Endoscopy nurse with colon cancer

abrub

EndoRN1985 said:

What stage?

Hey Alice, thanks for responding. I actually spoke with the pathologist today, as we were in a procedure together at work. She feels pretty confident it began as appendiceal CA, and spread to the colon from there. I appreciated your response, because that encouraged me to talk to her. I since have a call out to Swedish hospital in seattle (only one locally that does HIPEC), as well as my local oncologist to see what the options are. Pretty fluid situation. They called mine stage 2 (no nodes) but with the rupture, high risk. What stage was yours at diagnosis? I'm slightly concerned about the CA 125 elevation; was that monitored in you? Thanks again!

 

Andrew

Sorry I didn't get back sooner

I've been dealing with more issues of my own.  I'm stage 4, but I've been living a healthy, normal life for the most part since diagnosis in 2007 (and with the exception of a couple of recurrences.) My appendix had ruptured, and spewed cancer around, but then it re-healed.  I have no lymph node involvement.My cancer markers (CEA and CA125) have all been within normal limits.

If this originated in the appendix, you absolutely want to get with an appendix specialist.  I've heard mixed reviews about Dr. Mann in Seattle.  The Seattle people I know have traveled to Dr. Sardi and Sugarbaker on the east coast.  I go to Dr. Paty at Memorial Sloan Kettering in NYC, tho their newer appendix specialist (he's been there 10 years now) is Dr. Garrett Nash.  (I know Swedish Hospital - my grandson was born there!  My kids live in Seattle.  I'm on the east coast.)

Feel free to private message me.  I will share my email with you, if you'd like.

I haven't been on this forum much lately, but am notified if there is a PM.  (I have a breast biopsy tomorrow - something is off in my mammo.)

Alice

abrub

EndoRN1985 said:

What stage?

Hey Alice, thanks for responding. I actually spoke with the pathologist today, as we were in a procedure together at work. She feels pretty confident it began as appendiceal CA, and spread to the colon from there. I appreciated your response, because that encouraged me to talk to her. I since have a call out to Swedish hospital in seattle (only one locally that does HIPEC), as well as my local oncologist to see what the options are. Pretty fluid situation. They called mine stage 2 (no nodes) but with the rupture, high risk. What stage was yours at diagnosis? I'm slightly concerned about the CA 125 elevation; was that monitored in you? Thanks again!

 

Andrew

PS - Re the systemic chemo

The systemic chemo given is the same as for colon cancer - Folfox or Capox.  I had mine after my debulking surgery and intraperitoneal chemo (with FUDR, a metabolite of 5FU).  I didn't have HIPEC, I had EPIC

EndoRN1985

abrub said:

Sorry I didn't get back sooner

I've been dealing with more issues of my own.  I'm stage 4, but I've been living a healthy, normal life for the most part since diagnosis in 2007 (and with the exception of a couple of recurrences.) My appendix had ruptured, and spewed cancer around, but then it re-healed.  I have no lymph node involvement.My cancer markers (CEA and CA125) have all been within normal limits.

If this originated in the appendix, you absolutely want to get with an appendix specialist.  I've heard mixed reviews about Dr. Mann in Seattle.  The Seattle people I know have traveled to Dr. Sardi and Sugarbaker on the east coast.  I go to Dr. Paty at Memorial Sloan Kettering in NYC, tho their newer appendix specialist (he's been there 10 years now) is Dr. Garrett Nash.  (I know Swedish Hospital - my grandson was born there!  My kids live in Seattle.  I'm on the east coast.)

Feel free to private message me.  I will share my email with you, if you'd like.

I haven't been on this forum much lately, but am notified if there is a PM.  (I have a breast biopsy tomorrow - something is off in my mammo.)

Alice

Thanks

Thank you Alice. I am stage 2, but I have concerns another shoe is going to drop. Every step of the way has had encouraging news, followed by just the opposite. The problem I have encountered is there is no way to know for sure where the genesis was. At this point, I'm just looking forward to chemo starting to hopefully stop anything in its tracks, if there. I unfortunately had a wound dehiscence and have had trouble with it closing, so I just hope we don't have to delay it any further. 

