had a cough since the second round of dosing and I can feel things inside that don't feel right. This all has occurred since the end of the second round of dosing. It is really nerve wracking waiting around so long for the CT next week and though I know that they want to make sure that the treatment has had time to do its thing, I am worried that waiting so long is letting the cancer progress. Since they told me that my cancer is "Aggressive", I am just concerned and worried that if this isn't working, my options are slimming by the day.

It is heartening to hear your story and that it worked for you. Were 4 rounds of treatment all that were required for you? If not, how many times were you back for treatment? How many doses did you tolerate each time and did it change? Where were you treated?

It sounds like low blood pressure was the side effect that caused them to stop treatment each time. What other side effects did you suffer?

Any other information would be helpful not only to me but also to anyone else considering this treatment option. You are right in that the information on the web is stale and misleading.

Thanks!!!

John

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

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

rae_rae's picture
rae_rae
Posts: 264
Joined: Oct 2010

Positive thoughts and prayers for good news. My first CT scan since surgery was today as well.

Rae

niprut
Posts: 23
Joined: Jul 2011

Hi John,

Wishing you luck, you are in my thoughts. I hope you have lots to keep you occupied while you are waiting for the results!

Take care,

Jo

aedney
Posts: 6
Joined: Jul 2011

Hi John,

I've been reading your story and just got up the courage to post. I finished my second week of HDIL2 on June 10. I have my ct scan this friday. I'm feeling so nervous, I'm so hopeful that it worked, that there is some shrinkage or even that there is no new growth. It is so hard to find someone who is in the same situation, I hope you find out soon and update us here. I will pray that this worked for you and am sending positive thoughts your way.

Amy

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

Amy:

Thanks for getting the courage to write. I have been searching for people going through this and though there seems to be a lot of people going through it (Based on cancer center business), they are hard to find on cancer sites and in group sessions at my local cancer support center. You are the first person going through this that I have found.

I'd be interested in where you are being treated and what the specifics are.

Myself, I was diagnosed with metastatic disease in April after completing 54 weeks of Sorafenib on a clinical trial. I was approved for HDIL2 and went to Riverside Kaiser on May 18 to start the first round and completed the first round in June. My first CT after the first round was last week and the results were mixed. The largest tumor reduced by 1/3 in size but the smaller ones got larger. It seems my liver met got slightly smaller but due to the fact that I was not able to do the contrast dye for the CT for fear of allergic reaction after IL2, they can't really get good and accurate measurements...

So, mixed bag... My Doctor (Dr Gailani, best of the best) called and said that we were in a holding pattern for another 8 weeks to see if the treatment is continuing to work. I get another CT at that time. Evidently, the change to your immune system is long lasting and these things can continue to change over a long period of time.

Unfortunately, I also have a pleural effusion in my left lung which is probably an indication of damage caused by one of the lung lesions. SO, that has to be addressed more than likely through aspiration. Though, I feel this has gotten better over the last week, I also feel like I am falling apart. Internally, I can feel changes that worry me.

So, I am back in limboland and will be visiting my oncologist hopefully next week to discuss what this all means. My feeling is that she doesn't have a lot of experience with this treatment so I am trying to get in touch with people who have been through it to know what to expect. It seems that when you respond, you respond. Not sure if anyone as gone through HDIL2 over a longer period of time or if certain people respond slower to the treatment.

So, I completely understand your fear and anxiety level right now. The feeling of the unknown and uncertainty is miserable. This is combined with the fact that the IL2 itself causes depression, anxiety and panic attacks doesn't help either. It took two weeks after the second week of the first round for me to get through the depression and anxiety. That really sucked. They didn't really warn me about those after effects of the treatment and there was NO ONE who understood what I was going through. My beautiful wife has been such a gift to me and has been there 100% in understanding my feelings and helping in every way possible but to find someone who has been through this and could really explain what I should expect would have been really nice. This is why I post...

