Interleukin, not so scary

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Interleukin, not so scary

by jjcksullivan on Fri Feb 24, 2012 02:51 PM

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My husband is currently 20 months cancer free (clear cell).  He is currently missing his Left kidney (radical), spleen and partial nephrectomy.  He was 39 at time of diagnosis.  We were given a poor prognosis because he had 3 new tumors within 3 months after the first surgery.  We were sent to see Dr. Nair at Lehigh Valley Med Cntr. PA.  and given interleukin therapy.  This therapy is now kinder and gentler, second generation, than all of the information you find on the computer.  You are no longer in ICU.  As long as you have good heart/lung function you should be a candidate.  To date this is really one of the only treatments and is also used on melanoma patients (to find more info) Don"t exclude this treatment.  Most oncologists are misinformed about Interleukin because there information is also old and don't offer this therapy to their patients. Educate yourselves.  I am a nurse and now know way too much about RCC.  Please ask me questions and I would be glad to go into detail about my husbands 6 intermittent months of treatment.  The good thing about interleukin is your side effects stay at the hospital.  You don't come home sick.  Remember traditional chemotherapy and radiation does not work on RCC. 

RE: Interleukin, not so scary

by shotqueen1 on Sat Feb 25, 2012 12:35 AM

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Great news for your husband. I am also glad to read this because I start my IL-2 treatment on Monday. I was diagnosed November last year  (at 38 yrs old) with stage IV RCC. Had my left kidney removed on 12/9. Was supposed to start IL-2 last month but then they found a small tumor on my brain so I had to have radiation 1st to take care of that. Anyway, I've been doing some reading on-line (which my husband tells me to Stop doing!), and it makes this sound scary. I wasn't nervous at all about the surgery but this had me concerned. But I figure if it works, I ain't gonna complain! Anyway, congrats again to your husband & best of luck! I am very encouraged :)

RE: Interleukin, not so scary

by MarcyS on Sat Feb 25, 2012 05:55 PM

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Seattle Cancer Care Alliance will not consider doing IL-2 except in ICU.  My husband had 2-2 week courses of it last year and I am very glad he was in ICU.  He got marvelous care.

He is now in remission and I am thanking God for the IL-2!

 

RE: Interleukin, not so scary

by myboys2 on Sat Feb 25, 2012 07:07 PM

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I have a question about our new diagnosis.  We were unclassified and have not been classified as muchinous tubular spindle w <10% sarcoma transformation thta stayed local to the primary.  Until yesterday we had planned to do IL2 because also uniquely we have bone mets of the skull.  So, have not had detailed discussion with our doc of this new classification, but was wondering if you have heard of this variant and would IL2 still be something we should consider??  He is currently on Sutent, has had not new evidence of disease since diagnosis, lft kidney out, brain lung lymph all clear, 2 tiny liver mets left out of 3. 

RE: Interleukin, not so scary

by RugbyRob on Thu Apr 05, 2012 11:20 PM

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On Feb 24, 2012 2:51 PM jjcksullivan wrote:

My husband is currently 20 months cancer free (clear cell).  He is currently missing his Left kidney (radical), spleen and partial nephrectomy.  He was 39 at time of diagnosis.  We were given a poor prognosis because he had 3 new tumors within 3 months after the first surgery.  We were sent to see Dr. Nair at Lehigh Valley Med Cntr. PA.  and given interleukin therapy.  This therapy is now kinder and gentler, second generation, than all of the information you find on the computer.  You are no longer in ICU.  As long as you have good heart/lung function you should be a candidate.  To date this is really one of the only treatments and is also used on melanoma patients (to find more info) Don"t exclude this treatment.  Most oncologists are misinformed about Interleukin because there information is also old and don't offer this therapy to their patients. Educate yourselves.  I am a nurse and now know way too much about RCC.  Please ask me questions and I would be glad to go into detail about my husbands 6 intermittent months of treatment.  The good thing about interleukin is your side effects stay at the hospital.  You don't come home sick.  Remember traditional chemotherapy and radiation does not work on RCC. 

That is awesome, I hope your husband remains one of the small % of complete responders.

I'm not aware of the New and Improved version of IL2.  I had my treatment 4 years ago.  At that time there were two options.  Full Rate in ICU or Half Rate in hospital setting. At that time there were no studies showing the reduced rate had any efficacy at all.  (is there new data?)  I did my  tour of duty 150 miles away in University of Washington hospital.

I realize everyone has unique experiences with all these novel agents, but I do not believe I would be here to type this if I was not in an Intensive Care setting

Round 1 on infusion 13, 2AM I crashed hard.  BP dropped

Precipitously and respiration was off the chart.  I remember focusing on the picture of my wife and young boys...daring not to blink believing it might be the last thing I did.  I had a team of MD's & RN's working with me for 2 hours before I Stabilized

I sincerely hope they have reduced the risk of IL2, it remains the only chance of CURE for RCC.  I hope your husband is one of the few and the fortunate.

Pura Vida

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