Question on pains few weeks after end of Folfox

Please feel free to read, share your thoughts, your stories and connect with others!
Brearmstrong
Posts: 27
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Question on pains few weeks after end of Folfox

Postby Brearmstrong » Wed Oct 18, 2017 9:36 am

I realize that i just kinda barged in on this forum several months ago without introducing myself. How rude :shock: BUTT, I read everyone's responses several times a day as I go blindly through this fight; you all make it so much easier and education is the key! So I know AJQ posted similar question last week about pain and he is only 1/2 way through chemo and the pain was confirmed as multiple peritoneum/pelvic mets. BUTT, I want to ask again because I do have lots of low grade pains throughout my abdomen and what I think is ovary pain on one side. These all started around round 9 of 12 rounds of folfox and now I'm 3 weeks post last round and the pains continue. Did anyone have this? Nothing that takes my breath away or even requires tylenol but pain non the less. I have very high risk for seeding because my appendix ruptured and I fear HIPEC is in my future BUTT hoping and praying that my CT scan results this Friday will show that it's just pain from folfox, being constipated frequently, the fact that I have 50 less lymph nodes than before, or going into menopause from the chemo. ANYONE OUT THERE TO EASE MY WORRY WITH STORIES THAT ARE SIMILAR AND TURNED OUT TO BE NOTHING? Yes, that's me shouting out there because I'm in a complete panic. I don't know how oncologists can sleep at night knowing that they need to tell their patients bad news, they truly have difficult jobs...

Brenda
45 Female Jan 2017 after appendectomy
DX: (CC) tumor started in appendix and went through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
No mutations- just bad luck
FOLFOX April-sept 2017
Clean CT scan July 2017 watching one small lung nodule 4mm
October 2017 clean CT scan 4mm lung nodule stable, new 2 mm nodule watching

User avatar
bitchslapped
Posts: 1349
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Question on pains few weeks after end of Folfox

Postby bitchslapped » Sun Oct 22, 2017 4:58 pm

Well Brenda, how about an official welcome to the forum then! Wish I could help you w/your question, but this reply will bump you up @ least. Your symptoms c/b from any # of things which is part of the frustration, however bouts of constipation can cause all kinds of discomfort. My mother suffered miserably w/IBS for so many years. My BFF had intermittent upper right side near diaphragm - dull aching/burning alternating w/sharp pain, sometimes radiating to upper right back shoulder area, then couple months later to lower back. All sporadic.

Two things were going on: gastritis dx'd first, then appendiceal cancer w/spread to peritoneum( as you might remember).

Let us know how CT results went.

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

Lee
Posts: 5258
Joined: Sun Apr 16, 2006 4:09 pm

Re: Question on pains few weeks after end of Folfox

Postby Lee » Sun Oct 22, 2017 7:13 pm

Yes, let us know how the CT goes.

So sorry you were over looked. I usually try to look for 0 responsers and like BS bump people back up.

I too don't have a lot of offer. I was told any pain lasting longer than 2 weeks needs to be checked out.

If you are constipated a lot, try increasing your water intake. It might help with some of the pain.

Remember there are options out there if your worst fears come true. Believe me many people are beating this cancer today. When I was diagnosed 13+ years ago, FOLFOX was new and a game changer. All the testing they do on the tumors was another big game changer.

Immunotherapy is the next new big game changer. BeansMama went from no surgery, every conventional chemo failed her, to she is recovering from surgery. Read about Sleen journey. She went from months to live to being NED today.