I am very interested in your experience through the treatment. Were they able to control your side effects effectively or did you have problems? How do you feel now? How did you manage after effects and such? This is the stuff that I had no idea about and felt like I waded through an abyss and yet a flood of information and misinformation, some of it helpful, most of it terrifying... It was all so confusing and yet, here I am!!!

Please continue to update on your condition. I think this will help others who are searching for information and I am interested too as I am in the thick of it. There must be a collection of IL2'ers somewhere!!! If you have questions, please let me know.

I'll add you to my prayer list and pray for a totally positive outcome for you.

Thanks!!!

John

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

Let me preface remarks by saying my first Dx was Stage IV RCC. Surgery and two subsequent surgeries each of the following years have left me with no evidence of disease five years after original diagnosis.
One of my co-participants in a Cancer Survivors Support Group had IL2 treatment. Her first Dx was Stage II and she had a radical. Two years later, it was found in her lungs and she had a left lobe remove. A year later, it was back with nodules in the lungs. IL2 is extremely hard on the body and was only administered as an inpatient a week in and 2 weeks off. During her third session, her heart was affected and the Dr. stopped the treatment. This was 2 years ago; the lung nodules have shrunk some-not gone away; but they are stable.
She saw Dr. Curdy at Providence Medical Center in Portland, OR.

Good luck on any decison making and treatments.
Donna

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

Donna:

Wow, that's a lot of surgery but congrats on being NED. I envy you and hope to be there some day. Where were your metastasis that they were resectable?

Your co-participants story is promising for survivorship. I'd be interested in more of the specifics on her IL2 treatment. For instance, was it constant? Did her results show immediate positive affect or were there mixed results? When you mention her third session, do you mean the third week of treatment or the third round (A round being a week in a week off and a week in again)?

As you can tell, I am thirsty for more information on people who have gone through this as there is relatively little information from people who are in the middle. Mostly, if it was successful, people tend to run as far away as possible from talking about it and go back into "Normal" life. The people for whom it was not successful are more than likely very ill or are gone. The middle folks who had a partial response are the ones that I am interested in because it seems that this is where I am.

You are right though, IL2 is hard on the body and I am having joint pain like arthritis now that I attribute to this treatment. Not sure what else will pop up as time goes on...

Also of interest is any follow on treatment that your co-participant had after IL2 if any.

Thanks for posting!!!

John

aedney
Posts: 6
Joined: Jul 2011

I was diagnosed in Feb of this year with metastatic kidney cancer. I had a large mass on my left kidney and a large mass on my left chest wall, with some small nodules in my left lung. The first procedure I had was a embolization done by an interventional radiologist to try to cut off the blood supply to the mass in my chest. After that my kidney was removed. I had a scan which showed that the mass in my chest is getting larger, so because of my age (49) and the fact that I'm in generally good health, my oncologist suggested the HDIL2 for my first treatment.

I had this treatment at the University of Michigan Hospital in Ann Arbor Michigan, my oncolgist's name is Dr. Bruce Redman, he has been doing this for a really long time and this is his speciality (tumor immunology). The first week I was able to have 11 doses, side effects were pretty managable but mostly nausea, and generally icky feeling, my husband was able to stay with me 24/7 so I had a lot of support. When I went home for the week in between I felt terrible for the first 4 days, and then gradually started feeling better. The second week of treatment I was only able to have 9 doses, my blood pressure went way too low, they gave me dopamine to try to raise it but it didn't work. The second week of treatment the side effects were worse than the first with the addition of the rigors, although very well controlled.

I have a lot of memory loss from those two weeks of treatment. I keep remembering things and asking my husband if it happened. I have been feeling pretty good since my treatment and have my first scan on Friday which will be read for me next week. I'm really nervous about it. I mean I have 4 children, my two youngest are girls and still pretty young (11 an 14). I have to be around for a long time to help them grow into young women and I'm so afraid I won't be there for them. I try not to think negatively, but sometimes I can't help it.

