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IL 2

kmody044
Posts: 1
Joined: Nov 2014

My husband and I are meeting with the doctor on Thursday to see if he is a can move forward with IL 2. He was cancer free for almost 4 years when he went into the ER for back pain. The kidney cancer had moved to his spine, rib and lung. They removed as much in the spine as they could and stablized the area. We are now trying to figure out the best plan of action. I would greatly appreciate any thoughts or opinions. Espcially on IL2 and other treatments. Thanks!

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

Take the time to look back and read about my journey with MDX-1106 and Il-2. Much more efficient than repeating it again. Good luck.

alice124's picture
alice124
Posts: 898
Joined: Mar 2012

 

Hope you and your husband get the proper guidance from your doctor to make the right decision on Thursday.  IL2 treatment is  tough.  But because it offers a chance of full remission, it is an option many kidney cancer patients (including my  husband, oneputt) cannot refuse, though that remisson/partial response rate is under 20%.  

It is administered in a high-dose regimen which involves receiving the drug intravenously (into a vein) every eight hours, as tolerated, for up to 14/15 doses (or up to five days). After the five days of treatment,   the patient is usually sent home and  given 10 days to recover before returning to start over again.  After the second round of treatment, there is a waiting period of about two months before a scan is taken to reveal what progress/ lack of progress has been made. The scan results will help your doctor determine whether additional treatment is warranted.

There are significant side effects with this regimen—e.g., rigors, nausea, diarrhea, changes in mental status, liver and heart problems, and many more. Patients do not experience all of the potential side effects but because of the severity of the treatment/side effects, it is usually administered and treated in  an intensive care hospital setting. (Here’s a link that offers more info: http://chemocare.com/chemotherapy/drug-info/il-2.aspx).

Several people here have written blogs of their experiences while receiving IL2. You can search their specifics. I know Fox and thaxter have and I believe Phoenix Rising before that.

Good luck to you both and keep us posted.

 

 

 

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Hi Alice.  Just a clarification.  Only about 7% of clear-cell patients will get CR (Complete Response - i.e. long-term remission with no need for further drug therapy) - which to me is the major justification for undergoing this difficult therapy.  A PR (Partial Response) doesn't produce that result - although there are some anecdotal reports that those who have failed HD IL2 seem to feel that they get better results in their next therapies.  So far though, there is no scientific proof of that happening.

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

what my numbers are. Stable after 12 months. No tumor growth since finishing Il-2 a year ago. Who wouldn't give it a shot if given a chance?

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Well Fox, if you go 36 months (24 months more), you will be considered one of the complete responders.  No surprise there as you have been a unique patient from the start.

I am chromophobe and HD IL-2 does not work for most non-clear cell patients.  That is why I did not go for it.

But I am about to start on Keytruda (Pembrolizumab) which has the same efficacy profile as Nivolumab which initially worked so well for you.  There is no telling how it will work for me though, because there is no data on non-clear patients (yet).

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Kick some butt on Keytruda!!! Very happy for you. Love it!

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Interestingly, although both my onoclogist and I were prepared for a big fight, my insurance company approved coverage of the cost of the drug in less than one week.  So when I received notice of their verdict I was stunned.

Although I am feeling great - and even though my most recent CT-scan (Oct. 30th) showed no progression and no new mets - my LDH (Lactate Dehydrogenase) enzyme showed a reversal from dropping to starting to climb again.  In my case this meant that Afinitor, which has literally saved my life, is either failing or about to fail.  We did not want to wait to find out which...

Hopefully I will start on my first infusion Thursday or Friday.

KeepCalmAnd's picture
KeepCalmAnd
Posts: 8
Joined: Nov 2014

Nano, were you successful in starting Keytruda last week?  

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Yes.  I started last Thursday.  Infusions every 3 weeks.  I still take Avastin as well.

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I work with the daughter of one of the first patients to ever receive IL2 when it was still experimental. Her dad was one of the lucky ones that obtained a complete remission from his Stage 4 metastatic disease and outived his cancer ever coming back (10 plus years from what I understand). Unfortunately, they can't tell who these individuals are that will respond so you get as much information as you can and roll the dice, so to speak. 

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