Anyone have RCC reappear in lungs?

TLAlways
TLAlways Member Posts: 15
edited March 2015 in Kidney Cancer #1

Hi ... my husband of 25 years is now 49 and had a 10cm tumor (stage III) along with his left kidney removed 3 years ago.  He then took part in a clinical trial where he took 2 pills a day for 12 months.  The study based out of Loyola Hospital in Chicago will never tell if he was given a placebo or everolimus. We are 99% sure he got the everolimus pills as he had constant sores on his head along with some other minor side effects.

About a year ago his onchologist discovered small spots on both of his lungs from his CT scans.  We are now having them biobsied (actually tomorrow!) as they have multiplied and have grown.

If proven to be cancer, he will undergo aggresive treatment involving interleukin 2.

Just wondering if anyone else has or knows anyone this is happending to as we do not know what to expect.

We are trying so hard to be positive but at the same time we are sooooo scared Frown.

 

 

 

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Comments

  • dhs1963
    dhs1963 Member Posts: 513
    #2
    Lungs are the most common place for mets

    In my case it was a solitary Met, which was surgically removed.  No other treatment, and NED to date.

  • Limelife50
    Limelife50 Member Posts: 476
    #3
    Hi Neighbor

    I had a right nephrectomy in 2011 and in 2012 had RFA done to treat a tumor in my left Kidney.I have also had 2 resections done to my Bladder for Transitional cell carcrcinoma ,all of my procedures were done at Gottlieb Memorial in Melrose Park.I like the ideal of going with the HDIL 2  but of course this treatment is no walk in park but offers a chance of complete remission,good luck keep the faith and keep in touch.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #4
    Limelife50 said:

    Hi Neighbor

    I had a right nephrectomy in 2011 and in 2012 had RFA done to treat a tumor in my left Kidney.I have also had 2 resections done to my Bladder for Transitional cell carcrcinoma ,all of my procedures were done at Gottlieb Memorial in Melrose Park.I like the ideal of going with the HDIL 2  but of course this treatment is no walk in park but offers a chance of complete remission,good luck keep the faith and keep in touch.

    Good luck to you tomorrow. I

    Good luck to you tomorrow. I had Stage 3with a 13 cm tumour...nehrectomy December 2, 2013...and so far so good. Keeping you in my thoughts and prayers.

    Please keep us posted!

    Hugs

    Jojo

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #5
    IL2

    Got RCC stage 4, grade 4. Kidney with 10cm tumour removed May 2013.Had Il2, 2 treatments. Il2 is not as scarey as it may sound and is doable. My first treatment reduced my lung mets by half and made the smaller ones disappear. Second treatment not so successful.

    Well worth having a go

  • Darron
    Darron Member Posts: 310 Member
    #6
    Scared is natural

    Being scared is natural, the unknown is difficult.

    I am 17 cm radical right in Oct 2012 stage IV with adrenal tumor and multue lung mets. I have been in a trial for Nicumab and don't have any IL-2 experience, but there are many accounts here of what the proceas entails. it has also been suggested here that the benefits of IL-2 carry to any treatments you may need down the road. I tend to think of IL-2 as swinging for the fence for a home run. We all dream of jogging the bases with a smile, but if te ball doesn't clear the fence, you simply have some work to do getting home.

    scared is something we all are, every day. That is normal.

  • foxhd
    foxhd Member Posts: 3,181 Member
    #7
    Darron said:

    Scared is natural

    Being scared is natural, the unknown is difficult.

    I am 17 cm radical right in Oct 2012 stage IV with adrenal tumor and multue lung mets. I have been in a trial for Nicumab and don't have any IL-2 experience, but there are many accounts here of what the proceas entails. it has also been suggested here that the benefits of IL-2 carry to any treatments you may need down the road. I tend to think of IL-2 as swinging for the fence for a home run. We all dream of jogging the bases with a smile, but if te ball doesn't clear the fence, you simply have some work to do getting home.

    scared is something we all are, every day. That is normal.

    lung mets

    Time makes me forget, but, I had around 20 mets 6 months after the old, "Got it all." Several were in my lungs. Yet I was running better than I had in years. For those unfamiliar with my history, I then got accepted in the nivolumab trial which almost eliminated all mets. That was 3 years ago.

