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IL-2 or no IL-2....that is the question I need some advice on

nyisles's picture
nyisles
Posts: 27
Joined: Mar 2013

Here is a quick recap on my past before I get to the IL-2 question:

3/20/13 - diagnosed with met RCC

4/5/13 - Left kidney removed - Left soft tissue abdominal wall mass removed

4/30/13 - 2 nodules on left lung removed - 2 spots on the inside chest wall removed (where the kidney was)

Remaining - 1 "speck of dust" on the outside of my right lung (rest of the body is clear)

Kidney Tumor Pathology - 7cm; Clear cell; Grade 4; 5% sacromatoid; Adrenal glad negative for tumor; Negative for invasive carcinoma; pT3a

 

Now here is my current problem after 3 oncologist visits:

ONCO #1 (non-IL-2 hospital) - does not suggest any treatment at that hospital. put me in an intermediate category for recurrence. suggested I talk to an IL-2 doctor in order to discuss IL-2 treatment in order to "exterminate" the blood of any cancer microbes floating around in order to prevent the RCC from returning.

ONCO #2 (IL-2 hospital #1) - does not suggest any high dose IL-2 treatment at this point.  said that it is too early to tell if the disease will even return and does not want to blast my body with toxic IL-2 if not needed. said there is no proof that IL-2 works to "prevent" recurrence since the body may be done with the cancer after surgery. even if he was going to put me on IL-2 he would want me to wait 2 more months to fully recover from my last surgery on 4/30/13. told me to relax, recover and enjoy my summer and they will do scans in August to see how things are going.  said if it does come back he would put me on IL-2. If it does not come back he told me to look into having that "speck of dust" removed surgically.

ONCO #3 (IL-2 hospital #2) - wants me to start high dose IL-2 three (3) weeks from yesterday. he says that I have a high possibility of it coming back in my lifetime and undergoing high dose IL-2 is a way to try and make sure it does not return. since I have the "speck" on my right lung, he said they can see if the IL-2 is working by watching this "speck".  wants to run the full cycle of IL-2 treatment to try and "exterminate" the blood and keep it from returning. he said if I wait for it to come back it is already too late. the point of IL-2 when I'm 99% cancer free is to try and extinguish any microscopic RCC cells floating around so they don't stick somewhere and cause trouble.

So out of the 2 IL-2 hospitals I received two different opinions.  ONCO #1 and ONCO #3 know each other, so I knew their opinions would be similar.  In fact, ONCO #1 called ONCO #3 and got me an appointment with him.  I am now more confused than ever.  Do I go for the treatment right away or do I wait to see if the cancer is done? Please help, I really need as many of your opinioins as possible because many of you are further along the road than I am (I'm a newbie only joining the club in March).  What would YOU do in my position?

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

I vote for number 2.. Others here I am sure will soon comment, but for now you have nothing to treat... read some of the other posts recently, they may help you..

Good Luck.!

Ron

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

First of all, I would go with onc #2 without hesitation. What he suggests is really the proven standard approach of treatment/monitoring post-op.

Secondarily, some of the things you quote from onc #3 sounds like rubbish. To begin with, IL-2 as adjuvant treatment? Never came across that before or heard anyone refer to it. Additionally, adjuvant treatment in general for RCC shows very flaky and indecisive results and is for that reason almost never implemented.

And last, his whole "if it comes back it will be too late, so better start IL-2 now" argumentation is, pardon my french, utter bs.

I wouid consult onc #2 again and refer the advice you got from onc #3 and then watch his reaction. Im pretty sure he will raise an eyebrow to say the least...

Good luck and take care.

/G

 

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

My husband's (one putt) initial diagnosis was very much like yours. A main difference is they did not remove the lung nodules; the treatment following the nephrectomy was IL-2 in hopes of eradicating the cancer in the lungs/shoulder/ pelvic area. It didn't work, though there is thought that undergoing the IL-2 promoted his success in the Nivolumab/Votrient trial he's been in for over a year.  

If I read your summary correctly, they are suggesting IL-2 for inactive Cancer, and I don't know I've ever heard of that. Considering the severity of IL-2, i personally think I would monitor the "speck of dust" through CT/MRI images before considering IL-2.

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

I just completed two rounds of IL2 and will have a scan in June to see if it worked for me. I would listen to Dr.#2. IL2 is not easy treatment and you've just had 2 surgeries. I think you need time to recover from those surgeries plus it doesn't sound like you have active disease. I'd monitor that speck of dust closely with CT scans and look for any further recurrence.

--David

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

First and foremost, Ajuvant theropy has not been proven effective for RCC.  In fact, the targeted theropies show ajduvant treatment to possibly be worse than nothing.

Second, The risk of IL-2 is real.  Going to HD-IL2 would be akin to having your other kidney removed and replaced because the cancer might spread. 

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

I'm not ready to renege on my previous thoughts regarding IL-2 but find it interesting that I just heard that IL-2 is being considered in another patient, currently NED. I'm wondering if some new research has become available that actually supports this. Just trying to keep an open mind while I google ISO?

AprilandChuck's picture
AprilandChuck
Posts: 104
Joined: Feb 2013

Even though HD IL2 did not work for my husband.. I am a believer it works for some... I have not really heard of it being used as Adjunct treatment.. because it's toxic and the side affects can be severe...Did any of your doctors say you would be undergoing this as part of a new trial( I have not read of one.. but that does not mean anything...there is to much going on out there to catch everything) if your remaining issue is a speck.. giving it a little time to see if it grows and how fast.. seems like the best Idea... Just a suggestion... how closely are they monitoring the speck?

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