Rectal cancer (Stage 3A) diagnosed late June 2017

Please feel free to read, share your thoughts, your stories and connect with others!
Eleda
Posts: 328
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Eleda » Tue Oct 27, 2020 4:36 am

Hi Mike and Dave,
Is there any kombucha you would recommend, ( taste and strength wise) for clean out, ive reduced my sodium bicarb to about 3 times a week, but. I would prefer something less aggressive, and possibility of work overnight!!!!
While the bicarbe is great fie complete clean out, it can b rough to take in the mornings and sometimes dosent kick in until much later and that is a bit of a problem
Thanks Adele
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

NHMike
Posts: 2533
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Tue Oct 27, 2020 5:23 am

I have tried Kirkland which is a Ginger Lemon flavor and I believe that Sujo is the supplier. I also have a Sujo Blood Orange Ade (it's fizzy) that I like. It does not guarantee a cleanout the first day. That happened the first time I tried it. This second time, it was on the second day. But it was complete. The thing that definitely does a cleanout for me the same day is Dulcolax. I just don't know if it is safe to take on a regular basis.

I checked my supermarket on Sunday and they have two-liter bottles of Kombucha (don't recall the brand) so you can get it in quantity for much better pricing than the 16 ounce bottles at Whole Foods but I find that a bottle lasts for a while. I usually dilute the Kombucha 1 to 4 as the flavor is intense. They all have some form of sugar from what I can tell but the amount varies from brand to brand and flavor to flavor.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2533
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Nov 20, 2020 3:54 pm

I'm still taking the Kombucha and just bought a package of Garden of Life Probiotics for men over 50. They are marketed as 85 billion live cultures and a wide variety of cultures. Most have around 1 to 2 billion.

Of course I don't know if more is better. The daily does is three capsules so I'll start out with one tonight or tomorrow. My experience is to be careful trying these things as they can prompt a run to the bathroom. That's normally a good thing if there's some warning.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2533
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Nov 27, 2020 12:52 pm

The Garden of Life Probiotics for Men over 50 are working well. They've decreased pressure (from Small Bowel Obstructions) and have improved stool consistency and color. They claim 85 billion live cultures but you take three capsules so maybe 30 billion per capsule; still 10 to 20 times as much as other products. They also have vitamins and prebiotics. I am only taking one pill a day and may just leave it at that.

I stopped on the Kombucha as there's a problem with the stuff exploding out of the bottle when you open it. It's extremely fizzed and jostling the bottle a little before opening means a ton of foam all over the place. I have five glass bottles from my experiment with it and these are my new water bottles for chilling water. I also don't want a big collection of bottles, as great as they are for storing drinks.

I have not made the appointment with my surgeon and am late (was August but the hospital cancelled it). I am thinking of scheduling it for after the vaccines start getting distributed to healthcare workers. My next appointment with my oncologist is in February but they added a new suburban office and I will see him there.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Gravelyguy
Posts: 360
Joined: Thu Jul 05, 2018 6:03 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Gravelyguy » Fri Nov 27, 2020 5:32 pm

Glad you found a probiotic that helps, Mike. I ran out of mine and it took a few days to get more. It was amazing how stuffed up I felt.

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!

NHMike
Posts: 2533
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Mon Nov 30, 2020 10:21 am

Gravelyguy wrote:Glad you found a probiotic that helps, Mike. I ran out of mine and it took a few days to get more. It was amazing how stuffed up I felt.

Dave


I like being able to go to Whole Foods to pick up the bottle and not worry about it going bad due to shipping.

I've noticed that I've had no Small Bowel Obstructions since starting this stuff. I suspect that the probiotics are doing a better job of helping to digest food and improving moisture content. I think that dark stools are an indication of lower water content and they tend to be a lot harder than lighter colors. I do not see any downsides to taking these and the pill form is farm more convenient than taking the Kombucha. I enjoy the Kombucha drink but I was taking it inconsistently. I've been taking one Probiotic Capsule, the Nopalina and Slippery Elm daily.

You can get Probiotics at drug stores as well but they aren't refrigerated. They're all fairly expensive too as is the Kombucha. I could probably do without the sugar in the Kombucha as well. Typically about 12 grams of sugar per serving which overall isn't bad but I really don't need it.

