Rectal cancer (Stage 3A) diagnosed late June 2017

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NHMike
Posts: 2542
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Fri Mar 19, 2021 12:42 pm

"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."

You will likely have had your first infusion by the time you read this so you'll know what happens. It's pretty chilly in NH right now so I'd assume that it is in NYC as well so you might feel some of the cold sensitivity.

- 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...

There are potential side-effects from the Oxaliplatin and Xeloda. My experience with the Xeloda and what I've observed of others in the forum is that most to all of the Xeloda (or 5FU) side-effects are temporary. But I have recall seeing some that do seem permanent. It can be a little hard to tell because it may be unclear as to wherther something was caused by the Xeloda/5FU or the Oxaliplatin. Those that do Neo-Adjuvant Chemo with just Xeloda/5FU have something to compare as they do it with and without Oxaliplatin but the does are lower for Neo-Adjuvant.

One thing that many report is chemobrain which is a bit of mental fogginess. I saw a paper this morning on the machanism for how this happens but I didn't read the paper. I'm not sure which of the chemo drugs causes it.

I think that most people have a bigger problem with the Oxalipatin. Some see the cold sensitivity and neuropathy go away after six months, a year, two years, etc. It's been three years for me and I still have the cold sensitivity and tingling but I really don't think about it unless it gets brought up. That is I've gotten used to it. I think that my symptoms are mild as I've ready reports from others where they can drop things in some cases. One of the problems with the toe issues that I had was walking down stairs at night without turning on the lights. I fell down two times though injuries were minimal. I couldn't sense the edge of the stairs with my toes. The solution was to turn the lights on when going down the stairs - I didn't do that before because I didn't want to wake others.

Here's a research study on Oxaliplatin and neuropathy showing the side-effects during chemotherapy going out 18 months from cessation of chemotherapy.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4606060/

An update on these data, at a median follow-up of 7 years, noted that patients who received oxaliplatin reported numbness and/or tingling in both hands and feet; however, foot symptoms were more prevalent.1 In addition, a recent study assessed neuropathy symptoms and quality of life 2 to 11 years after diagnosis in survivors of colorectal cancer, 162 of whom had received oxaliplatin. This study also utilized the EORTC QLQ-CIPN20 instrument and reported that those treated with oxaliplatin more often reported tingling, numbness, and pain in toes and/or feet as compared with those not treated with oxaliplatin; however, there was no statistically significant difference in these same symptoms in patients' hands when these patients were compared with patients who either did or did not receive oxaliplatin.2

- 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?

I have good days and bad days though the bad days often have triggers. But sometimes I am careless about avoiding the triggers. I take a bunch of supplements that I take that do help a lot and things are generally a lot better but that is due to managing things moreso than things getting biologically better. Part of my issue is scar tissue which not all patients have after the reversal. A small bowel obstruction is a very painful thing and it sent me to the ER the first time I had it. Your body ejects everything from your GI tract when it resolves. I have to remind myself not to eat large meals - rather, small amounts of food many times per day. The scar tissue showed up on my last scan and I plan to ask my surgeon about it to see whether or not it's worth trying to remove.

- 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?

The Lifetime & Annual Limits are prohibited under the ACA https://www.hhs.gov/healthcare/about-th ... index.html though I may have been worried about this at some point. My max out-of-pocket is $2,000 per year and that's what I've paid per year with a cumulative bill of about $650K after four years. My COBRA plan runs out in February 2022 so I will need to find something else before then. It is possible that the COVID relif act covers six months of COBRA payments which would be helpful. I contacted my COBRA administrator and the company will issue a statement on this.
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: 54
Joined: Fri Feb 26, 2021 10:36 am

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

Postby Sunnycd » Fri Mar 19, 2021 2:36 pm

Thank you, NHMike. Still being infused in the treatment room as I read this, and feel much better by your response. It’s sunny but chilly in NJ, but the days are supposed to get warmer, so I got a break at least on that front. :)
DX Feb. ‘21 CC IIB @ 51
Jan. ‘21 ER surgery, temp. colostomy
Sigmoid, adernocarcinoma
T4aN0MX, G2
0/24 lymph nodes
LVI: indefinite
PNI: not identified
Margins: clear
March ‘21 started 4 rounds of CAPOX
06/17/21 last day of CAPOX
06/25/21 CT scan clear
CEA: @ dx 4, post surgery 1.9, post chemo: 2.9
07/14/21 colostomy reversal

NHMike
Posts: 2542
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed May 19, 2021 8:50 pm

I stopped running for several weeks which was difficult and replaced it with spinning, stretching and the weight machines at the gym and bodyweight and barbells at home. I then started running 1/2 mile last week (that was my limit before injury) and have been running 1.5 miles/day this week without problems. It's likely that glutes strength was a problem as it turns out that my left glutes are noticeably weaker than the right side. It's also possible that there was a flexibility problem. It's hard to tell when you throw everything at a problem - as you don't know what fixed it.

So I'm generally working out two hours a day on average and the feeling is quite good in general though not right after working out. I do walk moderately to get in 10,000 steps per day but it is not an efficient way to get in steps but it's easier on the knees.

I was running a lot but skipping the core work. My core is a lot stronger again and it makes a difference in the GI system. Core muscles can slow things down or speed things up and that's sometimes handy.
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: 2542
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jun 09, 2021 5:51 am

I went to see the surgeon yesterday. My original appointment was scheduled for August 2020 but it was canceled by the hospital. I rescheduled for several months afterwards but there was a COVID outbreak at the hospital. I was going to try early 2021 but COVID numbers spiked over 700%. So I scheduled for June after getting vaccinated in April.

