Update from Riki's Wife

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CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Update after 2nd opinion discussion

Postby CRguy » Wed Oct 05, 2022 11:00 am

Sending MEGA Harmony your way my friend
wherever your Journey leads you, it must be YOURS.

We understand the " sick and tired of being sick and tired ! "
It is major sucknitude for sure

Keep on ... keeping ON !
one step, one day at a time.
We will always be here to support you.

CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Bpaint
Posts: 68
Joined: Sun Oct 11, 2020 8:54 pm

Re: Update after 2nd opinion discussion

Postby Bpaint » Wed Oct 05, 2022 3:02 pm

You know what is best for you, so I wish you peace with your decision and some pain-free days ahead with your family.
husband (age 41 at dx):
8/20 CRC Stage 4. Mets to lungs, liver, distant lymph nodes
MSS, KRAS wild
CEA 713 at dx
Folfox (12 rounds)
Liver, colon and node resection 4/21
New lung mets, Vectibix monotherapy started 6/21
Stop Vectibix lungs stable about 6 months; all other areas stable
Start Folfiri + avastin 1/22
Stop Folfiri (lungs stable 6 mos); start Vectibix 7/22
Stop Vectibix 12/22 (lungs stable 5 mos this time)
SBRT on lung Mets scheduled for 1/22, will restart Folfiri

Rikimaroo
Posts: 436
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Update from Riki's Wife

Postby Rikimaroo » Sat Dec 03, 2022 1:58 pm

Hello everyone...

This is Riki's wife posting this, Ruth. It is with great sadness & tears that I post this but he did wanted me to update this forum when I was strong enough. He passed away at 4 AM on the 18th of November. His last weigh-in was 90 lbs & I'm pretty sure he weighed even less than that when he passed away, probably down to 75 lbs. In his last week he said "I can't believe I'm actually going to die from this" & as much as I wanted & needed to desperately cry, I couldn't because I still had to keep it together for him as crying took a lot of energy out of him. That day he almost fell as he was taking a "step up" from the patio back to the living room. He panicked & cried thinking he almost fell but I was right there walking behind him in case anything happened. I reassured him over & over that he wasn't alone, that I was there with him & to not over think it because nothing happened. His heart beat so fast that I worried he would have a heart attack. It did hurt him though that he was so weak at that point. In the last week, he started to decline faster than ever & even stayed asleep most of the time unless he was in pain & me needing to give him medicine. It was a very painful week emotionally & mentally. The morning of, by some miracle, he was able to talk once again & woke me up around 3:30 am by calling me. I thought I was imagining stuff but it was him trying to talk to me. I went to him & he said he wanted me to help him stand up. His legs were like jelly but between his sister & I, we were able to help him stand up for a few seconds. As I write this, I now realize that I wanted to break down so bad as I held him in my arms for what would be the last time. After sitting him back down, he told me twice in a row "i love you i love you" to which I replied back "and I love you more!" He then looked above me towards the ceiling to look at something ...or someone. I looked up quickly but didn't see anything but then realized, something or someone was there to tell him "it's time to go now" ... to which he took his last few breaths & passed away. Within 1.5 hrs his body was cold .... & the funeral staff was here to pick him up. I had never seen anything like it before but it was REALLY hard to see his body lifted like a little kid who possibly weighed very little. We had his funeral recently on the 27th & a cremation right after. I will miss him SO much!!! and so will our kids. I did create a gofundme account for the funeral but I don't know if such things can be shared here. I also did create a nice video with some of his life highlights. If it is ok to share, I'll post those links. Thank you everyone who was a BIG support system for him & understood the cancer talk, it is so very much appreciated!

With appreciation,
Ruth
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.

lovelife789
Posts: 161
Joined: Thu Aug 24, 2017 5:28 am

Re: Update from Riki's Wife

Postby lovelife789 » Sat Dec 03, 2022 4:12 pm

Miss him :o he has been so strong for so long...
Hope God sends you and your family comfort.
F/38 - Dx 8 Mar 17, CEA 189.5
Stage IV Sig. Colon, Liver mets, T3N0M1a, KRAS NRAS Wild
3/17- 6/17 - 6 x FOLFOX + Erbitux
7/17 - 1st & 2nd Liver resec
9-12/17' - 13 x FOLFOX
1-6/18 - NED
6/18 - PET SCAN showed a 0.8mm lung nodule, VATs
8/18 - 4/19 - NED
5/19 - recurrence 1 x PALN, 1x common iliac
FOLFIRI + Avastin x 12 - complete response, SBRT
12/19-5/20 - NED
5/20 - recurrence in LNs, tiny liver spots x 2, W n W due to COVID
8/20 - LNs very slightly increased, liver stable, one new liver spot

utahgal7
Posts: 201
Joined: Fri Sep 11, 2020 12:04 pm

Re: Update from Riki's Wife

Postby utahgal7 » Sat Dec 03, 2022 4:46 pm

Oh Ruth,

This news breaks my heart. I was just thinking about him recently. As you know, your husband was such a fighter and he provided heartfelt words of encouragement to many of us here. I will miss him greatly. Please post the link to your gofundme account because I would like to donate or if posting it is not allowed, please send me a DM with the information. Your husband was truly very special. I used to joke with him and call him my brother.

