When it rains...

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Claudine
Posts: 728
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

When it rains...

Postby Claudine » Sat Sep 17, 2022 9:41 am

My poor husband :cry:
Just as things were beginning to look up following the reversal! He rode 6 miles on his home trainer Wednesday evening, then we had dinner. Following a bout of clustering, he started to experience back pain, which became extreme during the night. When I took him to the ER Thursday morning he had to crawl to the car, his legs wouldn’t hold him. And sure enough, an MRI revealed a recurrence at L4 (the site of cancer discovery 4+ years ago), and a new met at L3 causing stenosis of the canal.
Because of fear that this would lead to permanent nerve damage, he had surgery almost immediately. We are lucky that the neurosurgeon was available and is a specialist - otherwise they’d have flown him to Seattle or SLC.
Surgery went very well. Cancer tissue was removed, the canal was cleaned, DH is feeling his legs again. Of course it’s yet another major surgery - he’s now got veterbral fusion from L2 to L5, they added screws in L2 to maintain structural integrity - but there wasn’t any other option.
To top it all, his pre op Covid test came back positive!! I’m the only one who’s seen him since his reversal surgery, and I’m negative, so he probably caught it in his first hospital stay... So I’m not allowed to visit him. Good thing we can visit remotely!
I’m not sure how long he’ll stay in the hospital; at least the weekend, probably a bit longer, depending how quickly he can walk again. Then he’ll have to go through the whole rigmarole again, using a walker, wearing a corset, etc...
And of course, the surgeon was only able to remove tumor outside the bone, so DH will need radiation at some point (we may travel back to Portland for SBRT like 3 years ago, that worked well at least for a while).
This damn disease, I tell you...
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

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

Surgeries: intestinal resection 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 chemoradiation (Xeloda) 06/22

roadrunner
Posts: 286
Joined: Sun Jan 12, 2020 8:46 pm

Re: When it rains...

Postby roadrunner » Sat Sep 17, 2022 2:53 pm

Sorry you and your husband are going through this again. Good luck with his recovery from COVID and with the next steps in addressing the cancer. It’s great that the surgery went well and you guys have a plan.
7/19: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear

prayingforccr
Posts: 403
Joined: Sun Jun 28, 2020 4:44 pm

Re: When it rains...

Postby prayingforccr » Sat Sep 17, 2022 2:58 pm

You’re a champion, Claudine.

I’m sorry about the updated situation.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

User avatar
beach sunrise
Posts: 694
Joined: Thu Mar 05, 2020 7:14 pm

Re: When it rains...

Postby beach sunrise » Sat Sep 17, 2022 4:55 pm

Goodness, Claudine!
This damn disease is relentless. You all have stayed on it like a hawk and that is what it takes.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - 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
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

MadMed
Posts: 175
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: When it rains...

Postby MadMed » Sat Sep 17, 2022 6:33 pm

Omg, sorry you and DH had to go through that! This thing is relentless. Hope DH is not in pain and got relief from surgery.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022

Sunnycd
Posts: 83
Joined: Fri Feb 26, 2021 10:36 am

Re: When it rains...

Postby Sunnycd » Sat Sep 17, 2022 7:11 pm

So sorry, Claudine. I was here logging in thinking he would be getting better from the reversal and now this…But it’s good that he was able to receive the surgery so quickly and seems that you have plan in place. Much love, Sunny
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
MSS, RAS/RAF wild, PIK3CA mutant

stu
Posts: 1576
Joined: Sat Aug 17, 2013 5:46 pm

Re: When it rains...

Postby stu » Sun Sep 18, 2022 7:24 am

Sad to read this . He has been through so much and you are doing an incredible job supporting him .
Hope he heals quickly and this can get knocked back down .
Much love ,
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: 728
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: When it rains...

Postby Claudine » Sun Sep 18, 2022 9:12 am

Thanks guys. I do have a good support network here, but no one can understand what this recurrence means like the people on this forum do. Your strength helps us move forward!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

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

Surgeries: intestinal resection 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 chemoradiation (Xeloda) 06/22

Luna18
Posts: 17
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: When it rains...

Postby Luna18 » Mon Sep 19, 2022 11:37 am

Claudine wrote:Thanks guys. I do have a good support network here, but no one can understand what this recurrence means like the people on this forum do. Your strength helps us move forward!

I understand perfectly what you are saying. Although I also do have support from friends and other members of the family, nobody knows better what a recurrence means like people on this forum. Stay strong! I hope your husband has a speedy recovery.
Best wishes
Sister DX July 2017 age 44
T4N2M1 G2/G3
MSS
July 2017- Colostomy and primary tumor resection
Aug 2017 Chemo started - Folfox
Nov 2017- Liver resection, and colostomy reversal
March 2017- Chemo ended
November 2018- Recurrence in liver- Liver resection- No chemo
Aug 2019- Recurrence in liver and lungs
Sep 2019- Chemo started- Folfiri +Avastin
Dec 2019 PET showed no activity- fully response to chemo
March 2020 PET showed no activity
2021 NED
2022 May NED

Bpaint
Posts: 37
Joined: Sun Oct 11, 2020 8:54 pm

Re: When it rains...

Postby Bpaint » Mon Sep 19, 2022 11:57 am

So sorry to hear this Claudine. Your poor husband. You are such a strong support for him.
My husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes (25+)
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
CEA 113
Liver, colon and lymph node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix
Start Folfiri + avastin January 2022

Claudine
Posts: 728
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: When it rains...

Postby Claudine » Mon Sep 19, 2022 12:01 pm

Well, I just got a text from my friend who's the neurosurgeon's PA and it looks like DH will be discharged this afternoon, apparently he's "kicking some butt"! It will be so much nicer for him to be home. He's totally asymptomatic covid-wise, but of course not allowed to leave his room, so they feel that he will recover a lot better at home because that will give him the opportunity to move around a lot more. Yay :D :D :D
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

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

Surgeries: intestinal resection 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 chemoradiation (Xeloda) 06/22

stu
Posts: 1576
Joined: Sat Aug 17, 2013 5:46 pm

Re: When it rains...

Postby stu » Mon Sep 19, 2022 1:19 pm

Excellent. Send him our best regards .
No place like home .
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 .

aquarian_asian
Posts: 30
Joined: Wed Jul 07, 2021 7:07 am

Re: When it rains...

Postby aquarian_asian » Tue Sep 20, 2022 1:38 pm

best regards and prayers, Claudine. Stay positive and strong.
Feb 2021 - Dx Stage3B - rectal cancer (Age is 48, Male)
April 2021 - Radiation - for a week (5 mins x 5 days)
May 2021 - LAR surgery
Pathology: G2, LN+ PVI+, Lymph Nodes 5 out of 22
Temporary Ileostomy
Jun-Aug 2021 - Chemo 4 cycles 3 months (CAPOX)
Feb 2022 - Ileostomy reversal

Siti
Posts: 245
Joined: Thu Aug 01, 2019 10:58 am

Re: When it rains...

Postby Siti » Wed Sep 21, 2022 3:25 am

So sorry to read this, Claudine :( You have been such a pillar of strength for your husband. This damn disease!! Sending both of you courage and a speedy recovery to your husband.
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

DarknessEmbraced
Posts: 3716
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: When it rains...

Postby DarknessEmbraced » Sat Oct 01, 2022 6:50 am

I'm sorry his cancer came back in his mind and he had to go through such a major surgery. *hugs* I hope his recovery and radiation go well. I'm glad that he's back home. Sending healing thoughts for him.
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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