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Introduction and my kidney cancer story

EBFRCC
Posts: 23
Joined: Jun 2018

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. 

icemantoo's picture
icemantoo
Posts: 3164
Joined: Jan 2010

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

EBFRCC
Posts: 23
Joined: Jun 2018

Thank you, icemantoo.

Manufred's picture
Manufred
Posts: 215
Joined: May 2017

 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.

EBFRCC
Posts: 23
Joined: Jun 2018

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

EBFRCC
Posts: 23
Joined: Jun 2018

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”.

Tapman63's picture
Tapman63
Posts: 132
Joined: Dec 2017

...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

EBFRCC
Posts: 23
Joined: Jun 2018

Thanks, Tapman.

Steph85's picture
Steph85
Posts: 155
Joined: Feb 2018

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

EBFRCC
Posts: 23
Joined: Jun 2018

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. 

Allochka's picture
Allochka
Posts: 838
Joined: Nov 2014

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
Posts: 23
Joined: Jun 2018

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.

Bryn1108's picture
Bryn1108
Posts: 74
Joined: Jul 2017

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
Posts: 23
Joined: Jun 2018

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's picture
Manufred
Posts: 215
Joined: May 2017

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
Posts: 23
Joined: Jun 2018

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's picture
Gtngbtr58 @aol.com
Posts: 203
Joined: Oct 2017

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

EBFRCC
Posts: 23
Joined: Jun 2018

Thank you very much, June.

Deanie0916
Posts: 234
Joined: Nov 2016

And prayers your way.Please keep us posted

Deanie0916
Posts: 234
Joined: Nov 2016

And prayers your way.Please keep us posted

EBFRCC
Posts: 23
Joined: Jun 2018

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

 

Manufred's picture
Manufred
Posts: 215
Joined: May 2017

Good luck with the treatment.  At this stage wishful thinking is not a bad idea.

 

EBFRCC
Posts: 23
Joined: Jun 2018

My first infusion went well. Now I just wait for the side effects to creep up. Yet another nerve racking stage of the process.

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

Wow! Glad you got things under way. I wish you all the best!!!

EBFRCC
Posts: 23
Joined: Jun 2018

The first week after my first infusion was fine. The second brought tiredness and gastrointestinal issues. Cry

This week has been more normal. But I am so itchy! No idea if its the meds or the MN state bird (mosquitos).

Not sure if I should expect the same sort of cycle next go round or if things will get progressively worse. We’ll see.

 

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

I'm undergoing the same treatment. At fisrt I was really tired and very itchy. I just finished the agressive part of the treatment and now I will receive treatments once a month. For me personally the gastro symptoms and itchiness did go away I occasionally have rough patches on my skin however with moisturizing lotion it's no big deal. I wish there was something I could do to help you. I have 2 teens and 2 toddlers so the big kids are a big help. I also have a husband that is very helpful. I'm also wishing for my cancer to melt away. I will be praying for healing and strength so you can weather this storm and take care of your sweet babies. 

EBFRCC
Posts: 23
Joined: Jun 2018

I read your post earlier. I’m thinking of you and your four kids. Stay strong. Hug your kids.

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