Update from Riki's Wife

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DarknessEmbraced
Posts: 3731
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! :)

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Update after 2nd opinion discussion

Postby prayingforccr » Sun Sep 11, 2022 12:25 pm

Rikimaroo wrote: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



I had a transfusion last october, Rikimaroo when my hemoglobin dropped to 8 :(

Wasn’t a big deal.

Was my first overnight stay in the hospital since I was born.

In and out.
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 sbrt and immunotherapy failed
12/22 TIL Therapy

Dennyp
Posts: 49
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

Rikimaroo
Posts: 434
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: 747
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 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: 312
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
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.)

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Update after 2nd opinion discussion

Postby prayingforccr » Wed Sep 21, 2022 9:56 am

Reading this brought me very close to tears, riki.

The only thing I can add would be to share how I gained a lot of my weight back from 135 lbs.

Each day I would have a banana cocoa peanut butter blended smoothie:

1 large banana, peeled, sliced, and frozen
3 Tablespoons unsweetened cocoa powder
6 oz Chobani 0% Greek yogurt (or 2%, flavored or unflavored)
3/4 cup whole milk
1 Tablespoon honey, maple syrup, or agave
1 Tablespoon peanut butter (any kind you like)
1 Cup of ice
1 scoop of vanilla protein powder

I would also eat a three egg ham and cheese omelette.

Hoping you pull out of this valley.
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 sbrt and immunotherapy failed
12/22 TIL Therapy

User avatar
Peregrine
Posts: 132
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.

User avatar
beach sunrise
Posts: 726
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
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"

User avatar
Atoq
Posts: 407
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 surgery 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 colonscopy
20.08.19 CAT, eco
13.09.19 scope, CEA 1.2
18.03.20 CAT, eco, scope, NED
29.11.20 CAT, NED

Rikimaroo
Posts: 434
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: 189
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: 747
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 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

prayingforccr
Posts: 461
Joined: Sun Jun 28, 2020 4:44 pm

Re: Update after 2nd opinion discussion

Postby prayingforccr » Tue Oct 04, 2022 7:02 pm

No words, rikimaroo.

Just tears.

Some of which are admittedly selfish.

“Lord Jesus Christ, Son of God, have mercy on me“.
Last edited by prayingforccr on Wed Oct 05, 2022 9:01 am, edited 2 times in total.
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 sbrt and immunotherapy failed
12/22 TIL Therapy

roadrunner
Posts: 312
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
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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