The hospital was very busy. They have more stringent screening procedures now than during the pandemic. Perhaps this is in response to the removal of restrictions and the much higher demand for medical services as people get the procedures that they've put off for the past year. I noticed that most people still wore masks outside which was odd to me but I'm coming from a low-density population area and this is the city. I only wore masks where I was required to - basically inside the hospital building.

My main question for the surgeon was about a surgery to fix the small bowel obstructions. I generally do a good job at maintaining discipline to avoid them but let my guard down from time to time; usually once a quarter. The things that will cause one are foods that don't digest well and that aren't thoroughly chewed or broken up or eating too much at one time. Eating lots of small meals works far better than one large meal per day. The thing that caused the problem last time was beef jerky. So I avoid beef in general. I think that a hamburger would be fine but larger pieces, unless chewed really well, could cause problems. I think it good to avoid beef anyways.

Her answer is that it could be adhesions (scar tissue) or narrowing of the passage from the small intestine to the large intestine caused by the staple or otherwise. The solution would be to remove a small portion of the intestine and sew the two pieces together. It would have been better to do this during the original surgery but the original surgery was already 5 1/2 hours so adding this during major surgery is probably considered a risk. She said that the narrowing is more likely than adhesions though it could be both. The surgery would require a three day stay and it would take a month to recover. The bowels have the issue of having to wake up again. I was expecting outpatient for removal of the adhesions.

So I have to decide on whether or not to have the surgery to fix this given the costs (risks, hospital stay, recovery).

The surgeon also asked me about being interviewed by an intern about my experience through surgery and in dealing with moderately severe LARs as they've had some complaints about process. I said that I'd be happy to do it as I have the record of things in this thread.
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

User avatar
Green Tea
Posts: 421
Joined: Mon Oct 24, 2016 10:48 am

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

Postby Green Tea » Wed Jun 09, 2021 7:50 am

NHMike wrote:...The surgeon also asked me about being interviewed by an intern about my experience through surgery and in dealing with moderately severe LARs as they've had some complaints about process. I said that I'd be happy to do it as I have the record of things in this thread..


And what about your book on LARS? Don't you have a LARS book draft around somewhere?

    NHMike wrote:... I'm going to start a book (or long article) on reversal issues. Just something to keep track of what I find and what I will be learning along with some of the things that I'm going through. I sometimes gather a lot of good information and a paper or book is a good way to keep track of things.

    NHMike wrote:... I do wish that there was a book on just the reversal stuff. I have starting materials for such a book but I haven't started yet as I have an accumulating pile of stuff to do at work...

NHMike
Posts: 2542
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jun 09, 2021 7:52 am

More like an outline. I forgot about 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

Gravelyguy
Posts: 363
Joined: Thu Jul 05, 2018 6:03 pm

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

Postby Gravelyguy » Wed Jun 09, 2021 10:33 pm

Hi Mike,

Glad you finally got in to see your surgeon. That is a tough call on whether or not to do the additional surgery. I haven’t had the obstructions like you have. It would be hard to have an additional surgery and go through all of that again.

I hope you are able to get that interview. I think that they are starting to wake up to the idea that they need to figure out LARS better as more of us are surviving that have rectal cancer.

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: 2542
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Thu Jun 10, 2021 5:46 am

Gravelyguy wrote:Hi Mike,

Glad you finally got in to see your surgeon. That is a tough call on whether or not to do the additional surgery. I haven’t had the obstructions like you have. It would be hard to have an additional surgery and go through all of that again.

I hope you are able to get that interview. I think that they are starting to wake up to the idea that they need to figure out LARS better as more of us are surviving that have rectal cancer.

Dave


I'm not sure if this is a research project in general or if they just want to improve their operations, process, procedure and education. The best approach would be to write the book as it would provide ideas on improving their process.

One of the complicating factors is health insurance. I am on COBRA until around February 2022 and have access to all of this incredible medical care. I need to figure out what to do after that as the health plans in my state are narrow networks and likely wouldn't cover my Boston hospitals. This may mean that I look for work but looking for work with an upcoming surgery is complicated.
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

Caat55
Posts: 685
Joined: Sat Dec 23, 2017 6:01 pm

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

Postby Caat55 » Wed Jun 23, 2021 1:20 am

Hi Mike,
It has been almost a year since I last posted. Can’t believe it’s been four years on this journey. You were just a little ahead of me at each step so I read your words as a guide.
Just checking in, wishing you well. Wondering what’s next?
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018
PET NED 12/18
Clear Colonoscopy 2/19

NHMike
Posts: 2542
Joined: Fri Jul 21, 2017 3:43 am

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

Postby NHMike » Wed Jun 23, 2021 6:21 am

Caat55 wrote:Hi Mike,
It has been almost a year since I last posted. Can’t believe it’s been four years on this journey. You were just a little ahead of me at each step so I read your words as a guide.
Just checking in, wishing you well. Wondering what’s next?
Susan


I've been learning some new skills and thinking about going back to work. Both cancer and the pandemic have made life challenging for us and certainly the pandemic for a large part of the population. It's still a day, week, month at a time trying to fix the little problems that we all have. We're probably a year away from making the survival stats.

How are you doing generally?
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


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