Update from Riki's Wife

Please feel free to read, share your thoughts, your stories and connect with others!
ElenaSoprano
Posts: 1
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...

User avatar
beach sunrise
Posts: 752
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 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 8s
12/20 CEA 8s-9s
ADAPT++++ chrono 1/23 TM drug
CEA
10/23 26.x
12/23 22.x
1/5/23 17.1
1/20/23 15.9
Nodule RML SUV 1.3 5mm
POLD1 KRAS Q61H
Chem-sens test NCI "Test failed Not enough ca cells to test

Markdale
Posts: 61
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
12/20: ct lung biopsy of lung nodule Biopsy unsuccessful
1/1/21 thoracotomy 1 met removed that wasn’t noticed on ct
2/2022 sabr to 2 lung nodule
09/22 PET scan progression of sabr’d nodules
10/22 phase 1 trial bispecific antibody

Luna18
Posts: 21
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

User avatar
GrouseMan
Posts: 879
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

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

Re: Update from Riki's Wife

Postby Rikimaroo » Mon Dec 05, 2022 7:05 pm

Thank you all, really I thank you so much for your words. As I've read my updated post to you all, I've cried, really really cried bcuz that last week was really tough in all sorts of ways. He knew it hurt me so much to see him the way his frail body was, to know his mind was breaking down & falling asleep more & more, to realize he could barely talk & what's more, he would only talk to me bcuz I could read the signs of him needing something. My voice would calm him, even when I would talk a bit loud in his ear so he would know it was me touching or moving & giving him medicine. The morphine would keep him asleep which sucked bcuz I wanted him to talk more & more but the pain was bigger so I had to keep giving it to him. I'll send a private message to those who requested but in case I miss anyone, the gofundme page for him can be found by typing this in the search: In loving memory of Narine Harripersaud...

He also has a YouTube Channel (can you believe that?!) & will happy to know just how much of a funny dude he was. That channel can be found under: Rikimaroo (there's two channels with this name but the one with the Music Notes image is his). The video I have posted for friends & family to see (which I've added some more things to it) is private: https://youtu.be/mGlvKLRDzok (maybe you can copy & paste?) but I would love to share that with you guys :-)

Thank you SO much!
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.

MadMed
Posts: 200
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Update from Riki's Wife

Postby MadMed » Mon Dec 05, 2022 8:42 pm

Thank you for sharing, this was moving. I felt a sense of kinship with Riki, and now with the images, I believe we would have been great friends. His memory lives within you and the children.
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

nmorgen
Posts: 54
Joined: Sat Nov 05, 2022 10:31 am

Re: Update from Riki's Wife

Postby nmorgen » Tue Dec 06, 2022 3:16 am

I am so very sorry for your loss.
DH age 47
DX 10/22 stage 4
2 tumors in sigmoid colon 2 Mets liver
adenocarcinoma
MSI-H, TMB-H 38, KRAS G13V, ERBB2 neg, BRCA2, POLE
Grade 1 well differentiated
12/1/22 Yervoy and Opdivo CEA 5.4
12/19/22 Yervoy & Opdivo CEA 4.6
01/12/22 Yervoy & Opdivo CEA 3.9

Rock_Robster
Posts: 742
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Update from Riki's Wife

Postby Rock_Robster » Tue Dec 06, 2022 5:36 am

I’m so sorry to hear this. Thank you for sharing your story together and personal photos here. Riki was a light and institution for many of us.
40M Australia
2018 Dx RC 12cm high
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA: Nov-18: 14 then 2. Jun-22: 5. Sep: 10. Nov: 19. Dec: 17, Jan-23: 17
11/18 FOLFOX
3/19 Liver resect
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resect
NED
11/21 Liver met, PALN, sub-cm lung mets
3-4/22 Lymphadenectomy, liver SBRT
9/22 Liver met, PALN
10/22 PALN SBRT
11/22 Liver mets, nodes, peri nodules. Xeloda+Avastin
1/23 Liver/lungs stable. Lymph/peri undetectable

aquarian_asian
Posts: 35
Joined: Wed Jul 07, 2021 7:07 am

Re: Update from Riki's Wife

Postby aquarian_asian » Tue Dec 06, 2022 8:20 am

Sorry for your loss, Mrs Riki and please take care of you and family. I usually read this post and it is really a sad news.
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

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

Re: Update from Riki's Wife

Postby Rikimaroo » Thu Dec 08, 2022 11:25 am

Good morning guys,

So in the process of "cleaning up" i'm having a hard time figuring out what to do with all the medical supplies my husband was given from hospice. He had a colostomy bag & so we got A LOT of supplies. I would love to help someone out by shipping out these supplies.. hope this is not something weird I'm offering? I don't know but i feel like throwing it out is a waste & that it could help someone else out. This includes diapers, colostomy bags, & many other little supplies that goes with this. They were not used or opened. Am really hoping it's not weird ...

