Interleukin-2 treatments for Stage 4 RCC

ejneary said:

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

ejneary said:

Mixed Bag
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

aedney said:

Glad you saw some shrinkage
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 said:

I am jealous!
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

ejneary said:

I understand
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

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.

sdkorte said:

dkorte

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. 

Phoenix Rising said:

New IL-2 Patient
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.

strongmind said:

IL-2
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.