Just diagnosed Stage 3 Caniciroid (sp? Sorry) with Mets in the liver...

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Just diagnosed Stage 3 Caniciroid (sp? Sorry) with Mets in the liver...

by Akflea11 on Sat Apr 20, 2019 11:24 AM

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Hello I am a 48 year old woman and I was just diagnosed, well 6 months ago, with Stage 3 Carniciroid of the Illium with Mets in the liver.  20 years ago I was diagnosed with endometrial cancer after battling severe endometriosis for 15 years.  Even though we were 99.9999% sure all of the tumors, and there were 11 of them) were contained within my uterus they convinced me to do "just one round" of chemo you know "just to be safe".  A possible rare side effect of that chemo was the possibility I could develop gastroparesis (paralyzation of the stomach). As if the vomiting, hair loss and general overal l "i feel like crap werent side effect enough. Well my daddy used to always tell me I was "rare" and he must've been right cus...you guessed it... I developed gastroparesis.  By the time they placed my GJ feeding tube I was down to 89 lbs and was spending more time in the hospital than out until finally I was told I wouldnt make it another year! Well at that point I decided to hell with doctors advice and just started managing my disease in a way that made sense to me and started fighting with all my might.  Slowly but surely my weight rose to a very acceptable number.  My immune system improved and infections became almost non- existent and I even went back to full time work. While not in perfect health I definitely had more good days than bad.  Until BAM I slammed right into this lovely brick wall.

I knew in my gut (pardon the pun) probably a year ago that something was wrong.  I started drastically dropping weight, I vomit ALL the damn time and now NOTHING even touches my nausea.  I am in horrific pain all of the time, I have ABSOLUTELY NO energy.  I cant use the bathroom.  I have a hard time swallowing...not that I can keep anything down even if I wanted to...I dont  know that I even have it in me to fight the fight again and quite frankly dont even really know that I want to.  I'm tired of getting the run around by these doctors and have decided I am not going to go back.

Does anyone know how I would go about getting hospice involved or if they will even help me?  I'm sick and tired of being sick and tired and I just cant handle all the pain and exhaustion. Any direction anyone can give would be so appreciated.  

Thanks everyone for reading my novel...lol

P.S. I live in Seattle, Washington

RE: Just diagnosed Stage 3 Caniciroid (sp? Sorry) with Mets in the liver...

by akdixon5 on Thu Apr 25, 2019 03:32 PM

Quote | Reply
I had surgery where they took out 24” of my intestines and had a hysterectomy at the same time. I then started seeing Dr Woltering in Kenner LA who does CTs and MRI semiannually. I’m four years clear after Stage 4. There is hope if you see the experts. Dr Woltering is the best.

RE: Just diagnosed Stage 3 Caniciroid (sp? Sorry) with Mets in the liver...

by lindahudson on Fri May 10, 2019 05:04 AM

Quote | Reply

On Apr 20, 2019 11:24 AM Akflea11 wrote:

Hello I am a 48 year old woman and I was just diagnosed, well 6 months ago, with Stage 3 Carniciroid of the Illium with Mets in the liver.  20 years ago I was diagnosed with endometrial cancer after battling severe endometriosis for 15 years.  Even though we were 99.9999% sure all of the tumors, and there were 11 of them) were contained within my uterus they convinced me to do "just one round" of chemo you know "just to be safe".  A possible rare side effect of that chemo was the possibility I could develop gastroparesis (paralyzation of the stomach). As if the vomiting, hair loss and general overal l "i feel like crap werent side effect enough. Well my daddy used to always tell me I was "rare" and he must've been right cus...you guessed it... I developed gastroparesis.  By the time they placed my GJ feeding tube I was down to 89 lbs and was spending more time in the hospital than out until finally I was told I wouldnt make it another year! Well at that point I decided to hell with doctors advice and just started managing my disease in a way that made sense to me and started fighting with all my might.  Slowly but surely my weight rose to a very acceptable number.  My immune system improved and infections became almost non- existent and I even went back to full time work. While not in perfect health I definitely had more good days than bad.  Until BAM I slammed right into this lovely brick wall.

I knew in my gut (pardon the pun) probably a year ago that something was wrong.  I started drastically dropping weight, I vomit ALL the damn time and now NOTHING even touches my nausea.  I am in horrific pain all of the time, I have ABSOLUTELY NO energy.  I cant use the bathroom.  I have a hard time swallowing...not that I can keep anything down even if I wanted to...I dont  know that I even have it in me to fight the fight again and quite frankly dont even really know that I want to.  I'm tired of getting the run around by these doctors and have decided I am not going to go back.

Does anyone know how I would go about getting hospice involved or if they will even help me?  I'm sick and tired of being sick and tired and I just cant handle all the pain and exhaustion. Any direction anyone can give would be so appreciated.  

Thanks everyone for reading my novel...lol

P.S. I live in Seattle, Washington

Dear akflea11,

I am so sorry to hear about your health issues and all the pain that you are going through right now. I read your story over and over again and realized that you are an epitome of strength, you have it in you all you need is to gather courage and you can be born again from the ashes. You are only 48, and your story is so inspiring not only for me but all of us at this forum right now who need a little hope and sunshine every day.

I think you should continue your treatment. Try consulting an expert and you never know - you might not have to go through all the pain. 

You have been amazing on this journey. Just put yourself together and I am sure you can be healthy again rejoining your spectacular life. Wishing you all the health and good luck. You are in my thoughts right now. Hugs.  https://voiceofcancerpatients.com/

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