  • todd121
    todd121 Member Posts: 1,448 Member
    #8
    Everest Study

    I participated in this study as well. If your cancer progresses, you are entitled to be unblinded from the study to find out whether you got placebo or everolimus.

    This happened to me.

    I participated in this study. When they found a tumor in my adrenal gland 2 months ago, the oncologist applied with the study to find out what I got and they unblinded me and I discovered I got the placebo. They have to unblind you, because you need to know what was given in order to know what treatments and studies you are eligible for now.

    If you want to know, it might be worth finding out.

    You didn't mention it, but I'm assuming the spots are inoperable? Has that been confirmed by a surgeon? Or are there too many to operate on?

    I'm a little surprised the next treatment would be IL2. This is a question to the board, but don't most docs try one of the other FDA approved drugs that are less toxic, like sutent, votrient, etc?

    Todd

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #9
    todd121 said:

    Everest Study

    I participated in this study as well. If your cancer progresses, you are entitled to be unblinded from the study to find out whether you got placebo or everolimus.

    This happened to me.

    I participated in this study. When they found a tumor in my adrenal gland 2 months ago, the oncologist applied with the study to find out what I got and they unblinded me and I discovered I got the placebo. They have to unblind you, because you need to know what was given in order to know what treatments and studies you are eligible for now.

    If you want to know, it might be worth finding out.

    You didn't mention it, but I'm assuming the spots are inoperable? Has that been confirmed by a surgeon? Or are there too many to operate on?

    I'm a little surprised the next treatment would be IL2. This is a question to the board, but don't most docs try one of the other FDA approved drugs that are less toxic, like sutent, votrient, etc?

    Todd

    Il 2

    My first treatment was IL2. It aint a bundle of laughs but it does offer a chance of a cure

  • foxhd
    foxhd Member Posts: 3,181 Member
    #10
    todd121 said:

    Everest Study

    I participated in this study as well. If your cancer progresses, you are entitled to be unblinded from the study to find out whether you got placebo or everolimus.

    This happened to me.

    I participated in this study. When they found a tumor in my adrenal gland 2 months ago, the oncologist applied with the study to find out what I got and they unblinded me and I discovered I got the placebo. They have to unblind you, because you need to know what was given in order to know what treatments and studies you are eligible for now.

    If you want to know, it might be worth finding out.

    You didn't mention it, but I'm assuming the spots are inoperable? Has that been confirmed by a surgeon? Or are there too many to operate on?

    I'm a little surprised the next treatment would be IL2. This is a question to the board, but don't most docs try one of the other FDA approved drugs that are less toxic, like sutent, votrient, etc?

    Todd

    nivo study

    Todd, I was bumped from the nivolumab (MDX-1106) study because of some small growth. Despite having almost all tumors eliminated within 18 months. That was the protocol. Because of my general health and fitness I was a perfect candidate for the Il-2. My call. I had already refused a votrient study. Again did well for a year until this episode. The current growth descends the spinal canal. Surgery is not an option. Radiation and votrient is the correct treatment for me. I think what has to be kept in mind is that I am now 4 years out from diagnosis. I have never been NED. Never gonna be. Now it is time to regain my health and mobility. There is time ahead to make the next plan thats right for me.

  • Limelife50
    Limelife50 Member Posts: 476
    #11
    todd121 said:

    Everest Study

    I participated in this study as well. If your cancer progresses, you are entitled to be unblinded from the study to find out whether you got placebo or everolimus.

    This happened to me.

