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My Interleukin 2 Experience

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

 I wrote this entry in my personal journal but I decide to post it here on CSN. Some people may find this post informative or entertaining. Sorry if it’s a little long. - BDS   

Background.

 

On May 28th 2012, at the of age 52, I was diagnosed with Stage 4 Renal Cell Carcinoma. I have been on the drug Votrient (Panzopanib) since July 2012. Up until February 2014 Votrient had done a wonderful job of shrinking and stabilizing my tumors (I like to refer to them as my little terrorists).  On Valentine’s day 2014 (How Romantic) my CT scans showed growth in three tumors. This unfortunate news sent me into a near panic. After meeting with my oncologist, I scheduled and appointment at John Hopkins University Hospital with Dr. Hans Hammers with the intent of getting into a PD-1 clinical trial. On the day of my appointment with Dr. Hammers my wife and I were informed that the clinical trial I was seeking was canceled. After speaking to Dr. Hammers about my cancer I was given three treatment options (1) Go on Inlyta – Axitinib, (2) Interleukin - 2 or (3) Hope to be accepted into an upcoming PD-1 clinical trial.  When Dr. Hammers and I discussed treatment with IL-2 he just said “If you were my patient, I would have put you on IL-2 first”.  After weighing my options and the logistics involved, I decided to go for IL-2 treatment at Jefferson University Hospital in Philadelphia. 

 

New Twist on an Old Idea.

 

After meeting with Dr. L (sorry, no names after this point) they were going to try something a little different with me. They would radiate one of the tumors in my lungs three days before I would receive IL-2. The hope being that by radiating one of my tumors, my body would produce antigens that would help Interleukin and my immune system identify the cancer. In a Phase 1 clinical trial a sixty percent response was achieved for melanoma and renal cell cancer patients using this method. I would be only the second patient at Jefferson were this technique was attempted. I have to admit that I had certain amount of mental satisfaction with this approach. At least one of the eight tumors in my lungs would be zapped to oblivion like an ant under a magnifying glass. Take that cancer!  

 

Tests, Scans and more Scans. 

 

Before one can be accepted as an IL-2 candidate a lot of medical tests need to be performed. Scheduling all the tests in the time required becomes a full time job in itself. For me, the list was as follows: Pulmonary Function Test, MRI Scan of the Brain, CAT Scan of the Chest, Nuclear Medicine Bone Scan, Radiation Oncology Consult, Cardiology Consult with the potential of having a full stress test ordered (lucky for me a full stress test was not ordered) and of course blood work.

My only concern with medical test is the amount of cumulative radiation I have been exposed to since being diagnosed in May 2012. This is starting to be a real concern of mine  

 

Radiating my tumor.

The radiation oncology team created a cast of my back so I would remain absolutely still during the procedure. To precisely target the tumor three small tattoos* were place on my body that would be later used to align the lasers. A complication occurred when medical software that was designed to track my breathing during the treatment was unable to do so. This was due to the fact that I am not overweight and do a lot of cardio exercise. In short, I am too healthy! Two additional low dose CT scans were ordered to compensate for this and provide the data needed to track my breathing – Yes, more radiation.

* On the humorous side of this experience, my teenage daughter had a field day with the fact that I was getting tattooed. You see, I have a NO Tattoo rule in my house. She would bust on me and say “Daddy’s getting his first tattoo - when can I get one?”  

The Picc Line.

 On May 5th 2014 I was admitted to Jefferson University Hospital. The first order of the day was the insertion of the Picc line for which the Interleukin would be administered. I am embarrassed to say that it was during the course of the operation to insert the Picc line that I started to lose it! Up to that point, I just compartmentalized my cancer in my mind. I mentally just place the drug Votrient in the same class as blood pressure and cholesterol medications. Votrient was just four pills that I took at bedtime.  Its side effects were bothersome but my life pretty much went on the same as before I was diagnosed with cancer. The realization that I was now in a hospital operating room heading for the oncology ward really hit me hard. I just started to lose it! Nurse M started to notice this and she asked me if there was any kind of music I would like to listen to. I replied “Classic Rock” and believe or not Nurse M started singing the Rolling Stones song “Goodbye - Ruby Tuesday” I then quipped “Nurse M - had you had many patients walk out of your operating room?” After I said that the whole operating room just erupted in laugher - everybody the doctor, the nurses and myself. We all just started cracking up laughing. Nurse M then took out her I-Phone and played Pandora through the rest of the procedure. Nurse M was a life saver.

