My Story of Stage IV Kidney Cancer - Kidney Cancer Sup...

Kidney Cancer Support

My Story of Stage IV Kidney Cancer

mvrace4ever
mvrace4ever

Written originally on 02/11/2018

Updated 10/7/2018

Hello All, I posted my story on Inspire before. I got invited to this Support group and I wanted to share this with you.

Here is a summarized description of what I went through and where I am at today. I am 48 years old.

December 2016 started to vomit in the morning. Started to lose weight.

January 2017 continued vomiting and started having fever everyday in the afternoon and for around 4 to 5 hours. 102.5 degrees was the average.

January 2017 / Feb 2017 same as before adding night sweats. Loss of appetite and losing more weight. Lack of energy, started to feel like I did not want to do anything.

Doctors started tests in January and finally a ct-scan with contrast. On 02/08/2017 received a call from Oncologists. 4-inch tumor on my left Kidney, nodes in the lungs (large ones).

Went to USC to see surgeon who put me on the waiting list immediately. March 9th 2017 my left kidney is removed. Doctor went in the “old fashion way” (means a big cut, L shape upside down, in my stomach) to inspect all my organs to ensure nothing else was compromised.

SURGICAL PATHOLOGY REPORT Rena cell carcinoma Tumor Size: 11.5 cm in greatest dimension Metastatic kidney cancer

During my recovery (very tough!) I started to do research (lots of it) of what I could do to fix my condition.

- USC offered IL-2 with less than 7- 10% success rate – treatment is HORRIBLE. No thanks!

- Found treatment in Europe having great success. Helping the immune system

- Went back to my original oncologists and he offered a clinical trial helping the immune system. Nivolumab and Ipilimumab.

After Surgery and before the start of my clinical trial I did a ct-scan. Dated 05/26/2017 revealed MULTIPLES nodes in the lungs (covered) 3.8 cm and 3.4 cm the largest. My symptoms started to come back. Unable to recover weight...

At this time, I also hired a nutritionist (who had testicular cancer that metastasis to the lungs) and a personal trainer.

Clinical trial started on 06/02/2017… my 1st infusion. All good, no side effects.

Going to the gym twice a week (even though I did not feel like going) and keeping a very strict diet

2nd infusion 06/29/2017. All good, no side effects

3rd infusion 7/27/2017. All good… no side effects

Started to feel better. Gaining weight, gaining muscle and strength. Going to the gym twice a week (taking it VERY slow). Started to play tennis again

CT Scan 08/16/2017 results came in… drastic change. Only 2 Nodes per Lung longest one measuring 1.0 cm.

4th infusion 8/28/2017. All Good no side effects

Started car racing again (one of my hobbies)

5th infusion 9/21/2017. All good… no side effects

CT Scan 10/16/2017 results came in. ALL CLEAR! We are on remission.

6th infusion 10/19/2017. All good… no side effects

7th infusion 11/16/17. All good… no side effects

CT scan 12/12/2017 – all clear.

8th infusion 12/13/2017. All good… no side effects

9th infusion 1/11/2018. All good… no side effects

10th infusion 2/8/2018. All good… no side effects

Doctor tells me we are going to continue...

I started to recover strength and muscle. Able to play tennis normally at the same or better level than before. Won the last 2 regional car races at the end of October 2017. I did the national race, came in 2nd place and got the lap record!

Did I feel depressed? OF COURSE! Stage IV cancer! Who doesn’t? Did I look at the ceiling at nights? YES! Did I think about death? The people I love? YES, OF COURSE. I think you are allowed… BUT as you can see I found a way through… I decided to fight and we gave it all we got… (my wife, my family, people closed to me, my doctor and his team, my nutritionist, my personal trainer, my massage therapists and more).

I want to share my experience… this is a summarized version. I changed my life to fight this thing... I have decided to “pay it forward”. Help as much as I can. I will contact groups, hospitals, etc. that want to hear my “not so summarized” version. I will not charge and I will pay my own expenses… we just need to coordinate so it does not affect my line of work. If possible I will travel anywhere in the US and WHY NOT anywhere in the world.

QUICK UPDATE as of 10/7/2018

I have continued my treatment with no side effects. CT-Scan continue now every 3 months (trying to make these every 6 months or perhaps once a year). Last CT Scan reveal a 0.2 cm (2 millimeters) dot in one of my lungs… Doctor is not worried as it could be just a image error (so small), but we will keep an eye on it on the next scan. I don’t feel anything… feeling great!

I have continued my diet / nutrition program to the letter.