Cleaning up after a loved one has passed away is & can be overwhelming. The mountain of things to straighten out from his name to mine, even the health insurance for the kids is stressful (they don't want to talk to me as I wasn't added in the account lol) so offering the death certificate is ready for all these companies. My husband left me as much information as possible written down but now that I'm having to take over & clean up, I'm realizing that I am missing a lot of information such as account #'s, who the companies are to be paid monthly, username/passwords & so little by little I've started to write down additional notes to his spreadsheet. I thought I was more than ready but no.... life is showing me that there's SO much more to be aware of. Can't wait till tax season is here so I can go completely insane :-( but that too I'll have to overcome. Thank God I have many who are willing to hep me out with information they know how to get, otherwise I would be so lost.

My husband was into IT (& so am I) so computers was something he loved. Anything to help out because to him & myself, computers is like putting a puzzle together but to him, teaching people about how to work better with their computer was "satisfaction" of a job well done.

Am hoping to hear from someone ... even if it is to tell me "you're crazy Ruth, you don't offer those things to anyone" ... lol

Sincerely,
Ruth
GoFundMe link:
please contact poster via PM - ccmc
Celebrating Narine's fun life moments:
https://youtu.be/mGlvKLRDzok

MadMed
Posts: 200
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Update from Riki's Wife

Postby MadMed » Thu Dec 08, 2022 1:27 pm

Thanks for the note Ruth, this helps me make sure i'm organized when time comes. My wife would be completely lost, fortunately there's someone there to help her.
Also not weird at all about asking about donating the stuff, i am sure the need is there. Hopefully someone here has a good tip, i remember there was something similar on this board.
Also, thanks for sharing the gofundme, just donated.

Riki was a good person, unfortunately heaven needs those people back the most it seems.
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

User avatar
Peregrine
Posts: 137
Joined: Tue Mar 01, 2022 1:18 am

Re: Update from Riki's Wife

Postby Peregrine » Thu Dec 08, 2022 1:54 pm

Thanks for the update, Ruth. I hope you can continue to keep posting here from time to time.

Just a short note to say that I'm sure it's OK to give away those kinds of unexpired, unopened supplies. That's exactly what I did after I had my ileostomy reversal. I was fortunate to find a local colon cancer support group that was very happy to take whatever I wanted to give them.

It's not the same for prescription medications, however. By law, they cannot be given to anyone other than the person to whom they were prescribed. After I finished chemo, I had a lot of unused prescription nausea and pain meds that I never used. My only option was to take them to a local pharmacy and ask them to put them in their secure medical supply trash bin.

I'm hoping you and your children will be able to have a nice holiday season. I appreciated hearing the Christmas carols that Riki had recorded on his YouTube music channel in 2019. Your kids are really very talented in music!

Take care, and don't stress out too much about the taxes and accounts right now. That can wait till later.

Lee
Posts: 6206
Joined: Sun Apr 16, 2006 4:09 pm

Re: Update from Riki's Wife

Postby Lee » Thu Dec 08, 2022 4:22 pm

Rikimaroo wrote:Good morning guys,

So in the process of "cleaning up" i'm having a hard time figuring out what to do with all the medical supplies my husband was given from hospice. He had a colostomy bag & so we got A LOT of supplies. I would love to help someone out by shipping out these supplies.. hope this is not something weird I'm offering? I don't know but i feel like throwing it out is a waste & that it could help someone else out. This includes diapers, colostomy bags, & many other little supplies that goes with this. They were not used or opened. Am really hoping it's not weird ...


Am hoping to hear from someone ... even if it is to tell me "you're crazy Ruth, you don't offer those things to anyone" ... lol

Sincerely,
Ruth
GoFundMe link:
please contact poster via PM - ccmc
Celebrating Narine's fun life moments:
https://youtu.be/mGlvKLRDzok


Hi Ruth,

Please accept my condolences on the passing of you husband. He was a good man.

Regarding ostomy supplies, there are organizations out there that will gladly accept your left overs ostomy supplies and give them to people who need them.

https://www.ostomy.org/

You might want to click on the above link. It will take you to UOAA (United Ostomy Association of America). Someone at that site should be able to direct you to the right people/organization.

Good luck and again please accept my condolences on the passing of your husband.

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!

Sunnycd
Posts: 86
Joined: Fri Feb 26, 2021 10:36 am

Re: Update from Riki's Wife

Postby Sunnycd » Sun Dec 11, 2022 9:34 am

Oh, Ruth, I am so so sorry. I just watched the video and it was so great to see his face and his family! His posts helped many through our own journeys, and I could see his love for you whenever he mentioned “my lovely wife”. I gave away all my supplies to my hospital (after reversal), when I went to my docs appt, but I checked w the nurse in advance.

As for everything else, take it day by day. You don’t need to have it all figured out in 1 day, a week, a month. When my dad passed, we started with the most pressing parts, and left all the other parts (donating, cleaning up, etc) for later. 8 years later, my mom is still organizing, one drawer at a time.

Sending my love to you and your family, 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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 18 guests