STAGE IV RC GUYS AND GALS

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utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

STAGE IV RC GUYS AND GALS

Postby utahgal7 » Tue Jan 10, 2023 4:07 pm

Hi,

I haven't posted in awhile. It has taken some time for me to mentally process my current situation. I had a lung nodule biopsy (right lower lobe) performed this past November. Biopsy sample tested positive for rectal cancer metastasis. Naturally, I was bummed out by the results although I was not surprised. I had VATS wedge resection surgery after New Years. Prior to surgery, I didn't think VATS would be that painful since it is considered a minimally invasive surgery. Yikes, was I wrong!!!! I don't want to scare anyone on here but surgery was painful. The chest tube was REALLY PAINFUL!!!. I was released from the hospital the day after surgery. Since I have been home, pain hasn't been too bad. It has been mostly neuropathic in nature (burning pain). I have been taking Lyrica twice daily. My oncologist wants me to take XELODA for a total of 4 cycles (12 weeks).

Although I know this isn't related to my VATS surgery, my LARS has gotten really bad. It has gotten so bad that I cannot leave my house because I have to be close to a toilet. It is super depressing.

I know that I should be grateful that I am alive. There ARE SO MANY people on this forum that have WORSE situations. I feel super guilty for writing this...but this fucking disease (excuse the language) is tearing me down physically and mentally. Riki's passing hit me hard along with two other individuals (they were not part of this forum) that passed after New Years.

Thanks for letting me vent.

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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

roadrunner
Posts: 347
Joined: Sun Jan 12, 2020 8:46 pm

Re: STAGE IV RC GUYS AND GALS

Postby roadrunner » Tue Jan 10, 2023 9:14 pm

Utahgal7:

I’m all for the venting. It’s good after the tough times (and while they’re lingering). On the VATS, it sounds like you’ve turned the corner, with much better days to come. It’s real surgery, with real risks and a real recovery, so I’d go easy on myself, there. Also definitely a YMMV situation: I had mine a little over a year ago, and mine was pretty tolerable. I did have some excitement in the hospital, nearly passed out when they got me up (there’s a post somewhere on that). Still, they let me go same day, and I was super happy to go. I thought I was staying, so I still have fond memories of that walk to the car across the cold, dark parking garage floor. I will admit that when they pulled that tube out—Wow! So maybe yours was in a tougher spot, or the met itself was more challenging (mine was sub-pleural).

As far as the future goes, you may well be in a great place. There are lots of folks on here with good, and more importantly, long : ) stories of life after VATS for CRC mets. I think you’ll find that the recovery will speed up now that you’re home. The only reminder I have of it now is the occasional tweak when I sneeze of cough. Just ran three miles. Sorry about the LARS, others will have more to offer there, but I wonder whether the antibiotics or other factors related to the surgery may be involved, in which case it will likely return to the baseline soon. Good luck with the rest of the recovery.
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.)

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Wed Jan 11, 2023 8:14 am

Thanks, roadrunner for the kind words! I am glad that your experience with VATS was relatively uncomplicated. It sounds like you only feel a twinge when you sneeze or cough. That's good. It's great that you are able to run without any breathing issues.

I hope you, I and everyone else on this forum have clear scans going forward. Best wishes for a "NED" 2023!!!!


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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

Claudine
Posts: 761
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: STAGE IV RC GUYS AND GALS

Postby Claudine » Wed Jan 11, 2023 3:24 pm

So sorry that you're going through all this - do NOT apologize for posting! Venting is a great use of the forum. LARS is so nasty - I'm watching my husband going through it, some days are ok but others are just plain awful, for what seems to be no rhyme or reason... It's a bummer the VATS was painful, but imho any time cancer can be physically excised, it's a win. Hopefully you can return to an active lifestyle not tied to the bathroom in the very near future!
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

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Wed Jan 11, 2023 5:46 pm

Thank you, Claudine for the kind words. Yes, I hope to get outside really soon. So sorry that your husband is dealing with LARS, it's not fun.

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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

zephyr
Posts: 331
Joined: Thu Aug 18, 2016 7:31 am

Re: STAGE IV RC GUYS AND GALS

Postby zephyr » Sat Jan 14, 2023 4:32 pm

I don't know if this will help you but every now and then, for reasons unknown, I'll get a flare that is a lot like how I remember LARS. Without intervention, a flare can last for several days. Recently I've started using Banatrol Plus. It's a natural product used in oncology centers for chemo diarrhea, among other things, and it does not over-correct and cause the ping-pong diarrhea-constipation. There are two flavors, banana and banana pineapple. Some people, myself included, don't do well with pineapple during these flares so I stick to the banana. It's really improved my quality of life. You will likely need more than one dose, if my experience is any indication. Hope this helps, You can find it on Amazon. Here's some general info:

https://www.medtrition.com/product/banatrol-plus/
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS, inop lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Dec-2020 Progression
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Sat Jan 14, 2023 5:20 pm

zephyr:

Thank you for this information. It looks like the product has received very positive reviews on Amazon and it is definitely a product that I would consider trying. Also, I was thinking of trying VSL3 probiotic. I have been told that it is helpful for LARS.

Thanks again,

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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

zephyr
Posts: 331
Joined: Thu Aug 18, 2016 7:31 am

Re: STAGE IV RC GUYS AND GALS

Postby zephyr » Sat Jan 14, 2023 8:22 pm

Hi Paige,

I used the VLS3 for years, on the advice of my PCP, but there was some lawsuit and then it was difficult to find so I switched to Visbiome because that's what the pharmacist told me was the replacement product (also behind the counter and refrigerated). That being said, my naturopathic doc told me that it's a good idea to switch up the probiotics from time to time so you get some variety. I can't speak to how probiotics and LARS play together; that's news to me.