I continue to go to the gym twice a week. Play tennis at least once a week (singles) and continue car racing. This year I am leading the Porsche 944 Southern California championship with 10 wins out of 12 races. Just came back from Circuit of the Americas in Austin TX where I participated in 2 National events. I was crowned National Champion of Time Trail!

We also went to the Kidney Cancer Association meeting in Chicago 3 weeks ago… great event, met great people and other survivors.

I have shared my diet with more than 20 other members... it is long so I send it via email. But remember that this is my diet... tailor made for me... you should always consult a professional for this (like I did).

Hope this helps and happy to share my story so far with you!

Marcelo Vine

32 Replies

Welcome to the group.

Hi Marcelo - I believe we met at the KCA conference in Chicago a few weeks back. Im the Canadian guy you spoke with who just started Nivo and Ipi. I'm just wondering what your diet consists of in general. You seem to be quite convinced that its part of the reason you're doing so well.

Rob.

Hello Rob, please provide an email and I will send it to you. I strongly believe that proper nutrition is another weapon against my disease. Exercise is other... so... why not not use as many weapons as possible. Send me your email and I will forward it to you too.

Thanks immensely for your story. I'm crying for the first time in months. It helps.

PS. Congratulations on your racing success.

Your very welcome and thanks. I am glad and happy that I had a positive impact on you. I remember that when things were not going in the right direction I did cry... it felt good. I have also learned to let emotions out when you are happy and inspired. It is healthy. Best wishes!!

You are so lucky to have the family and financial support. I have stage 4 kidney cancer since October 2014. I lost my business the few friends I had have gone back to their life. There are medications that Medicare won't cover and I don't have the money to get it. I'm in pain almost 24/7. I used to run marathons now I'm lucky if I can walk to the mailbox. Some days o pray for God to take me.

So be grateful for all that you have because there are a lot of us out here that don't have the resources you do.

Good luck in your racing. I used to go watch the drags in Pomona many years ago.

mvrace4ever
mvrace4ever in reply to Hampner

I do feel very lucky... and when you think you are having a tough time... when you think that you are having a horrible time... you can always find that someone has it worst than you. On my dark days and when things were not going in the right direction I also looked into euthanasia (assisted suicide)... I did not want to suffer anymore... I did not want my wife, family to go through this disease with me... but I was given a chance... clinical trials. I went to the Kidney Cancer meeting in Chicago recently and there is quite a few options for us... in case what you are doing does not work. There are clinical trials available.

Just like my doctor told me "with kidney cancer you have to pick your poison and hope that it works... otherwise you keep trying another". I wish you best of luck and thanks for reading my post.

Thanks - rob.chanko@gmail.com

Hi Marcelo! Can you send me the diet that you followed? I have been searching for a dietitian who has experience with cancer and kidney but no luck so far. I sent you a private msg with my email, but just in case you don't receive it my email is:

chihuahualover2525@gmail.com

Thank you so much!

Hi Marcelo, Your story brought me hope!!! My husband, Yao, just got his stage IV kidney cancer diagnosis with nodes on lung and liver. I am completely heartbroken and feeling so desperate! I love your story and I wish you all the best! I want Yao to read your story!

Thank you!

Ying

Hello Ying, I really did not realize how hard my condition was on my wife and loved ones. I was busy dealing with my symptoms and everything else that comes with cancer. Months after my surgery my wife told me what happened after I woke up from surgery... we hugged and kissed... my sisters were there, my niece and my mom. After they saw me they all left the room and in the hallway they started to cry and cry for long minutes. I understand what you are feeling... my wife does too. I hope Yao reads my post... and others that survived... if there is light at the end of the tunnel... the journey and fight is worth it... BEST WISHES AND HOPE for you and Yao.

Dear Marcelo, I was extremely thrilled to see your reply! Thank you! And your wife who went through so much! Our battle has just started and we want to fight and Yao promised me to fight with every bit of him. He did read your post and is very grateful for it! You take good care and keep up the good work!

Ying

Dolhill
Dolhill in reply to mvrace4ever

Sorry, my email is lhill1948

.

Thanks

Linda Hill

mvrace4ever
mvrace4ever in reply to Dolhill

I need your complete email... is it hotmail.com gmail.com or something else?

Please let me know and I will forward the docs right away

So glad to hear that you are doing well. I was on the original clinical trials of the Nivo-Ipi what dose of each are you doing. Good luck with your health and racing.

Hello Alex and thanks! Every 30 days I get my infusion... I get Nivo-Ipi. 30 days later I only get one bag of Nivo. 30 days later I get 2 bags Nivo-Ipi... 30 days later one bag of Nivo. and it rotates like that every 30 days. The actual doses varies a little based on my weight. Not sure of the exact mg, but I will ask and provide that to you. But the bag is a full size one and the infusion lasts 1 hour. The ipi bag is smaller and it takes around 25 mins to go in. Hope that helps.

