Stage IV, 26 weeks pregnant, Merry Christmas!

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AmyG
Posts: 348
Joined: Tue Dec 25, 2018 8:08 pm

Stage IV, 26 weeks pregnant, Merry Christmas!

Postby AmyG » Tue Dec 25, 2018 8:29 pm

So, hi. I'm new here.

Quick rundown of how we got here and what we know.

Mid August: guess who is pregnant with baby #8?? Me!!! Hot damn, very welcome surprise.

Late August: visit to GI for symptoms that had been persisting. Colonoscopy 3 days after initial visit. No drugs due to early pregnancy, I saw them find my tumor. That thing was huge and ugly.

Early September: bowel resection, done at 10 weeks pregnant. 18 lymphnodes all negative, was classified stage II, no chemo recommended but prior to surgery a spot was found via ultrasound. No one was overly concerned since lymphnodes were clear. Anyone see where this leads?

MRI/liver biopsy/lots of labs..

December 5, biopsy results show liver spot is malignant. CEA up from 14 to 16 to 24 from September to December but everything else looks swell. Plan is to cook this baby until 32+ weeks, induce then hit me with chemo.

So that's me in a nutshell. I just turned 42, married with 7.5 kids. Oldest is almost 20, youngest is about to be 2, plus this new one!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Punky44
Posts: 441
Joined: Mon Oct 01, 2018 4:29 pm

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby Punky44 » Wed Dec 26, 2018 2:00 am

I am so sorry you have to be here. Baby #8 (and 1-7) sound like they have a very strong, brave fighter for a mother. I will be 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
Latest update: 6/20–Clear CT, normal CEA

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

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby Rock_Robster » Wed Dec 26, 2018 3:41 am

Hi AmyG, I’m so sorry to hear the reason you’re here but I’m glad that you (and I) have this group for their amazing support. You definitely sound like a fighter and I have no doubt you’ll get through this!

I got my stage 4 diagnosis relatively recently too, although you’re ahead of me having got your primary resection out of the way already. Whilst our treatments may differ slightly as I have a rectal primary, I’ve just done my 3rd round of FOLFOX chemo and am with you in spirit as we tackle the next phase (along with many others here). I don’t claim to be an expert but please speak up here if there’s anything you need and someone will likely be able to help!

Best wishes for the remainder of the pregnancy and birth, -Rob
Last edited by Rock_Robster on Thu Dec 27, 2018 2:48 am, edited 1 time in total.
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

AmyG
Posts: 348
Joined: Tue Dec 25, 2018 8:08 pm

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby AmyG » Wed Dec 26, 2018 12:28 pm

So is it normal to feel just fine? I mean, I have a freaking 4.7cm mass of cancer in my liver and my daily routine hasn't changed.

Nothing has changed. My kids don't treat me any different, lord knows they haven't taken on any more housework. :lol: My husband doesn't coddle me, everything is normal. Does it stay this way until chemo starts?

We are a super active household. Kids in all sorts of activities, we live on 12 acres so there's always something that needs done. Laundry to wash, dogs to feed, meals to cook, etc. Should I be prepared for a rude awakening after I have a preemie in the hospital and I'm starting treatment? This just all seems so surreal. I mean, how can I have stage 4 and feel this normal? :lol:
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

Nohogirl
Posts: 116
Joined: Sun Oct 14, 2018 12:15 am

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby Nohogirl » Wed Dec 26, 2018 7:16 pm

Sorry to hear about your situation. The way you feel is great. They say positive attitude is the key. The more you keep your mind away from it. The easier it will be for you.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
08/19 Pet Scan NED
08/19 Colonoscopy Clear

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby Rock_Robster » Wed Dec 26, 2018 7:36 pm

AmyG wrote:So is it normal to feel just fine? I mean, I have a freaking 4.7cm mass of cancer in my liver and my daily routine hasn't changed.


