One year in

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megan120
Posts: 127
Joined: Mon Jun 16, 2014 10:54 pm

One year in

Postby megan120 » Thu May 14, 2015 11:07 am

It's been one year since my diagnosis. I Had an appointment on Tuesday and learned that my last cea was <0.5, down from 8.4 when I was diagnosed. I also learned that there is no research out there for my progression, so now we are just winging it :shock: I knew all along that he hasn't seen my progression before and no one he has consulted with (which is many) has either, but it still caught me by surprise. So in two weeks I start back on avastin with my xeloda. I'm jumping back into maintenance chemo after a week off. Pet/ct in a few months. And then maybe surgery to finish my subtotal colectomy and reverse my ileostomy. But after that...? I'm thinking about getting his take on adapt, especially since I seem to have bad side effects on anything more than 500mg of xeloda twice a day. Thoughts anyone? 8)
36 year old mama to 3 (8,5,3)
Dx May 2014
Stage IV cc with met to cervix
2/134 pos LN
partial colectomy with temp ileostomy
folfox with avastin 6/14
Oct 14, hyst-mets to uterus, rt ovary implants
1/6/15 6 rounds of folfox
5/4/15 done with 28 tx chemo-rad
7/24/15 completion colectomy, NED!

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: One year in

Postby Steph20021 » Thu May 14, 2015 4:42 pm

Hi megan, im curious what traits about your progression is unusual? Is it because its all in pelvis?
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: One year in

Postby PainInTheAss » Thu May 14, 2015 5:31 pm

My tumor broke through my vaginal wall making me a technical T4b but vaginal invasion is very rare, so I too was told we don't really have any stats to go on. It's a wild card. Most colorectal T4bs have invasion through the colon wall into intestine, stomach or other organ. Not many into vagina. I was told I had a higher chance of spread to cervix, uterus or ovaries, so I opted to have all that removed to avoid a future surgery. The general gist that I got is that colon cancer that spreads to lady parts isn't as likely to spread to distant organs. Like it's not that smart to figure out how to travel further, but it doesn't happen often enough for oncs to have reliable stats. I'm sure the rarity is similar in prostrate spread. I don't hear too many men who have had that happen, but I'm sure there are some.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

megan120
Posts: 127
Joined: Mon Jun 16, 2014 10:54 pm

Re: One year in

Postby megan120 » Thu May 14, 2015 6:50 pm

Steph, my progression is unusual because it spread to my reproductive organs as opposed to the far more common lungs or liver. So far those have been clear.

PITA, thank you for sharing what your doc said. I hope that my cancer is too stupid to move onto other organs. My tumor was a t3 at my splenic flexure, so my spread was not invasion into my cervix, it had to travel a ways to get there. I've always kind of wondered if I'm one of the 'lucky' stage ivs since mine has (so far) only spread to places that can be easily removed without much impact on my health.
36 year old mama to 3 (8,5,3)
Dx May 2014
Stage IV cc with met to cervix
2/134 pos LN
partial colectomy with temp ileostomy
folfox with avastin 6/14
Oct 14, hyst-mets to uterus, rt ovary implants
1/6/15 6 rounds of folfox
5/4/15 done with 28 tx chemo-rad
7/24/15 completion colectomy, NED!

bjones1128
Posts: 43
Joined: Tue May 12, 2015 12:07 pm
Facebook Username: barbslife
Location: South Carolina

Re: One year in

Postby bjones1128 » Thu May 14, 2015 7:36 pm

Megan,

I am in a similar position. Nearly one year into my stage IV diagnosis and it is spreading into weird areas. When I was diagnosed, I had the usual mets in my lungs, nodes, adrenal gland, ovary, brain, etc. The weird thing is that my liver is clean and the onc said that is usually one of the first places it spreads to. Did yours go into your liver? For the past three months I have been complaining to my onc about pain in my right knee, but he said it was "highly unlikely" that I had a met in the knee, as colon cancer rarely goes down that far. He finally did an MRI and guess what? A large tumor on the knee, which I am now having radiation for.

Because I have too many tumors in too many places, I am not a candidate for surgery at all. I tried Xeloda but that is when the cancer spread to my knee, so it obviously didn't work. I am back on Folfox but my question to my onc at next week's appointment will be "how long can I take this chemo?" I've already been on one form or another for almost a year. When it stops working, am I just out of luck?

Sorry, I didn't mean to try and make your post about me... I am just so frustrated and you seem to be in a similar situation. If your onc comes up with any great ideas, let us know... I will do the same. In the meantime, I'll be praying for you!

Barbara
Single mom of two wonderful boys
Dx June 2014 Stage IVB Colon (sigmoid) @ age 38
Mets in brain, lungs, adrenal gland, nodes, ovary
July 2014 stereotactic radiosurgery to brain
July 2014 craniotomy, brain met removed!
Aug 2014 Folfiri
Feb 2015 Xeloda & Avastin didn't work
May 2015 mets to spine & knee, more mets to lungs, airspace disease
May 2015 Folfox, Avastin, Zemota
May 2015 radiation to knee

PainInTheAss
Posts: 673
Joined: Tue Jul 02, 2013 3:08 am

Re: One year in

Postby PainInTheAss » Sat May 16, 2015 4:04 am

megan120 wrote:Steph, my progression is unusual because it spread to my reproductive organs as opposed to the far more common lungs or liver. So far those have been clear.

PITA, thank you for sharing what your doc said. I hope that my cancer is too stupid to move onto other organs. My tumor was a t3 at my splenic flexure, so my spread was not invasion into my cervix, it had to travel a ways to get there. I've always kind of wondered if I'm one of the 'lucky' stage ivs since mine has (so far) only spread to places that can be easily removed without much impact on my health.


It seems that it's different for spread to go first to lady parts than to go to, say, lung or liver first and then lady parts (most often, ovaries). I was reading that cancer cells learn to high jack white blood cells to travel to distant sites. They are like little AIs that keep learning new "tricks" if given enough time. Early stage cancer hasn't learned how to travel really far. Lady parts are still in the pelvis, so, yeah, let's hope they are too stupid to figure out how to go any further. There aren't enough colorectal patients with lady part spread to have a distinct category for that, so you get lumped in with stage IV but I don't think the stage IV stats really apply to your situation. You're just going to have to wait and see if you have a distant recurrence like a stage 2 or 3 would after treatment. Hopefully, not!

I'm a "lucky" T4b. I hate to think of myself as lucky, though. I suppose it's all relative. We are all lucky we didn't die during our own birth, right?
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Steph20021
Posts: 553
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: One year in

Postby Steph20021 » Sun May 17, 2015 8:52 am

I hope you are right that they are unlikely or too stupid to spread but then I think of Julieyw who got a surprise when it made the way to her lungs :(
Hoping for the best for all of us.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, NED
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
01/17- pulmonary embolism
02/17- 1 wk radiation to abdo wall
08/16- on folfiri
01/18-folfox
11/18- Beacon trial-encorafenib & cetuximab


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