Goodbye

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aja1121
Posts: 214
Joined: Sat Jun 28, 2014 5:12 pm

Re: Goodbye

Postby aja1121 » Fri Jul 27, 2018 10:46 am

I would like to sincerely thank you, Risto (and you as well, GrouseMan) for sharing your experiences with us. As caregiver to someone with Stage IV cancer, fear of the end/hospice/unknown is always in the back of my mind. Your openness and honesty are helpful to me and to the many other people reading the board.

My heart hurts for you. Wishing you peace.
05/23/14 DH dx Stage 3B rectal ca (age 41)
6/2014 chemorad | 10/2014 LAR, all nodes clean
FOLFOX x 10 | VATS/lung met | ileo reversal
09/15 local recurrence
10/15 colostomy
11/15 FOLFIRI x 4, major growth
02/16 tumor debulked
Stable ten months on Xeloda/Avastin
Growth on clinical trials NCT02024607 (BBI608 + FOLFIRI), NCT02817633 (anti-PD-1 + anti-TIM-3), NCT03175224 (c-Met inhibitor)
09/27/2018 started hospice
02/07/19 died

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

Re: Goodbye

Postby WriterGirl1969 » Sat Jul 28, 2018 8:18 am

As the one with cancer, I often felt that being the caregiver / loved one forced to watch would be *so* much harder. I'm so very sorry to read both posts, but so moved by the love and devotion that you gave to your partners.
Keeping you both in my prayers.
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.”

Caat55
Posts: 677
Joined: Sat Dec 23, 2017 6:01 pm

Re: Goodbye

Postby Caat55 » Sat Jul 28, 2018 9:09 pm

I am so sorry for your loss. I will hold my husband closer tonight.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

DarknessEmbraced
Posts: 3465
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Goodbye

Postby DarknessEmbraced » Sun Jul 29, 2018 9:24 am

I'm so very sorry for your loss!*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! :)

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: Goodbye

Postby mpbser » Wed Aug 01, 2018 1:24 pm

Maybe I am a sadist for reading this because I refuse to accept my husband succumbing to this disease and read this thread anyway. Made me cry. I'm so sorry for your loss and pray that this doesn't become my story. My husband is my soulmate too. We found each other after forty years of singledom and I never thought I would ever find the true love of my life. So so sorry for your loss.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

User avatar
LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Goodbye

Postby LPL » Wed Aug 01, 2018 3:31 pm

WriterGirl1969 wrote:As the one with cancer, I often felt that being the caregiver / loved one forced to watch would be *so* much harder. I'm so very sorry to read both posts, but so moved by the love and devotion that you gave to your partners.
Keeping you both in my prayers.
Tracy

No.. not harder!! but the feeling of being helpless, wanting to ‘make it all go away’ and not being able to :( is at times very hard. Being happy sharing good news is easy..

Risto and grouseman - thank you for sharing your fellings/experience and I wish there was a way to send hugs to you both <3 It is so hard to loose people you love :cry:
I’m so sorry for your loss!
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

Tim UK
Posts: 76
Joined: Fri Jun 12, 2015 1:05 am

Re: Goodbye

Postby Tim UK » Wed Aug 01, 2018 4:38 pm

Risto, thank you.
I think often about what it will be like towards the end for me, for my wife, kids, family and friends. Rarely is anyone brave enough and generous enough to broach the topic with such candour. My condolences to you.
Tim
https://youtu.be/qoQbY4A5RNA
05/15 L hemi-colectomy
05/15 Dx st 3 T4N2M0 @43
kids: now 13, 10
BRAFm mucinous - KRASw
06/15 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF triplet (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: range 16;650 to 1;36 back to 4;135
8/16 progression
10/16-6/18 : NCT02650713
7/18-9/18 : anti-GITR; ERK inhib
10/18-4/19: folfoxiri+avastin
7/19-9/19 enco+cetux+Bini
10-19 starting regonivo