I had a pleural effusion also, that is how I was diagnosed. I was really short of breath and my regular doctor thought I had pneumonia, but the antibiotics he gave me didn't help. He finally sent me my a CT scan and then they found both masses. I had to have a thoracentesis (sp) to drain the water from around my lung. Luckily since the embolization, it hasn't come back.

I hope all goes well for you, please post about your treatment options and I will too.

You are in my prayers,
Amy

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

It amazes me that some people are able to take so many doses of this stuff. I was only able to manage 7 doses at most before I became Neuro-toxic. I had rigors every other dose the first and second weeks of the first round. My BP remained in the acceptable range but my heart rate went to 150 every time I got up to go pee....

I never had the nausea, vomiting or diarrhea but maybe it was because I was not in long enough for those symptoms to set in or the pre-treatment cocktail was so well constructed that it just was never gonna happen...

The first week, when I became neuro-toxic, I lost a lot of time while it was happening. I can remember feeling out of it, but there was about an hour, I guess, maybe more that I was not around but becoming violent. I guess I began throwing things off the table and threatened to pull out the PICC. That's when the nurse came in with the big needle full of demerol. After that, I guess I laid down and went sleepy bye.

The second week, I was cognizant throughout. I remember feeling agitated and anxious and that's when they pulled the plug.

The recovery did take a few weeks. I think back now and the depression was probably the longest lasting but maybe this is true since it affected me mentally more than via heart rate or BP. Not sure. The negative thoughts are a normal function of your mortality being so squarely shoved in your face along with the horrid statistics for this cancer type and stage. Hang in there!!!!

As far as kids are concerned, My daughter is 13 and son 17. I am not even sure if I would be any more afraid of leaving 10 years from now. So, when I pray, I ask God for an extension of at least 50 years on my life to make sure that they are old enough to take care of themselves!!! Every once in a while I have thoughts of being gone in the next year and they are horrible thoughts. I am in a cancer support group and there are several people who are at the stage where this is a potential reality and we are all having the same thoughts. I guess it is natural. Cruel in a way that a disease makes you ponder your own death. It is also a gift that you can decide to make every moment count from now on!!! I take many moments out of every day to stop, listen, look, smell and experience my world, even when I am sitting in traffic and thank God for every day!!! There are times when it is all debilitating and times when I am filled with resolve to beat this beast. Try to hang on to the good stuff and make it count...

I have an appt with the pleurologist on Monday. I can feel that part starting to get better so not sure what that will yield. For the time being, take time to enjoy every moment that you can, especially with your kids.

John

donna_lee's picture
donna_lee
Posts: 388
Joined: Feb 2009

For me, the RCC clear cell recurred in separate nodes. It had been in 2-3 or a set of 11 on the first surgery. #2 it was in a node attached to the duodenum and the inverior vena cava. It was found between the Feb. and May Ct's that year and confirmed with a needle biopsy. A year later, again by comparing 2 scans there was a node behind the bifurcation of the aorta where it splits to go down each leg. No biopsy because of location, but PET confirmed it was a vascular site that shouldn't be there, so surgery confirmed.

My friend had the IL2, and it was during the 3rd round of treatment out of 6 that the Dr. said no more. She was going into heart failure. She's fairly knowledgeable as she'd been an LPN in a hospital for over 20 years until a patient lifting injury put her as ward secretary for another 12 years. I'd have to ask her more specific questions to find out more than what is discussed in group session.

Another lady at group is 12 years past surgery for her radical. She had a contained tumor in what they called a "sticky pocket." But the tumor enlarged from the size of a cantaloupe to a 13 pound watermelon at removal in the 5 weeks between diagnosis and surgery. The surgical adhesions caused her to need follow up surgery after about 10 inches of her colon died.
Other than being in her 80's, diabetic, on coumadin, and having severe arthritis, she continues to drive, does house and pet sitting, and lives a self sufficient life.
Hers has not returned. Her brother had RCC that mets to other sites, but he didn't take care of himself, and....!

