Update after 2nd opinion discussion

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Rikimaroo
Posts: 430
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Update after 2nd opinion discussion

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: 286
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: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/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 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear

MadMed
Posts: 174
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: 727
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 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; reversal 09/22;
L2-L3-L4-L5 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri + Avastin 03/19 - 01/20;
adjuvant chemoradiation (Xeloda) 06/22

rp1954
Posts: 1605
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 to almost nothing mid 2018, mostly IV C

aquarian_asian
Posts: 30
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: 67
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: 35 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

prayingforccr
Posts: 402
Joined: Sun Jun 28, 2020 4:44 pm

Re: Update after 2nd opinion discussion

Postby prayingforccr » Sat Sep 03, 2022 9:16 am

Rikimaroo wrote: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


Riki………perhaps ask them if they would do sbrt to the lesion(s) concurrent with the first infusion.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

utahgal7
Posts: 90
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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS; moderately differentiated adenocarcinoma
05/20 CAPEOX
08/20 Ileostomy reversal
09/20 CT scan; suspicious areas in liver; 10/20 MRI liver; dx hemangioma
12/20 CT scan; lung nodules (watch and wait);
07/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung

User avatar
CRguy
Posts: 10396
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
15 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Rikimaroo
Posts: 430
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.

prayingforccr
Posts: 402
Joined: Sun Jun 28, 2020 4:44 pm

Re: Update after 2nd opinion discussion

Postby prayingforccr » Sat Sep 03, 2022 8:15 pm

Looks like skin, blood, lungs, liver

https://www.futuremedicine.com/doi/10.2 ... -2020-0994
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
8/22 beginning sbrt and immunotherapy
10/22 TIL Therapy

User avatar
beach sunrise
Posts: 694
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
Neoadj 5FU/rad 6 wk
High dose IVC 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 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Sunnycd
Posts: 83
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
MSS, RAS/RAF wild, PIK3CA mutant

Rikimaroo
Posts: 430
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.


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