Introduction and my kidney cancer story

EBFRCC
EBFRCC Member Posts: 23

In June of 2014, a year and a half after my first child was born, I went back to my obstetrician and asked when the troublesome uterin fibroid I had was ever going to go away as she said it would. Well, it wasn’t a fibroid, but a grapefruit sized tumor on my right kidney.

A few weeks later my right kidney was removed at the University of Minnesota Medical Center. (Through my c-section incision, easy!) The pathology report showed the tumor appeared fully contained to the kidney. It was clear cell RCC, but I don’t remember the grade. My doctor punched the pathology numbers into a calculator and it said 73% chance of ten year survival. Not too bad. He said, given the size of the tumor, he expected much worse. He recommended monitoring. I had a year of alternating CT and MRI scans every three months, then every six months. After nearly three years of clean scans, my doctor said, “See you in a year!” I spent the next year living life taking care of my then two young kids, almost like nothing had ever happened.

Well, my most recent CT in May showed two liver lesions, an inch each, a couple of 2-5mm spots on my lungs, and a small spot on my pancreas. I had a liver biopsy of the accessible lesion, the other is high on the dome, near the diaphragm/lungs/heart. After a long week waiting for the results, I got the bad news it is metastatic kidney cancer.

My kidney doctor referred me to an oncologist here at UMMC. He said my risk category, given my age, health otherwise, and type of kidney cancer would be considered "favorable risk," and I am likely to do well with treatment. He said people that respond well could expect to live “years”. He recommended waiting for a clinical trial of IL-2 and Nivolumab that is set to start here in the next month or so.

Since I had time to wait, I asked my kidney doctor to refer me to someone else for a second opinion. Turns out, that doctor is head of the trial! Dr Shilpa Gupta recommended not waiting several weeks more for the trial, but to begin treatment sooner. She said the trial is such that I could still have it as an option later. She went over several options, two immunotherapy options— high dose IL-2 or ipilimumab in combination with nivolumab*, or a pill, cabozantinib.

*The doctor’s description of the protocol does not sound like this recent FDA approval, but it must be similar. I am pretty sure she said four rounds of just ipilimumab, once every three weeks, followed by nivolumab once a month. I messaged her late last week asking for clarification, but have near heard back yet.

My son will be two in August and my daughter is five-and-a-half. (She’s about to start kindergarten in late August!) I’m a single parent, there is no other parent. I decided to become a mom pretty late in life. I, of course, want to find a way to be here as long as possible. I had hoped to see them through college, at least. So, as I try to research and choose between the options, I struggle to balance quality of life now, with chance of longer life!

It’s been nearly two months since my scan. I’m nervous to get the next, baseline before treatment scan. I am planning to get started in early July. (I not only have to make a treatment choice, I need time to wean my son! Poor thing is getting the ten days to no num-nums experience.)

As the trial or just standard IL-2 would require a lot of hospital stays, I am looking at the ipilimumab/nivolumab versus the cabozantinib. I’d appreciate hearing about others’ experience with either.

Thanks for taking the time to read all this. 

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Comments

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    After the first few paragraphs

    EBFRCC,

     

    ----I was going to suggest a second opinion. You now have that. There is no one right or wrong answer. You have to go with what you feel most comfortable with. Are your doctors consulting with each other. Others here may have thoughts one way or another. As far as the lung spots they coul very likely be benign unless they grow. Many people wih and without Kidney  Cancer issues have lung spots or nodules that small.

    Sending good Karma.

     

     

    icemantoo

  • Manufred
    Manufred Member Posts: 241
    Ipi/Nivo Experience

     I was (still am) part of a long-term Ipi/Nivo trial using the same regime you have mentioned.  It was called Checkmate 214 and has been reported so you can find the results. 

    My own experience could not have been better and I would steer you in that direction, not being a doctor of course.  I had two lessions on my pancreas, up to 30mm, plus about ten more throughout my abdomen.  All of which basically dissolved or disappeared over about 18 months.  I have been NED for the last 18 months.

    Full details are on my profile on this site.

    My mRCC was slow to develop as yours also appears to have been so far, so dont rush into anything.  If you do go down the Ipi/Nivo path, I really hope it will do for you what it has done for me.

    Best Wishes.

  • Tapman63
    Tapman63 Member Posts: 137
    Hang in there...

    ...and best of luck to you.  You've come to the right place for support and info from people that have travelled the same road.  Please, keep us all updated!

     

    Jim

  • Steph85
    Steph85 Member Posts: 166
    Ok, super mom

    My boys are 2 and 5 1/2 yr olds to! I can't imagine being a single mom with my crazy boys. You are my hero! Just had to say that..  I'm so sorry you have to go through this. On here I've read sooo many success stories with trials and living many many years later than predicted. Your going to do wonderfully.  We are here for support every step of the way. Best if luck weining your 2 yr old! My youngest was done at a yr old haha! 

