New member seeking support

Please feel free to read, share your thoughts, your stories and connect with others!
Ranunculaceae
Posts: 5
Joined: Thu Dec 28, 2017 10:49 am

Re: New member seeking support

Postby Ranunculaceae » Wed Mar 28, 2018 6:49 pm

Hey Trevor, sorry you are going through this! I had a 4 cm ascending colon tumor with a ton of large bulky lymph nodes and a liver met. I ended up having pre-op chemo to shrink everything down before surgery. Had to have an open resection to get it all out, and I did have my ileocecal valve removed, 40% of my colon, 32 lymph nodes and just a small piece of my liver. I'm 8 weeks out today and no complications from surgery. My bowels work just fine, really no changes from previous except maybe a little more urgency sometimes, but no big deal. Was able to run 10km today :) I walked A LOT right after surgery (up to 35 laps of the hospital unit at a time - boring but I think it helps recovery!), made sure to keep my pain under control and then made sure to get lots of protein for a few weeks after surgery (used a diet tracking program and calculated about 1.5 grams of protein per kilogram a day so that would be about 160 or more grams of protein a day for you). I found this resource really helpful for talking to my son (5) http://www.tellingkidsaboutcancer.com/A ... iateAdvice and I set him up with a counselor at school and some art therapy through our local cancer center. Best of luck to you!
34 year old female
Stage IV Colon Cancer Aug 23, 2017
Adenocarcinoma of the right ascending colon with extensive lymph node involvement and a solitary liver metastasis.
Preop chemo starting with 2 cycles of CAPOX in Sept 2017 (hospitalized for reaction to Capecitabine) switching to FOLFOX with panitumumab x 6 cycles.
Open hemicolectomy and liver resection Feb 1, 2018. Nearly complete response, scattered tumor cells at primary tumor site and in 2/32 lymph nodes.
Ongoing FOLFOX for 6 more cycles.

DarknessEmbraced
Posts: 3157
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New member seeking support

Postby DarknessEmbraced » Thu Mar 29, 2018 9:08 am

Hi Trevor,

I'm sorry you're going through this and hope you get more information soon!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

User avatar
CRguy
Posts: 9644
Joined: Sun Feb 10, 2008 6:00 pm

Re: New member seeking support

Postby CRguy » Sun Apr 08, 2018 9:04 pm

Reviresco wrote:I will post again after meeting with the surgeon.
Trevor

Hey buddy
just bumping this up to see
if you need some homies
with support ...
in your court !

Best wishes
and Cheers on the Journey
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Reviresco
Posts: 7
Joined: Mon Mar 26, 2018 3:47 pm
Contact:

Re: New member seeking support

Postby Reviresco » Sun Apr 22, 2018 1:26 pm

Thanks again to everyone for the encouragement!
I had surgery (LAR right hemicolectomy) on 4/4/18. All of the news since then has been good. One of 25 lymph nodes had cancer in it. My tumor, which was large (9.5 x 5.5 x 2.5 cm) had invaded 5 of the 6 layers of the colon wall, but did not get through that last layer! My CEA level was 21.5 two days before surgery, and dropped to 3.9 within two weeks after surgery. My oncologist recommends four rounds (three months) of CAPOX. I qualify for the new protocol set by the IDEA Collaboration. I will be getting my port next week and starting treatment on April 30. I know there are a lot of threads about coping with treatment, but if anyone has any recommendations specific to CAPOX, please let me know!
Sending love from Maine!
41 year old male, dx CC 3/22/18
9.5 x 5.5 x 2.5 cm tumor in ascending colon. T3N1Mx
MSI-H, Lynch Syndrome (PMS2 mutation)
4/4 LAR right hemicolectomy
1 of 25 lymph nodes, clear margins, no LVI, no tumor budding
May - August - Four cycles of Capox (Capecitabine and Oxaliplatin)
8/27/18 CT scan shows one liver spot, 1.4 cm
9/4 MRI scheduled to get better look at liver spot
CEA: 21.5 on 4/2; 3.9 on 4/19; 1.4 on 8/7

NHMike
Posts: 1805
Joined: Fri Jul 21, 2017 3:43 am

Re: New member seeking support

Postby NHMike » Sun Apr 22, 2018 5:03 pm

Reviresco wrote:Thanks again to everyone for the encouragement!
I had surgery (LAR right hemicolectomy) on 4/4/18. All of the news since then has been good. One of 25 lymph nodes had cancer in it. My tumor, which was large (9.5 x 5.5 x 2.5 cm) had invaded 5 of the 6 layers of the colon wall, but did not get through that last layer! My CEA level was 21.5 two days before surgery, and dropped to 3.9 within two weeks after surgery. My oncologist recommends four rounds (three months) of CAPOX. I qualify for the new protocol set by the IDEA Collaboration. I will be getting my port next week and starting treatment on April 30. I know there are a lot of threads about coping with treatment, but if anyone has any recommendations specific to CAPOX, please let me know!
Sending love from Maine!


I'm glad that things are going well for you. I had round 6 of CAPOX two weeks ago and it's been rough. You're fortunate that you're starting in the near future when temperatures are relatively warmer so that you don't get hit as hard with cold sensitivity. The side-effects from CAPOX are pretty close to those of FOLFOX - CAPOX gives you pills for 5FU instead of having to carry a pump around. Your oncologist should provide you with a chemo training session which goes over the side-effects, what to avoid, what to do in an emergency, etc. But we don't always absorb it that well in the training session.

The cycles went like this for me: first day - in hospital for infusion which lasts about 1/2 day or a bit longer. They take your blood, get results, you meet with the oncologist to go over the lab work and any other issues, then get the infusion. You take Xeloda (or generic) pills in the morning 30 minutes after food with water and then you do it again 12 hours later. You take the Xeloda pills for two weeks and then have a week off and then you do the next cycle.

The side effects are cumulative. For me, it wasn't so bad the first cycle but the second cycle hit me like a ton of bricks in terms of side-effects - basically everything that i had in the first cycle only stronger and longer-lasting. The side-effects from the Oxaliplatin will diminish with time while the side-effects from the Xeloda will increase as you take it for two weeks. For me, the side-effects from the Oxaliplatin are:

- Neuropathy in fingertips (tingling)
- Cold sensitivity in the fingers, toes, eyes, nose, lips
- Throat-closing feeling drinking cold liquids (your throat doesn't actually close, it just feels like it; sometimes it feels like drinking glass)
- Calf cramps (the Oxaliplatin seems to drain electrolytes - an electrolyte supplement can help, the oncologist might add electrolytes to the infustion)
- First bite shock - an electric-like shock when you take your first bite of food
- Painful tears
- Fatigue
- Nausea (they give you drugs to suppress this and it works for three days)

The side-effects from Xeloda for me are:

- Arthritic hands and feet "Hands and Feet"
- Low red blood counts which can result in fatigue
- Low white blood counts which can greatly increase susceptibility to getting sick
- Peeling skin on your fingers and toes
- Brown marks on your hands and feet

Things to avoid:

- Getting sick
- Getting cuts as they take longer to heal
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal


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



Who is online

Users browsing this forum: No registered users and 56 guests