Hi, I'm new to the club

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ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Hi, I'm new to the club

Postby ginabeewell » Wed Oct 24, 2018 2:39 pm

Hello, I've recently been diagnosed with stage 4 colon cancer with mets to the liver.

I'm a 45 year old female, married with four kids (twins aged 7 and stepkids aged 12 and 15) and I have a lot of living left to do!!

Went to my primary care doctor in early July with no symptoms except unintended weight loss / loss of appetite / slight nausea. Her blood tests revealed that I was anemic. My liver enzymes were elevated, but just barely. Ultimately / eventually scheduled a colonoscopy, expecting a bleeding ulcer diagnosis. Two days prior to the colonoscopy (Sept 11), I felt a solid mass underneath my ribcage. So by the time I woke up to the news of a "likely malignant" growth in my colon, I knew I was a stage 4 cancer patient - and a CT scan several days later confirmed it, with largest tumor at 11 cm (no wonder I could feel it!).

I started chemo (FOLFOX + Vectibix) on October 1 and am two cycles in. Have also been doing acupuncture, Chinese herbs and changing my diet.

Yesterday I found out that my CEA was down after first treatment. I can feel a difference in my abdomen - feels much looser, less swelling.

Biggest challenge thus far has been keeping my weight on. I am down to about 105 lbs from 125 and my appetite is pretty compromised.

On the flip side, I have been absolutely blown away by the love and support I've received from a community we never quite realized we had. Granted we are just getting started, and these oncologists don't seem like a particularly optimistic bunch, but I am feeling strong and ready to heal.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: Hi, I'm new to the club

Postby Punky44 » Wed Oct 24, 2018 2:55 pm

Sorry you find yourself here but looks like you are ready to fight and looks like things are going well. Praying for you!
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

teacher2017
Posts: 275
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Hi, I'm new to the club

Postby teacher2017 » Wed Oct 24, 2018 5:02 pm

I’m sorry you are here too. Oncologists aren’t usually very warm and fuzzy. They fear telling. You the wrong thing. They stick to facts. My best advice to you is look for positive stories. Don’t giggle stats- they are old and include the old. Everyone is different. Chemo can shrink tumors so have some faith i modern medicine. The objective is to be operable. Think positively if you can! Stay strong!!!! Hugs to you!!!!
50 yo mom of 2 (15, 18)
DX stage 3c - 12/17 LN. T3
8" colon resection 9/22/17
6.1cm tumor
folfox 11/17-4/18
CEA -1.4 11/8/17
Colonoscopy- 5/18-CLEAR!
Cea -1.8 6/18
Cea -2.1. 8/18
8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection-9/18
Cea -1.5/1.2
Port removal-9/19
Cea -1.2 10/19
Cea -1.1 02/2020
Cea - 1.2 5/20
Cea-1.1 9/20
Cea- 1.3 2/21
Cea.1.3 5/21

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Hi, I'm new to the club

Postby Lee » Wed Oct 24, 2018 7:16 pm

Hi and welcome, sorry for the reason you are here.

Not sure where you are living, butt if it's possible (or have not done yet), please get a 2nd opinion at a major cancer hospital or major cancer treatment center.

There are people here who have been diagnosed with stage IV liver mets and are very much alive today, NED!! Avoid Dr. Google, hang around here if you want info or support. There is a wealth of information at this site.

If you have any siblings, encourage them to get checked out too. Does colon cancer run in your family?

Your young and have the right attitude, you can be treated aggressively. Immune therapy is the new approach to cancer. Butt because you are stage IV, I would encourage a 2nd opinion if you have not already done so. Did they find more than one tumor in your liver?

Protein shakes can sometimes help keep weight on.

Again, welcome,

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 - 16 years and counting!

User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Hi, I'm new to the club

Postby ginabeewell » Wed Oct 24, 2018 7:52 pm

We are located in Chicago, so my first two meetings were at the U of Chicago (with an oncologist whose name came up multiple times from people all around the country) and at Northwestern.

My husband had a business connection with Cleveland Clinic, who just did the first live liver transfer in the US, so I squeezed in a meeting with them too.

