It's back

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ginabeewell
Posts: 489
Joined: Wed Oct 24, 2018 10:30 am

Re: It's back

Postby ginabeewell » Fri Apr 16, 2021 8:00 pm

Sunnycd wrote:Ginabeewell, I’ve been checking this post every so often to see if there is an update. Hope you are doing well, enjoying lots of healthy foods, and the Hawaiian sun.


We are indeed in Hawaii! On the Big Island at the Mauna Kea, and having a lovely and relaxing time. We swam with dolphins this morning! Leaving tomorrow, but we had 10 nights here; we have never had that many days off at once together!

Scans at MSK next week; trying to keep my mind off them for now, while at the same time figuring out paths of action and whether radiation or anything else could be an option...
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?

Sunnycd
Posts: 28
Joined: Fri Feb 26, 2021 10:36 am

Re: It's back

Postby Sunnycd » Sun Apr 18, 2021 7:50 pm

So glad you had a nice time. Best of luck on your scans at MSK! Keep us posted...I know that I am among many others here rooting for you every step of your journey.
DX 02/21 CC IIB @ 51
01/21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
3/21 started 4 rounds of CAPOX

Claudine
Posts: 497
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It's back

Postby Claudine » Mon Apr 19, 2021 2:34 pm

Fantastic!! We're leaving for Utah tomorrow. No swimming with dolphins but looking forward to it anyway. Good luck with the scans, I hope they come back clear!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 75.5
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 03/21: stable

User avatar
ginabeewell
Posts: 489
Joined: Wed Oct 24, 2018 10:30 am

Re: It's back

Postby ginabeewell » Wed Apr 21, 2021 3:30 pm

Well it looks like the maybe-something was in fact something.

It’s a little bigger; and my CEA doubled to 3.6.

Dr K wants me to resume chemo but also thinks it can be ablated. So hopefully not too many more cycles; depends when we can schedule the ablation.
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?

Punky44
Posts: 476
Joined: Mon Oct 01, 2018 4:29 pm

Re: It's back

Postby Punky44 » Wed Apr 21, 2021 5:58 pm

I’m glad you had a great time in Hawaii! Sending you strength to get through this setback <3
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
Latest update: 3/22/21: CEA 3.4

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

boxhill
Posts: 702
Joined: Fri Apr 06, 2018 11:40 am

Re: It's back

Postby boxhill » Tue Apr 27, 2021 3:48 pm

Thanks for updating us. And I'm glad that you've been having such a lovely time!

Sending positive energy that the ablation can be done soon and is effective.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
8/20 MRI NED

Claudine
Posts: 497
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It's back

Postby Claudine » Wed Apr 28, 2021 10:25 am

Hopefully just a bump on your road to NEDness!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 75.5
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 03/21: stable

Rikimaroo
Posts: 341
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: It's back

Postby Rikimaroo » Wed Apr 28, 2021 1:04 pm

Gina,

I am so sorry it just won't go away. I am in the same boat, just when I thought I could take a break as like you I don't want to do chemo for the rest of my life, it keeps coming back. I am just at my wit's end. It so hard to decide what to do sometimes and such. Never give up, that's what I hear all the time and I don't want to, but chemo is so hard. Right now I am going to do my 3rd round of folfiri next week, I told the onc I need to get one more extra week, so thats 4 weeks then get chemo since my 2nd round. I get it once every 3 weeks. We might do 4 of 5 rounds then rescan and see where we are at.

But I get it, I feel you and I wish that things could just get better for us. Keep up the fight, all we can do and never give up. I know its hard, I have contemplated giving up and just say F it. Let it play out and whatever happens happens, but then I think of my kids and family and I want to fight to be here with them until all my resources are extinguished, but its hard as F!!. Chemo is so hard. I also run a business so its hard, for that 5 days I am down from chemo and sometimes, runs into the next week.

Riki
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.


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