Stage IIA: Chemo or not?

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Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: Stage IIA: Chemo or not?

Postby Sunnycd » Sun Feb 28, 2021 2:47 am

menreeq wrote:Hi --
I am also Stage IIA with no high risk features. I was given the same options. I asked three oncologists. My Onc recommended no chemo. Got a second opinion with a highly regarded Onc at academic center -- he said he previously would have recommended none but would be okay with Xeloda. After data on Stage III and 3 months chemo, he recommended 3 months Xeloda for me, understanding that this is a different situation. The reasoning is that the side effect profile for Xeloda for 3 months is so benign that it might be worth doing it for the 3-4% cure benefit. I curbsided a third Onc who said it was up to me -- was I the kind of person who would regret doing the chemo if I got bad side effects or the kind that would regret not doing it if I had a recurrence. I am the latter so I opted for Xeloda. My Onc agreed and said to do it for 6 months unless I can't tolerate it.

I'm on cycle 7 of 8. I have hand foot syndrome, moderate in degree, and I am working. I have young kids. I wanna do everything I can to achieve cure. Even single digits are worth it to me at this point.

You can see my old posts where I ask about side effects and the lovely people here have chimed in. It helped me make decisions about work schedule and managing side effects.

Good luck!


I was just recently diagnosed with stage 2B colon cancer at 51 yo. I had a surgery 6 weeks ago, and have a colostomy. My surgeon stated that all tumors were taken, and it didn’t reach the lymph nodes. Met with my oncologist briefly over zoom and she wants me on chemo (preventative). I have no details of what it is, just know it will be a combination on injections (?) and oral for a period of 6-8 months. Didn’t get details as to side effects or what not. I did get a call from her office to participate in a study for Symbalta, as it is trying to get an approval to be used to help with neuropathy in chemo patients. I wanted to get a second opinion, but have no idea how that’s even possible or how to go about getting one. Do you have to go to an oncologist in your insurance, ask your insurance if they will cover, ask for all your medical files from you oncologist’s office to be sent to the second opinion doc (wouldn’t that offend my current oncologist, who most likely will be the one I am retaining?).

I was supposed to have my colostomy reversed “6 weeks” after the surgery. If I have the chemo, it will probably be more like a year or so after surgery. I know that the sooner I have it reversed, the less side effects from it I will have (incontinence, etc). Besides, I CANNOT bear having this bag, I have painful skin issues, and bleeding and sometimes, I’d rather spend hours in the bathroom to avoid the inevitable “pancaking”. I want to forgo chemo or postpone for a year so that I can have the reversal done. Any thoughts would be greatly appreciated.
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; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Stage IIA: Chemo or not?

Postby NHMike » Sun Feb 28, 2021 5:03 pm

On the colostomy - I had a lot of problems initially and was supposed to meet with a WOC (wound, ostomy, continence) nurse about two weeks after discharge but the appointment got rescheduled for a month later. I had leaking and burning at the ileostomy site. The WOC nurse gave me a different pouching solution which worked a lot better. I think that someone on this board recommended a spray form of the cleaner/barrier which helped a lot. Insurance only covers the wipes but they were a major pain to use - so I bought the spray myself. At any rate, dealing with the ileostomy was a lot better after seeing the WOC nurse and with tips from this forum.

On adjuvant chemo: I had infusions of Oxaliplatin in an infusion center. These were usually a few hours and you sit in a big chair and they put this stuff in you via a chest port. This was done every three weeks. I also had oral 5FU which is called Xeloda. My approach was that I wanted to get the adjuvant chemo done as soon as possible to minimize risks and to be done with all of the treatment as soon as possible.

One thing about cancer care is that you can't always get what you want in terms of time and sequence as the doctors have to follow protocols.
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: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Stage IIB: Chemo or not?

Postby Green Tea » Mon Mar 01, 2021 12:59 am

Sunnycd wrote:...I want to forgo chemo or postpone for a year so that I can have the reversal done... Any thoughts would be greatly appreciated.