    I participated in this study. When they found a tumor in my adrenal gland 2 months ago, the oncologist applied with the study to find out what I got and they unblinded me and I discovered I got the placebo. They have to unblind you, because you need to know what was given in order to know what treatments and studies you are eligible for now.

    If you want to know, it might be worth finding out.

    You didn't mention it, but I'm assuming the spots are inoperable? Has that been confirmed by a surgeon? Or are there too many to operate on?

    I'm a little surprised the next treatment would be IL2. This is a question to the board, but don't most docs try one of the other FDA approved drugs that are less toxic, like sutent, votrient, etc?

    Todd

    Not Me

    HD IL2 Is a no brainer since i would think getting beat down by other treatments that offer little or no hope for a cure should only be used when HD IL2 has failed.

  • Srashedb
    Srashedb Member Posts: 482 Member
    #12
    foxhd said:

    nivo study

    Todd, I was bumped from the nivolumab (MDX-1106) study because of some small growth. Despite having almost all tumors eliminated within 18 months. That was the protocol. Because of my general health and fitness I was a perfect candidate for the Il-2. My call. I had already refused a votrient study. Again did well for a year until this episode. The current growth descends the spinal canal. Surgery is not an option. Radiation and votrient is the correct treatment for me. I think what has to be kept in mind is that I am now 4 years out from diagnosis. I have never been NED. Never gonna be. Now it is time to regain my health and mobility. There is time ahead to make the next plan thats right for me.

    Question

    Fox:

    since you were on drug that worked well, is it possible to get that drug now? Not in a trial since it's approved (right?)?

    Sarah

  • foxhd
    foxhd Member Posts: 3,181 Member
    #13
    Srashedb said:

    Question

    Fox:

    since you were on drug that worked well, is it possible to get that drug now? Not in a trial since it's approved (right?)?

    Sarah

    nivo

    Sarah, That is my thought exactly. You can imagine that since I did fail the study, using a different drug like votrient is a good idea now. So much depends on my potential as to what we do next. But if my progress (rehab) can reach 75%, I think going back on nivo is a super idea. Here is why, I had been on the highest dose allowed and had no side effects. That is a hundred times better than being nauseas, having diarrhia, insomnia, liver issues, and so on. I no longer can expect to live a full lifetime, so not being sick is real important. Even if it costs me some time. I told my doctor that yes I intend to ride my Harley this year. She thinks after all this work keeping me alive, that's crazy. She knows I'm going to do it. That's living. No plastic bubble for me.

  • Srashedb
    Srashedb Member Posts: 482 Member
    #14
    foxhd said:

    nivo

    Sarah, That is my thought exactly. You can imagine that since I did fail the study, using a different drug like votrient is a good idea now. So much depends on my potential as to what we do next. But if my progress (rehab) can reach 75%, I think going back on nivo is a super idea. Here is why, I had been on the highest dose allowed and had no side effects. That is a hundred times better than being nauseas, having diarrhia, insomnia, liver issues, and so on. I no longer can expect to live a full lifetime, so not being sick is real important. Even if it costs me some time. I told my doctor that yes I intend to ride my Harley this year. She thinks after all this work keeping me alive, that's crazy. She knows I'm going to do it. That's living. No plastic bubble for me.

    Excellent

    Fox:

    your lifetime may be shortened (assuming a lot of actuarial data on men's life expectancy) but I so agree that living with horrific and debilitating side effects from toxic drugs has some serious limitations 

    while my husband was in the ICU recovering from the laminectomy, he was clear that he would do a lot to deal with the disease but that there were limits and he didn't know what they would be.

    so glad to see you improving and the motorcycle is waiting for the warm weather

    Sarah

     

  • TLAlways
    TLAlways Member Posts: 15
    #15
    Just the beginning

    You are all so kind. I read and appreciate each and every response, story and words of wisdom.