Infusions

I received my first infusion of IL-2 around 4 pm, 45 minutes later I got the rigors. I was reading a book in my hospital bed and I started feeling a cold sensation run up my right hand through my shoulder and up my head then to my left hand. Before I could place the bookmark in my book, I looked to my wife and uttered the word rigor. After that, I was flailing like a fish out of water.  The rigors came on so fast I had no time to hit the call button. My wife who is no light weight (Yoga, Pilates) could not hold me down. Within minutes the nurses came in an administered Demerol/meds and the rigors were gone. I suffered through the rigors during my first three infusions - after that the Demerol was administered right after every infusions.

Il-2 Dose

 

 

Pissing Off the Jefferson’s Comprehensive Acute Rehabilitation Unit

As you may know being treated with Interleukin requires an inpatient hospital stay. While an inpatient your doctors and the nursing staff will strongly encourage you to walk the halls of the hospital and move around as much as possible. This is done to help reduce the amount of fluid your body will gain while being treated with Interleukin. After a while walking the same hallways over and over again gets extremely boring!  On one of my many rounds of walking the hallways my wife and I wandered into the Jefferson’s Comprehensive Acute Rehabilitation Unit. At the time I walk into the unit it was largely empty. No patientswere doing rehabilitation.

As I wandered through the unit there in the corner sat a single lone unused stationary bike. For me this was like finding the Holy Grail or an oasis in desert. So I got on the bike and started exercising. Just what the doctor ordered right. Wrong - I was on the bike no more than 15 minutes when a nurse ordered me off the bike. I was told that I could not use the equipment in this department unless I had a doctor’s prescription. At this point the head of the Rehabilitation Unit came over and told me I was not allowed in this unit due to legal liability. I told her point blank that “I am not harming – anybody! I have stage 4 renal cancer and believe me - you are the last person in the world I would sue. I really wish I could sue my urologist for getting me into this mess!

Well my little bike ride started “a discussion” between the department heads of Jefferson’s Oncology Ward and Rehabilitation Unit. I was later told that I was banned from Comprehensive Acute Rehabilitation Unit. The unit had my admission photo and that I was not allowed on their floor.  Oh, this was going to be a long hospital stay!

Bike Ride

 

Things I do not remember.   

I was admitted on a Monday to Jefferson University Hospital due to the amount of Demerol and other drugs I was given I have very little memory of anything pass Wednesday.

  • My sister-in-law and a good friend from college came to visit me. They tell me that I was funny as all hell. So much so that my sister-in-law wrote “Smart *** Brother-in-law” on the board. I have no memory of any conversation that I had with them.

 

  • Due to problems I was having with my Picc line I had a chest X-ray. I have no memory of this.

 

  • At one point the nurses wanted to place me on oxygen and I refused. I have no memory of this.

 

  • During treatment, my wife started asking me questions to see if I was coherent. Question like how old is your daughter? I only remember this conversation as the nurses asking the questions not my wife.

 

The only thing I do remember after Wednesday was receiving my infusions and afterwards walking the halls with my wife.

 

Discharged

After 11 infusions of InterleukinI was discharged from Jefferson. I had gained over 30 pounds of water weight and looked like the Michelin man. My arms and legs looked like tree trunks and my toes were as thick as sausage links. After all the Demerol I was given I was feeling no pain. I asked my wife “Hey, let’s walk to the Reading Terminal and get a bite to eat?” My wife’s reply was “You’ re not walking anywhere - we’re going home!”

So I was sent home and given the drug Lasix. Lasix is a drug makes your body urinate all the water weight you gained during treatment. Once I took the drug in the morning I really could not leave the house. When the Lasix was in full force it would be like do four minutes of house work then go to the bathroom. Four minutes of house work  - bathroom, Four minutes of house work  - bathroom etc, etc… That was my day for the first ten days after discharge.