risto
Posts: 54
Joined: Wed Jan 06, 2016 2:28 am
Location: USA

Re: Goodbye

Postby risto » Fri Aug 03, 2018 2:49 pm

It has been just over 2 weeks and I've been busy with mostly bureaucratic tasks, and I start work again on Monday. Thank you all for your posts and understanding about my feelings. The sadness and emptiness is profound, but partially thanks to your comments and partially thanks to follow up from bereavement counselors and my DW's health care team, I am understanding that I did my best for her, and the main thing was helping her feel comfortable and loved, not trying to keep her alive at all costs, which matters most at the end. I'm feeling more comfortable with my actions because I believe her death was as good as it could be. She was dealt a bad hand but we played it well to the end. Her oncologist urged us to minimize interventions at the end, and focus on her comfort, and I'm now convinced it was the right call. Throughout her illness one of my biggest fears was that she would suffer at the end, and I can say with confidence she did not suffer much if at all, thanks to a very active palliative care team that had been started 2 years before her death. Any stage IV patients who are not getting real palliative care, whether you are potentially curable or not, you may want to seek that out, because there really isn't any downside. It's not like hospice. She only had hospice for 3 days, but because of the palliative care team she had all the meds she needed for comfort throughout her journey. If anyone has any specific questions about what happened toward the end I would be glad to answer via PM. Again, thank you all for your comments and support, it really means a lot.
DW Dx 7/15, 41 yo, st IV, 3+ liver mets: 11.3 cm, 7cm, 3cm. MSS.
KRAS, APC, SMAD4, TP53 mut.
7/15-10/15: FOLFOX+bev. x8
11/15-12/15: SIRT (Y90)
1/16: Toxic Hepatitis, chemo break
4/16: Liver resec. fail
5/16-7/16: FOLFIRI x6
8/16: Liver resec.
8/16-11/16: FOLFIRI x6
2/17: IMRT/Xeloda x25
4/17: LAR
6/17: CT: Progression. Peri, Lung, Liver mets. FOLFIRI x6
9/17: FOLFIRI+Bev x5.
11/17: CT: Stable. 5FU+bev. maintenance x5
1/18-2/18: Surgery for SBO
5/18: ascites, acute liver injury

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Goodbye

Postby MissMolly » Fri Aug 03, 2018 4:29 pm

risto wrote:It has been just over 2 weeks

The sadness and emptiness is profound, but partially thanks to your comments and partially thanks to follow up from bereavement counselors and my DW's health care team, I am understanding that I did my best for her, and the main thing was helping her feel comfortable and loved, not trying to keep her alive at all costs, which matters most at the end.

She was dealt a bad hand but we played it well to the end. Her oncologist urged us to minimize interventions at the end, and focus on her comfort, and I'm now convinced it was the right call. Throughout her illness one of my biggest fears was that she would suffer at the end, and I can say with confidence she did not suffer much if at all, thanks to a very active palliative care team that had been started 2 years before her death. Any stage IV patients who are not getting real palliative care, whether you are potentially curable or not, you may want to seek that out, because there really isn't any downside. It's not like hospice. She only had hospice for 3 days, but because of the palliative care team she had all the meds she needed for comfort throughout her journey.


Risoto:
Amidst the depth of your grief, you continue to provide valuable wisdoms - especially as regards conceding to make the choice of fewer invasive interventions and to gaining earlier involvement of Palliative Care.

I have been on Palliative Care for 3 years. Palliative Care is whole person care. It provides a means to optimize my quality of life despite a serious health condition. I agree with you that there is no downside to Palliative Care and I applaud you for bringing light to this valuable service.

Gentle blessings,
Karen
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

_DivideZero_
Posts: 4
Joined: Wed Aug 01, 2018 11:06 am
Facebook Username: Lance Thompson

Re: Goodbye

Postby _DivideZero_ » Sat Aug 04, 2018 12:28 am

Hang in there man.
40yr M 8/3/18 DX Adenocarcinoma in Cecum

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

Re: Goodbye

Postby lakeswim » Thu Aug 23, 2018 10:58 pm

Risto and Grouseman - My condolences to both of you on losing your wives. They were lucky to have your love - to the end and beyond.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*


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