The U of C oncologist (whom I liked best of the three) agreed to work with Northwestern to do the chemo administration since their location is way better for me. We did the first treatment there and then asked to switch to a fourth doctor, also at NW, whose bedside manner was a better match for me. So no shortage of opinions here, and doctors #1 and #4 willing to collaborate on care, keeping me connected to two universities.

I'm willing to travel later in the process if need be.

But for now, feels like what we are hearing is largely aligned, all four agreed on first line treatment. Only the last doctor was willing to articulate that our goal was liver resection if we can shrink the tumor enough. (The others all kind of took the stance that it was too early to talk about that.)

The pathology showed that it was not inheritated genetically. My sister got a colonoscopy anyway, and it was all clear (whew!). I have literally NO risk factors, it all seems crazy.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Hi, I'm new to the club

Postby ginabeewell » Wed Oct 24, 2018 7:57 pm

Oh sorry forgot to add, yes they found more than one tumor. Not sure we ever got the count but visually it was plenty and everywhere.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Hi, I'm new to the club

Postby Gravelyguy » Wed Oct 24, 2018 9:47 pm

Hi Gina,

Welcome and yet am sorry you are joining us.

I am a little over a year ahead of you and also did the folfox Vectibix route. The Vectibix really did a number on the Mets for me.

I would also strongly recommend a second opinion at a major hospital with a strong liver surgeon. I ended up at Mayo-Rochester and was very glad I did for many reasons. The chemo can do bad things to your liver so if it is possible to resect the liver Mets, you want to do that sooner than later. I had 4 rounds then surgery and already had some liver damage but not enough to not have surgery.

Praying for you,

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

rtcasper
Posts: 50
Joined: Sat Aug 04, 2018 12:12 pm
Location: Ohio

Re: Hi, I'm new to the club

Postby rtcasper » Fri Oct 26, 2018 5:48 am

Hi, sorry for the reason you are here,but you couldn't be with a better group of people. I second the major cancer center opinion, they just have so much more experience with this terrible disease, and especially considering you are a stage 4. And believe me, you can't go wrong with Cleveland clinic. My experience with them has been nothing less than wonderful. Good luck to you and keep us posted along your journey!
By the glory, by the grace, by the strength of God, I will be made whole.

43-M
Aug 3, 18-colonoscopy, 5cm mass 12cm from AV rectal cancer
Aug 16-MRI
Aug 17-CT,chest and pelvis
CEA-.99-likely not a good marker
Clinical DX-T2/T3n1 -3cm mass, 13.5 from AV-might be colon? - let surgeon make determination
Sept 10-14 radiation
Sept 25-CR lap surgery, temp loop ileostomy
Oct 2-path stage pT1N0M0-no chemo recommended
Jan 8-stoma takedown
Jan-April- C diff
May-Fecal matter transplant
Sept-Clean scan NED

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

Re: Hi, I'm new to the club

Postby Spazzyjanet » Fri Oct 26, 2018 6:32 am

Welcome to the club. I am glad that you are getting a lot of opinions and using resources available. I am hoping that you can get to a path to NED.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: Hi, I'm new to the club

Postby cartech78 » Sat Oct 27, 2018 10:40 am

Hi Gina, I am also new here. I am being treated right now in the libertyville IL area at Condell and my ONC is with North Shore Oncology who i am really not a fan of either. I was able to set up a second opinion at the Mayo Clinic for 1/8/19. They want me to do 2 months of Chemo first before i come out. My goal is a liver resection as well. My ONC keeps telling me its not possible and in general doesn’t give me much hope to cling to which is why im not a fan of him. I am also considering reaching out to memorial sloan in New York as they have had some stellar success with HAI pumps hooked straight to Liver. Anyways i just wanted to wish you some good luck on your path to NED.
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: Hi, I'm new to the club

Postby ginabeewell » Sat Oct 27, 2018 12:22 pm

Cartech78, any interest in finding an oncologist closer to home in addition to the appointments you have?

Dr Blase Polite at U of C has a national reputation, and he was willing to coordinate with Northwestern (closer to where I work) or NorthShore for chemo administration.

