Update from Riki's Wife

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

Re: Update after 2nd opinion discussion

Postby Rikimaroo » Tue Sep 20, 2022 9:02 am

Hello,

Everyone, where too start. So after my first immunotherapy session the next day (Saturday) I needed to get a blood transfusion because I was low. Then later that night I was bleeding from my bottom again alot and honestly it most likely was mixture of blood and mucus and drainage stuff....So I went to the ER spent Saturday to Monday there for them to monitor my blood levels. They also did a CT Scan and the tumor in pelvic is causing issues with bladder and fistulas. They didn't do much other then at least identify that I have fistula from tumor to anal region that's the two bumps I keep feeling, nothing can be done surgically right now.

Spoke with my new doctor at UM and he says immunotherapy takes are 4th treatment to see results and determine if it is making any improvements so will be trying my best to survive until then. It's been hard, I can't control my peeing anymore, it just comes out when it wants to. I have a little urinal I pee in if needed or when I am just tired and sleepy I just pee in my depends diaper which has worked, but it get's soaked at night and I have to get up and change it all dry up and back to the same routine.

I am at my wits end with the peeing myself, but glad its coming out either way. I Prefer to control and pee, but the pelvic tumor is a destructive force right now in my pelvic and affecting everything. I am so skinny, 121LBs, I am having a hard time gaining weight. Even though I am not eating exactly the way I use to, I still eat enough to gain some weigh. I don't know what to do here about gaining weight.

By the way I am always COLD. Anyone else have this problem? I am always always cold, my finger are freezing my hands shoulders, I am always covering. I feel like I am just wasting away guys. I just took a boost this morning, but I sent a message to my doctor about if there are any multivitamins I can take that won't interfere with treatment, I need to start gaining some weigh to get strength.

Well that is my update for now.

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.

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

Re: Update after 2nd opinion discussion

Postby claudine » Tue Sep 20, 2022 9:19 am

Oh Riki you are going through so much :cry:
I bet the cold is related to you being so skinny, you probably have zero fat left.
Have you started immunotherapy yet? How far apart are the treatments?
Sending lots of thoughts your way XXXXX
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

Re: Update after 2nd opinion discussion

Postby roadrunner » Tue Sep 20, 2022 4:13 pm

Riki: I wish you good fortune in getting to the 4th treatment to see where things stand and maybe start turning things around. I also wish you strength in these current difficult times.
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

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Peregrine
Posts: 255
Joined: Tue Mar 01, 2022 1:18 am

Re: Update after 2nd opinion discussion

Postby Peregrine » Wed Sep 21, 2022 10:29 am

Riki-

What is your BMI right now? You should not let it drop below 18.5, because that is the cutoff for the cachexia danger zone:

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=46365&p=340274#p340274

https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=58606&p=461434#p461434
Last edited by Peregrine on Wed Sep 21, 2022 7:01 pm, edited 1 time in total.

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

Re: Update after 2nd opinion discussion

Postby beach sunrise » Wed Sep 21, 2022 3:25 pm

I admire you very much for being so open about your cancer, side effects and personal hell!
I think about you every day and am so happy you post updates.
Hopefully you will turn the corner soon and treatments works to lessen the struggles.
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

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Atoq
Posts: 412
Joined: Wed Oct 25, 2017 9:31 am

Re: Update after 2nd opinion discussion

Postby Atoq » Thu Sep 22, 2022 4:15 pm

I am so happy to read this! Really fantastic news!

All the best


Claudia
1972, 2 kids
Dx rectal cancer 10.2017
T3N2aMX (met left lung 8 mm)
Lynch neg
CEA 1.8
Neoadjuvant chemoradio Xeloda + 25x2 Gy
05.12.17 laparotomic surg. for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle lung biopsy
07.05.18 CAT scan, lung met 11 mm
04.06.18 ileo reversal
26.06.18 wedge VATS
24.08.18, 31.02.19 CAT scan
12.09.18, 06.02.19 scope, CEA 1.6
19.11.18 scope
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED
2023 NED

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

Re: Update after 2nd opinion discussion

Postby Rikimaroo » Tue Oct 04, 2022 3:06 pm

Hello All Update:

I basically signed up for Hospice care. I am done guys tired of it all. I Just got nephrostomy bags put in because I was going into renal failure because of tumor pressing on my ureter.

Bottom line the Immunotherapy doesn't work for me or my type of cancer I knew this going in MSS is not a candidate unless high TMB which maybe on of my tumors highlighted as such with liquid biopsy, but liquid biopsy is not better then tissue biopsy and main tumor in pelvic TMB is 3.75 which is really low. Even my new Onc said it doesn't work for me but wanted to give it a shot because he likes to go outside the box.

Also insurance company not paying I ended up paying for a portion and I am just honest SICK of everything. SICK OF DOCTORS, sick of pokes, sicks of scans, sick of procedures, just want to relax and enjoy my life as much as I can.

I want to go peacefully at this point, I am going to try on natural tea that this company sold me here to give it a shot as a last ditch effort, but honestly guys I am ready.
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: 216
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: Update after 2nd opinion discussion

Postby MadMed » Tue Oct 04, 2022 4:04 pm

Breaks my heart Riki. I wish i could give you a hug. I wish peace for you and yours. You gave it all.
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 » Tue Oct 04, 2022 5:53 pm

This horrible, horrible disease. After all you've been through, I had so much hope for immunotherapy, for you to finally catch a break.
Words are so inadequate...
I wish you a peaceful time with your loved ones.
Last edited by claudine on Wed Oct 05, 2022 9:07 am, edited 1 time in total.
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

Re: Update after 2nd opinion discussion

Postby roadrunner » Tue Oct 04, 2022 8:29 pm

Riki: I am sad to hear this news. I wish you strength and 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

User avatar
beach sunrise
Posts: 1034
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 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

utahgal7
Posts: 201
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
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

claudine
Posts: 809
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 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

Luna18
Posts: 30
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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