I'm Back...Member for Life

Joe C
Joe C Member Posts: 37

Hi Everyone,

I haven't been on the boards in a while (shame on me).  It's been a tumultuous year.  Diagnosed in Nov 2013 with RCC in left kidney, I had a left kidney nefrectomy in Dec 2013 with 10 surrounding nodes removed.  CT/MRI every 3 months since.  My wife's father sadly passed of esophogeal cancer August 17, 2014.  We then had our first baby, Alexander, Oct 2nd.  Just two days shy of our first wedding anniversary.  Over the summer of 2014 some micronodules were discovered in the regular CT/MRI.  We tracked it over the next three months and continued to see growth, very small, but growth.  The largest of the micronodules hit 15mm.  We did a lung biopsy last week, suffered a lung collapse, and just had our biopsy results provided to us yesterday.

It is confirmed the grade 4 cancer has spread to the lungs.  My oncologist is in Northwestern Memorial Hospital in Chicago.  She will have me on Everolimus and says I will be on it indefinitely.  That last word struck me down like a hammer.  I'm 36, previously healthy, 205lbs <10% body fat, 5'11".  I eat organic and knowledgeable about nutrition.  Heart rate low from running distances and an avid weightlifter.  I guess what I'm saying is, my family was dumbstruck with the series of events which has led me now to be held to "indefinite" use of chemotherapy.  

That's my backstory and I am currently pretty raw.  Dealing with perceptions of how long I have to live, what will happen to my family, what will treatment feel like.  My doctor says I should feel 85% like myself on Everolimus but we will take it one step at a time.  I am curious what others have heard as to the drug of choice recommended for someone in my similar condition.  Some of you have said you have a 'wonder drug' of choice and I was curious what that might be as we look to source second opinions.

Thank you for your time and consideration.

Best,

Joe

«13

Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    Thoughts

    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

  • jason.2835
    jason.2835 Member Posts: 337 Member
    Just nonsense, isn't it

    Joe,

    There's just no easy way to look at it.  It's nonsense.  I'm 35 myself and while I certainly haven't always lived like my body was a temple, I also haven't been more than 20-25 lbs overweight at any point.  Relatively active, healthy and normal 35 year old and suddenly Xxx BAM xxX your whole world is turned upside down.

    In my case, my tumor was caught early, was only 2.8 cm and grade 2 so I am in a perpetual holding pattern which I hope to be in for 50 years.  I don't have a ton of advice when it comes to the drugs.  However, in second opinions and such, I have a VERY strong opinion that you should talk to doctors until YOU and your family feel comfortable about the course of action beng presented.  Your lung collapsed after the biopsy?  That would likely set you off of surgery as an option but has it been presented/or is it an option in your case at all?  I guess that as it has already metastasized the main thing is destroying as many cells both in the nodules and the bloodstream as possible.  

    Hang in there, man.  Remember that kidney cancer research has come a LONG way in just 10 years; imagine what will be out there in 5 years.  More technology, more options.  Keep fighting and a final answer may come along for all of us.

    Best wishes. 

  • thaxter
    thaxter Member Posts: 124
    My story is similar. I was

    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

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Hey Joe....so sorry that you

    Hey Joe....so sorry that you had reason to come back here. Not nice news for you at this time in your life. I can't offer much information, but I wanted to let you know that I am thinking about you and hoping you find the right medication to help you.

    Hugs

    Jojo

  • Joe C
    Joe C Member Posts: 37

    Thoughts

    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

    Thoughts

    Hi Neil,

    The surgeons removed the left kidney with sizeable 10.4cm growth and 10 lymph nodes via open radical nephrectomy on December 4, 2013. The cancer cells were clear cell deemed grade 4, stage 2B (T2,N0), encapsulated in the kidney.

    We are unsure if our oncologist is experienced in metastic renal cancer.  She wanted to be aggressive and changed the assignment from Sutent to Everolimus given a stain test on the biopsy from the lungs.  We are looking at getting a second opinion and tomorrow will call Memorial Sloan Kettering in NY for a consultation.

    You've got us thinking about our current prescription, which we appreciate.  Thank you.

    Joe

  • Joe C
    Joe C Member Posts: 37

    Just nonsense, isn't it

    Joe,

    There's just no easy way to look at it.  It's nonsense.  I'm 35 myself and while I certainly haven't always lived like my body was a temple, I also haven't been more than 20-25 lbs overweight at any point.  Relatively active, healthy and normal 35 year old and suddenly Xxx BAM xxX your whole world is turned upside down.

    In my case, my tumor was caught early, was only 2.8 cm and grade 2 so I am in a perpetual holding pattern which I hope to be in for 50 years.  I don't have a ton of advice when it comes to the drugs.  However, in second opinions and such, I have a VERY strong opinion that you should talk to doctors until YOU and your family feel comfortable about the course of action beng presented.  Your lung collapsed after the biopsy?  That would likely set you off of surgery as an option but has it been presented/or is it an option in your case at all?  I guess that as it has already metastasized the main thing is destroying as many cells both in the nodules and the bloodstream as possible.  

    Hang in there, man.  Remember that kidney cancer research has come a LONG way in just 10 years; imagine what will be out there in 5 years.  More technology, more options.  Keep fighting and a final answer may come along for all of us.

    Best wishes. 

