STAGE IV RC GUYS AND GALS

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stu
Posts: 1618
Joined: Sat Aug 17, 2013 5:46 pm

Re: STAGE IV RC GUYS AND GALS

Postby stu » Mon Sep 09, 2024 1:21 pm

:D Just wrote a big reply and it disappeared!

That’s a very accurate description Roadrunner ! :D
Never worried much about cancer but did about her family and hated osteoporosis !
We should have paid more attention to her bone density .
We only use chemo for visible disease here , so only every had 12 cycles of chemo to get on top of her liver spread way back . Then ten months of a biological agent last year when she recurred in her mediastinal Lymph nodes and one lung met .
She had a great response and the lymph nodes disappeared and the lung node went right down .
A scan two weeks before she died showed an extensive spread , too many to count .

How she contained that level of microdisease is a mystery .
She had a good immune system . Looked after her gut biome . Ate fruit and nuts for breakfast but had a good appetite. Liked to be out and about and continued that right up to the week before she died .
Her tumour sample is being tested as part of a longevity study . There was a lot of questions about her diet , her approach to life . The focus seemed to be on the role of T cells .

A dr told her it would be good to add in pomegranate seeds when on a her biological treatment as it had a role to play with the gut absorption. She did as recommended and the oncologist told her she had great results but wanted to go back and speak with the radiologist as she was not convinced they could be real ! However we had seen this way back when she was on chemo .

What causes the shift in either direction who knows but I do hope some scientists is working on it .
She stayed connected to life and family to the end . I class that as a win !

I wish you all every success going forward !
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

roadrunner
Posts: 512
Joined: Sun Jan 12, 2020 8:46 pm

Re: STAGE IV RC GUYS AND GALS

Postby roadrunner » Mon Sep 09, 2024 1:43 pm

Stu: That is a win of epic proportions! Reasonably regarded, she beat Stage IV CRC, and on her terms. Yes, it may technically have played a role in her death, but I think nearly all of us would’ve taken an 82-yr. run if offered at the start (of life, not cancer), and clearly she enjoyed it nearly to the end, which is far better than most perfectly healthy people do. She was the equivalent of an Olympic champion, really. And in the sport that matters most.
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
Chest CT 3/30/21 growth 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
6/20/22 TAE rectal polyp)
NED from 3/22 - 3/23
4 cycles FOLFIRI
LUL VATS lobectomy 7/7/23
5 cycles FOLFOX
APR 6/24. NED for now

claudine
Posts: 822
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: STAGE IV RC GUYS AND GALS

Postby claudine » Mon Sep 09, 2024 3:15 pm

Many thoughts to you and yours, Stu. This is pretty amazing, what your mom did, keeping cancer at bay for so long with minimum treatment! Someone posted somewhere (apologies if it was on this forum and one of you recognizes themselves!) that "unless the proverbial bus hits you, eventually your cancer is likely to get you", but that eventuality took many years for your mom, during which she had a good life.
Losing a parent is hard no matter how you slice it, so you are in my thoughts; thank you for dropping by, and giving us the news.
Much love,
Claudine
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

IDF108
Posts: 26
Joined: Wed Nov 16, 2022 4:23 am
Location: Massachusetts

Re: STAGE IV RC GUYS AND GALS

Postby IDF108 » Wed Sep 11, 2024 11:23 am

Stu,

Please accept my condolences, and may your dearest Mum rest in peace reunited with your Dad.

JP66
Posts: 47
Joined: Sun Jan 21, 2024 8:42 am
Facebook Username: joseph peck
Location: Westchester, NY

Re: STAGE IV RC GUYS AND GALS

Postby JP66 » Mon Oct 21, 2024 7:01 pm

Paige,

I wanted to ask you directly as to how you are doing and didn't know where else to pose the question other than a PM so I hope this is okay.

Anyways, how are you doing?

You are truly inspiring here with your positive attitude and comments.
Male 58 y/o
TIIIbN+M1 - Stage IV (10/23) - 2 left common iliac lymph nodes metastatic
MSI - MSS; KRAS non-mutant
Modified Neo-adjuvant Therapy (FOLFIRINOX instead of FOLFOX)
tumor 7.4 cm from AV, moderately differentiated
12/23 - 27 treatments rad+Xeloda
03/24 6 FOLFIRINOX infusions
4/24 PET Scan and MRI - tumor gone, lymph nodes normal
5/30/24 Total Mesorectal Excision (TME) + lymphadenectomy of 2 left common iliac LN
7/15/24 6 rounds FOLFOX
CEA (10/23-10/24) 1.8,1.3,1.6, 1.8, 1.6,2.1,2.7

utahgal7
Posts: 240
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Tue Oct 22, 2024 7:46 am

Hi Joe,

Thank you for the kind words. That is really sweet of you. I am doing ok. CT scan in September and MRI of brain in October did not show any progression. That was a relief to hear. Again, I am feeling good physically. Mental health is a daily challenge though. I have just resigned myself to think of at least 1 happy thing each day. Not gonna lie, it's hard, trying to be positive especially when negative thoughts come creeping in. Therapy, medication, acceptance and silent meditation have helped me quite a bit.