What a life we've been dealt. Hold 'em or draw from the deck? At least we have a chance of peaking at the value of the next card before deciding to take it.
Again, Good Luck.
Donna

Anna Bery
Posts: 19
Joined: Jul 2011

My mom, 69 y/o was diagnosed with stage 4 renal cell a year ago. She underwent a major surgery and where her right kidney with part of her intestines were removed. After the surgery, she was on Sutent for around 11 months when the CT scans showed mets in her liver and back muscle, around the same time she developed a severe back pain. Her oncologist offered Afinitor, but we decided to try IL2.
I must say that for me and my mom it was a terrible experience. I was with her 24/7 and I was terrified. The first week she tolerated 10 doses, she was vomiting, swollen, and around 9 dose she started to hallucinate and tried to tear off the IV, she constantly jumped from her bad and tried to run somewhere saying that people who were not existing are in our room. She recovered pretty well at home, still she was vomiting from time to time and her hemoglobin dropped so much she needed 4 bags of blood to start the second treatment.
The second one was brutal. Mom could take 8 doses but the mental side effect were more severe because her brain became very swollen. This time, she did not know where she was, who was me and what was going on. She could not fall asleep for 24 hours halucinating all the time that she is in a mental institution and that people were trying to take her place. Then, they gave her something from anxiety and she fell asleep, waking up only to go to the bathroom. Each time she woke up to bathroom she fought with me because she thought that bathroom is not where I am leading her. Besides that, she was vomiting, diaharia, itching, swollen...it was terrible.
Mom did not recover good from the second treatment. Her back pain increased and her body was shacking...The doctor who conducted the IL2 did not follow up on her and her pain was untreated all these weeks that we were waiting to CT scan her and see whether the treatment helped. Anyway, mom was looking so bad after the second treatment that it was hard to believe that it was even working.
The CT scan showed that the IL2 did not help and that the cancer invaded her spinal cord...
The doc who conducted the treatment told me to put her in hospis care since the only cure was IL2.
However, we still have hope. Mom is on pain management, started radiation of her spine, steroids to reduce swallowing and inflammation, and today started Terosel treatment.
I wish everybody who goes through this terrible IL2 treatment GOOD LUCK. Its very disappointing to find out that it did not work after all these sufferings.

Anna Bery
Posts: 19
Joined: Jul 2011

My mom, 69 y/o was diagnosed with stage 4 renal cell a year ago. She underwent a major surgery and where her right kidney with part of her intestines were removed. After the surgery, she was on Sutent for around 11 months when the CT scans showed mets in her liver and back muscle, around the same time she developed a severe back pain. Her oncologist offered Afinitor, but we decided to try IL2.
I must say that for me and my mom it was a terrible experience. I was with her 24/7 and I was terrified. The first week she tolerated 10 doses, she was vomiting, swollen, and around 9 dose she started to hallucinate and tried to tear off the IV, she constantly jumped from her bad and tried to run somewhere saying that people who were not existing are in our room. She recovered pretty well at home, still she was vomiting from time to time and her hemoglobin dropped so much she needed 4 bags of blood to start the second treatment.
The second one was brutal. Mom could take 8 doses but the mental side effect were more severe because her brain became very swollen. This time, she did not know where she was, who was me and what was going on. She could not fall asleep for 24 hours halucinating all the time that she is in a mental institution and that people were trying to take her place. Then, they gave her something from anxiety and she fell asleep, waking up only to go to the bathroom. Each time she woke up to bathroom she fought with me because she thought that bathroom is not where I am leading her. Besides that, she was vomiting, diaharia, itching, swollen...it was terrible.
Mom did not recover good from the second treatment. Her back pain increased and her body was shacking...The doctor who conducted the IL2 did not follow up on her and her pain was untreated all these weeks that we were waiting to CT scan her and see whether the treatment helped. Anyway, mom was looking so bad after the second treatment that it was hard to believe that it was even working.
The CT scan showed that the IL2 did not help and that the cancer invaded her spinal cord...
The doc who conducted the treatment told me to put her in hospis care since the only cure was IL2.
However, we still have hope. Mom is on pain management, started radiation of her spine, steroids to reduce swallowing and inflammation, and today started Terosel treatment.
I wish everybody who goes through this terrible IL2 treatment GOOD LUCK. Its very disappointing to find out that it did not work after all these sufferings.

