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Stage 4 anal cancer

pattiannw
Posts: 3
Joined: Sep 2017

I was diagnosed in June with anal cancer, and after a pet scan labeled as Stage 4, i had 2 small masses in each lobe of lung, that was too small to test and 3 small masses on my liver, 2 on one lobe and 1 on the other, both had fdg uptake.

In July I started treatment of chemo with folfox (oxaliplatin and 5 fu)

I have done 2 full treatment and one at 75%9(because of blood issues), the very first one i did not do the 5fu pump.

Had my scan on Monday, Sept 11 and it showed nothing in lungs, decrease in size in liver and anal, dr recommended 4 more treatments and a scan to see if has decreased more, if it has then 4 more treatments and then go on a chemo maint. with pills every other week, indefinetly.

My daughter has been researching alot and wonders if what other patients have done and wants to know if any have had liver resection. He felt that was not an option since i had it on more than just the liver.

LindaBaehr
Posts: 47
Joined: Jun 2017

I'm so sorry you are going through this.

I had metastasis to my liver as well, but fortunately I just had one spot.  It did shrink a bit with the chemo, but last August they removed the right lobe of my liver.  They also removed my gall bladder since it was right next to the tumor.  It was a tough surgery, but they seem to have got it all. 

Hopefully yours will go away with chemo alone.  Ugh.  I don't know what to say.  

Mollymaude
Posts: 372
Joined: Nov 2016

I would get more than one opinion if I were you. MD Anderson or someplace like that. Sometimes you can do a consult and not even have to travel. If you have a good oncologist they won't see this as an insult (which it isn't). Please keep us updated on how you are doing.

horsepad's picture
horsepad
Posts: 135
Joined: Apr 2012

Hi Patti Ann,

I was diagmosed with stage 4 anal cancer in 2011.  The cancer has spread to my lympth nodes and liver.  I had one spot on my liver, in a perfect location for resection.  I had liver resection surgery a few months after I finished treatment.  It was successful and I praise God everyday for life.  My liver surgeon told me if I had multiple tumers on my liver they could not do the resection because they don't remove the tumor, they remove the portion of the liver that is contaminated with cancer.  Thus they cannot cut up your liver to get to multiple cancer tumors.  Fortunately the section removed does regrow.  My surgery was on a Friday, I was discharged on that Sunday and was back to raising grandchildren and running a 70 acre farm in less than a week.  I will keep you in my prayers, that the chemo continues to shrink those tumors!

thrivingdaily
Posts: 4
Joined: Aug 2017

Hi Patti Ann-

Prayers to you and others with this horrible disease. My sister was diagnosed with anal cancer in August 2015 and a recurrence in August 2017. It has spread to her lungs and in some lymph. She doesn't want to do chemo or any other therapy. Her biggest issue is weight loss. She is around 80 pounds now.

Anyone have suggestions for cachexia?

Praying for miracles for all of you.

Jane s's picture
Jane s
Posts: 65
Joined: Aug 2017

Have you looked into any clinical trials? They are some new treatments,  nivolumab and bio identical hormones,  I think.   Good luck,  we are all rooting for you. 

Jane

mp327's picture
mp327
Posts: 4328
Joined: Jan 2010

Welcome, but so sorry you have a reason to be here.  I agree with another poster that MD Anderson should be checked in to as well as clinical trials.  I wish you all the best.

thrivingdaily
Posts: 4
Joined: Aug 2017

So very sorry to hear about your situation, Pattiann. Do your research and make the decisions you feel best about. Wishing you the very best.

tanda
Posts: 147
Joined: Jan 2015

Agree with others who have urged you to seek some other opinions; MDAnderson would definitely be a first choice.  Where are you located?  There are many other Comprehensive Cancer centers in almost every state and a number of promising clinical trials recruiting..

 

Did you also have radiation ?  I guess the major concern is the liver and the lungs.

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