Stop... the Bus, let me off

6 Posts | Page(s): 1 

Stop... the Bus, let me off

by peteperry on Mon Mar 26, 2018 05:26 PM

Quote | Reply

At the age of 52  in August 2017, I had a carcinoid tumor removed from my  ileocecal valve area of my small intestine. It was found at the time of a colonoscopy. The thing was "huge" according to the surgeon (5cm x 3.2 cm x 1.2 cm) and was well differentiated. It was classified as a G1 with T3 N1 and a K-67 of <3%. They did a right hemi-colectomy and removed some lymph nodes as one was metastasized.  I've had follow up MRI and CT scans since. There are lesions on the liver, but they are suspected to be simple fatty cysts. 

In October the diarrhea returned...  I simply resigned my self to it. Now here we are in March and my oncologist did my first CgA and Serotonin draw. Both are slightly elevated with the CgA being 133 ng/mL (lab says high is >140) and my Serotonin is 237 ng/mL (lab says high is >244)

Oncologist wants to do a gallium scan. I've said I want to wait until the fall, as I am tired of being a cancer patient and want to simply not have to schedule around visits and tests. 

I’m told that this is a slow caner, so I am feeling like putting things off for 6 months can’t be too detrimental to my over all health. I’m not convinced that my CgA and Serotonin are outrageous and my diarrhea is cyclical as it comes and goes….What do you all think? 

RE: Stop... the Bus, let me off

by Leyamichelle on Thu Mar 29, 2018 02:14 PM

Quote | Reply
I personally don’t think waiting is a good idea. Why take a chance? Don’t put your life in danger! Just do it!

RE: Stop... the Bus, let me off

by lynnehaines on Wed Apr 25, 2018 04:37 PM

Quote | Reply

On Mar 26, 2018 5:26 PM peteperry wrote:

At the age of 52  in August 2017, I had a carcinoid tumor removed from my  ileocecal valve area of my small intestine. It was found at the time of a colonoscopy. The thing was "huge" according to the surgeon (5cm x 3.2 cm x 1.2 cm) and was well differentiated. It was classified as a G1 with T3 N1 and a K-67 of <3%. They did a right hemi-colectomy and removed some lymph nodes as one was metastasized.  I've had follow up MRI and CT scans since. There are lesions on the liver, but they are suspected to be simple fatty cysts. 

In October the diarrhea returned...  I simply resigned my self to it. Now here we are in March and my oncologist did my first CgA and Serotonin draw. Both are slightly elevated with the CgA being 133 ng/mL (lab says high is >140) and my Serotonin is 237 ng/mL (lab says high is >244)

Oncologist wants to do a gallium scan. I've said I want to wait until the fall, as I am tired of being a cancer patient and want to simply not have to schedule around visits and tests. 

I’m told that this is a slow caner, so I am feeling like putting things off for 6 months can’t be too detrimental to my over all health. I’m not convinced that my CgA and Serotonin are outrageous and my diarrhea is cyclical as it comes and goes….What do you all think? 

Hello, I like your Subject Line. 

I know how that feels!  I'm 70 and I didn't expect to be "retired by AdCC" so early in life.  Long story short I'm at the inoperable but not suffering stage.  At least compared to the pain of some cancers I only experience increasing fatigue, nausea and diarehha.  Radiation would only decrease my ability to see, hear and eat; chemo won't work on this one.

I find that using marijuana aleviates the nausea and diarehha sucessfully.  It may also have caused the lack of growth that the last scans show.

Mostly I spend time learning to do less and looking into the End of Life in WA laws and the Death with Dignity options.  Since I have no way to estimate my time or get a more accurate prognosis, I was just wondering if there is anyone else out there in the same boat.

Just having a cancer buddy would be nice.  Lynne  

RE: Stop... the Bus, let me off

by peteperry on Wed Apr 25, 2018 05:38 PM

Quote | Reply

Greetings Lynne,

 I am sure that there are many of us who struggle with the idea of not knowing how long .....

I am with you on the qualtity of life issue. I have come to realize that, in so many ways, my oncologist is only able to treat symptoms. The efforts made to shrink tumors or slow the progress often subtracts from the quality of life; just as you suggest in your commment about the radiation.