    Thanks Jason.  Really

    Thanks Jason.  Really appreciate the motivating words.  Our first 24 hours since diagnosis were the worst.  We're far more forward thinking now and things are in motion.  Really behind the second opinion thing, especially after being asked if my oncologist specialized in metastic renal cell.  We had no idea that was even a thing to specialize in!  Really opened our eyes early to be assertive in how our treatment goes.  Thank you all!

    Joe

  • Joe C
    Joe C Member Posts: 37
    thaxter said:

    My story is similar. I was

    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

    Hi Thaxter,
    I will take that

    Hi Thaxter,

    I will take that IL-2 into conversation with our oncologist and second opinion.  Thank you. I'm not familar with the "long term durable response" measures but will educate myself further.

  • Joe C
    Joe C Member Posts: 37
    Jojo61 said:

    Hey Joe....so sorry that you

    Hey Joe....so sorry that you had reason to come back here. Not nice news for you at this time in your life. I can't offer much information, but I wanted to let you know that I am thinking about you and hoping you find the right medication to help you.

    Hugs

    Jojo

    Thanks Jojo!  Appreciate the

    Thanks Jojo!  Appreciate the welcome and thoughts.  Hope you are well.

    Joe

  • Joe, I don't have any advice

    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
    Joe C Member Posts: 37

    Joe, I don't have any advice

    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.

    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!

  • Joe C
    Joe C Member Posts: 37

    Thoughts

    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

    Thoughts

    Neil,

    Thanks again for the recommendation to look for an oncologist with metastic renal cancer experience as well as the need for second opinions.  I have scheduled an appointment next week at Memorial Sloane Kettering with a doctor with that exact specialty.  Getting all of my results mailed to them immediately for the consultation.  We feel much better getting another informed opinion.  Thanks for that direction.

    Joe

  • NanoSecond
    NanoSecond Member Posts: 653
    Joe C said:

    Thoughts

    Neil,

    Thanks again for the recommendation to look for an oncologist with metastic renal cancer experience as well as the need for second opinions.  I have scheduled an appointment next week at Memorial Sloane Kettering with a doctor with that exact specialty.  Getting all of my results mailed to them immediately for the consultation.  We feel much better getting another informed opinion.  Thanks for that direction.

    Joe

    2nd opinion

    You are most welcome, Joe.

    Ironically, I too went to Memorial Sloane Kettering for a second opinion several years ago.  I met with Dr. Voss.  He was extremely competent and helpful at the time.

    Best wishes,

     

    -Neil

  • APny
    APny Member Posts: 1,995 Member
    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

    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.

  • APny said:

    Keeping you and your family

    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.

    I second what APny said about

    I second what APny said about Sloan Kettering.  The first urologist who looked at my scans said I would likely have to get a radical nephrectomy.  From the moment I called to get my appointment at Sloan Kettering on May 1 today, they have been nothing but a first class organization to work with.  Caring, competent, and compassionate.    One thing I should add is that be careful about taking too much of what you read on the internet as correct.  I remember a day or two before my surgery reading people's accounts of the problems they had after their surgeries, and I was in tears and fearful.  My experience with the surgery was very positive and relatively easy, but I consider myself lucky. Hoping it works out for the best for you.

  • Joe C
    Joe C Member Posts: 37

    2nd opinion

    You are most welcome, Joe.

    Ironically, I too went to Memorial Sloane Kettering for a second opinion several years ago.  I met with Dr. Voss.  He was extremely competent and helpful at the time.

    Best wishes,

     

    -Neil

    That is wonderful to hear!

    That is wonderful to hear!  We meet with Dr Voss on Friday.  My wife will be so pleased to hear a review like this.  Thank you.

  • foroughsh
    foroughsh Member Posts: 779
    Hi, my story seems very

    Hi, my story seems very similar to yours. My tumor was 10 cm,clear cell and confined to kidney, i was 35 at the time of diagnosis. We got it five months ago so I really don't know what future holds for me!! I don't know about the drugs but I just wanted to tell you, you and your family are in my thoughts and prayers.

  • Darron
    Darron Member Posts: 310
    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!

    Joe

    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.

  • Boleyn-Fitz
    Boleyn-Fitz Member Posts: 12
    My only suggestion would be

    My only suggestion would be to get a genetic test. When kidney cancer happens early and to someone who is otherwise healthy, I would be suspicious of a genetic cause. Since you also had a lung collapse, I would be suspicious of Birt-Hogg-Dube syndrom, since it causes both. It caused my kidney cancer and has given my brother several lung collapses. The good news is that if it is BHD, affinator/everollimus is the drug that you should start off with.

  • myoung790
    myoung790 Member Posts: 75
    Nothing else to really add

    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.  

  • mrou50
    mrou50 Member Posts: 389
    Similar

    Joe sorry to hear about your situation it sounds like you and your wife are attacking this with careful thought, good for you.  I am facing something similar I went from one nodule to six in three months, my oncologist is having a biopsy ordered next week but he and his partners are very sure that it is Metatastic.  He did tell me that I am an excellent candidate for IL-2 and he had me research it with my wife.  He did say I would not be able to teach anymore the rest of this year if I do it now, however he said I could do the Votrient or Sutent and still teach, teaching means a great deal to me and I don't want to upset my students. By summer time I would begin the IL-2 treatment which he said is very intense.  Regardless of what you do stay strong and positive and stay in touch, we can compare notes as we go through this.

     

    Mark