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Hello from a newbie

Trubrit's picture
Trubrit
Posts: 1619
Joined: Jan 2013

Hello all!

I joined this forum today, January 1st, and already feel inspired and uplifted. 

I was diagnosed with stage 3 colorectal cancer on November 13th last year. A colonoscopy discovered that I had a complete blockage of the rectum and I underwent a bowel resection November 23rd. On December 17th I had a port inserted.

My first CT scan showed no spread but my CEA is rising so I am heading for a PET scan on January 10th.  First though I get to have another colonoscopy this coming Thursday (3rd).

One of the biggest helps so far has been the love, prayers and support of family, friends and even people who I've never met, and that is why I decided to join this group. I know I can support others and hope in return to find support myself. 

Its odd being the one with cancer. Reactions of others has been facinating. I intend to be my normal (that's debatable) boisterous self until I am bought low by whatever side effects the chemo and radiation have to offer; then I intend to bounce right back. 

I look forward to having you join me on my journey, and I promise to be here for you too. 

Onward and upward. 

Chelsea71
Posts: 1170
Joined: Sep 2012

Welcome,

Joining this discussion group is a smart move. The emotional support is wonderful and it's a great way to exchange practical info. I wish I'd joined sooner, but I'm here now. Looking forward to getting to know you.

Chelsea

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

sorry that you have to meet us all under these conditions, but welcome.

I'm one year ahead of you on this journey... last November I recieved my bad news and I must say, your attituded is a good way to start this battle. don't ever let anyone or anything take that away from you.

 

If I can offer some advice that is:

- YOU need to take control.

- YOU need to ask lots of questions.

- YOU need to challenge anssers that you do not understand or that you do not like

- And, when you feel like crap from some side effect or something... YOU need to speak up and ask for help.

 

there are people all around you that are going to be at your beckon call. They WANT to help you. It will be humbling. There will be times when you do not want to accept their help, their care, the free meal or the extra questions... but it is their way to give back or their way to help you. Not sure if you've been told which chemo path you're going to be going on, but please know that the first six months are the most difficult. there is ALWAYS light on the other side of the heavy chemo meds and treatments. 

there is goodness in everyone around you and I hope you feel and except the kindness, comfort and love from your family, friends and new friends that you are about to meet. Someone told me that there are nausea meds for every type of nauseous feelings.... and no doctor or nurse can read our minds, so we MUST speak up and explain how we feel. and, there are meds to help us manage everything. don't forget to ask for help.  (sorry if this is scary, but trust me... this is advice that someone gave me, and I feel compelled to share).

post often and share your feelings, thoughts, fears and questions.

lots of help here.

hugs from Ohio.

Joe

Dyanclark's picture
Dyanclark
Posts: 271
Joined: Apr 2012

But keep us informed, my husband has the cancer.  You learn a lot when you read everyones post.   Any chemo or meds you take most have been on and can give you some good information.

Trubrit's picture
Trubrit
Posts: 1619
Joined: Jan 2013

The meds they are talking about right now are Folfox (5- Fluorouracil, Leucovorin, Oxaliplatin) for the high dose chemo and then Flurouracil with pump or Capecitabine oral when I have the radiation. 

I live a full 300 mile round trip from the nearest big town, so I do believe they talked about a pump that administers the chemo over a period of a week, so I only have weekly visits for the high dose chemo, and then of course I have to live in the big city for the  5-6 weeks of radiation. 

I promise to pick up on the abbreviations as I read more. Oh, and what does NED stand for?

 

 

 

 

Lovekitties's picture
Lovekitties
Posts: 2989
Joined: Jan 2010

We are never happy to have our numbers increase, as it means that someone else has been diagnosed with cancer, but we are glad you found us just the same.

NED = No Evidence of Disease

It does not mean cured.  It just means that if there is cancer present it may be too small to detect yet.

Living so far from a big town may give you extra things to deal with.  As I am sure you already know, planning ahead will be a must.  Others can give you their own list of side effects from your chemo combo and anything, either meds, over the counter stuff or natural items which you may want to keep on hand should you get those side effects.  It seems the sooner you address the side effects the easier it is to minimize them.

Wishing you best outcome with your treatments.

Marie who loves kitties

Dyanclark's picture
Dyanclark
Posts: 271
Joined: Apr 2012

Drink tons of water, and a least 1 can of Ensure a day  2 cans  if you can stand the taste, Cafe Latte is the one they say has the best taste.   Nausea has not been a big problem with my husband but keep anti nausea pills on hand at all times.  Marinol has been a extreme help with appetite very expensive.  My daughter-in- law is a RN at UCLA and she says Marinol is very safe comes in a pill.

