Blood clots and low oxygen and hospice OH MY

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Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby Mohrfamily » Sun Sep 20, 2020 2:20 pm

It happened today. My husband is gone.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

stu
Posts: 1383
Joined: Sat Aug 17, 2013 5:46 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby stu » Sun Sep 20, 2020 2:27 pm

So sorry to read this . Sending all my love at such a difficult time . You have been such a strong support to your husband through this .
Hope you have people to support you just now .
Much love and prayers ,
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 .

AmyG
Posts: 352
Joined: Tue Dec 25, 2018 8:08 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby AmyG » Sun Sep 20, 2020 4:58 pm

I am so very sorry to read about your husband's passing. If there is anything a random internet stranger can do for you at this time, please holler. We have kids that are similar in age, I do hope all of yall have the support you need.
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!

User avatar
ginabeewell
Posts: 462
Joined: Wed Oct 24, 2018 10:30 am

Re: Blood clots and low oxygen and hospice OH MY

Postby ginabeewell » Sun Sep 20, 2020 7:09 pm

I’m so sorry, what a true loss. Will be thinking of you and the kids. And yes we will be here for you for anything we can do to support you, whenever you need us.
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?

rachelfromnyc
Posts: 57
Joined: Fri Oct 04, 2019 11:32 am

Re: Blood clots and low oxygen and hospice OH MY

Postby rachelfromnyc » Sun Sep 20, 2020 9:43 pm

Really sorry to hear your news, Mohrfamily. Sending you good energy... you're in my thoughts.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

boxhill
Posts: 607
Joined: Fri Apr 06, 2018 11:40 am

Re: Blood clots and low oxygen and hospice OH MY

Postby boxhill » Mon Sep 21, 2020 10:52 am

So very sorry.
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

Lee
Posts: 6126
Joined: Sun Apr 16, 2006 4:09 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby Lee » Mon Sep 21, 2020 5:48 pm

I am so sorry to read this. May God wrap you and your families with his love

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!

Gravelyguy
Posts: 323
Joined: Thu Jul 05, 2018 6:03 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby Gravelyguy » Tue Sep 22, 2020 8:56 am

Words can not express how sorry I am for your loss. Praying that God will help you to get through this awful time.

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 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0
12/19/19 clear scans CEA 1.0 still NED!
6/17/20 clear scans CEA 1.1 still NED!

utahgal7
Posts: 14
Joined: Fri Sep 11, 2020 12:04 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby utahgal7 » Tue Sep 22, 2020 9:32 am

I am very sorry to hear about your husband. Even though I don't know you, I am sending hugs to you. Please know there are some great people on this forum and if you need to talk to someone, please reach out to someone on here.
02/20 Rectal Cancer Diagnosis
03/20 CEA 2.7 ST Radiation - 25Gy over 5 days
04/20 LAR surgery w/ ileostomy (only 6 lymph nodes retrieved)
04/20 T3N1bM0
05/20 CAPOX (had to discontinue because Oxaliplatin caused temporary blindness in left eye)
06/20 CEA 0.9
08/20 Ileostomy reversal
09/20 CEA 1.4

Claudine
Posts: 432
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Blood clots and low oxygen and hospice OH MY

Postby Claudine » Tue Sep 22, 2020 2:27 pm

Have been following your and your husband's fight over the months. I am so very sorry it has ended. I hope that you are surrounded with friends and relatives to help you through what has to be a really, really hard transition.
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 24.1
Scan 03/19: Multiple small lung nodules up to 5mm
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20
Scan 09/20: nothing to report

Mohrfamily
Posts: 267
Joined: Tue May 22, 2018 4:04 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby Mohrfamily » Wed Sep 23, 2020 5:50 am

Thank you everyone. I've got great support over here. The kids and I are doing OK, they went to school yesterday and today and will be home tomorrow and Friday, tomorrow will be the big day so to speak with covid there's just a private single 2 hour visitation and public graveside service after. The teachers and guidance counselor are keeping vigilant eyes on them, they're in good hands at school. I'm off this week with plans to go back next, getting back to normal i think will help I'm already climbing the walls.

But thank you to all for your (continued) support, advice, and shared wisdoms.
DH dx stage IV liver mets largest 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
8/15/19 largest liver lesion 1.9x2.1
9/16/2019 OSU to proceed with surgery implant HAI and colon resection
11/19 resection of colon HAI placed
2/20 CEA back to 1000s, liver worse than when we began-start FOLFIRI

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: Blood clots and low oxygen and hospice OH MY

Postby WarriorSpouse » Wed Sep 23, 2020 9:49 am

Dear Mohrfamily,
I am sorry to read here what you have recently been through and your loss. You know that you are among friends here who know what you've been through as a supportive spouse and caretaker. This forum has been great for both patient and caregiver, because it allows us to see that we are not alone in our efforts, grief and perseverance. Caretakers learn so much about themselves witnessing the goodness that surrounds us in all that we do. I have a special appreciation for the caretakers on this forum who hold it together for their families. Marriage and partnerships are sometimes underestimated in our current world, but here on this forum I have witnessed the beauty of committed relationships and loving families. They always seem to take the edge off of very difficult circumstances, and like a hand being removed from a bucket of water, the family "fills in" the open space created. It's a natural phenomena when memories and family coalesce around a grieving family. My thoughts and prayers are with you and know that we are here in common friendship to help support you in your healing. We all share a common bond here and forever we will be here for you.
With deepest felt sympathy.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

kandj
Posts: 301
Joined: Sun Sep 27, 2015 11:29 am

Re: Blood clots and low oxygen and hospice OH MY

Postby kandj » Thu Sep 24, 2020 5:42 pm

I am so sorry. We will keep your entire family in our prayers.
wife to DH, dx 8/15 stage IV @36, numerous unresectable liver Mets
resection and HAI placed 12/15
Liver resection 5/19/2016 15-20 mets removed (surgeon lost count, but it hopeful he got it all!)
Recurrence 7/2017 4 Liver mets and one possible lung met
Radiation on liver Mets 12/17
Lung met 10/18
VATS on lung met 11/18 started xeloda
Chemo break 6/19-11/19 lung/adrenal gland recurrence 11/19
Adrenal ablation2/20 Robotic Assisted VATS 3/20 Xeloda again

DarknessEmbraced
Posts: 3499
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Blood clots and low oxygen and hospice OH MY

Postby DarknessEmbraced » Sat Sep 26, 2020 12:28 pm

I'm so very sorry for the loss of your husband. *hugs* My heart goes out to you and your family.
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! :)

Siti
Posts: 177
Joined: Thu Aug 01, 2019 10:58 am

Re: Blood clots and low oxygen and hospice OH MY

Postby Siti » Mon Sep 28, 2020 10:39 am

I am terribly sorry for your loss. You’ve done all that you can to be an amazing caregiver, wife and mother to your kids. It really takes super powers to be able to manage and cope through all this. Please know that we are here for you and that you’re not alone.
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.


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