38 with stage IV rectal cancer with spots on the liver

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brownjo3
Posts: 3
Joined: Mon Feb 15, 2016 11:24 am

38 with stage IV rectal cancer with spots on the liver

Postby brownjo3 » Wed May 04, 2016 4:34 pm

hi everyone! I am 38 years old and was diagnosed with rectal cancer with metasis to the liver in February. I have been through 6 chemos. I am on Avastin, ironitecan, and FU5. The only side effect from chemo is I get cold sores occasionally and constipation occasionally. I lost about 15 pounds when I first found out, but I have put most of the weight back on. I had one scan about 3 weeks ago and showed a 50% reduction in the liver spots. The plan is at least two more chemos and but probably 4 more since I am handling it so well. I literally feel as healthy as I ever have. Is this normal?? I want to do surgery to get the crap out of me, but the James(OSU cancer center) says since the chemo is working we will continue. Looking for some comparable positive stories! I have 3 boys under the age of 6
Last edited by brownjo3 on Wed May 04, 2016 6:50 pm, edited 1 time in total.

crazylife
Posts: 255
Joined: Wed Dec 30, 2015 11:29 am

Re: 38 with stage IV rectal cancer with spots on the lungs

Postby crazylife » Wed May 04, 2016 6:35 pm

Are you able to travel to a major cancer center like MSK for a second opinion? Do you have spots in liver or lungs? Your post says liver but the title says lungs. There is something called the HAI pump which can help shrink tumors (think it works better than chemo) to get you to a resectable state.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

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elise
Posts: 1519
Joined: Fri Apr 27, 2012 5:09 pm
Location: Ontario (Canada)

Re: 38 with stage IV rectal cancer with spots on the lungs

Postby elise » Wed May 04, 2016 6:51 pm

Hello BJ3 :)

I'm different but some of the same :)

I was dx with stage 2 at age 30 then a reoccurrence to stage 4 with liver met at age 34. Personally I'd do chemo until you are a surgical candidate. If you don't wind up being a surgical candidate then check out HAI at MSK for sure. BUTT your best chance of long term survival is surgery so keep tolerating that chemo!!! (I won't lie, I'm kinda jealous. That S*** kicks my BUTT!)

Cheers to continued tolerate of chemo :)

Elise
2012
Feb - Stage 2 (T3 N0 M0) CC @ 30
Mar - R hemicolectomy, 18 LN
May-Nov 6 - Chemo (8 Xeloda)
2013
Feb - NED
2014
Feb - NED
May - Stage 4 - 1 liver met @ 32
Jun - Liver resection
Oct - CLEAN SCAN
Aug-Jan - FOLFOX 5 rounds, 5FU X 6
2015
Ap, Oct - NED
2016
Mar - NED

brownjo3
Posts: 3
Joined: Mon Feb 15, 2016 11:24 am

Re: 38 with stage IV rectal cancer with spots on the liver

Postby brownjo3 » Wed May 04, 2016 6:51 pm

HI, I actually had a 2nd opinion at MSK before I started chemo and they agreed with the plan. With that said, after scan 2 I am going to send the CT scan to them to look at. It is mets to the liver, not lungs (Thank God, just a typo)

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Jack&KatiesMommy
Posts: 610
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: 38 with stage IV rectal cancer with spots on the liver

Postby Jack&KatiesMommy » Wed May 04, 2016 7:47 pm

Please please please go to MSK and get an HAI pump. I was told in 2011 (at the James) that I had 12-22 months to live if they did everything they could (chemo they said was my only option as I had tumor so throughout my liver.). I sought a second opinion and ultimately landed at MSK with Dr. Kemmeny. It will be 5 years since my diagnosis this August. I would not be here now if not for Dr K and MSK. The James wanted to "continue chemo."

Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

Nik Colon

Re: 38 with stage IV rectal cancer with spots on the liver

Postby Nik Colon » Wed May 04, 2016 10:10 pm

I was supposed to do 6 tx b4 surgery, but kept telling the doc I wanted surgery, so he agreed for me to get a scan and bumped my surgery up after scan showed 50% shrinkage and the surgeons agreed I could (and I think he was tired of me mentioning it, my onc got annoyed easy, I am not with him now as he was kinda rude and arrogant). I'm not saying it was the right thing, but I wanted it done asap! I know how you feel.

brownjo3
Posts: 3
Joined: Mon Feb 15, 2016 11:24 am

Re: 38 with stage IV rectal cancer with spots on the liver

Postby brownjo3 » Sat May 07, 2016 9:19 pm

Cynthia - Thanks for your post. You inspired me to call my doctor at MSK, Dr. Rona Yaeger and have her look at CT scans from a couple of weeks ago and to give a 2nd opinion that 12 chemos is the way to go. I may try to go up there next week. This week is Chemo #7 at the James on Wednesday. We also live in Columbus (Gahanna area). My main doctor at OSU is Dr. Wu. If you ever want to get together, let me know! My email is johnbrowniii@gmail.com.

Still feeling great minus this constipation!


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