Welcome to the Forum. To reply to your question above we would need more information about your cancer from your pathology reports to determine the risk level of your particular type of cancer. This is needed in order to determine whether your Stage 2B is closer to Stage 2A than to Stage 2C. The kind of information needed is: Type of cancer (e.g., adenocarcinoma, etc.); grade of cancer, location of tumor (which part of colon:left side/right side?); TNM staging code (T4aN0M0 ?); MSI status or dMMR status; number of lymph nodes sampled during surgery; lymphovascular invasion (LVI) present/absent; perineural invasion (PNI) present/absent; surgical margins:clear vs. involved. Also, it would help to know if you are diabetic or obese, since these also affect the risk level.

For your other questions:

... Met with my oncologist briefly over zoom and she wants me on chemo (preventative). I have no details of what it is, just know it will be a combination on injections (?) and oral for a period of 6-8 months. Didn’t get details as to side effects or what not.

.
I did get a call from her office to participate in a study for Cymbalta, as it is trying to get an approval to be used to help with neuropathy in chemo patients.


    Here is one of the already-completed Cymbalta(duloxetine) clinical trials. If the study the oncologist is talking about is a newer one, could she give you the NCT number for that study so that you can look at the requirements for participation?


I wanted to get a second opinion, but have no idea how that’s even possible or how to go about getting one. Do you have to go to an oncologist in your insurance, ask your insurance if they will cover, ask for all your medical files from you oncologist’s office to be sent to the second opinion doc (wouldn’t that offend my current oncologist, who most likely will be the one I am retaining?)

Last edited by Green Tea on Fri Mar 05, 2021 10:45 pm, edited 1 time in total.

Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: Stage IIA: Chemo or not?

Postby Sunnycd » Mon Mar 01, 2021 10:09 am

Green Tea, thank you so much for your response. In fact, it only showed me how little I know about my diagnosis and how much I have to research and educate myself. I don’t know the answer to any of the questions you posed. Well, except that I am not obese (5’5”, 115 lbs), active and fit, healthy except for Lupus, never had stomach or constipation issues.

Thank you again!
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; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: Stage IIA: Chemo or not?

Postby Sunnycd » Tue Mar 02, 2021 10:10 pm

I had my first face to face meeting with my oncologist today and we went over the plan in more detail. I feel that things are moving so fast and I can’t process the information. After I had my surgery, my surgeon made an appointment to see her about 4 weeks later, and asked me if I had an onc. I asked her to reco one, and on my follow up appointment, I received the name of my oncologist (same office) and an appointment was scheduled 10 days later. In hindsight, I should have researched during those 4 weeks and found my own oncologist and seen one within that time frame, but I was in a haze, denial, inertia, and now I am kicking myself for it. Anyway, I had a zoom call with my oncologist on Thursday, where she briefly went over the 6 month combo of folfox/xelora. Before I had time to process, I already had the pharmacy arranging delivery of xelora, back to back test line up for this week, etc.

Over the weekend, I did some research, and found out that Sloan Kettering in NJ is covered by my insurance, and they are located 10 minutes from my house vs. 25 minutes in my current hospital. My family wants me to get a second opinion, so today’s in person meeting with my oncologist was awkward to say the least. She explained that it is time sensitive, it’s been 6 weeks post surgery and nearly 8 weeks after the colon perforation, chemo is most effective within 8 weeks, etc. (I have stage 2B colon cancer, have a temporary colostomy, surgery took the tumors, clean lymph nodes, chemo preventative, I’m 51 years old, otherwise fit and healthy), and while she understood I wanted a second opinion, she felt I didn’t have the luxury of time. I requested my medical records sent to MSK (that in itself is nightmarish; the patient can’t ask. One hospital says the other has to initiate the request, and I’m in between making the calls). MSK said I will get an appt within 7-9 days from receipt of records.