File this next part under: you get what you pay for and this is free. My acupuncturist recently mentioned having read or heard about Japanese studies that showed probiotics could inhibit colon cancer cells. I never could find the studies he referenced but I did find a 2020 paper in the Journal of Gastrointestinal Oncology along those lines. It was a study on mice so ... who knows. But if you're looking for a good probiotic anyway, maybe consider finding one with the specific strains mentioned in the studies? You'll need B. longum, B. bifidum, L. acidophilus, and L. plantarum. I'm using a combination of different probiotics. My PCP told me it was ok to take more than one probiotic at a time so I've been using the Visbiome and Nature's Way Pearls Max Potency. I'm still figuring this out and playing with other combinations. A friend and fellow CRC Stage IV patient uses DrFormula Nexabiotic (check Amazon) and it looks like all 4 strains might be in that one. Here's the study:

https://jgo.amegroups.com/article/view/47581/html

Again, mice not humans ... and there may be more qualifying factors that I didn't understand or didn't note. Just a thought. Hope it helps.
Nov-2009 Early stage CRC, routine colonoscopy
2010-2014 F/U colonoscopies, all clear
Jun-2016 CRC during F/U colonoscopy, surgery, Stage 4, KRAS, MSS, inop lung mets
Aug-2016-May-2018 Folfox, 5FU & Avastin, 5FU, Folfiri & Cyramza
Aug/Sep-2018 YAG laser surgeries (Germany), 11 nodules removed
Nov-2018 clean CT scan
Mar-2019 New lung nodules
Apr-2019 Dec-2020 Xeloda/Avastin, SBRT, cont. Xeloda/Avastin
Dec-2020 Progression
Mar-2021 Forfiri/Avastin
Mar-2022 Ablation & Thoracotomy

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Sun Jan 15, 2023 7:41 am

Hi zephyr:

Thank you for sharing your experience with Visbiome (VSL3). Yes, I agree it is an excellent idea to switch probiotics from time to time. Although I have been unable to find any specific medical journal articles highlighting effectiveness of Visbiome(VSL3) in colorectal cancer patients, I am basing my willingness to try Visbiome on anecdotal information that I heard from another rectal cancer patient. This person had improvement in LARS symptoms after using Visbiome. Again, this is anecdotal information at best. As you know, different products have different effects in individuals. However at this point, I am willing to try ANYTHING. Lomotil and Metamucil have been somewhat helpful.

My feelings about probiotics are divided. I have a friend who is a doctor (not an oncologist) that thinks probiotics may be unnecessary and that a diverse plant food diet is best.

Perhaps, all colorectal cancer patients should have a stool study to identify bacteria counts, deficiencies, and then the patient could take a targeted strain of probiotics.

Thank you also for sharing the medical journal article. It is interesting information indeed and something to think about.

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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: STAGE IV RC GUYS AND GALS

Postby Gravelyguy » Wed Jan 18, 2023 12:17 pm

Hi Paige,

So sorry for the lung garbage but hopefully it was caught early and you can carry on. I too had a LARS flair up that went on for months. My oncologist suggested a scoop of metamucil a day. It has done wonders for me. Since diagnosis I have been taking a good probiotic and I think it has helped. I use Plexus brand, mainly because my wife sells it!

Hope the pain is getting better.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Thu Jan 19, 2023 8:13 am

Hi Dave,

Thank you for the kind words. Yes, I am glad the lung nodule was taken out. It is good to hear that Metamucil and probiotics are working for you.

Happy New Year!

Take care,

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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Thu Jan 19, 2023 9:05 am

I met with oncologist yesterday and we decided upon XELODA for 4 cycles. Bloodwork looked ok....CEA is 1.8 I was hoping for CEA to come down after VATS wedge resection. It's only been 2 weeks since surgery. I hope my CEA will decline in the upcoming weeks. In the past, CEA hovered around 1 (after rectal resection) so if it doesn't go down, I know that's bad, bad, bad.

Scans in February.
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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

Claudine
Posts: 761
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: STAGE IV RC GUYS AND GALS

Postby Claudine » Thu Jan 19, 2023 6:27 pm

Mmm I don't know about that; from all I've read, CEA tends to fluctuate a bit, and yours has always stayed below the "red flag" value (<3). Are you sure it's even meaningful for you? I would try to focus on the positive (the tumor is out!) and not worry too much about what seem to be small fluctuations (I know, easier said than done, but when I look at my husband's CEA numbers, yours look really good!).
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

utahgal7
Posts: 115
Joined: Fri Sep 11, 2020 12:04 pm

Re: STAGE IV RC GUYS AND GALS

Postby utahgal7 » Fri Jan 20, 2023 8:28 am

Thank you, Claudine! I will try to think of the positive!

Have a fun weekend!

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
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy
04/20 ypT3N1bM0; MSS;
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
07/22 - 08/22 CT scan; (1) lung nodule (right lower lobe 9mm X 7mm) numerous micro nodules left lung
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection

stu
Posts: 1603
Joined: Sat Aug 17, 2013 5:46 pm

Re: STAGE IV RC GUYS AND GALS

Postby stu » Fri Jan 20, 2023 7:15 pm

Please don’t apologise. Some parts of treating cancer as a chronic condition requires some deep digging to endure from what I have seen my mum endure . I do hope some of it eases for you soon .
I really do !
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 .


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