I read a review of someone that has taken them for twenty years so they seem to work long-term too. The only concern I have is traveling - I think that I'd have to get a non-refrigerated brand for that.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2533
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Feb 05, 2021 10:54 am

CT and bloodwork. Everything fine but some degenerative stuff in the spinal column which I will ask the doc about next week.

On scans, some pathologists throw in stuff. I've found that they vary what they make comments on and this time he mentioned the spinal stuff which I will have to look into.

This pathologist also mentioned the scar tissue at the ileostomy site. I don't recall seeing that mentioned in previous scans.

Getting old I guess.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Cured
Posts: 573
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Cured » Sat Feb 06, 2021 1:01 pm

Mike, Here’s praying that the spinal indication is just scatter and not a real concern.

Some days I eat yogurt and skip the probiotic pill. My surgeon had recommended Align which is OTC. A pharmacist recommended Florajen3, which requires Refrirgeration and is also over the counter. I used it for a while. Recently I went with Masszymes by BioOptimizers, recommended by a blog/podcast. Our gut biome is important- too bad our Oncologists aren’t concerned with it. And measure it and advise on.

This week’s CT showed tumor growth, so I’ll have to go back on chemo.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3,2.3.4.8,8.4,9.1,10
12 rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumor gth =Folfiri

NHMike
Posts: 2533
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Sun Feb 07, 2021 9:40 pm

The spinal stuff is very common with tennis players. It may be do to weightlifting as well and I'll modify what I do to decrease stress.

I'm taking Garden of Life Raw Probiotics Men 50 & Wiser - Acidophilus and Bifidobacteria Probiotic-Created Vitamins, Minerals, Enzymes, and Prebiotics, Gluten Free, 90 Vegetarian Capsules for almost three months and these have worked really well for me. These are sold at Amazon and the reviews are either 1 or 5. They are supposed to be shipped cold and it looks like some of their vendors don't do a good job of that.

I take a small cooler with ice packs in it and go to Whole Foods. They have the probiotics that require refrigeration in a small refrigerator and I take out a bottle and buy it and put it in my cooler and take it home and then leave it in the refrigerator at home.

I'm also using Slippery Elm (coats the intestines) and Nopalina (fiber). The combination keeps things fairly smooth.

Thanks for commenting.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Gravelyguy
Posts: 360
Joined: Thu Jul 05, 2018 6:03 pm

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Gravelyguy » Mon Feb 08, 2021 11:07 pm

Glad you got good reports on your scans and bloodwork Mike!

Radiologists do like to comment on different things. Once they mentioned a slight hernia by one of my incisions and o comments about it in the 3 scans since.

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!

NHMike
Posts: 2533
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Tue Feb 09, 2021 10:07 am

Doctor said no more scans. Colonoscopies every three years. So just bloodwork. It will be five years from diagnosis in 2022. We actually didn't talk much about my health in the visit after it was clear that things are going fairly well.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Jannine
Posts: 196
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Jannine » Tue Feb 09, 2021 7:04 pm

Great news, Mike!! I know I haven't been very active around here but I do still come back to check on peeps. :) I'm relieved to see that you've got a process that's working for you. I got Visbiome through the mail when I was trying to get rid of my third c diff flareup; it's another probiotic that requires refrigeration. They ship it in refrigeration and include a temperature device that will tell you if it got too warm inside. The c diff went away with the Visbiome plus another course of antibiotics, so I like to think it helped, but there's no way to be sure. I'll definitely take it the next time I go in for a colonoscopy.

I get comments about degenerative stuff going on in my vertebrae every scan, but my oncologist has never mentioned it. I have my 6-month bloodwork next week; my scans are annual now, fortunately.

I just got prescribed Gabapentin to see if it might help with my lingering neuropathy. Hoping it works for me and that I don't see any of the more obnoxious side effects.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear

NHMike
Posts: 2533
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Tue Feb 09, 2021 8:37 pm

Jannine wrote:Great news, Mike!! I know I haven't been very active around here but I do still come back to check on peeps. :) I'm relieved to see that you've got a process that's working for you. I got Visbiome through the mail when I was trying to get rid of my third c diff flareup; it's another probiotic that requires refrigeration. They ship it in refrigeration and include a temperature device that will tell you if it got too warm inside. The c diff went away with the Visbiome plus another course of antibiotics, so I like to think it helped, but there's no way to be sure. I'll definitely take it the next time I go in for a colonoscopy.

I get comments about degenerative stuff going on in my vertebrae every scan, but my oncologist has never mentioned it. I have my 6-month bloodwork next week; my scans are annual now, fortunately.