So, here is my dilemma. The chemo plan by the current oncologist makes sense (though I feel she really only bothered to explain in detail after I said I was going to get a second opinion), and all the pieces are in place to start. Do I go for a second opinion and waste time for what I think will be the same plan? More than that, we are inclined to get the second opinion and depending on how comfortable I feel with the doctor, make the switch to MSK, given their reputation. Also, with the idea that we would upgrade our health insurance next year to a plan that would cover MSK in NYC, so that I could have the best cancer plan going forward.
I’m still planning to go to the CAT scans and tests she lined up for the week, I imagine those can be shared with MSK should I make the move? But with everything in place to go at the current oncologist, should I put a stop and sort of start over at MSK and miss the 8 weeks window post surgery?

I would love to hear everyone’s perspectives, as I am totally lost. Mind you, I’m the type that never wants to offend. I will eat a burned steak and undercooked chicken in a restaurant rather than complain to the waiter. It turns my stomach to think about changing doctors and make them waste their time...
Last edited by Sunnycd on Wed Mar 03, 2021 7:42 am, edited 1 time in total.
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; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Stage IIA: Chemo or not?

Postby NHMike » Tue Mar 02, 2021 11:20 pm

I was planning on using local medical resources for chemo and radiation but many coworkers and friends (on this board too) recommended getting a second opinion. So I worked on getting second opinions scheduled in Boston, about an hour away for me. It was quite difficult even getting to talk to someone on the phone. The process of getting second opinions delayed things by four weeks and the Radiation Oncologist and Oncologist agreed with my local doctors on the course of treatment. I picked my surgeon from one of the second opinion visits in Boston.

So second opinions may slow treatment down depending on how quickly you can get your medical records over and schedule consults.

I did not want to go to Boston for chemo and radiation so I used local services for those. Some might want all of the services done at a top cancer center but that can entail a lot of travel and expense.
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: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Stage IIA: Chemo or not?

Postby Green Tea » Wed Mar 03, 2021 7:33 am

Sunnycd wrote:...She briefly went over the 6 month combo of folfox/xelora. Before I had time to process, I already had the pharmacy arranging delivery of xelora, back to back test line up for this week, etc.

Please clarify what you mean by "combo of folfox/xeloda". As far as I know these two regimens are never combined since that would result in an overdose of 5FU. Also, please indicate the number of pills your prescription requires in the morning, and the number in the evening. This dose needs to be accurate.
.
nearly 8 weeks after the colon perforation
,
Please elaborate on your colon perforation. What caused the perforation? Which part of the colon was this in? Was there any leakage into the abdominal cavity? This is important.
.
I’m still planning to go to the CAT scans and tests she lined up for the week
,
Please be sure to get a current CEA test. This could be very important for surveillance purposes.
.
...I would love to hear everyone’s perspectives, as I am totally lost...


Please try to post more replies. You are still on probation as a "Newly Registered User" and you need more posts in order to be promoted to "Regular User" status where you can post messages immediately without delay.

Is your oncologist still trying to enroll you in the Cymbalta study?

Do you have the pathology report from your surgery? If not, you need to request it from your surgeon so that you have access to the various risk-factor data items in the report.

User avatar
Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Stage IIA: Chemo or not?

Postby Green Tea » Wed Mar 03, 2021 12:13 pm

Sunnycd wrote:.... I feel that things are moving so fast and I can’t process the information...

Yes, this happens to quite a lot of people around here at the beginning of the journey, for example...

    In August 2017, NHMike wrote:...I just started chemo/radiation this week. It's tough, especially at first as there's a steep learning curve on figuring out what you have, availing yourself of services (local vs specialists), traveling to get second opinions, picking treatment centers and options and keeping up with the latest in clinical trials and drug therapies... It will feel overwhelming but there are lots of people here to answer questions and you can go through old threads to read about the stories of people that have been through this.


Sunnycd
Posts: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: Stage IIA: Chemo or not?

Postby Sunnycd » Wed Mar 03, 2021 10:04 pm

Green Tea wrote:
Sunnycd wrote:...She briefly went over the 6 month combo of folfox/xelora. Before I had time to process, I already had the pharmacy arranging delivery of xelora, back to back test line up for this week, etc.