He is on chemo now, and has done most of the treatments you are about to get.

thxmiker's picture
thxmiker
Posts: 1253
Joined: Oct 2010

Welcome Trubit!

 

 I am in a similar situation for travel to get good medical help, for me it is just under 200 miles.  The price to pay for living in a beautiful small mountain town. The pump usually will go for 46-48 hours and is easily removable.

NED- No Evidence of Desease.   The Best Dx one will hear, although I have heard it twice, and I hope to hear it a third time this summer.  (There is a post that has all of the Medical Abbreviations for cancer. A good post to read.)  

 

Exercise, Baby Wipes, soft TP, and a good attitude will help ease the difficultis of Chemo.  No matter how horible I felt, I would still get out and take a walk. I always felt better after a walk. Many times I just went around the block for fear of a bathroom run. 

 

A good diet will also help during chemo.  When one is running to the bathroom up to 20 times a day, one needs to eat often to keep energy.  Bananas and Ginger helped me be able to get callories and eat ther foods.  Oatmeal was not bad either.

 

Best Always,  mike

Annabelle41415's picture
Annabelle41415
Posts: 4354
Joined: Feb 2009

First, welcome to the board. Wrote this long post last night and because the server was so slow, lost the whole thing so I'll try and remember. Glad that you found this site and it can be helpful and encouraging. There are a lot of people on here that have gone through exactly what you have or very similar so ask any questions that you might want to know. Any question is welcome.  Have you started treatment yet?  Good luck with the scope tomorrow and hope all goes well with the scan.  You have a great attitude and that will get you through a lot of the rough stuff.

Kim

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

hugs,

Pete

YoVita's picture
YoVita
Posts: 562
Joined: Mar 2010

You've already gotten some great advice from others.  I just wanted to say that I was diagnosed about three years ago with Stage IIIc rectal cancer and I'm still here and doing welll!  The first six months will be tough but you'll get through it.  I love your attitude - that will help.  This is a great group to ask the very practical questions that need asking.  Best wishes with your treatment. 

ron50's picture
ron50
Posts: 1309
Joined: Nov 2001

Sorry to see anyone new on the board. I was stage 3c colon. My only advice is do whatever it takes to beat it. Wishing you good health,Ron .

ron50's picture
ron50
Posts: 1309
Joined: Nov 2001

Sorry to see anyone new on the board. I was stage 3c colon. My only advice is do whatever it takes to beat it. Wishing you good health,Ron .

ron50's picture
ron50
Posts: 1309
Joined: Nov 2001

Sorry to see anyone new on the board. I was stage 3c colon. My only advice is do whatever it takes to beat it. Wishing you good health,Ron .

ron50's picture
ron50
Posts: 1309
Joined: Nov 2001

hit submit instead of back...Ron.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Welcome to this Board!

I too was dx Stage 3 rectal in 2009 and am currently NED.

Hang on for a bumpy ride--and here's to getting off the rollercoaster!!!

Hugs from California~

Tommycat

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Welcome to our group...you will find lots of support, advice...and hugs here.

 

Alex

marbleotis's picture
marbleotis
Posts: 507
Joined: Mar 2012

This is the group we all did not want to be in but.... are here for each other.  I am stage 3b signet cell.  Dx was 1/13/12.  Colon resection 1/31/12, 12 round Oxali and 5 FU, clean CT scans in Sept and great CEA numbers.  I year colonoscopy on 1/28/13. 

My advice:

  1. It is a process
  2. Stay positive
  3. For chemo diarreha use the BRAT diet (B=banannas, R=rice, A=apple sauce/unsweet, T=toast), very easy on tummy.
  4. Some days you will feel like crap, just let it be
  5. Neuropathy may happen - I got around treatment 5 of 12.  Still have but slowly getting better
  6. Keep only positive people around you
  7. Get a great Dr
  8. Do not google anything on cancer, only go to trusted sites
  9. LIVE!!!!!!

Keep us updated

Trubrit's picture
Trubrit
Posts: 1619
Joined: Jan 2013

What does it mean to 'Flag' a post? 

Is there a questions and answers about message board policy and how to's? 

I mean to be on here allot, so I'd better learn the ins and outs and find my way around. 

Thank you all who have posted. I really appreciate your comments and support. 

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