    Kevin's biopsy proved his kidney cancer has spread to this lungs (3 years after initial finding).  Starts IL-2 in two weeks.  It hurts to see him going through this, but I truly believe he (we) will beat this Smile

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #16
    TLAlways said:

    Just the beginning

    You are all so kind. I read and appreciate each and every response, story and words of wisdom.

    Kevin's biopsy proved his kidney cancer has spread to this lungs (3 years after initial finding).  Starts IL-2 in two weeks.  It hurts to see him going through this, but I truly believe he (we) will beat this Smile

    49

    A good age for IL2. Dont fret it, its different for everybody and you have the best care when you are taking it. Love is the best medicine

  • PK_Chicago
    PK_Chicago Member Posts: 58
    #17
    TLAlways said:

    Just the beginning

    You are all so kind. I read and appreciate each and every response, story and words of wisdom.

    Kevin's biopsy proved his kidney cancer has spread to this lungs (3 years after initial finding).  Starts IL-2 in two weeks.  It hurts to see him going through this, but I truly believe he (we) will beat this Smile

    Good luck!

    Odd connection - After my left kidney was removed I first went to Loyola as well.  I decided not to do the clinical trial, but wait seeing that nothing was seen anywhere else when surgery was preformed.  I went for a second opinion and decided to go to Northwestern instead - I've been very pleased with the staff there.  I am three years out from surgery and have had a 6 month treatment with Torisel (bone mets discovered 1.5 years post surgery) and a dose of radiation (in february).  A CT scan yesterday showed a small amount of activity - which is slightly "expected" seeing that it's been over a year with no treatment.  There is some activity on my lungs but very minor so the doc decided to wait and scan in 4 months.  What was the size and timing of the lung mets?  Any place else? Good luck!!! 

  • Peggyz
    Peggyz Member Posts: 10
    #18
    lung mets and HD IL2

    I am a ten plus year survivor of metastatic RCC with 10cm, and that survival is due to HD IL2.  I was lucky to get into a program, as there were no other options at the time.  It was not easy, but quite doable, and the important thing is to be treated at an experienced location.  I have written about my experience on my blog at www.peggyrcc.com and that may help explain a few things.  Wishing you the best

     

  • angelsnls
    angelsnls Member Posts: 67
    #19
    A before I had my nephrectomy

    A before I had my nephrectomy I was told that I had 2 tiny dots (believed to be) in my right lung. Had open nephrectomy in May 2014 and was told in August that I had ccRCC, I saw my oncologist a couple of weeks later after another ct scan and was given the news that I had multiple metastasis in both lungs and chest lymph nodes, started on pazopanib on 6th September 2014 and so far I have had shrinkage, growth, recurrence in kidney bed, shrinkage again and recurrence again with invasion in IVC!!! I'm sorry I dont know anything about interleukin 2 but I wish you luck.

    Sending you love and hugs

    Angela xx

  • TLAlways
    TLAlways Member Posts: 15
    #20
    Again thank you for your

    Again thank you for your support.  Today was day 1 with IL-2.  It's not going to be easy. Kevin got very tired dizzy and nauseous after one round but he is pretty tough and we'll fight through this together!

  • sblairc
    sblairc Member Posts: 585 Member
    #21
    TLAlways said:

    Again thank you for your

    Again thank you for your support.  Today was day 1 with IL-2.  It's not going to be easy. Kevin got very tired dizzy and nauseous after one round but he is pretty tough and we'll fight through this together!

    We are pulling for you guys! Take care of YOU!

    This will be tough, but you guys can do it!!! And don't forget it's ok to step way and take a break for yourself during this time. I post here on behalf of my husband, he is a Stage 3 survivor. Watching him suffer tremendously in the several days before his surgery when he was hospitalized for the pain was the worst. I didn't realize then that it was OK for me to take a breath and step back and let the health care providers do their job. 

    So don't forget that it's ok to let them help him through this tough time. That is what they are prepared to do. 

    Thinking of you both. 

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