 

Did they find mets right away, or was it detected later? My appendiceal rupture was about 9 months prior to cancer being diagnosed after surgery (the colon biopsies just showed inflammation) I did have an elevated ALT and CA 125, but won't have those rechecked for several weeks. Thanks again!

 

Andrew

abrub

EndoRN1985 said:

Thanks

Thank you Alice. I am stage 2, but I have concerns another shoe is going to drop. Every step of the way has had encouraging news, followed by just the opposite. The problem I have encountered is there is no way to know for sure where the genesis was. At this point, I'm just looking forward to chemo starting to hopefully stop anything in its tracks, if there. I unfortunately had a wound dehiscence and have had trouble with it closing, so I just hope we don't have to delay it any further. 

 

Did they find mets right away, or was it detected later? My appendiceal rupture was about 9 months prior to cancer being diagnosed after surgery (the colon biopsies just showed inflammation) I did have an elevated ALT and CA 125, but won't have those rechecked for several weeks. Thanks again!

 

Andrew

Since mine was found on an ovary,

the mets were found first.  The tumor encompassing my ovary was found to have originated in the appendix, so they took my (healthy looking) appendix out. It was filled with tumor.  There ware also spots of cancer on my omentum and the outside of both my sigmoid colon and right colon, so I was reseceted in several places.  I do eat and function normally.  We don't know when my appendix ruptured, as it was fully healed at the time of my discovery surgery.

 

GLENV

CAPEOX TREATMENT FOR 3 MONTHS

sorry new to this disregard please

Cindit

EndoRN1985 said:

Kim

Hey Kim, thank you. I elaborated a bit above, and was hoping for some advice on dealing with the effects of chemo, particularly maintaining an active lifestyle with my job and two kids. I'm used to working irregular hours from being on call, but I think this might be on another level entirely. Thanks for your response! 

 

Andrew

mucinous and side effects of chemo

Hi! 

I have had 11 treatments with Folfox (onr of the drugs in that causes a lot of side effects) so I did some research and found that taking zinc supplements (30 mg a day) helped with the whole loss of taste thing and metal mouth. I only had one sore in mouth in the beginning. Then i did ice therapy on extremities and sucked on ice for entire treatment time. For nausea i used an aromatherapy nose inhaler of ginger (was advertised as motion sickness therapy). I used it right before therapy and t worked wonders and I still occasionally use it. I kept up on B complex supplements which i believe helped with my energy. I never felt tired or exhausted to the point i couldn't do anything but i am also in a trial of immunotherapy so maybe that helped. I never stopped exercising (I run and lift weights) except after surgery when i just walked. I hope this helps you and feel free to reach out. Good luck in your journey. You'll do fine! 

loikol

Please tell me, is it possible to undergo home treatment with such a diagnosis? My grandmother hasn't been walking for three years, she is paralyzed on the left side of her body. But she was diagnosed with colon cancer just two weeks ago. For a year and a half, a nurse (content removed by CSN) has been helping us take care of our grandmother. I am very pleased with the quality of her work. But do I understand correctly that with such a diagnosis, home treatment is out of the question? Or could we keep a nurse, subject to regular house calls? I would be grateful for any of your answers!

StonedCamaro

https://csn.cancer.org/discussion/comment/1654700#Comment_1654700

Hello Andrew. I've been on Capox since January. I rinse and gargle 3-5x a day w just warm water, salt and baking soda and haven't had any mouth or throat sores. Also, have found that using the Urea Lotions on my hands and feet has kept the Hand and Foot Syndrome at bay. At first only used lotion every other day, but now on round 4 of 6 of treatment, I apply it 3x per day. Flexitol is the Urea lotion brand I use.

Only other advice I can give is enjoy every morsel of the good days and give yourself Grace to rest on the bad days! Good luck and God bless you and your family.

Justfortoday1964

https://csn.cancer.org/discussion/319834/endoscopy-nurse-with-colon-cancer

Thankyou! Using your knowledge really educated me on terms I am encountering as a newly diagnosed colorectal cancer patient! I can imagine, the thought "It will never happen to me" entered your mind, as it did mine! Hope you and I can be encouraging others, on CSN in 20 years!!