sdkorte
Posts: 2
Joined: Jun 2012

I am going in Next week for the Interlukin 2..

Please How are you now...?

How does your spouse or significant other deal with this and did someone go to hospital with you?

Should I take my computer and music with me too...?

THanks I hope to talk with you more.
debbie_korte@yahoo.com

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Hi Debbie,

My husband underwent HDIL2 in January and February 2012. During the first round, he had the maximum 14 doses; the second round 10 doses. During the first round he tolerated the side effects pretty well. He constantly received fluids but he was able to get around with his medicine pole. The second round was more difficult and he was confined to the bed after the second day. He hated that.

His worst symptoms was the rash and itching that did not allow him to sleep. He also had food phobias and hardly ate, particularly second time.

When he was in hospital, I was there with him most of the time. They didn't enforce any kind of visiting hours and because of close monitoring and possible side effects, they usually provide a private room.

Good luck to you.

MJLCaregiver
Posts: 1
Joined: Jul 2012

Hello there...My husband just finished the first week of cycle 1. It was a wild ride. I stayed with him almost everyday and worked from his bedside.... on a couple of nights I stayed over night at the hospital. It is a rollercoaster ride for both you and your spouse. But hang in there. The worst part for my hubby was just being in the room without any way of getting out. TV, Movies, or music are all good things to have if you are able to tollerate it.

J

tabekat's picture
tabekat
Posts: 2
Joined: Jul 2011

My right kidney was removed in September 09 due to a kidney cancer diagnosis.
On February 15th, 2011 they discovered mets in my lungs, liver, and lymph nodes.
(What a Valentine surprise!)

I underwent 2 rounds of IL-2 at the Portland Cancer Center - March 2011.
(A wonderful hospital, fantastic staff - but a little too Nazi for me.)

Going to be totally honest about how IL-2 was for me. It didn't work.
But please know that the treatment and results are different for everyone.
I have a friend who breezed through the IL-2 and was completely cured - her
cancer melted like magic.

Personally, I found this treatment extremely difficult - not only is it painful physically but also mentally. My worse symptom was the rigors (extreme shaking, chills) and my blood pressure dropped - I was only able to tolerate 8 doses each session.

For me, the worst part of IL-2 was losing my independence - vitals are monitored constantly - not being allowed to leave the room and the bed and move around, not being able to eat, not being allowed to pee in the bathroom - I just found it so frustrating.

And...there was extreme mental craziness...I couldn't sleep, I paced the floor over and over, my brain was fried - even with sleep medication the dreams I had were just terrifying. I wasn't vocal enough with the medical staff about the things I was experiencing either. I was disoriented - and bewildered.

2nd round was better as they countered the mental reactions with stronger meds. But there is a real serious "quality of life" issue with IL-2. At least for me. After the treatments I was extremely fatigued and unable to work up the energy to do anything.
It was really tough on me and it took me several months to recover from it.

And it didn't work. I was very depressed and discouraged when my doctor told me there had been no improvement...he then started me on the lowest dose of Sutent but stated there really wasn't another rabbit they could pull out of the hat. At least not now.

