Update from Riki's Wife

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

Update from Riki's Wife

Postby Rikimaroo » Fri Sep 02, 2022 11:11 am

Hello Guys,


I got some good news and I want to just ball out in tears while typing this. I have been approved for
Pembrolizumab Ipiliumab Nivolumab, my tumor mutation burden has increased significantly since May and I don't know why Cleveland Clinic never checked, i just feel like they checked out on me. They never did a Liquid Biopsy on me and the new University of Miami did.

My TMB increased to 11.85 so I qualify for Keytruda etc...

OMG OMG..I pray this cures me. Just the other day I was talking about hospice care.

Please pray for me to be successful with this like our other friends on here.

Best Regards,
Riki
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.

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

Re: Update after 2nd opinion discussion

Postby roadrunner » Fri Sep 02, 2022 1:23 pm

Great to hear this! I hope you are rewarded for your courage and perseverance. Good luck!
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

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

Re: Update after 2nd opinion discussion

Postby MadMed » Fri Sep 02, 2022 1:24 pm

This is awesome Riki, Great news! Immunotherapy should be effective and easier to tolerate than chemo. I’m so happy for this.
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

Re: Update after 2nd opinion discussion

Postby claudine » Fri Sep 02, 2022 1:27 pm

This is SO EXCITING!!!! Very happy for you Riki, and your family :D :D :D
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

rp1954
Posts: 1853
Joined: Mon Jun 13, 2011 1:13 am

Re: Update after 2nd opinion discussion

Postby rp1954 » Fri Sep 02, 2022 1:34 pm

congrats.

... never checked, i just feel like they checked out on me.

From at least 2 out 3 for us, to that one doctor in the world that worked something important out.
Never give up. You have to look out for, and advocate for, yourself.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper chemo to almost nothing mid 2018, IV C-->2021. Now supplements

aquarian_asian
Posts: 48
Joined: Wed Jul 07, 2021 7:07 am

Re: Update after 2nd opinion discussion

Postby aquarian_asian » Sat Sep 03, 2022 7:13 am

very happy for you RIki. Each one of us have place in this earth and you deserve one !!!! Best prayers & wishes
Thanks
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

Nor Cal
Posts: 89
Joined: Sun Dec 06, 2020 8:18 pm

Re: Update after 2nd opinion discussion

Postby Nor Cal » Sat Sep 03, 2022 8:28 am

That's great!!
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 55 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

utahgal7
Posts: 200
Joined: Fri Sep 11, 2020 12:04 pm

Re: Update after 2nd opinion discussion

Postby utahgal7 » Sat Sep 03, 2022 10:39 am

Riki,

This is wonderful news. I am so happy for you and your family. I am glad that you pursued other options and didn't take no for an answer. IMO, it seems that some doctors have a tendency to "check out" on patients that have metastasis. It's like they are ready to move on to the next patient. SMH!

I wish you all the best with your clinical trial. Please continue to let us know how you are doing.

Don't give up, my friend! Keep fighting! All of your friends here on this forum are with you on your journey to NED!


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

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

Re: Update after 2nd opinion discussion

Postby CRguy » Sat Sep 03, 2022 12:59 pm

Rikimaroo wrote:Please pray for me to be successful with this like our other friends on here.

DONE !

Cheers and best wishes moving forward on the Journey
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

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

Re: Update after 2nd opinion discussion

Postby Rikimaroo » Sat Sep 03, 2022 4:07 pm

Thank you everyone kindly for all the lovely comments. PCCR it’s a good question to ask after I do my first PET scan with UM. We can review then any plans.

That would be great for any lung Mets I presume.

Thanks
Riki
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.

User avatar
beach sunrise
Posts: 1033
Joined: Thu Mar 05, 2020 7:14 pm

Re: Update after 2nd opinion discussion

Postby beach sunrise » Tue Sep 06, 2022 5:04 pm

Best news ever, Riki!!!
I am so so so happy you found a working plan. Way to go researching and advocating for yourself.
Keep us in the loop with progress.
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

Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: Update after 2nd opinion discussion

Postby Sunnycd » Wed Sep 07, 2022 4:06 pm

Oh, Riki, so happy for you! Sending prayers and positive thoughts your way from NJ. Xoxo.
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
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

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

Re: Update after 2nd opinion discussion

Postby Rikimaroo » Sat Sep 10, 2022 6:51 am

Everyone just wanted to give an update I got my first immunotherapy yesterday and all went well no issues whatsoever

Only issue I have right now is the fact that I’m bleeding through my bottom because of a tumor which most likely made a fistula will wait for the doctor to let me know we have to do a scan.
I have an MRI scheduled soon

Has anyone done a blood transfusion before I’m a little scared never done it before is it pretty easy did you use your port
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.

DarknessEmbraced
Posts: 3816
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Update after 2nd opinion discussion

Postby DarknessEmbraced » Sat Sep 10, 2022 7:30 am

That's wonderful news! :) I hope all goes well for you.
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! :)

Dennyp
Posts: 84
Joined: Thu Oct 29, 2020 9:28 pm

Re: Update after 2nd opinion discussion

Postby Dennyp » Sun Sep 11, 2022 1:10 pm

Great news!
5/19 IIIC sigmoid cancer 2/25 lymph nodes positive
5/19 surgery
7/19 FOLFOX 6 months
9/20 recurrence to single lymph node
10/20 FOLFIRI 5 rounds
1/21 surgery to remove lymph node
4/21 CT NED
8/21 CT NED
11/21 CT NED
2/22 CT NED
5/22 CT NED
8/22 PET NED
11/22 CT NED
3/23 PET lesion on liver
3/23 MRI confirmed lesion
4/23 liver surgery aborted lesion found on diaphragm
5/23 chemo started
7/23 CT shows shrinkage of lesion, consult scheduled with surgeon


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