It's back

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

It's back

Postby ginabeewell » Thu Mar 18, 2021 11:35 pm

Looks like that 3 month chemo break I was hoping would last forever did not.

My PET showed a very tiny area of activity near an old lesion that had disappeared on the last scan but is apparently back.

They did an MRI to confirm this morning; don't have results back but seems unlikely to be anything but confirmation.

I'm crushed and shocked. My CEA has been a very reliable leading indicator for me, and it's been stable for months. It even went DOWN since my last CEA pull at MSK (from 2.3 to 1.7 on Wednesday). So whatever is there must be tiny. But inoperable, of course. It's on the hepatic lobe.

Beyond not wanting to go back to chemo, I'm caught trying to figure out what a second recurrence means.


Kemeny literally wanted to start treatment for me TODAY. i said no, that i wanted to stay on Mondays. But the more i think about it, the more I think i'd like to take a few weeks before resuming treatment - to gain some weight, get stronger, go on the honeymoon i never had, etc. I can't imagine that Dr K will be happy about that, but I'm not sure i care. I know that chemo works for me, but the idea of staying on it forever is just awful.

I feel like i'm missing something. Should i be asking about a liver transplant? Getting surgical second opinions? Trying to heal myself in some alternate way during the next few weeks?

I was feeling so good and so optimistic, especially with my CEA so stable. From the beginning, i said i didn't feel like this would get me, but now i'm wondering if i really felt that or just really really wanted to believe it.

I'm just... crushed. F.
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

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

Re: It's back

Postby Lee » Fri Mar 19, 2021 1:13 am

I'm so sorry, was hoping for a better outcome for you, cancer "suck" sometime. Hope you are able to get this new setback under control.

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!

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

Re: It's back

Postby Lee » Fri Mar 19, 2021 1:16 am

Lee wrote:I'm so sorry, was hoping for a better outcome for you, cancer "sucks" sometime. Hope you are able to get this new setback under control.

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!

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

Re: It's back

Postby stu » Fri Mar 19, 2021 3:29 am

Over in the U.K. they are quite relaxed about holidays and delaying treatment for a few weeks in fact it was encouraged with my mum . Initially we did not want to take up the opportunity due to fear but with time my mum started to realise the benefits of it . She also talked about needing time to find her focus . She would get to a place where she felt ready to tackle it once more but not just in body in her mind too!

We definitely consulted with the surgeon on a tricky area my mum had . I think ( starting to forget the details ) it was sitting on the hepatic artery and they did say they would need to get creative . The chemo shrank it away enough for surgery . I do remember my mum’s surgeon say the liver was different in that it did not need a wide margin . They could literally go in mm . I don’t know if that’s true at all but it might be worth hearing what their views are. Give you a better idea going forward.

I don’t blame you one bit for feeling tired and shocked by this but also still have my eyes on that long term outcome for you . Still I wish you did not have to go through more .
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 .

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It's back

Postby claudine » Fri Mar 19, 2021 9:49 am

I'm so sorry Gina... These setbacks are such a blow, mentally. DH's onc isn't one to push treatment at all - I guess they vary a lot in their approach; his opinion is that the longer DH can remain off chemo, the stronger his body will get, should it have to be resumed. So I would say, stand your ground and make sure you're in a good head space before resuming (as good as it can get, considering). A few extra days/weeks of chemo break will probably not make any difference in treatment efficacy, but will make a huge difference in you being ready to go back to the front! Do take that honeymoon trip!
Also, it's amazing how many stories I read of people having multiple surgeries and chemo cycles with many a setback, yet eventually, finally crushing the beast and reaching long-term NEDdom. I'm sure you will be one of them!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

saltygirl
Posts: 164
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: It's back

Postby saltygirl » Fri Mar 19, 2021 12:22 pm

Please take a trip before you start treatment again. Few weeks will not make any difference. I just plan my treatment around my trips. My onco is very supportive. Every visit he asks me, where you are heading now. My surgeon calls me “salty”. I didn’t know what it means in English. Now I know. Not bad.
Stage 4, distant lymph nodes May 2020, braf/kras mutations
11 folfoxiri
Intense radiation 1 week on distant lymph nodes
Surgery, hysterectomy, colon resection, distant lymph nodes resection
Complete pathological response to chemo.
NED 2021
NED 2022
NED 2023