In retrospect, I am grateful I was able to do the IL-2 sessions even though it didn't work for me. At least I know I took the strongest treatment medical science has for RCC at this time. I was lucky to have insurance at that time. Now my work has forced a medical termination on me and I don't have insurance any longer. So I'm not doing anything for the cancer right now and it does feel like I have a time bomb in my chest. But I try to keep a sense of humor about it. I never forget that the source of my wellness doesn't come from medical science, but from the Source...

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

What you mean about the treatment. There is no dignity and measuring what goes in and what comes out means that you have to collect #1 and #2 and let them measure it. Not fun at all being strapped to the bed by wires and tubes but I'd do it again if it is working. Frustrating for you that it did not.

I am confused as to why you have not elected to go on Social Security so that you can continue treatment. You should be exploring all of your options to continue treatment. This disease is a bad one and not to be left to it's own course. I am surprised that you doctor did not suggest any of the targeted therapies that are available. This is why I would get onto SS and get back in with another doctor.

Good Luck and get back in to a health care professional!

John

tabekat's picture
tabekat
Posts: 2
Joined: Jul 2011

I did qualify for Social Security Disability but they told me there was a 6 month waiting period. It does not start until September 21st, and after it starts I can apply for Medicaid.

Targeted therapies...I went on a kidney cancer study after my kidney was taken out.
I had a violent reaction to the drug they gave me - I was as swollen and red as a
blow-fish and I stopped breathing. I think my doctor was concerned I would not be
able to tolerate the drugs they prescribe. I am concerned I would not be able to
tolerate them. Nevertheless, I will try them again when I am able to qualify for
some coverage.

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

Hello All,
I believe the posts above are the most recent IL-2 experiences on the board, so I thought I would lend my treatment experience.

Background:
April 2009- Diagnosed w/ stage 4 papillary renal cell carcinoma discovered while investigating severe right flank pain which turned out to be an expanding cyst on the kidney.
June 2009- Right radical nephrectomy, removal of mass from inferior vena cava, lymph resection.
June 2011- Removal of single lung mets in right lung. Lung function and capacity not affected
March 2012, MRI detected additional lung mets on both lungs. IL-2 recommended.

The oncologist recommended High Dose Interleukin-2 as the only chance of cure. I balked at first but did some on-line research and decided to accept the treatment.

I received the first of what would be 6 doses May 29, 2012. I experienced mild flu symptoms, the worst of which were diarrhea and vomiting. The medication for nausea, Atavan, was not very effective and I did not eat anything during my hospital stay. I ate a nice, cold, orange my last day in the hospital and drank a can of Coke (which proved very effective in eliminating nausea). I asked to stop the treatment after 6 doses because my heart was constantly pounding and I felt as though I had run a marathon.

When I returned home after the 1st round, my heart was beating rapidly from what I felt was exhaustion, yet I could not sleep the first 2 nights so I asked for a prescription sleep aid. Ambien was a God-send and I was finally able to rest and begin my recovery. I had a relentless cough, I constantly had to blow my nose and found blood-streaked mucous, retained 30 pounds of water weight, and the diarrhea continued for 2 days. By the 6th or 7th day, I had dropped all of the water retention, the cough faded, I was sleeping through the night without Ambien, and the nose-blowing subsided.

When the oncologist felt I has suffienctly recovered from the first round, I was scheduled for the second round, which I began June 25, 2012.

The second round brought the same side effects I had during the first round, with the addition of a low red blood platelet count, for which I had to have a transfusion. I felt brand new after the transfusion. I also began to have chills during the 3rd cycle or so (my memory of it all is fading quickly), but the minute I felt cold, I let the nurse know and she gave me a shot of Demerol in the IV and it got rid of the chills before it got started. During this round I asked to stop after dose 6 because my heart was pounding, but when I skipped, I felt much better the next day and asked for dose 7. My oncologist agreed but stated he was concerned about my creatinine levels (which measures kidney function) and he stated dose 7 would be my last.