How are you feeling? Were you able to have fun this past summer and spend time on your boat? Hope you were able to make cherished memories with your family.

Ok, I don't know if you follow baseball but I want to ask if you are a Yankees fan. If you are a Yankees fan, I won't hold it against you, lol. My prediction is Dodgers 4 games to 3 over the Yankees. What do you think?

Take care,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
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; 1.4; 1.2; 1.0
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
4/24 left brain craniotomy (RC met)

JP66
Posts: 47
Joined: Sun Jan 21, 2024 8:42 am
Facebook Username: joseph peck
Location: Westchester, NY

Re: STAGE IV RC GUYS AND GALS

Postby JP66 » Mon Oct 28, 2024 6:55 am

utahgal7 wrote:Hi Joe,

Thank you for the kind words. That is really sweet of you. I am doing ok. CT scan in September and MRI of brain in October did not show any progression. That was a relief to hear. Again, I am feeling good physically. Mental health is a daily challenge though. I have just resigned myself to think of at least 1 happy thing each day. Not gonna lie, it's hard, trying to be positive especially when negative thoughts come creeping in. Therapy, medication, acceptance and silent meditation have helped me quite a bit.

How are you feeling? Were you able to have fun this past summer and spend time on your boat? Hope you were able to make cherished memories with your family.

Ok, I don't know if you follow baseball but I want to ask if you are a Yankees fan. If you are a Yankees fan, I won't hold it against you, lol. My prediction is Dodgers 4 games to 3 over the Yankees. What do you think?

Take care,

Paige


Hah! I grew up during the era of Tom Seaver (actually met him once on an airplane when I was a pilot for United Airlines flying out of JFK!) and so to me the Yankees have always been the evil brother, LOL. Nothing I'd like more than to see the Dodgers trounce the Yankees and so far looks like your prediction is possible if not likely!

Yes to enjoying this summer with the fam. I was a little slow and certainly couldn't take part in water sports like years past, but I was able to drive my new boat and that made me feel almost normal, at least while I was driving. Lucky me this issue has allowed me to tap financial savings and receive resources from my generous union benefits so I actually have purchased a Porsche GT4 which was a "Bucket List" item that I drive exclusively on a race track in CT. I also am super lucky and purchased a small two engine airplane that I'm taking delivery of on Thursday, and in which I hope to fly with my wife (she's actually a qualified pilot as well and I was her flight instructor back in '89 which is how we met) and me down to Florida on vaca and out to California to visit one of my daughters. I'm hoping that LARS won't be so bad as to keep me from making 2-3 hour flights as I am planning ileostomy reversal in December, but meanwhile I'm definitely trying to enjoy life to the fullest each and every day.

Anyways, so great to hear from you and just know that I take inspiration from your online positivity!

All the Best - Joe
Male 58 y/o
TIIIbN+M1 - Stage IV (10/23) - 2 left common iliac lymph nodes metastatic
MSI - MSS; KRAS non-mutant
Modified Neo-adjuvant Therapy (FOLFIRINOX instead of FOLFOX)
tumor 7.4 cm from AV, moderately differentiated
12/23 - 27 treatments rad+Xeloda
03/24 6 FOLFIRINOX infusions
4/24 PET Scan and MRI - tumor gone, lymph nodes normal
5/30/24 Total Mesorectal Excision (TME) + lymphadenectomy of 2 left common iliac LN
7/15/24 6 rounds FOLFOX
CEA (10/23-10/24) 1.8,1.3,1.6, 1.8, 1.6,2.1,2.7

User avatar
beach sunrise
Posts: 1139
Joined: Thu Mar 05, 2020 7:14 pm

Re: STAGE IV RC GUYS AND GALS

Postby beach sunrise » Tue Oct 29, 2024 1:53 pm

Hi Paige, just catching up on here and read your 10-22 update. I am very happy that scans were good. I hate to hear about the mental issues. I found out in August how terrible it is. I checked out mentally for 3 1/2 weeks and do not remember anything. It was a devastating thing to come out of it and thinking it was still mid Aug when in actuality it was Sept.
You have grit and it's to be admired!
Beach
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: 240
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Wed Oct 30, 2024 1:15 pm

Joe,

Wow, a Porsche and a plane! Sounds like you are having a blast. I am happy for you. It's good to hear that your ileostomy is not preventing you from having fun! Good luck with your ileostomy reversal surgery in December. I am sure it will be a success!

Take care and keep in touch,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
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; 1.4; 1.2; 1.0
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
4/24 left brain craniotomy (RC met)

utahgal7
Posts: 240
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Wed Oct 30, 2024 1:25 pm

beach,

It's so good to hear from you. I hope that you are doing well. Wow, it was a tough summer for all of us. Grit, perseverance and stamina are some of the essential attributes needed to fight this beast of a disease.

I think of you often.

Keep fighting and take care,

Paige
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
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; 1.4; 1.2; 1.0
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
4/24 left brain craniotomy (RC met)


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