Indeed I felt pretty good at the time of my diagnosis! I was travelling, working, going out - only symptoms were more fatigue and some weight loss (plus the minor bleeding that sent me to the doc in the first place). I couldn’t believe I was doing all that with stage 4 cancer. Admittedly though I wasn’t also pregnant :-)

In terms of impact, everyone’s chemo experience is a bit different and you’ll find lots of them discussed here. For me though it had a pretty big impact - the treatment itself takes me out of action for at least few days after disconnect; fortunately so far I’ve bounced back fairly well in the ‘off’ week so have a pretty normal life then. My helpful oncology nurse told me at the start that “right now is probably the best you’re going to feel for a while” and she wasn’t wrong; but the good news is everyone is different and you may get a few or even minimal side effects if lucky! I’ve found that while it is good to be prepared (esp. with medications to counter more common side effects, and planning rest time following treatments), it also isn’t worth worrying about possible side effects that you don’t have yet. The only one that is fairly persistent for me now is fatigue, but that one seems to be pretty common and staying active helps.

I’ve also had to remind myself that while I felt fine before this, I clearly wasn’t - and my goal now is not to feel well in the short term but to be well in the long term.

It sounds like you’re very fit and active going into this which can only be of help to you. Best of luck.
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

AmyG
Posts: 348
Joined: Tue Dec 25, 2018 8:08 pm

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby AmyG » Wed Dec 26, 2018 8:00 pm

My oncologist about had a fit when I told her I had a half marathon on the books for February. I think her jaw hit her chest. But unless I've already delivered, I'll be finishing 13.1 miles 2/10/19.

I ran over two dozen races last year, all while full of cancer. What's one more race? :lol:

That said, if they tell me my treatment isn't going to wait on a half marathon, I'm not going to argue. There will be plenty more races I can finish. It's just a little bit of a goal I set for myself.

I did a 5k on Thanksgiving and when I told the team that, they looked at me like I had two heads.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

stu
Posts: 1375
Joined: Sat Aug 17, 2013 5:46 pm

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby stu » Thu Dec 27, 2018 4:33 am

Good on you . You have made me smile . You sound gritty and determined. One of our previous moderators , who has sadly passed ,
cycled for miles during treatment .

My mum had absolutely no symptoms . Nothing . We were out pushing wheelbarrows full of stones the month before . A wee landscape project . However I do think it gave her an advantage being so well heading into chemo . In lots of ways she had largely ignored her diagnosis. There was quite a heated debate here years ago about her being in denial. She was not at all but selected life . She stayed very connected and interested in her life . However chemo for some people is hard to ignore . It was really tough at times until the side effects were better managed . Staying open minded but prepared would be my suggestion with such a busy household . Have a back up plan . Some people have little side effects . Some people do run on chemo and in my mind they are giants but some just can’t do that and that’s fine too .
I have a feeling you will find a way through all this . Looking forward to hearing more about you and your family .
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 .

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ginabeewell
Posts: 450
Joined: Wed Oct 24, 2018 10:30 am

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby ginabeewell » Thu Dec 27, 2018 10:08 pm

My chemo experience has been similar to Rock Lobster and my experience pre-chemo not that different from yours. By the time I was diagnosed I could FEEL the
mets in my liver. Yet my levels were only slightly elevated and I was raising four kids and winning new biz pitches after many late nights at the office. I did recognize I was slightly lower energy than usual and lost almost 20 lbs without trying. Believe it or not, those two symptoms prompted the colonoscopy and my eventual diagnosis.

During chemo, I'm working about 50-60% of the time, mostly because my company has been great, and they've taken me off the front line of the really stressful stuff so to speak. We have started a MealTrain which I was hesitant to do at first (I love to cook, but between energy and nausea, it's not in the cards most days for me). It has been a real lifesaver for my husband, who took almost too well to his caretaker role and is exhausted trying to hold up two ends of the household.

The effects are definitely cumulative, and weight loss was a huge issue for me. I'm on a chemo break now due to infection, but I'm literally eating like it is my job. I am 5'7" and was down to about 90 lbs a few weeks ago (I'm best at 115 and was at 125 before this all started). Eat as much as you can before you get started!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

AmyG
Posts: 348
Joined: Tue Dec 25, 2018 8:08 pm

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby AmyG » Fri Dec 28, 2018 12:37 am

My MFM (maternal fetal medicine doc, high risk OB) told me it was my job to get fat. He said their fattest moms deliver the biggest babies and I was to do nothing but eat until I deliver. He said it would also help give me something lo live off of during chemo.