Please clarify what you mean by "combo of folfox/xeloda". As far as I know these two regimens are never combined since that would result in an overdose of 5FU. Also, please indicate the number of pills your prescription requires in the morning, and the number in the evening. This dose needs to be accurate.
.
nearly 8 weeks after the colon perforation
,
Please elaborate on your colon perforation. What caused the perforation? Which part of the colon was this in? Was there any leakage into the abdominal cavity? This is important.
.
I’m still planning to go to the CAT scans and tests she lined up for the week
,
Please be sure to get a current CEA test. This could be very important for surveillance purposes.
.
...I would love to hear everyone’s perspectives, as I am totally lost...


Please try to post more replies. You are still on probation as a "Newly Registered User" and you need more posts in order to be promoted to "Regular User" status where you can post messages immediately without delay.

Is your oncologist still trying to enroll you in the Cymbalta study?

Do you have the pathology report from your surgery? If not, you need to request it from your surgeon so that you have access to the various risk-factor data items in the report.


I mispoke. My treatment is oxaplatin infusion every 3 weeks, with 1 xelora pill in the AM and 1 in the PM for 14 days in between. This will go for 6 months.

The perforation in the bowel was caused by, according to the surgeon’s notes “complete large bowel obstruction”. The procedures performed were 1. Exploratory laparotomy, 2. Sigmoid resection with end colostomy 3. Appendectomy 4. En block small bowel resection 5. Splenic flexure takedown 6. Right salpingetomy 7.omentectomy. I don’t know if there was leakage into abdominal area as it didn’t say in the report.

My CEA tests is <1.7. Based on your feedback, I will monitor this number closely.

The final diagnosis from pathology states
- tumor budding:0
-tumor deposits:not identified
-regional lymph nodes
-number of lymp hides involved:0
-number of lymph nodes examined:29
-pathology stage class:pT4aN0Mx

Note: immunohistochemical expression of DNA mismatch repair proteins MLH1, MSH2, MSH6 PMS2 is retained. This indicates low likelihood of tumor micro satellite instability (MSI) or Lynch syndrome.

Yes, they are still trying to enroll me in Cymbalta. After I read more about it online, I am not opposed to participating in the study, but it is very weird how they seem to be so eager to make me sign the consent form (overheard in the hall “so, did she sign it?”).

Today I received a whole bunch of letters from my insurance about the drugs that were ordered for my chemo and their approval. Now, I’m even more in a quandary. If the orders went through and the pharmacy is calling me to arrange delivery (have not returned their calls), what now if I decide to see the other oncologist and do the treatment there. These orders probably can’t be cancelled and I will be in the hook? Seems it’s too late and I am stuck with this oncologist (mind you, I think she’s competent, but my 2 brief interactions with her were not great). Oh, man...
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; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Stage IIA: Chemo or not?

Postby NHMike » Thu Mar 04, 2021 11:50 am

Sunnycd wrote:
I mispoke. My treatment is oxaplatin infusion every 3 weeks, with 1 xelora pill in the AM and 1 in the PM for 14 days in between. This will go for 6 months.

The perforation in the bowel was caused by, according to the surgeon’s notes “complete large bowel obstruction”. The procedures performed were 1. Exploratory laparotomy, 2. Sigmoid resection with end colostomy 3. Appendectomy 4. En block small bowel resection 5. Splenic flexure takedown 6. Right salpingetomy 7.omentectomy. I don’t know if there was leakage into abdominal area as it didn’t say in the report.

My CEA tests is <1.7. Based on your feedback, I will monitor this number closely.

The final diagnosis from pathology states
- tumor budding:0
-tumor deposits:not identified
-regional lymph nodes
-number of lymp hides involved:0
-number of lymph nodes examined:29
-pathology stage class:pT4aN0Mx

Note: immunohistochemical expression of DNA mismatch repair proteins MLH1, MSH2, MSH6 PMS2 is retained. This indicates low likelihood of tumor micro satellite instability (MSI) or Lynch syndrome.