I came home after a 5 night stay in the hospital with the same side effects I experienced in round 1, including the 30 pounds of water retention, but this time I experienced pruritis. The Eucerin the hospital gave me worked well, but Aveeno intense moisturizer worked better.

I lost all of the water weight again within 4-5 days, used Ambien 3 nights, was eating a normal (vegetarian) diet the day I returned from the hospital, and would drink a half-glass of Coke for fleeting nausea. Fresh ginger tea also worked well for the nausea, but sometimes I just felt like having some icy, cold, Coca Cola.

I juice every morning and mid-day, and I really believe that helped alleviate the water retention and lessened the severity of my side effects. I found the side effects to be tolerable although the vomiting and diarrhea were a nuisance. It was difficult having your neck tethered to an IV machine and trying to make it to the restroom quickly. My friends, however, have had to remind me of conversations we had in the hospital room. From their point of view I was completely cognizant of my surroundings, but I only remember SOME things with great clarity, and other conversations were foggy or forgotten.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Keep on rising Phoenix!

Thanks for contributing a very useful summary of the side-effects you had and what you found useful in managing them. This is the sort of posting that can be very helpful to others and is why forums like this are so valuable.

strongmind
Posts: 22
Joined: May 2012

My husband's 1st round of high dose IL2 started this week. he has numerous tiny mets on lungs. he had nephrectomy in april this year. So far he is given 7 doses and they are going to skip next one( mid night, 7/11). He is continuously experiencing nausea and threwing up too. so they want to settle down his stomach before next dose. other than that he is having some body pain and redness..will keep posting once his this round completes.

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

Strongmind,
I forgot to mention the doctor recommended I keep some fresh ginger root next to my bed for nausea. Whenever I felt a wave of nausea, I would smell the ginger root and the nausea would go away. If the root smelled a little weak, I would poke it with a fingernail to expell a stronger aroma of ginger and it worked well. Also, if you are near Michigan or another state that sells Vernor's Ginger Ale, it is also good for nausea, as is regular (not diet) Coke.

I also started using the Aveeno Intense Moisture cream and the Eucerin cream BEFORE I started IL-2. I had NO skin rash after the first round, and although I had some skin peeling on my shins, rash on my eyelids, and itching after the second round, the duration was much shorter than what I have read from other patients. My skin issues lasted 3-4 days, whereas other patients said theirs lasted 3 weeks or more. I believe using the creams in advance of the IL-2 helped.

The nurses gave me cocktails of Benadryl, Tylenol and Immodium daily. I took Benadryl capsules for 2 days once I was released from the hospital.

Phoenix Rising's picture
Phoenix Rising
Posts: 150
Joined: Jul 2012

I hope you all don't mind if I drop back in each time I remember something I think may be valuable. I searched for recent testimonials and patient experiences from those who had kidney cancer before I started the treatment, but did not find very much. It is my hope that I can be an "up-to-date" and continuing voice. My memory of the experience is fleeting but I would like to post as much as possible while I can remember.

So, I forgot to mention the mood swings...
As you can see, I am forgetting about my side affects already, since they didn't last long. After my release from the hospital, I had an angry thought and ran with it mentally. I immediately realized this was a side effect and just stopped. I didn't do anything special, I just stopped thinking Wicked Witch of the West thoughts (thoughts of chewing my husband out for some perceived misdeed) and did a little deep breathing to calm myself. I had a few more mean thoughts over the next couple of days and stopped those in their tracks, as well.

foxhd's picture
foxhd
Posts: 1854
Joined: Oct 2011

Keep posting Phoenix. I know that I for one am less clear on many details of my rcc experience as time goes on. I should have written a journal. I guess this site provides the same purpose.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

It does, Fox. That's why it's such a pity it doesn't offer just a little more structure so that we can more easily access material. If we had permanent pigeon-holes for recording info. we'd know where to go in the archive to dig out helpful stuff from the past.

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