    Take care and hugs to you! 

    Stephanie

  • Allochka
    Allochka Member Posts: 993 Member
    You could try Smart Patients

    You could try Smart Patients as well. It is a great source of info, especially for those who need some kind of treatment.

    You will  definitely be there for your kids!

    hugs,

    Alla

  • EBFRCC
    EBFRCC Member Posts: 23
    edited June 2018 #7
    icemantoo said:

    After the first few paragraphs

    EBFRCC,

     

    ----I was going to suggest a second opinion. You now have that. There is no one right or wrong answer. You have to go with what you feel most comfortable with. Are your doctors consulting with each other. Others here may have thoughts one way or another. As far as the lung spots they coul very likely be benign unless they grow. Many people wih and without Kidney  Cancer issues have lung spots or nodules that small.

    Sending good Karma.

     

     

    icemantoo

    Thank you, icemantoo.

    Thank you, icemantoo.

  • EBFRCC
    EBFRCC Member Posts: 23
    edited June 2018 #8
    Manufred said:

    Ipi/Nivo Experience

     I was (still am) part of a long-term Ipi/Nivo trial using the same regime you have mentioned.  It was called Checkmate 214 and has been reported so you can find the results. 

    My own experience could not have been better and I would steer you in that direction, not being a doctor of course.  I had two lessions on my pancreas, up to 30mm, plus about ten more throughout my abdomen.  All of which basically dissolved or disappeared over about 18 months.  I have been NED for the last 18 months.

    Full details are on my profile on this site.

    My mRCC was slow to develop as yours also appears to have been so far, so dont rush into anything.  If you do go down the Ipi/Nivo path, I really hope it will do for you what it has done for me.

    Best Wishes.

    Thank you. I will go check

    Thank you. I will go check your profile. I’ll likely come back to ask questions.

  • EBFRCC
    EBFRCC Member Posts: 23
    Tapman63 said:

    Hang in there...

    ...and best of luck to you.  You've come to the right place for support and info from people that have travelled the same road.  Please, keep us all updated!

     

    Jim

    Thanks, Tapman.

    Thanks, Tapman.

  • EBFRCC
    EBFRCC Member Posts: 23
    edited June 2018 #10
    Allochka said:

    You could try Smart Patients

    You could try Smart Patients as well. It is a great source of info, especially for those who need some kind of treatment.

    You will  definitely be there for your kids!

    hugs,

    Alla

    i will look into Smart Patients

    i will look into Smart Patients. I am easily overwhelmed by *all* the information! I’ve recruited a couple of detail and research oriented friends to help shift through it all. Thank you.

  • EBFRCC
    EBFRCC Member Posts: 23
    edited June 2018 #11
    Steph85 said:

    Ok, super mom

    My boys are 2 and 5 1/2 yr olds to! I can't imagine being a single mom with my crazy boys. You are my hero! Just had to say that..  I'm so sorry you have to go through this. On here I've read sooo many success stories with trials and living many many years later than predicted. Your going to do wonderfully.  We are here for support every step of the way. Best if luck weining your 2 yr old! My youngest was done at a yr old haha! 

    Take care and hugs to you! 

    Stephanie

    Thanks, Steph. Yes weaning is

    Thanks, Steph. Yes weaning is not easy. I’m on the “nothing in the middle of the night” step. He woke up three times last night cried for 30 each time. Hoping tonight is better. 

  • Bryn1108
    Bryn1108 Member Posts: 97 Member
    Big hugs and prayers

    Hi, may I ask you a question,  before your recent scan, did you feel any different,  did your body start to let you know you have lesions?  Praying hard for you.  

  • EBFRCC
    EBFRCC Member Posts: 23
    Manufred said:

    Ipi/Nivo Experience

     I was (still am) part of a long-term Ipi/Nivo trial using the same regime you have mentioned.  It was called Checkmate 214 and has been reported so you can find the results. 

    My own experience could not have been better and I would steer you in that direction, not being a doctor of course.  I had two lessions on my pancreas, up to 30mm, plus about ten more throughout my abdomen.  All of which basically dissolved or disappeared over about 18 months.  I have been NED for the last 18 months.

    Full details are on my profile on this site.

    My mRCC was slow to develop as yours also appears to have been so far, so dont rush into anything.  If you do go down the Ipi/Nivo path, I really hope it will do for you what it has done for me.

    Best Wishes.

    Quickly read your story. How

    Quickly read your story. How similar we are! Can you give me more details about your side effects of nivol/ipi? The second doctor keeps impressing the chance of severe, emergency room level, side effects. With just two small children and me in the house,it gives me pause. But I do like the idea of a possible “cure”.