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

Re: It's back

Postby cartech78 » Fri Mar 19, 2021 2:41 pm

Hey Gina! Sorry to hear about your recurrence! I am also dealing with 3 mets in my liver that popped up. I lost my hai pump due to the catheter clotting off. Not fun. I am looking at liver transplant as it’s best to get on it early cause it takes awhile. It’s a big process but we have a way to streamline it a little through Colontown. If your interested have Your husband join The transplant group over there if he’s not already and have him reach out to the admin Betsy Post. She can directly contact you to a transplant surgeon named Dr.Hernandez at University of Rochester through email and he will review your case and do your console through Zoom. Mine is next Wednesday with him and his entire transplant team. Also feel free to message me anytime if you want anymore info. Good luck!
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: It's back

Postby ginabeewell » Fri Mar 19, 2021 2:48 pm

Thanks so much to everyone for your words of wisdom and comfort!

I definitely want to do some time to check out some options - and now it appears I will have the time to do that, because I just got a call from Dr Kemeny.

It sounds like the MRI was inconclusive as well. She presented my case at tumor board yesterday, and the recommendation was to wait for 4 weeks and rescan with an MRI. I requested 5, which she initially approved, then called back and told me she was worried because the radiologist thought it was positive, but she wanted to be sure.

We agreed that I would monitor my CEA at NW and if it suddenly jumps, we can make better decisions.

For now, I suppose this is the best news that I could get. And maybe over the next few weeks I can treat myself to super-healthy food and supplements. Can't hurt, might help, right??
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

AmyG
Posts: 371
Joined: Tue Dec 25, 2018 8:08 pm

Re: It's back

Postby AmyG » Fri Mar 19, 2021 6:18 pm

I'm going to check on this in 4 or 5 weeks and find your "OMG IT WAS NOTHING" post, okay?

Take care of yourself, idk that healthy foods will help but it won't hurt anything!
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!

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: It's back

Postby DarknessEmbraced » Sat Mar 20, 2021 12:34 pm

I'm sorry your cancer came back.*hugs* I hope your chemo goes well.*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
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

claudine
Posts: 809
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: It's back

Postby claudine » Sat Mar 20, 2021 3:52 pm

For now, I suppose this is the best news that I could get. And maybe over the next few weeks I can treat myself to super-healthy food and supplements.


Fresh sushi in Hawaii :wink:
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Xeloda/Avastin since 01/24

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: It's back

Postby beach sunrise » Sun Mar 21, 2021 4:12 pm

Take the honeymoon and have a grand time!!!
Maybe even hire a professional photographer to take pictures. Ya, I'm a picture person :)
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: It's back

Postby boxhill » Sun Mar 21, 2021 4:33 pm

I'm keeping all appendages crossed for you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
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 LNs 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
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

kandj
Posts: 314
Joined: Sun Sep 27, 2015 11:29 am

Re: It's back

Postby kandj » Fri Mar 26, 2021 6:58 am

Where is this suspicious spot in the liver? You said it isn’t surgical but is it possible to radiate it? DH has had really good results with SBRT at msk. Hopefully it comes back to be nothing. The MRI being questionable is good news in my opinion. Those suckers have been able to see teeny tiny Mets on DH’s scans. Can you get just FUDR in your pump maybe? Might be a good compromise.
wife to DH, dx 8/15 stage IV @36, 12+ liver Mets
HAI placed 12/15
Liver resect 5/19/2016 15-20 mets (surgeon lost count)
Liver Recurrence 7/2017-radiation
Lung met 10/18 VATS
lung/adrenal gland recurrence 11/19
Adrenal ablation 2/20 VATS 3/20
Radiation: 9/20 adrenal gland, 2/21 pancreatic node
9/2021 liver, 4/22 esophageal node
7/2023 proton therapy: liver
140+ rounds of chemo and counting
Chest nodes, lung nodules, and esophageal nodes currently.

Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: It's back

Postby Sunnycd » Fri Apr 16, 2021 7:02 pm

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.
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant


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