Update from Riki's Wife

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beach sunrise
Posts: 756
Joined: Thu Mar 05, 2020 7:14 pm

Re: Update after 2nd opinion discussion

Postby beach sunrise » Tue Oct 04, 2022 10:48 pm

We all love you, Riki!
I pray you live pain free and make long lasting memories for your family.
My oncologist recommended a book about how how the soul lives on. I will ask again about the book because I didn't write it down. I lost the light of my life last year and am still having a very hard time, still in the day it happened, but anyway, onc suggested the read so I will pass it on to you.
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

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: Update after 2nd opinion discussion

Postby utahgal7 » Wed Oct 05, 2022 8:26 am

Riki,

Oh no, no, no, no no!!! I was praying every day for you, man! I had such high hopes that immunotherapy was going to work for you. Cancer is so f*cking awful and so unfair. You have fought so hard and for so long. Now, your body can rest.
I will miss you! My heart is breaking.

Peace and love to you, my brother,

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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

Claudine
Posts: 757
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Update after 2nd opinion discussion

Postby Claudine » Wed Oct 05, 2022 9:05 am

Duplicate...
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 chemorad (Xeloda) 06/22; SBRT 11/22

Luna18
Posts: 21
Joined: Mon Aug 01, 2022 12:22 pm
Facebook Username: piglesias

Re: Update after 2nd opinion discussion

Postby Luna18 » Wed Oct 05, 2022 9:16 am

I am so, so sorry. It also breaks my heart. You dont know me but I have followed your journey for long time. This is so unfair! I was really hoping that Immunotherapy was going to work!
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

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

Re: Update after 2nd opinion discussion

Postby Rikimaroo » Wed Oct 05, 2022 10:50 am

Thank you guys so much for the posts it’s very very touching I really appreciate it just so y’all know I’m not dying this minute lol but the decision to stop everything is just so I can be comfortable I’m so tired of it.

Last night was the first time I actually went to bed at 12 and woke up at seven I’ve never had a long day sleep in a while.

Honestly guys I don’t even know what to say I will I’m gonna be in a couple of months just gonna let things flow as it is enjoy life stop thinking about negative stuff and that’s it I love all of you guys for being so kind helpful and let’s keep on chatting and fighting I feel for each one of your family members that are going through this it’s not easy it causes a lot of stress

Everyone thinks they have a cure for you becomes very aggravating
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.

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CRguy
Posts: 10422
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
15 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Bpaint
Posts: 42
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: 115
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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

IDF108
Posts: 1
Joined: Wed Nov 16, 2022 4:23 am

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: 40
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: 202
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: 757
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 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 chemorad (Xeloda) 06/22; SBRT 11/22

roadrunner
Posts: 347
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
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)


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