One of the aftermaths of treatment with IL-2 is peeling skin. You just shed skin like a reptile. Every morning, I would have to change and wash the sheets on the bed. Hell every morning, even my underwear was filled with dead skin. At one point, I literally peeled the skin off the soles of my feet. My wife and daughter referred to me as the Lizard man.   

One other discharge note - because of all the Demerol I was given I suffered through one of the worse headaches and sinus pain that I had ever had. The pain lasted for several days.  

More Heartache.  

For me to receive Interleukin I had to take FLMA (Family Medical Leave Act) time. I was given strict assurances from work that I would receive no phone calls about production problems or questions from the staff. One day, I there was a message on the land line from Serivan a co-worker who I have worked with for over 11 years. Serivan just said that he needed “advice” and to call him back. I was suffering from an awful Demerol withdrawal headache and just blew off message assuming it was about work. A few minutes later Serivan called my cell number. At this point, I am really getting pissed. I was in no mood to discuss work issues and if I could have stuck my hand through the phone and choked Serivan I would have. I answered my cell and just started to chew out Serivan for calling me while I was on FLMA. Serivan’s wife cut into the conversation and told me that Serivan was just diagnosed with Stage 4 Bile Duct cancer. They wanted “advice” from me about cancer treatments and hospitals.

After talking to Serivan’s wife about my experience with cancer I just sat in my chair for forty five minutes in total disbelief.  Later my wife spoke to Serivan’s wife at length about clinical trials and finding a doctor who specializes in this type of cancer.

Serivan’s situation is really grave. It’s especially hard for me due to the fact that when I was diagnosed with Kidney cancer in May 2012 I told everyone in my office to get scanned. There have been many people in my office who have had cancer. Most people in my office are now in their late 40’s and 50’s and we are now at the age when things can go wrong. Many cancers do not become apparent until reaching stage 4 and by then it’s often too late. Our medical system does not want to bear the cost of having everyone scanned. It’s up to you the patient to force this issue upon your doctor. I wished he had listened.        

Back to the Salt Mines.

After a two week break it was back to Jefferson and I was re-admitted on May 27th. During round two I really did not suffer from the rigors and was given very little Demerol. Whereas during round one I suffered from IL-2 side effects this time the treatment was harder on my body. I did make through 10 rounds of IL-2 until my Creatine went over 3.1. My blood work started going off the charts and I had fluid in my lungs that required I receive oxygen. I was then held and extra day for observation. This time I only gain 25 pounds in weight. Overall for round two - 10 infusions is pretty damn good.

Was I Hallucinating?

Jefferson University Hospital has crosswalks between buildings were one can look down on the streets of Philadelphia. During one of many walks around the hospital with my wife we stopped in the middle of the crosswalk to look around. I said to my wife “Look at those really rude people walking on that semi-wet concrete. They are leaving there footprints on the side walk” My wife replied “Honey, I do not SEE any footprints in the side walk”. I replied “Honey, can you not see it? It is a plain as the nose on your face”.  We argued about this for several minutes until my wife actually went down to the street to look for the footprints in question. There were no footprints.

The Food

The doctors and nurses at Jefferson were professional and I have no complaints about my care or treatment. However, the food at Jefferson was the most deplorable food I have ever eaten. Do not get me wrong, I am no foodie or gourmet cook/chief. The food was the worse you could imagine. I got to the point where if I just saw them bring the food in my room I would get the dry heaves and start to throw up. I had no problem eating any of the food from the Philadelphia Reading Terminal or any of the local restaurants.

There was one 22 year old cancer patient who we spoke to who had cancer in his spine. He was stopped by security as he tried to sneak out of the hospital to try to make a run to the local Taco Bell. My wife would have gladly gone to Taco Bell for him but I was soon starting an infusion. There was another cancer patient who was the mother of three small children. She told us that she just forced herself to eat the food because she could not afford to order out constantly.  My ultimate revenge on Jefferson’s Food service would to have Gordon Ramsay inspect their kitchens and film an episode of Kitchen Nightmares.  Yes - their food was really that bad! 