I just got prescribed Gabapentin to see if it might help with my lingering neuropathy. Hoping it works for me and that I don't see any of the more obnoxious side effects.


There are clearly places that get this right. My chemo drugs were shipped in cooling materials ($5,000 drugs had better have really good cooling) so I've seen really good cooling. But on Amazon, they have a bunch of different suppliers and they don't all do a great job.

I can understand why probiotics are a really good thing to take with antibiotics.

My oncologist told me that everyone over 50 gets that stuff. He asked me about the neuropathy and I said it's there but I generally don't think about it. I guess I've gotten used to it. He asked if the LARS was any better and I just said that I'm managing it better. My guess is that these are questions that go into the cancer databases on the side-effects of treatment and the data gets used for research. But I kind of got the feeling that this was kind of the end of intensive surveillance and that life is edging to cancer-free. At least as far as the medical community is concerned.

We talked a bit about my work status - in that I wasn't working - he asked me if I was retired and I just made a non-committal noise. I'm really not sure what I am. My income is far higher than what it was when I was working a regular job but it's still feels odd not having a regular job. One thing that I need to work on is finding a healthcare plan for when COBRA ends in early 2022. The plans in my state are HMOs or narrow networks. I'd like one of the Massachusetts plans but am not sure if I could get on one without moving there. I need to look into private plans as well - directly with an insurance company if they do that.

I should visit here more often - adjusting to the new life has been rather stressful.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

NHMike
Posts: 2533
Joined: Fri Jul 21, 2017 3:43 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby NHMike » Fri Mar 19, 2021 8:42 am

I returned to the gym about three weeks ago and started doing a lot of abdominal work and it's resulted in a considerable improvement with regard to clustering. I was away from the gym for about a year and there were two particular exercises I did that contributed to abdominal muscle strength: weighted crunches and rotary torso. The idea of a weighted crunch is doing situps with someone sitting on your chest.

Eliminating or reducing some foods has helped. I've long known that popcorn causes a lot of problems for me but there was a new brand at the supermarket - three simple ingredients. So I tried it out and had problems for a week. So no more popcorn. And I'm doing that more as I don't like downtime.

I was chatting about cramps on my tennis forum and found this article: Electrolyte disorders with platinum-based chemotherapy: mechanisms, manifestations and management at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5676816/

This article explains why my oncologist added IV Mg during chemo after I complained about cramps. I had cramps after chemo as well, often exercise-related, and looked at Sodium, Potassium, Magnesium and Calcium supplements and picked Magnesium for cost, availability and fewer negative effects. But it turns out that my body probably needs the supplements after Oxaliplatin as chemo can cause a deficiency of magnesium for up to six years. Magneisum helps to regulate the other electrolytes as well.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

Sunnycd
Posts: 48
Joined: Fri Feb 26, 2021 10:36 am

Re: Rectal cancer (Stage 3A) diagnosed late June 2017

Postby Sunnycd » Fri Mar 19, 2021 9:43 am

I’m glad you are doing well! I am starting my chemo today. In fact, I took 3 xeloda pills at 8AM, going to MSK at noon for my oxali. infusion, and then taking another 3 xeloda tonight for the next 14 days, one week off, start again, for 3 months.

I have been reading your posts, but there are now 113 pages to go through. So, my question, if you don’t mind me asking things that you might have covered before:
- the side effects from chemo seem to last far longer than the duration of the treatment ...I thought the side effect was during the treatment, maybe for a few more months, but could it be permanent? How likely is this? My docs said, “during” and “very rare to be beyond”. I feel they’ve been sugarcoating...
- colostomy reversal; I heard horror stories of one having to go to the bathroom all the time and unexpectedly. You are now a few years after the reversal. How are you doing on that front? I thought popcorn and a few other things were a no go while you had the bag, but are they still a no go after you take it out?
- insurance. I understand I need to do more research on my insurance, which I know very little of because I’ve always been healthy and never bothered to understand. Thus far, they have covered everything, but I had to pay about $5k for my hospital stay. I read the policy and i thought your max out of pocket is your max out of pocket and the rest is covered? From your post, it seems that at some point, your treatment may not be covered because you “maxed out”? How is that possible?

I may have more questions, but the insurance thing is making me anxious...
DX 02/21 CC IIB @ 51
01/21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
3/21 started 4 rounds of CAPOX


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 3 guests