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Clinical Trial - MPDL3280A + bevacizumab (avastin)

firedude21
Posts: 52
Joined: Sep 2014

As some of may know from my previous posts I am a long term kidney cancer survivor. In 1990 I lost my left kidney to RCC. That was followed by 14 good years. During this time I was getting regular check ups. During a check up in 2004 a mass was found on my right kidney. I was sent to UCLA where a partial nephrectomy was done. This time 10 good years except for a bout with prostate cancer in 2007. In August of this year a small mass was found in the lower pole of what is left of my right kidney. Once again I was sent to UCLA. This was followed by the discovery of mets to the right hip bone, two ribs and my right tibia. To make a long story shorter I will jump ahead and skip all the tests and scans I have been going through. Yesterday, 12/4/14, I started the trial mentioned in the subject above. Every three weeks I will be infused with the study durg MPDL3280A and Avastin. At this time they are just keeping an eye on the tumor in the kidney.  As time goes on I will report on the scan results, side effects, etc.  As of today I feel fine. In fact if I had not gone in for my yearly check up I would not even know that the cancer had retruned except for some hip pain which was orginally thought to be arthritis.

This forum has helped be deal with this ordeal and I appreciate all here.

Wishing you all the best.

firedude21 

 

p.s. - I am very lucky to have the awesome support of my wife, daughter and son. My wife and daughter have both driven me the two hundred plus miles to UCLA numerous times. I am a lucky man.

mjl66
Posts: 8
Joined: Nov 2014

Hi,

My husband has RCC kidney cancer, mets to lung and liver. He is in the same trial he receives both drugs also. He has just had his secon infusion.

Good luck to you.

MJ

Largeal
Posts: 3
Joined: Aug 2015

After 13plus years of being diagnosed with clear cell RCC and a nephrectomy and 3 lung resections, I just started this trial( third stage). Fortunately,I have had few side effects,so far. I am having one side effect that is a problem. I have gotten mouth and tongue sores making it difficult to eat. I wonder if you experienced the same problem and might have a solution to alleviate the pain. 

Thanks

Largeal

firedude21
Posts: 52
Joined: Sep 2014

Largeal -

I have not had that side effect. I have dealt with soreness, sometimes pretty bad, in shoulders and legs. Also fatigue and loss of appetite. I will be getting scanned this Wednesday and I am hoping for the best. I wish you the best with this trial. I wonder what the difference is between the phase 2 and 3 portions of this trial. 

firedude21

 

 

Largeal
Posts: 3
Joined: Aug 2015

I believe in the third stage both Avastin and MPDL 3280 are given in combination.  Thanks for your good wishes. I hope this trial is successful and many of us could be helped.

Allen

grafer
Posts: 20
Joined: Aug 2015

Hi

You may have fixed yr mouth sores by now, but if you havent - Have you tried the baking soda remedy ? I'm RCC stge 4 - on current trial with Nivolumab, Initially had mouth ulcer- 1 teaspoon baking soda mixed in half cup warm water- Rinse out mouth 2-3 times a day. Fixed mine real quick.

Good luck.

I am alive
Posts: 316
Joined: Jul 2012

Sending good vibes your way, firedude

  

tyjsbtn
Posts: 50
Joined: Sep 2014

I am trying to get into this trial now at Vanderbilt.  At my 1st year scans they found several mets in both lungs.  I have had all my testing and rescans done for the study and hope to hear something next week on whether or not I have made it into the study.  Unfortnataly I may not be illigeble since they found a potential brain met during my scans.  I am waiting to hear back from the doctor now.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Good luck to you on Wednesday, Firedude! We are cheering for you!!

Hugs

Jojo

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