I switched NW oncologists to Dr Regina Stein, and if what you are hoping for is a little more energy and optimism, I can't recommend her highly enough. I met with four doctors total and three left me saying to myself, "You don't know me." She did not, and she's been super hands on since our first visit - she stops by each time I'm in the infusion room and is responsive to MyChart. She is not a colorectal specialist, but she was impressive and spent more time explaining the science and outlining a course of action than anyone else. I figure since she's willing to partner with Dr Polite, who is a specialist active in clinical trials, that I am in good hands.

(Also she did tell me that an HAI pump could be an option so I don't think you need to go to MSK for that alone.)

Finally the book Radical Remission has been my best anecdote to non-optimistic doctors! It made me feel like I could heal myself in spite of the odds.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Hi, I'm new to the club

Postby NHMike » Sat Oct 27, 2018 1:37 pm

I'm glad that your cancer is responding to chemo and hopefully you can get to a point where it can be removed completely.

Doctors come in all kinds and some are good with patients and some aren't. The most important thing is getting you to "No Evidence of Disease" but the human side can make things more pleasant along the way.
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; 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, 2/12 1.2
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
2/19: Clean CT

cartech78
Posts: 78
Joined: Thu Oct 25, 2018 6:22 pm

Re: Hi, I'm new to the club

Postby cartech78 » Sun Oct 28, 2018 8:34 pm

ginabeewell wrote:Cartech78, any interest in finding an oncologist closer to home in addition to the appointments you have?

Dr Blase Polite at U of C has a national reputation, and he was willing to coordinate with Northwestern (closer to where I work) or NorthShore for chemo administration.

I switched NW oncologists to Dr Regina Stein, and if what you are hoping for is a little more energy and optimism, I can't recommend her highly enough. I met with four doctors total and three left me saying to myself, "You don't know me." She did not, and she's been super hands on since our first visit - she stops by each time I'm in the infusion room and is responsive to MyChart. She is not a colorectal specialist, but she was impressive and spent more time explaining the science and outlining a course of action than anyone else. I figure since she's willing to partner with Dr Polite, who is a specialist active in clinical trials, that I am in good hands.

(Also she did tell me that an HAI pump could be an option so I don't think you need to go to MSK for that alone.)

Finally the book Radical Remission has been my best anecdote to non-optimistic doctors! It made me feel like I could heal myself in spite of the odds.


That’s interesting Gina, i work in Skokie but live in Zion Il up North. I start this Chemo tomorrow morning but i am gonna try to figure out how to switch ONC as the one i have is just not gonna work for me. I don’t even know where to begin with that. There is lake forest hospital which is a Northwesren Memorial Hospital that i drive by everyday to and from work. Now that I think about it i work right next to evanston :P . Also im curious to know if U of C does the HAI pump since the old model was discontinued. That would be a amazing if they did so I wouldn’t have to travel to New York every 2 or 3 weeks! So do you recommend i call this doctor Blase Polite for another opinion and possible ONC refferal?
40 Y/o male
Dx 10/5/18 stage lV CRC
Sg colon
23 inoperable liver mets largest 4.5 cm
Colon resection 10/6/18 clean margins
Starting FolFox on 11/18
2nd opinion at MSK on 12/18
HAI pump installed on 3/6/2019 also found 20 more small tumors on liver scans missed
7/2/2019 MRI and CT show only 2 liver tumors visible and they are shrunk by 3/4
11/25/19- Liver resection at MSK- got out all cancer and am NED. More scans and mop up chemo to follow.
1 month Scan clear! Jun/20 scans still clear. Off chemo since 3/20

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: Hi, I'm new to the club

Postby stu » Tue Oct 30, 2018 5:45 pm

Hi ,
Your response to chemo is entirely individual and that to me is full of hope .
You sound as though you have started well .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Caat55
Posts: 694
Joined: Sat Dec 23, 2017 6:01 pm

Re: Hi, I'm new to the club

Postby Caat55 » Tue Oct 30, 2018 8:17 pm

Sorry you are a part of the club but glad you found it. This site is a wealth of support and knowledge.
Susan
Do at 55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19, 5/20


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