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Joe. I am sure that this has all come as a shock to you.  But hang in there.

How large was your primary tumor?  What was its histology (i.e. clear cell; papillary; chromophobe; etc.)?

Is your oncologist experienced with metastatic renal cancer?  I ask because Everolimus is not usually suggested first line therapy.  I would have thought he might first want you to try Votrient or Sutent instead.

Have you considered getting a second opinion?

Best wishes,

-Neil

My story is similar. I was stage 4 after my Sept 2013 nephrectomy since they found a secondary tumor on my adrenal gland. January 2014 they found several lung mets. Since I was relatively healthy at age 64 I was a good candidate for IL-2 which I underwent last Spring and Summer but this Fall more growth was discovered so I am now on Votrient. It sounds like you are healthy enough for IL-2 which gives long term durable response about ten percent of the time and partial response about 20 percent. Not every hospital does this treatment but even though I was not one of the lucky ones I am glad I took a shot. Don't know much about Everolimus but Votrient and Sutent are no picnic. I am glad to have been able to work part time in Nov-Dec and to have retired last week

Joe, I don't have any advice on the drug therapy, but your story is very moving.  You have had a lot of good and bad things happen to you in the space of one year.  I tend to always think on the bright side, and I look at your situation this way-- your body is in outstanding condition, and this should help you weather what you have ahead of you.  That may be a small consolation, but keep your mental and physical energy up.  I am sure you heard about the passing of Stuart Scott this week--one thing that was very admirable and motivational about his situation is he never stopped living his life to the fullest, and he kept going with positive thoughts and exercise.

My sitation pales in comparison to yours.  I was diagnosed in April with a small tumor that was removed in July, which was found to be stage 1 with no margins.  Lucky me-for now. Coincidentally, I lost a good friend last year to esophogeal cancer at the age of 43.  He had been diagnosed 3 years earlier with only 2-4 months to live, and he put up a valiant fight and lived life to the end.  2014 was a strange year with my diagnosis, my friend's passing and my business office being destroyed by a huge fire in our building.  At 47, I had been living a charmed life, with not so much as a ripple, and I hit choppy waters.  Hopefully, your drug therapy is successful and you will be able to help others on here for many more years.  Good luck.

Joe C said:

Thank you very much for

Thank you very much for sharing your experience and kind thoughts of motivation.  I would say there is no better situation because, as your name states, it is mental.  Having the right frame of mind can make you a depressed/unhappy stage 1 or a vivacious/outgoing stage 4.  Everyone has had a year they've looked back at and said, "where did it go?"  Some people have had decades like that.  If you can make every day seem like a memorable year, an additional 6 months, 1 year, 5 years can satisfy a lifetime of happiness.  Keep your chin at 90degrees as you have been doing and your life will remain as charmed as it always has been.  Maybe even more so.  Take care!

Keeping you and your family in my thoughts and prayers. As others have said, the fact that you’re young, fit and in good physical shape will definitely be a huge asset in your treatment and recovery. Sloan Kettering a wonderful hospital with a great staff. That is where I had my surgery. If you can opt to be treated there that would be great. I can’t say enough good things about it. Wishing you the very best.

Joe C said:

Thank you very much for

Thank you very much for sharing your experience and kind thoughts of motivation.  I would say there is no better situation because, as your name states, it is mental.  Having the right frame of mind can make you a depressed/unhappy stage 1 or a vivacious/outgoing stage 4.  Everyone has had a year they've looked back at and said, "where did it go?"  Some people have had decades like that.  If you can make every day seem like a memorable year, an additional 6 months, 1 year, 5 years can satisfy a lifetime of happiness.  Keep your chin at 90degrees as you have been doing and your life will remain as charmed as it always has been.  Maybe even more so.  Take care!

glad you are getting a 2nd opinion.

I have been stage 4 since October 2012 and completely understand how you feel. I am 45 with two kids. IL-2, Sutent, votrient, and many triala are out there that are much better options. Read my bio. 2nd opinions are great and there are many drug options oit there.

Durable response means you shrank your tumor and don't have to take medication anymore for the tumor to stay that size. often, IL-2 is termed a partial response because the tumors don't disappear, but they don't grow. So that would be a partial, yet durable response. A complete durable response means you are in remission. Another term you will hear is NED or "No Evidence of (radiological) Disease. This meana you can't see the tumor on a scan. These are both the terms you want to hear! 

As you read up on trials an effectiveness of medications you will hear those terms a lot.

Your fight is just starting, focus on the battle, not what you think will be the end if the battle. 

I am currently NED, but not comfortable that the response is durable, so I continue treatment. I too was frustrated with the thought of being on meds "forever", but once you have lived normally on meds, you realize it is OK. I may go off drugs and be fine, but no yet..

Good luck and keep us posted.

Nothing else to really add here.  Hopefully you get a good plan moving forward that you are comfortable with.

I was diagnosed early at age 40.  I was a division 1 collegiate lacrosse player and in great shape.  Makes absolutely no sense.