  • EBFRCC
    EBFRCC Member Posts: 23
    edited June 2018 #14
    Bryn1108 said:

    Big hugs and prayers

    Hi, may I ask you a question,  before your recent scan, did you feel any different,  did your body start to let you know you have lesions?  Praying hard for you.  

    Nothing unusual

    No, nothing unusual. Since then, of course, I keep feeling “something” near/under my rib cage, where I imagine the “dome” spot to be. An ache, a dull pain, sometimes kind of like heartburn in the wrong place. That one looks kind of scary on the scans. The other just looks like a shadow to me, but the “dome” one definetly looks wrong to me. That’s why I say I’m nervous about the next baseline scan I expect will be ordered very soon before I start whichever treatment.

  • Manufred
    Manufred Member Posts: 241
    edited June 2018 #15
    Ipi/Nivo side effects

    When I signed up for the trial they gave me the complete list of possible side-effects, which included some fairly horrible things. However for me only two things happened.

    My thyroid gland was mistaken for a foreign body (by the Ipi, we think) and was essentially wiped out.  First it went crazy giving me hyperthyroidism (fast heartbeat included) then gave up altogether so now I have hypothyroidism for which I take thyroxine daily.

    I also developed a skin rash (within days of starting treatment) described as lichenoid eruptions, which come and go and for which I apply a steroidal cream when it gets a bit itchy (usually about once or twice a week on whatever area it pops up in).

    I am told both of these are common SE's with this treatment but also that they usually occur in people who respond well, so they are in fact a welcome development.

    Other than that I lead a fully normal life, including exercise, travel, work, spicy food and alcohol.

    I have heard of people developing diarrhea, colitis and respiratory problems, but these seem relatively rare.  Bad luck if it happens to you I suppose.

    Overall I think the SE's of Ipi/Nivo are much less severe than traditional Chemo, and also less than the other option you were offered, of IL2 with Nivo.  Even though it has been around for about 20 years and sometimes works well, IL2 has not caught on because it can be brutal and is usully administered with hospitalisation just in case. 

    I just turn up at the chemo lounge every fortnight for a 60 minute infusion, and I am usually out the door after 2 hours all up, feeling no different from when I walked in.

    Hope all of this helps, and again, best wishes.

    Fred

  • EBFRCC
    EBFRCC Member Posts: 23
    edited June 2018 #16
    Manufred said:

    Ipi/Nivo side effects

    When I signed up for the trial they gave me the complete list of possible side-effects, which included some fairly horrible things. However for me only two things happened.

    My thyroid gland was mistaken for a foreign body (by the Ipi, we think) and was essentially wiped out.  First it went crazy giving me hyperthyroidism (fast heartbeat included) then gave up altogether so now I have hypothyroidism for which I take thyroxine daily.

    I also developed a skin rash (within days of starting treatment) described as lichenoid eruptions, which come and go and for which I apply a steroidal cream when it gets a bit itchy (usually about once or twice a week on whatever area it pops up in).

    I am told both of these are common SE's with this treatment but also that they usually occur in people who respond well, so they are in fact a welcome development.

    Other than that I lead a fully normal life, including exercise, travel, work, spicy food and alcohol.

    I have heard of people developing diarrhea, colitis and respiratory problems, but these seem relatively rare.  Bad luck if it happens to you I suppose.

    Overall I think the SE's of Ipi/Nivo are much less severe than traditional Chemo, and also less than the other option you were offered, of IL2 with Nivo.  Even though it has been around for about 20 years and sometimes works well, IL2 has not caught on because it can be brutal and is usully administered with hospitalisation just in case. 

    I just turn up at the chemo lounge every fortnight for a 60 minute infusion, and I am usually out the door after 2 hours all up, feeling no different from when I walked in.

    Hope all of this helps, and again, best wishes.

    Fred

    Thank you

    Thank you very much for your detailed reply. It really helps to hear real world experiences with the combo. I am leaning that way. I meet with the first doctor on Monday and will hopefully get started soon after.

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206
    No

    Experience B"H but want to wish you best of luck for continued health-June

  • EBFRCC
    EBFRCC Member Posts: 23

    No

    Experience B"H but want to wish you best of luck for continued health-June

    Thank you very much, June.

    Thank you very much, June.

  • Deanie0916
    Deanie0916 Member Posts: 494 Member
    Sending good vibes

    And prayers your way.Please keep us posted

  • Deanie0916
    Deanie0916 Member Posts: 494 Member
    Sending good vibes

    And prayers your way.Please keep us posted

  • EBFRCC
    EBFRCC Member Posts: 23
    Treatment starts Monday!

    My doctor agreed the OPDIVO (nivolumab) + YERVOY (ipilimum) was a good place to start. Really have no idea what to actually expect as far as side effects. Hoping for only slight fatigue and tumors that “melt away.” That might be wishful thinking.  Wink