I'm trying, but I have zero interest in food. Nothing sounds good a few bites of something and I'm finished. I'm at that point in my pregnancy where everything is shoved up under my ribs and squished. There's not a ton of room to stuff a bunch of food! I'll keep after it though.

I keep browsing the internet looking for stories of people with stage 4 and liver mets and surprisingly there are plenty of positive outcomes. I had a total meltdown in the shower today (that's where I do my best crying) wondering if I'll have the chance to see my soon to be 2 year old start kindergarten, or if she'll even remember me. Isn't that just depressing? I let it out, scrubbed with some nice smelling soap, then cleaned the kitchen. :lol:
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!
CEA 3.7 make up your damn mind...
CEA 1.5 that's a new low!

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WriterGirl1969
Posts: 513
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby WriterGirl1969 » Fri Dec 28, 2018 2:03 am

AmyG wrote:So is it normal to feel just fine? I mean, I have a freaking 4.7cm mass of cancer in my liver and my daily routine hasn't changed.

Nothing has changed. My kids don't treat me any different, lord knows they haven't taken on any more housework. :lol: My husband doesn't coddle me, everything is normal. Does it stay this way until chemo starts?

We are a super active household. Kids in all sorts of activities, we live on 12 acres so there's always something that needs done. Laundry to wash, dogs to feed, meals to cook, etc. Should I be prepared for a rude awakening after I have a preemie in the hospital and I'm starting treatment? This just all seems so surreal. I mean, how can I have stage 4 and feel this normal? :lol:


Wow - I thought I was good having #1 at age 42, but you've got my butt kicked! LOL
And yes, like you, when I was diagnosed it felt all the more surreal because I not only felt fine, I felt better than I had probably ever before in my life. I kept wondering how I could have cancer and still feel so great. It seemed like an oxymoron. I ended up doing oral chemo (Xeloda monotherapy). About a month in I had a follow-up with my surgeon. She seemed amazed that I was still working, had driven myself to the appointment, was busy writing my book, was a mom, and all that on chemo and only a month past surgery. I still felt pretty good, honestly. Yes, chemo ended up sapping some of my energy, especially during the hot summer months, and I did have some issues with hand/foot syndrome, but it never got bad enough to keep me out of work. Personally, I think keeping that normal daily routing going was the best way to go. It kept me safely in "normal" - which was part of the reason I'd decided to do oral treatment vs. IV. I felt it would keep my spirits up, and I think it did. So if you keep feeling as if life is proceeding as normal, just roll with it. :) Hopefully it will stay.

Will keep you and your amazing-sounding family in my prayers that all will go well and you'll be able to keep your normal.
--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

kiwiinoz
Posts: 1151
Joined: Thu Jan 03, 2013 11:44 pm

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby kiwiinoz » Fri Dec 28, 2018 2:32 pm

I’m impressed that you’re doing a 1/2 whilst that much pregnant :D running whilst in Chemo is doable but let’s assume you go on FOLFOX, in which case the issue will be the OX (oxaliplatin) as it has cumulative neaurapthy effects. For me that made running hard as at one point my feet got painful before they finally became numb.
I’d also suggest you keep your fluids up and take some sort of electrolyte replacement like Nuun. I didn’t do that in the midst of my Chemo, and with diarrhea & vomiting I really got hit hard. Got IV fluids & felt so much better so it showed me the importance of fluids.
Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

User avatar
ginabeewell
Posts: 450
Joined: Wed Oct 24, 2018 10:30 am

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby ginabeewell » Fri Dec 28, 2018 11:58 pm

The fluids note is a good one. Our care team taught my husband how to give me fluids. I would either do it after my pump got removed or swing by the infusion center on my off weeks to get my port accessed. Fluids made a major difference for how I felt when I was struggling with diarrhea, etc. And it's easy to do from home if they allow that for you, but you may need to ask as they may not offer it up. (A friend of mine had her port get infected so they won't let her do it at home - and she's a former RN!)
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

DarknessEmbraced
Posts: 3486
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Stage IV, 26 weeks pregnant, Merry Christmas!

Postby DarknessEmbraced » Sat Dec 29, 2018 11:11 am

I'm so sorry for your diagnosis.*hugs* Congratulations on baby # 8 I hope your pregnancy goes well and that your chemo goes well!*hugs* I hope you had a wonderful Christmas and have a happy new year! :D
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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)


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