I have friends that have cancer too, but they seem to all be patients with a cancer that has some type of curative treatment plan. This neurocrine stuff, once it escapes the gastro-intestinal track seems to be unstoppable... 

Well, everyone seems to have a drawer or closet in their house that needs to be cleaned out, but never seems to be attended to. I'm putting my cancer in such a drawer and waiting for a rainy day to clean it out. 

Well wishes to you and thanks for taking the time to respond.

Cheers my friend,

Peter

 

RE: Stop... the Bus, let me off

by lynnehaines on Wed Apr 25, 2018 06:29 PM

Quote | Reply

On Apr 25, 2018 5:38 PM peteperry wrote:

Greetings Lynne,

 I am sure that there are many of us who struggle with the idea of not knowing how long .....

I am with you on the qualtity of life issue. I have come to realize that, in so many ways, my oncologist is only able to treat symptoms. The efforts made to shrink tumors or slow the progress often subtracts from the quality of life; just as you suggest in your commment about the radiation.

I have friends that have cancer too, but they seem to all be patients with a cancer that has some type of curative treatment plan. This neurocrine stuff, once it escapes the gastro-intestinal track seems to be unstoppable... 

Well, everyone seems to have a drawer or closet in their house that needs to be cleaned out, but never seems to be attended to. I'm putting my cancer in such a drawer and waiting for a rainy day to clean it out. 

Well wishes to you and thanks for taking the time to respond.

Cheers my friend,

Peter

 

Greetiings to you Peter,

Thanks for the reply.  When I first got diagnosed I was still running my manufacturing company in 2014 but as things progressed my daughter took over.  I still help her a bit but cancer and facing the end of my life has been a wonderful experiment in moving past who I was and into who I am - daily.  I realize none of us get out alive, duh.  Cancer has helped me realize how precious each moment is and I try not to waste it in self pity or depression.  Practice makes it fun. 

I hope you have family and friends to share your days with.  And of course please feel free to keep me posted.  Have you read Being Mortal or When Breath Becomes Air?  Both books written by neurosurgeons about their own experience with terminal cancer.  I found them profoundly soothing oddly enough.  They made me feel less alone with my cancer.

Also I took to writing a blog to myself.  Just to kind of get familiar with myself in this situation.  It also helps.  I have been suprised by my own insights and discovered that I can have a very black sense of humor at times that jolts me out of the blues.

I wish you all the luck and hope to hear from you again, All the Best, Lynne  

RE: Stop... the Bus, let me off

by lynnehaines on Mon Aug 13, 2018 11:00 PM

Quote | Reply

On Apr 25, 2018 5:38 PM peteperry wrote:

Greetings Lynne,

 I am sure that there are many of us who struggle with the idea of not knowing how long .....

I am with you on the qualtity of life issue. I have come to realize that, in so many ways, my oncologist is only able to treat symptoms. The efforts made to shrink tumors or slow the progress often subtracts from the quality of life; just as you suggest in your commment about the radiation.

I have friends that have cancer too, but they seem to all be patients with a cancer that has some type of curative treatment plan. This neurocrine stuff, once it escapes the gastro-intestinal track seems to be unstoppable... 

Well, everyone seems to have a drawer or closet in their house that needs to be cleaned out, but never seems to be attended to. I'm putting my cancer in such a drawer and waiting for a rainy day to clean it out. 

Well wishes to you and thanks for taking the time to respond.

Cheers my friend,

Peter

 

Hi,  

I'm still here!  Havent gotten my latest MRI back.  It is 6 months since last one.  Can't wait to see whats going on.  I am very tired between bursts of activity.  Hung 22 paintings at my recent art show.  Whew wiped me out.

I'm using Mary Jane to keep an even keel on my nausea, diarreha and anxiety.  I titrate about 5smg of sativa edible every 3 or 5 hours daytime and 10mg Indica at bedtime.  It keeps me comfortable and the cannabanoid receptors in my cancer cells soak it all up, so I don't get high or weird.

It amazes me because I was anit MJ because as a recovering alcoholic of 29 years I thought it was a gateway to drinking.  Turns out I am wrong about that.  Thank goodness.

I will post my results when I get them.

Meanwhile, I trust you are doing okay and look forward to hearing from you.

Ciao,

Lynne

6 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.