Peace and love to my brother, Riki, and to his sweet family. Ruth, if you need anything and I sincerely mean it, please DM me.

FUCK CANCER!!!!


Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles

IDF108
Posts: 15
Joined: Wed Nov 16, 2022 4:23 am
Location: Massachusetts

Re: Update from Riki's Wife

Postby IDF108 » Sat Dec 03, 2022 5:17 pm

Dearest Ruth,

Please accept my sincere condolences. God bless you and your kids.

RIP Riki. Memory eternal.

ccmc
Posts: 43
Joined: Mon Jan 21, 2013 9:13 pm

Update from Riki's Wife

Postby ccmc » Sat Dec 03, 2022 6:42 pm

We are so very sorry for your loss Ruth.
Please share your video with us here and as others have mentioned, the gofundme link would be best shared privately
via Private Message or email through Rikimarro's member account here.

Please feel welcome here for support from other members, as they learn of your loss.
Our Mod CRguy has already posted an In Memoriam to honour your husband.

With Sympathy for your loss.
Colon Club Moderators Committee

MadMed
Posts: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Update from Riki's Wife

Postby MadMed » Sat Dec 03, 2022 7:43 pm

Im so sorry Ruth. Riki fought so hard, wishing you and yours strength.
Last edited by MadMed on Mon Dec 05, 2022 1:54 pm, edited 1 time in total.
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

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

Update from Riki's Wife

Postby claudine » Sat Dec 03, 2022 8:03 pm

Feeling incredibly sad for you and your children, Ruth. This disease is truly awful and so cruel. It’s difficult to believe that Riki won’t be posting here anymore, he was such a strong voice on the forum! Thank you for sharing his last moments with us. He was lucky to have you as a companion through the ups and downs of life... Wishing you much strength for the days to come.
Much love,
Claudine
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

roadrunner
Posts: 460
Joined: Sun Jan 12, 2020 8:46 pm

Update from Riki's Wife

Postby roadrunner » Sat Dec 03, 2022 8:20 pm

This is very sad. I wish you and your children strength and comfort as you grieve. Riki was a brave and forthright voice on this forum, and contributed much to the knowledge and understanding of the patients and caregivers who post here. Characteristically, your post on his behalf provides deep inspiration as well. It is a good thing that he was able to find the strength and heart to give you his love at the last. Not everyone can do such a thing, and I hope it brings you comfort in the future. Peace.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (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 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp benign)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy for radio resistant met 7/7/23

ElenaSoprano
Posts: 2
Joined: Tue Jun 07, 2022 11:58 pm

Update from Riki's Wife

Postby ElenaSoprano » Sun Dec 04, 2022 2:35 am

Heartbreaking... As a new member of this forum, I found Riki's messages to be a source of much-needed strength and resilience. Ruth, my thoughts and prayers are with you and your family...

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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Update from Riki's Wife

Postby beach sunrise » Sun Dec 04, 2022 7:36 am

Ruth, my heart hurts so bad right now. You were blessed to have him in your life. He was such an important man here on the forum.
I will miss him so much!
I would also like to know about the gofundme for my friend Rikimaroo.
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

Markdale
Posts: 107
Joined: Wed Dec 02, 2020 4:45 pm

Update from Riki's Wife

Postby Markdale » Sun Dec 04, 2022 5:18 pm

My condolences. He was very knowledgeable and helped guide a lot of people here.
09/20:Diagnosed after colonoscopy for bleeding.
MRI and ct scan confirmed tumor at rectosigmoid junction aswell as lung nodules in RLL (1X1.2cm) and RUL (3X.5cm)
10/20: LAR tumour t3n2m1 4/24 lymph nodes.
11/20: pet scan confirmed Mets
11/20: folfoxiri - 10/6/21. 12 rounds in total
1/1/21 thoracotomy 1 met removed
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody
9/23 added pd1 blocker
12/23 bilateral VATS all visible (7) lesions removed

Luna18
Posts: 30
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: Update from Riki's Wife

Postby Luna18 » Mon Dec 05, 2022 8:37 am

I am really sorry for your loss. Please, DM me with the gofundme link.
Sending you and your family love and light
Patricia
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

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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Update from Riki's Wife

Postby GrouseMan » Mon Dec 05, 2022 12:26 pm

I am very sorry for your loss Ruth. It is tremendously hard for those of us that are caregivers. I am happy that he told you he loved you. My wife was unconscious for the last several days of her life and we could not discuss our feelings. I was quite the wreck for some time afterwards. Took me more than a year I would say to regain my mental balance. I thought I was getting dementia for a while as I would walk into a room and forget why I went in there. For me my attention span and short-term memory seemed to be in disarray. I hope you don't experience that. I hope you have family and friends nearby to help you through your grief. I didn't.

Sincerely

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017


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