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Update on my treatment

Posts: 9
Joined: Aug 2016

Hi there - long time, no post.

Wanted to give an update since it's been a while. I'm the 29 year old (now 30) with papillary RCC from HLRCC.

I started on the PAPMET trial in September taking Cabo after the cancer metastasized to my liver, lungs and lymph nodes despite the nephrectomy and adrenalectomy. I did have to reduce my dosage from 60 to 40 mg and take a week vacation in January, but I found out according to my chest/ab/pelvis CT last week I am NED!

I do have a brain MRI scheduled at the end of the month because I've had some concerning headaches, but hoping it's nothing to worry about. 

Hope you all are doing well and on the path to better health.

Abunai's picture
Posts: 173
Joined: Oct 2016

That's awesome!

I'm very happy for you. May you remain that way forever.

APny's picture
Posts: 1998
Joined: Mar 2014

Yes, very good news and keeping fingers crossed for MRI!

foxhd's picture
Posts: 3183
Joined: Oct 2011

taking your cabo.

Posts: 9
Joined: Aug 2016

Thanks all!! And yes, foxhd- definitely not stopping Cabo. I know I need to keep taking it to keep the brakes in pace, so to speak.

beemurguia's picture
Posts: 57
Joined: Mar 2017

That is wonderful new!!!Enjoy life to the fullest young man!! May all your future scans be NED!!!

tamaven01's picture
Posts: 21
Joined: Feb 2016

I've been on cabo 3 months and I IMMEDIATELY had a positive response with my first scan showing dramatic shrinkage of my tumors.  I am still feeling very good and have my next scan early september.  I am greatly encouraged to hear your good news! Thank you!


Jan4you's picture
Posts: 1327
Joined: Oct 2013

Hey Tiger, glad you are here!

Thanks for reporting such good news; it gives hope to so many!

Hugs and continued good health/reports!


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