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Just joined, wanted to get some firsthand feedback

EverDownward's picture
EverDownward
Posts: 4
Joined: May 2018

Nice to meet you all! First and foremost, I'm just really thankful a forum like this exists. I was pretty certain it was, but I wasn't certain, if that makes any sense. I've never searched for a forum for cancer survivors, after all. Although, I'm not sure why I hadn't.

So, a bit of history. I just turned 30 last month, and I was diagnosed with Stage IV Colon Cancer in February of 2017. I've been doing remarkably well with treatment, according to my oncologist, and so far my CEA levels are residing at 8.8% with just maintenance chemo alone. I feel very fortunate and blessed that I've managed to live this long. I was honestly a little afraid I wouldn't make it to 30 when I was diagnosed. But yeah! So far, things are going pretty okay...for the most part.

This topic is being made because I was curious to know if any other survivors have suffered from..uh..."episodes" of the colon cancer "acting up." What I mean is that I'll go for several weeks up to a couple of months without a lot of trouble, but then one day I'll be in recurring pain and, the worst, frequenting the bathroom to expel the bleeding in my colon. Sometimes these episodes can last anywhere from several hours to several days at the worst, and at the worst moments I'll be going back and forth to the toilet every five minutes. It's that annoying.

So, I guess my question is: Does anybody else experience anything like this? Where you'll be doing fine for a while and then BAM! Constant pooping to relieve the blood from the overactive tumor? Thanks for the feedback, I really appreciate it!!

Annabelle41415's picture
Annabelle41415
Posts: 6347
Joined: Feb 2009

First off welcome to the board you never wanted to join but glad you found us.  The expelling of large amounts of blood is concerning and I'm wondering if you could let us know when your last colonoscopy was done.  I'm glad that things seem to be going well on maintenance treatment but you need to know where the bleeding is coming from.  Sometimes it could be a hemmorhoid that keeps opening up but that needs to be done by a scope to fine out why.  Please talk to your doctor about this and hope that you can get a better answer to rest your mind.  If you need further information, please let us know as we are a very active and caring group that can help you get through this.

Kim

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

There is another member here (Ugur) who had similar problem. Are you getting Avastin with your chemo? That prohibits The blood vessel formation for the cancer leading to cell necrosis and bleeding. 

Wish you speedy resolution for your problems.

EverDownward's picture
EverDownward
Posts: 4
Joined: May 2018

Ah, yep, I'm receiving Avastin for treatment at the oncology center and taking Xeloda at home. The nurses did tell me it could lead to bleeding, but I thought that meant I would be more susceptible to bleeding from, like, skin wounds, scratches, etc. I didn't expect it could affect the tumor in such a way.

When I was on heavy chemo, there was no blood in my stool. So maybe it really is just the avastin. I'll have to call my oncologist Monday and talk about it.

Thanks Kim, and darcher. I'm hoping the problem has already been identified in the Avastin and it's not something serious. If my oncologist thinks further action needs to be taken I'm sure we'll plan something out.

Annabelle41415's picture
Annabelle41415
Posts: 6347
Joined: Feb 2009

I've heard of that causing problems with bleeding before.  Hopefully it will subside.  It's good that you keep the doctor informed especially when you aren't sure about something they haven't explained well enough.

Ki8m

darcher's picture
darcher
Posts: 257
Joined: Jun 2017

  At first when I was diagnosed it bled like a stuck pig.  A week or so later we took the little ones to an amusement park and I felt off as if I was filling up inside, you know the feeling. I had to flush twice to rid the evidence of bleeding.  That was scary.  I called the ER in a panic thinking this was the end. Turned out the tumor was a bleeder.  Once I started the treatments the bleeding stopped and haven't bled since then.  It's been nearly a year and I just finished the mop up chemo a few weeks ago.  If you're having bleeding episodes at a year out after treatment I would think something isn't right.  You really need to get your doctor up to speed on this asap.  We're here for you if you need further help or just to chit chat.   We are a unique group, one that won't judge or dismiss you, that's for sure.

 

kim_dude
Posts: 7
Joined: Dec 2017

What drugs are you on?  I'm on avastin as well as xarelto so am prone to bleeding, infrequently from the colon but frequently from my ileostomy.  I'ts not an uncommon affect for what I'm on provided it's not large volumes.  PS- Everything looks like a large volume but bacially if it's not affecting my blood counts or volume it's not an issue.

EverDownward's picture
EverDownward
Posts: 4
Joined: May 2018

Yeah, it's weird. My hemoglobin levels are fine and my cancer markers are receeding, so I'm not super worried about it but I am a bit concerned.

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