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Time to decide

Posts: 100
Joined: Jun 2013

First of all I would like to thank all of the regular participants of this site for their time and efforts in educating us newbies to the trials and tribulations of your battles. Your posts have been inpirational, educational, sincere and humourous at times.
My small town (very thourough and well versed in the world of mrcc) oncologist has suggested sutent for multiple bilateral small nodules thatnwere found tobe clear cell carcinoma. MD ANderson rcc specialist agrees that this is an option but has informed me that their review board of MD'S agree that I am a prime candidate for HD IL-2.
I will consult further with them tomorrow and will be faced with the decision of a lifetime, yet the decision seems simple. Even though the success rates are low, I feel that I owe it to my young children, wife, family andmyself.. if nothing else iit may advance reasearch?..
I am praying that I might make the right decision and as many have stated before me, I am not overly worried about the ultimate outcomes. I can try Sutent or other treatment when that tme comes.
I apologize for rambling on. Thanks again for allof your efforts to assist this merry band of patients and caregivers on our journey to a cure!


Darron's picture
Posts: 310
Joined: Jun 2013

I may be uninformed on this, but to my knowledge, the only tote natural cure that isn't a trial at this point is IL-2. I was faced with a 3 cm tumor in my remaining adrenal gland and my options were IL-2 or Nivolumab-Sutent trial.

My oncologist said he would not have recommended Sutent by itself because it is not a cure, it only delays the spread and growth. If you don't have access to a trial in your area, IL-2 although tough, is a shot at a durable response. Sounds like you are young, hopefully healthy and can handle more doses.

tjere are others on the site with more knowledge than I have, but I wanted to chime in and wish you the best of luck.

Galrim's picture
Posts: 305
Joined: Apr 2013

If they deem youre a prime candidate for this you shouldnt hesitate. Immunotherapy is the only treatment that holds a chance of long time response, odds for that are low, but they are there.

Plus, and this is equally important, partial response can in some cases also lead to a state where surgical resection of remaining mets is possible, which also holds a chance of long time response.


garym's picture
Posts: 1651
Joined: Nov 2009

And even if the IL-2 isn't effective at first, there is a growing belief that subsequent therapies such as Sutent and Votrient receive a boost from the earlier IL-2 treatment.

alice124's picture
Posts: 898
Joined: Mar 2012

John (my husband, aka “one putt”) was given the same options after a right kidney nephrectomy on November 1, 2011, and the  diagnosis of Stage 4/grade 4 RCC with multiple nodules in lungs, etc.

I agree with what you’ve been told so far in previous posts. HDIL-2 is the only drug out there that can potentially cure you, though the percentages are small.  John too faced your dilemma and he chose the IL-2. It’s a tough treatment, but I don’t think you’ll ever stop second-guessing yourself if you do not go for it. You owe it to YOU and your family.

After two rounds of 25 doses, John’s response was labeled “mixed”  but it did not warrant continuation of the IL-2. He then went on to the Nivolumab/Votrient trial which he is still on today. At this posting,  he continues to do very well in trial and he believes the latent benefit of the IL-2 has contributed to his success. He has never regretted giving IL-2 a shot!  

Wishing you success in whatever decision you make. We’re here if you have questions or simply need to vent.   

foxhd's picture
Posts: 3183
Joined: Oct 2011

Let it be known or be a reminder that I was begging to find someplace in my area that provided IL-2. Once I found it, the MDX trial offer superceeded the IL-2 as a first line of care. Now if results of my tests are as expected, I set a date to start Il-2 this friday. But if you can find a MDX-1106/nivolumab trial, consider it. I came soooo close to it being my cure. And it was so easy. Virtually no side effects. Make a good choice.

angec's picture
Posts: 924
Joined: Mar 2012

Fox, did you say were starting IL-2?  Did you start yet? Please keep us posted and I hope all goes very well! Love you and keep on keeping on!  xxoo

Posts: 100
Joined: Jun 2013

Fox, I know you will take it head on and i wish you the best! Please keep us posted when you can. I am hoping to be a week behind you.

Posts: 100
Joined: Jun 2013

Thanks everyone, I knew I could count on you all to give honest, tranparent and educated advice, priceless! We meet Friday to consult with the IL 2 folks and if my scans from today allow, I plan to pursue this option asap. Fox, I will be sure to ask about the trial option you refer and will certainly explore that option if available. I truly feel like we are all in this together and, in a strange way, look forward to participating in this forum for us and those to come.

On a completely different subject:
I once had a boss that often quoted " If you want to know what impression you will leave on this earth when you are gone, place your hand in a bucket of water and then pull it out".

Never think that just because someone is smart , they are also wise. My old boss never motivated anyone. The ripple effect you all have produced on this site will travel far outside the confines of a bucket of water. Thank you all!


MDCinSC's picture
Posts: 574
Joined: Feb 2013


Best of luck in what youare unedertaking! 

I look here at the immediate response from caring, knowledgable people and it speaks volumes to the good that comes out of this site!

Again, on this topic I am out of my league and can't venture an opinion, but I'm here, doing what I do best, cheering for those who are tooth and nail in the fray.

Blessings and best wishes!


Posts: 100
Joined: Jun 2013

Good news, no furher mets in the lungs. July 22nd I will have liver and heart tests conducted and expect no issues. Then its on to prep an IV port then on to admissions for my 1st week of HD IL 2.
Next week will be applying for STD of 13 weeks that will get me to the point of knowing if we will continue or not based on results. Hopefully I will then have to utilize medical leave because it is working. If not, we can consider next steps such as sutent. Seems so surreal to be moving so fast, leaving work, being admitted to an ICU setting and talking about playing golf tomorrow at the same time. I feel so healthy and for this I am thankful as the disease was detected in its early stage of metastasis. This gives us the ability to endure the process better.
My future son in law gave me a Samsung tablet for fathers day so I will be able to stay connected along the way and i am thankful. My daughter is getting married the last week of September and i should be well rested to walk her down the isle then get a CT to determind next steps.
Thanks for listening, i will keep all posted. Keep the faith and best wishes for all of you.

foxhd's picture
Posts: 3183
Joined: Oct 2011

I may be going in monday. I'll find out then. Depends on bed availability. Good news is my pretests went well. Youn never know about this brain!

Texas_wedge's picture
Posts: 2799
Joined: Nov 2011

Dynamite - you sure don't hang around!  Hoping to hear tomorrow that it's all green lights - so far, so good, with the pre-tests (predictably) going well.

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