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Beryl Nelson
625 followers
625 followers
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ept 2015 at home
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Sept 2015 at home
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About Kidney Cancer

Kidney cancer does not have any reliable, easy to use tests, so it is usually found late, and by accident. For example, it can easily be seen on a scan of the abdomen, and most of those diagnosed early are diagnosed via such early ultrasound or CT scans

In my case, it was found because I had huge blood clots in the urine, and the following might had very strong flank pain. I went to urgent care at PAMF, near my house, on Sunday, Mother's day. They did urine tests, a pelvic exam, then  a CT scan The result was a 7 cm long mass running across the left kidney horizontally. They said, "strongly consistent with renal cell carcinoma.

The following night my pain was so severe I could not sleep, so I wrote to Robin, who was in Germany at the time. She said, if you still have the pain, call an ambulance and go to Stanford.  This turned out to be good advice; it got me in their system, and they did all the tests they needed for evaluation. I went home by evening, by taxi, The urgent care visit was on May 11th 2014, and surgery to remove the kidney, a radical robotic left nephrectomy, was performed on My 29th. All three of my daughters came to help out.

It looked good at the time, except that the tumor looked like it had transformed to have the capability to create new blood vessels. That meant we had to watch vigilantly. Unfortunately, the three month checkup showed spots in the lungs, so it did spread for me. By now,  it has spread to the lungs, liver, Pancreas, the right frontal lobe of the brain, and I am not sure where else.

There are a few drugs known for treating advanced kidney cancer if it were to spread: http://www.kidneycancer.org/knowledge/learn/therapies-for-advanced-kidney-cancer/ They are called targeted therapies because they attack a few pathways, mostly involved in angiogenesis, the process of creating blood pathways that will support the cancer. Unfortunately, no one knows how to predict which drug will work for which cancer; this means that in practice, one tries  drug for 3 months, then does a scan to check for progression of the disease. You can run out of time this way.

I was introduced to the ideal oncologist,  Alice Fan. Her research interests match early diagnosis, and early determination of which drug will work, exactly.

We decided on the most risky treatment option, immunotherapy high dose IL2), because it had a small (3-5%) chance of a full cure. Unfortunately, I was not one of the lucky ones, and it took q huge toll on my body. I was in the hospital for much of December 2014. Before the treatment I was basically a healthy person; afterwards I had persistent coughing and problems with reflux,

At this point, we started drug 1, pazopanib.
After 3 months, I was presenting symptoms of a brain tumor, so I had brain surgery on May 4th.  After the brain surgery plus high dose radiation I started axinirinib
My lung problems increased during this period, so we switched again, to everolimus
On this drug, my lung tumors did decrease, but I was so weak that it was not a life worth living. I stopped everolimus on September 1st 2015.

There was a drug in the pipeline that we were very excited about: nivolumab (trade name Opdivo). This worked by an entirely different mechanism. It is an immunodrug. The day after my birthday, we were approved to try this. I've had 2 doses, but I've had a lot of down turns since that time. I don't know whether I can continue, but it is a bright hope for others.

I think that kidney cancer deserves some research funds. My favorite recipient would be the research fund of Dr. Alice Fan at Stanford University.

To make your gift online, please follow this link https://alumni-med.stanford.edu/get/page/makeagift?pgnTPC=399&olc=06421&stp=1&cturl=close&gdso=14&pgOrg=msa , select “Other” in the second pull-down menu, and note “Dr. Alice Fan Research Fund” in the Special Instructions/Other Designation field. You may also note that this is in honor of Beryl Nelson. 

If your employer matches gifts to charitable organizations, after you click through to the transaction page where you will enter your payment information, you will want to click the box that says “I will submit a matching gift from my employer” at the bottom (directly beneath the payment details section). You can then send in a copy of your matching gift form to Christine Bauer.

Christine Bauer
Associate Director, Cancer
Medical Center Development
Stanford University
3172 Porter Drive, Palo Alto, CA 94304

Office: (650) 724-1903
Mobile: (650) 996-9443 
Email: christine.bauer@stanford.edu
or contact her directly.

Another organization which does useful work in Kidney Cancer education is the Kidney Cancer Association: 
 
http://www.kidneycancer.org/

If you want to read about my case of kidney cancer,
http://www.caringbridge.org/visit/berylnelson

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Yummy food on a day I can actually eat. Idli with coconut chutney from Manisha for breakfast; Althea and I made muffins in the evening for a treat. Half jam for her, half cranberry for me.
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Saturday treats
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CODE: Documentary 
Tickets for screenings at the Mill Valley Film Festival go on sale today!

Friday October 9 at 6 PM
CinéArts Sequoia
25 Throckmorton Ave, Mill Valley, CA 94941

Wednesday October 14 at 3:30 PM
Rafael Film Center
1118 Fourth Street, San Rafael, CA 94901

Saturday October 17 at 2:15 PM
Throckmorton Theatre
142 Throckmorton Ave, Mill Valley, CA 94941
Panel to follow

http://www.codedoc.co/screenings/

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Birthday flowers
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A bouquet from +Jelena Pjesivac-Grbovic was enough to spread through the entire house!
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Roses to adorn the entire house!
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Superstar women who have left Google to lead other ventures, including +Stacy Brown-Philpot , now at Task Rabbit. Stacy was one of the founders of the BGN (Black Googlers Network) at Google.

http://fortune.com/2015/09/10/women-google-effect/

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Congratulations to Michal Segalov and Daniela Raijman on winning the Social Impact ABIE award, for their development of Mind the Gap!

http://www.streetinsider.com/Press+Releases/Announcing+the+2015+GHC+ABIE+Award+Winners/10857098.html
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