Now We Wait

I was discharged from Jefferson on Monday June 2nd to another two weeks of bathroom runs and peeling skin. I have restarted taking Votrient again. Dr. L says he does not know of any other patients that were first on Votrient and then tried IL-2. My next scans are at the end of August. If I remain stable I will probably remain on Votrient until I have substantial growth in my tumors. If there is shrinkage, I am going for another round on IL-2.  Yea, I get to do this all over again!  Hopefully, when all is said and done it would have been worth it.  In the meantime I am going to enjoy my summer.

 

Final Thoughts

 

The side effects and treatment of IL-2 were not fun but I walked into Jefferson University Hospital and I walked out of Jefferson University Hospital. IL-2 is the only FDA approved treatment that had the potential to provide a long term durable response. I never wanted to look myself in the mirror and say I should have gone for the one treatment that could have cured me.  At the very least, I hope IL-2 will buy me enough time until drugs like Nivolumab and other PD-1 drugs receive FDA approval. If one chooses to go into an IL-2 program one must really keep a very positive attitude. Remember - Give up a month for the chance at a lifetime.  

 

After recuperating from treatment from IL-2 my wife and I needed to get away and do something fun. We went skydiving

 

Sky Dive

 

 

 

rainsandpours's picture
rainsandpours
Posts: 136
Joined: Apr 2013

Thank you for sharing your story!  I think your evident sense of humor helped get you through all that.  I love the skydiving part lol.  Fingers crossed for your Aug scan, and continued recuperation.

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

You know... I (and others) were worried about you..!  It is not like you to dissappear... no jokes for us..!!   Really glad you made it through the IL-2.  Scarey stuff for sure...  Just hope it works for you...

Hang in there..!!!  Oh and welcome back from.. "The Dark Side.."

Ron

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

This Il-2 certainly is a trip, isn't it?  As miserable as it was for me, I'd go back in this afternoon if they said so. Here's hoping that you go back for the rest of the treatments. I wouldn't jump out of a good airplane but when I was able to get back on my Harley, it was a joy. Go get 'em BDS.

cheatinlil's picture
cheatinlil
Posts: 194
Joined: Jun 2014

BDS

You and your wife are my hero's.  You two are very brave.  thanks for sharing. 

APny's picture
APny
Posts: 1956
Joined: Mar 2014

What a great sense of humor in the face of all this. You're terrific! Wishing you the best.

Farmer74's picture
Farmer74
Posts: 9
Joined: Jan 2015

Alot of people in the Panhadle of Texas, don't get the idea of using your immune system to fight cancer. And many of them think my husband had kidney cancer and is now fighting lung cancer and bone cancer instead of RCC. Some of us are slow! And yes, I know I need to be on the other side with caregivers.........but I am slow too!   

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

Thanks for post. I know there have been a couple of similar experiences already documented on here but always good to hear of other  peoples journey.

Only wish HDIL2 was an option in Australia! Who would think that I could want to go through such a challenging treatment?

Hope your next scan is a great one.

Sue

 

thaxter's picture
thaxter
Posts: 124
Joined: Jan 2014

IL-2 was my first line of treatment with a week on week off and week on back in March.  I had similar reactions and during the first week I think I got the rigors with every dose except the first.  Actually kind of looked forward to it because the demerol meant a few good hours of sleep.  UVa hospital food was lousy too--especially breakfast.  We did get a voucher and sent my wife down to the cafeteria to get some marginally better food and they had Ensure in the fridge which I would drink whenever I felt like it.  Didn't get too loopy I guess but my creatinine got as high as 5 during the second week but I still was putting out plenty of urine.  First week I got every other dose or six out of twelve.  Second week they shut it down after three doses so that was pretty boring plus my BP was slightly under 90 and pulse ox was low so I had the oxygen and the automatic BP cuff to deal with for a day or two which kind of kept me chained to the bed.  After release besides fatigue the worst side effect was the itching that went along with the peeling.  Refilled the Atarax (hydroxyzine) scrip three times before I finally stopped having itch attacks in the middle of the night.  After a month I felt pretty good.  I've had two scans 8 and 16 weeks post IL-2 and while there is some growth to my lung mets the largest is still 2 cm.  So because of the reason you said--that IL-2 might keep me around until PD-1 drugs are approved--I am going in again July 28.  That's a long time between treatments but the doc thinks I might tolerate it better because of that.  He also said that if a fourth week is warranted we would probably wait a month after week three ends to go for it again.  That kind of puts me on ice for August and September but I have the luxury of having enough sick leave to last me until December if need be and I will retire at that point with 43 years federal servie.