Thanks for replying just curious about how our treatments differed. I had 3mg per kg of my body weight of Ipi 90min with a 30 min flush then 1mg per kg of my body weight of Nivo every 4 wks for 4 sessions I got a blood clot after my 4th session. I went on to my maintenance program which I was only able to do 2 sessions of that. That's pretty much of what my trial consisted of.

Thanks again.

Id like copy of diet regime nancetucson@gmail.com

mvrace4ever
mvrace4ever in reply to Ncrosby

Email sent to you too.

I just posted this on Inspire and want to share with all of you.

Also... I just watched on Amazon "Living Proof" how Matt Embry is fighting Multiple Sclerosis. I really and STRONGLY recommend everyone to watch this documentary... also visit his website MShope. Spread the word! Proper nutrition can really make a difference.

I will email Matt and hopefully get together with him... I would love to participate on his events, etc.

Dolhill
Dolhill in reply to mvrace4ever

I would like your diet also.

Thanks

Li da Hill

mvrace4ever
mvrace4ever in reply to Dolhill

Please provide me your email so I can forward the docs to you.

I was able to gathered the amount of each drug I get (it was asked before)... last week nivo was 529mg and ipi is 88 mg

It varies with my weight... I was 204 at the scale. I am 6'3"

Hope this helps!

I found your story so helpful and so inspiring. I am 43 years old, mother of 2 girls and was diagnosed with stage 1 RCC in April of 2018. I had a partial nephrectomy in July 2018 and pathology showed it was grade 3. My urologist said my follow up is to get MRI with and without contrast every 6 months. I am SO new to all of this and just today discovered this site. You seem very knowledgeable on all of this and I would appreciate any tips. I'm scared everyday that it will come back. I had my first MRI last week and it came back all clear. But it was just an MRI of my abdomen. They did an x ray of my lungs in April 2018 and all was clear. I feel like my urologist isn't worried at all about me.

Do you have any advice or what are your thoughts on this matter?

Also I would love it if you could share your diet with me.

Please send me your diet regime

My email is

Kingaaussie@gmail.com

Thank you

Hello Mocna... I sent the email today... best of luck!

Hello Mocna... I just want to add that I am NO expert... I just like to SHARE my experience and hope that everyone can find a path and get the same or better results I have and had so far. I went to the Kidney Cancer Association meeting in Chicago last year and there are lots of options and trials for kidney cancer patients. Immune therapy is by far leading the percentages in success handling this disease. When I started my battle I did research and the remedies available back in 2017 did not show great % of success... but today with immune therapy those percentages are high. I was also lucky to find Dr. Farjami in Long Beach CA... I can tell that he really cares... he put me on the treatment that I was looking for (immune therapy). I went to see 2 other doctors before I went with Dr. Farjami... you need to feel confident / comfortable with the doctor you have.

I like to check for success rate as well... I love math... if someone has treated this disease... what percentage of success they have, etc.

I wish you luck and feel free to ask and share your experience...

I wanted to update all of you... after 2 years of being on Clinical Trial (NIVOLUMAB AND IPILIMUMAB) my oncologists told me last week that I have graduated. The clinical trial has needed. I have been on remission since October 2017. After Stage IV cancer, removal of left Kidney with 4 inch tumor, lungs covered of cancer nodes... this has been a great result. Beside the treatment I also did a SUPPORT program with it. Nutrition, exercise and more was KEY to my success. I wish the best to all of you and I have shared my Nutrition program with hundreds of people. If you want it, just send me your email. I believe that proper medicine has a lot to do... BUT not all people get the same result from it... the reason... I think they do not change their lifestyle (nutrition, exercise, etc.). BEST WISHES TO ALL!!

Would love to have your nutrition program for my hubby who has end stage renal cell carcinoma, left kidney removed in 2015 due to cancer, and just starting third targeted drug for lung nodules that became apparent in 2017. Like you, I believe comprehensive treatment better plan than meds alone. Email: fayecgentry@aol.com

Hello Tennis40... email sent. Hope it helps! Best wishes.

Hi, I am so happy to read your story! I was just diagnosed with stage IV kidney cancer and your story was very comforting! Do you mind if I send you some questions? I am new to this message board so I hope to navigate it properly.

mvrace4ever
mvrace4ever in reply to Timmoney

Hello Timmoney... sure ask away. Also, send me your email address... I will email you my nutrition program, diet, etc. But feel free to ask anything here or directly via email. I have emailed my nutrition program to over 40 people. My email address is marcelo.vine@hotmail.com

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