So know there is hope, all the best.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Brearmstrong
Posts: 27
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Question on pains few weeks after end of Folfox

Postby Brearmstrong » Mon Oct 23, 2017 6:53 am

Thanks Lee and BS. My CT scan went well. My spleen is still enlarged and the two lung nodules are stable. Oncologist thinks the pain is just from the Folfox taking it's toll and the surgery but I didn't have any pain the first 1/2 of the folox treatments. We are just on watch and wait for any peritoneum spread (convinced that this what this is) as the CT scan, MRI's and PET scans don't pick them up until they are bigger. I'm trying to be happy for the clean scan but I know that the next two-5 years are so crucial. If it spreads to the peritoneum, my oncologist knows that I'm off to the big city (MSKCC) to see about HIPEC and a specialist in appendix cancer. They've treated many where I am now (At the Yale Cancer Center) but once it spreads, I know I"m in trouble.

Everyone have a great, pain free day!!

Brenda
45 Female Jan 2017 after appendectomy
DX: (CC) tumor started in appendix and went through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
No mutations- just bad luck
FOLFOX April-sept 2017
Clean CT scan July 2017 watching one small lung nodule 4mm
October 2017 clean CT scan 4mm lung nodule stable, new 2 mm nodule watching

nbrandt
Posts: 470
Joined: Sun May 01, 2011 7:42 pm
Facebook Username: craig.brandt

Re: Question on pains few weeks after end of Folfox

Postby nbrandt » Mon Oct 23, 2017 11:45 am

Hi,
My story is similar with colon cancer started in appendix. Just wanted to share I had an enlarged right ovary on my scans as I was doing Folfox. My double cousin diagnosed ovarian cancer while I was doing Folfox. When I finished I a
Had an ultra sound no ovarian cancer. 6 months later ovary returned to correct size. My pain must have been constipation.

Told by Mayo in Rochester I was in the group most likely to recur. We put our finances in trusts and learned to live scan to scan.
My survival percentage was low. But my sister told me there is a percentage so someone survives and it might as well be me.

I too used this site and had plans to go to Mssk if a recurrannce for hipec.

My Mayo Oncologist retired during my year four checkup. We discussed that doctors do not know why some people survive and others are still here. He said important for me to stay vigilant with cancer screenings.

Mayo released me Year Five. Back to my Primary. Just had my colonoscopy. Graduated from three years to five year colonoscopies.

Sending support and prayers.
NBrandt
DXCCT3N2aMx 5/20LN
Folfox10/10-4/11
Scan 10-13-10,4-4-11,7-4-11,9-22-11,4-9-12,9-24-12,10-1-13,4-9-14,9-17-14,9-10-15,9-15-17NED,
CEA 1. Pre .6 7-4-11 .7 9-22-11 .6
1-13-12 .9 4-9-12 .7 9-24-12 .6 1-4-13 .8 10-1-13 .8 4-9-14 .7 9-17-15.8
Courage, Hope, Health

Brearmstrong
Posts: 27
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Question on pains few weeks after end of Folfox

Postby Brearmstrong » Tue Oct 24, 2017 1:59 pm

NBrandt,

Your message gave me lots of hope. I'm so happy for you to have passed the 5 year mark. I know too that my survival chances are lower for people in the same situation but with primary in the colon rather than the appendix. I try not to think about it and search for success LONG term survival stories for appendix cancer. They can be very hard to find which keeps me up at night. BUTT, this group has been so helpful and I just try to hang on every bit of information the members share so that I can be informed if things take a turn. I don't trust the CT scan-wish I did but I just know that they are little tiny buggers that are giving me the burning pain but radiologist can't see or doesn't know how to find... my nature though is to be skeptical of everything- not good for a cancer patient :D
45 Female Jan 2017 after appendectomy
DX: (CC) tumor started in appendix and went through colon wall
Adenocarcinoma w/ mucinous features 4.1cm
mod diff G2 T4aN2
Stage IIIC
nodes 8/50
CEA 4.6 after surgery < .05
margins clear
No mutations- just bad luck
FOLFOX April-sept 2017
Clean CT scan July 2017 watching one small lung nodule 4mm
October 2017 clean CT scan 4mm lung nodule stable, new 2 mm nodule watching


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Baidu [Spider], Google [Bot], Yahoo [Bot] and 34 guests