nyisles's picture
nyisles
Posts: 30
Joined: Mar 2013

As rough and as brutal as IL-2 is, I would not be alive without it.  I had a nearly complete response to IL-2 and it has given me a life back.  Going on vacations, reffing soccer games, coaching soccer, and feeling normal again. After my 4th week of IL-2 in December, 98% of the RCC was gone.  My oncologist said if everything stays the same I will not need any more treatment for the rest of my life.  Now tomorrow is the BIG day for me...it will be my first scan since taking NO treatment.  My last scan in Feb 2014 showed 98% of the stuff was gone due to IL-2 treatment in November/December.  Now with nothing...it will be a huge indicator if I will need to be treated again with something else or it perhaps is "dead" or gone.  I am very nervous about my scans tomorrow afternoon: chest, abdomen, pelvis...the usual round.  The good news is that I feel 100% fine...don't feel sick at all..no pain no nothing but we all know that doesn't mean everything is good inside.  Say a prayer and wish me luck!

Srashedb
Posts: 482
Joined: Dec 2013

sending you good thoughts for your scans; the treatment is so grueling BUT if it works, worth every second.

please post your test results.

Sarah

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Really appreciate hearing your experience. I hope this treatment kicks the **** out of the little terrorists.

Todd

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

I am sad to report that the infusions of Interleukin 2 that I received in May did not work for me. My latest scans showed disease progression and that no further rounds of Interleukin 2 would be required. Doctor Hammers warned me of the possibility “That once I stopped taking Votrient (Panzopanib) I would be taking the brakes off my cancer and there could be progression if IL-2 failed". I took a risk but I have no regrets about my decision.  I am meeting with my oncologist soon and hopefully sometime in September I will be accepted into a Clinical Trail. As of now still taking Votrient – Sorry for not posting more encouraging news but at the end of the day I can say I tried!  

 

Tonight, my wife and I and a college friend are going to see Jimmy Buffet in concert. Tonight, I will enjoy myself and forget my problems.

Life is Good - BDS

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

that your next treatments will be easier. But still, sorry about the news.

Konagal
Posts: 2
Joined: Jan 2015

Thank you so much for your wonderfully insightful post!  I am a caregiver for a 63 year old MCRCC Stage IV checking into Queens Medical Center tomorrow to start Interleukin.  We have to fly to another island for this (several times) and I am enlightened by your posts.  I am going to have Sandy (the patient) read your post as soon as he awakens!  Thanks again good luck to Sandy Contessa and prayers to him starting tomorrow.....Aloha from the Big Island

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

From reading the tales of IL2 from yourself and Mr Fox it has become clear to me that symptoms I had put down to secondary infections (pnuemonia, pleurisy, colitis) were just part of the glorious IL2 trip.

I had 2 sessions at University of Maryland Baltimore, then the doctor decreed no more.

Which makes me wonder, with IL2 available in Baltimore, why did they send you so far?

Finally, did you go back for more? And, generally, hows it hanging now?

 

I'd also say, IL2 aint a bundle of laughs. I think it sounds worse when described than when endured, and I'm sure you'll all agree that its worth it!

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

Footstomper - I live in the Philadelphia area traveling to John's Hopkins would have been a hardship, so I decided on Jefferson University Hospital. Because there was progression of disease no more treatments of IL-2 could be ordered. I am currently in a PD-1 Clinical Trail at the Hospital at the University of Pennsylvania (HUP) (ClinicialTrials.Gov – NCT02178722). Read my post "I am now a Offically a Lab Rat " - BDS

Konagal
Posts: 2
Joined: Jan 2015

We arrived at Queen's to find the floor where they infuse the IL2 to be "contained" as the flu has been going around.  Had bloodwork, an exray and am awaiting an MRI, CT, Bone and Brain scan and it is already after six at night.  Thank God someone remembered that I am not starting until tomorrow and took me off the "do not eat" order.  Can't wait to start tomorrow.....NOT

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Good luck mate. I think it might sound worse than it is. Dont sweat it: one dose at a time.

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