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New here saying hi

Heholdem
Posts: 3
Joined: Feb 2019

Hello, 

New here and wanted to say hello. My story is in my "About Me" page under the expressions tab, shorter version is this:

12/2016 discovered cyst on left kidney 30x22x23 cm, 01/2017 hand assisted laproscopic radical nephrectomy

Pathology shows positive for HLRCC and tumor is of the Tubulocystic variety.

Cancer free until 01/2018 discovered multiple foci thoughout abdomen and abdominal wall classified as peritoneal carcinomatosis

Was on Sutent from 01/2018 until 09/2018 50mg and 37.5mg

Opdivo 09/2018 to present

 If you have Tubolocystic RCC or know someone that does please get in touch with or have them get in touch with me. TCRCC is a very rare variety and I am trying to get as much information as possible on it.

Thanks

Look forward to the journey

 

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

Hehpldem.

 

 

Wish I had answers,, but over my paygrade. Sending good karma. Stick with Mayo so that they can give you their best answers.

 

 

 

icemantoo

angec's picture
angec
Posts: 923
Joined: Mar 2012

Hello, have not seen that type before. But please join smartpatients.com they know it all and have seen it all. Get some great answers there! All the best to you!

Heholdem
Posts: 3
Joined: Feb 2019

Thank you, I am on smartpatients and there is not much to be found on that site about TCRCC either, not surprising as far as I know there are less than 200 cases world wide of TCRCC. However there are alot of good people and good information on that site about all kinds of RCC.

Manufred's picture
Manufred
Posts: 239
Joined: May 2017

Some story.  I know nothing about TCRCC but I am very familiar with Nivo, which has worked well for my mCCRCC.  Hope it works for you too.  Details on my profile.

Early growth after starting Nivo is not always a cause for alarm. They sometimes call it Pseudo-growth as the T-cell attack on the tumours causes some kind of swelling or inflamation.  Give it about 9 - 12 months.

I had Nivo in combination with Ipi for the first three months, which appears to be a stronger line of treatment.  Maybe discuss with oncologists, but if you've already started on Nivo alone, perhaps let it go and see what happens.

Best Wishes, and may you live to see the girls reach their 21st birthdays and beyond.  Fred

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