Yes, they are still trying to enroll me in Cymbalta. After I read more about it online, I am not opposed to participating in the study, but it is very weird how they seem to be so eager to make me sign the consent form (overheard in the hall “so, did she sign it?”).

Today I received a whole bunch of letters from my insurance about the drugs that were ordered for my chemo and their approval. Now, I’m even more in a quandary. If the orders went through and the pharmacy is calling me to arrange delivery (have not returned their calls), what now if I decide to see the other oncologist and do the treatment there. These orders probably can’t be cancelled and I will be in the hook? Seems it’s too late and I am stuck with this oncologist (mind you, I think she’s competent, but my 2 brief interactions with her were not great). Oh, man...


Your Adjuvant Chemo routine is the same one that I had (and many others here as well).

You've been put through the ringer - that's a lot of surgery.

I was on a clinical trial during one of my surgeries and they were eager as well. There was a ton of testing (EKGs and blood draws) before, during and after the surgery. I imagine that they won't do that on your trial though as they can get the bloodwork done before your infusions.

My insurer uses a mail-order pharmacy for chemo drugs and they were a real pain to deal with. I typically had to spend 2-5 hours on the phone with them for every order I placed and they always wanted to ship the drugs at the last minute. The problems with this are if you are doing Chemo around the holidays where there are shipping delays due to volume or due to the weather. So I made sure that the doctor's office placed the prescription and then bugged the pharmacy to keep the process moving. Your six months will include the summer and they ship the drugs in a styrofoam container with freezer packs. The drugs typically cost one to four thousand per shipment so they want to make sure that they arrive without spoilage.

Protocols for treatment are standard so the treatment would likely be the same unless there was a gross error by your local oncologist. I would guess that you could transition mid-treatment but I haven't done this. I switched to Dana Farber after my adjuvant chemo and there were no problems with the transition. My mother lives in the area of Dana Farber and it's only an hour away so not too inconvenient.

If you haven't done so already, I would start reading up on the side-effects of Oxaliplatin as they are usually more severe than Xeloda and some can be permanent. There are threads here about side-effects and about how people deal with the side-effects.
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: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: Stage IIA: Chemo or not?

Postby Sunnycd » Thu Mar 04, 2021 12:20 pm

NHMike, I see you had a reversal (colostomy?) 1 year after, and it has now been about 2+ years since then. How did it go? I understand that the first few months are challenging, but do you have any issues now? In reading other support groups specifically in the ostomy boards, it makes it seem that the majority of reversals are difficult and have lasting issues, and the ones that go relatively well, and have a similarly “normal” life is in the minority.

This also leads me to another question. I understand that everyone reacts differently to chemo. There is a long list of side effects. However, just like any drug, we are used to look at the side effects to be “exceptions” and in asking my oncologist, she made it seem as if it is really the very minority of cases that have any of those side effects. BUT as I read everyone’s experience, again, it seems to me that NOT having these side effects is reserved to a minority, and the question is more in terms of the degree that you will have it...
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; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Stage IIA: Chemo or not?

Postby NHMike » Thu Mar 04, 2021 2:28 pm

Sunnycd wrote:NHMike, I see you had a reversal (colostomy?) 1 year after, and it has now been about 2+ years since then. How did it go? I understand that the first few months are challenging, but do you have any issues now? In reading other support groups specifically in the ostomy boards, it makes it seem that the majority of reversals are difficult and have lasting issues, and the ones that go relatively well, and have a similarly “normal” life is in the minority.

This also leads me to another question. I understand that everyone reacts differently to chemo. There is a long list of side effects. However, just like any drug, we are used to look at the side effects to be “exceptions” and in asking my oncologist, she made it seem as if it is really the very minority of cases that have any of those side effects. BUT as I read everyone’s experience, again, it seems to me that NOT having these side effects is reserved to a minority, and the question is more in terms of the degree that you will have it...


I had an ileostomy. An ileostomy is where they cut a hole on your right side between the small and large intestines and pop a piece outside your body. A colostomy goes at the end of the large intestine. My ileostomy was on the right side of my body while your colostomy is likely on the left side of your body. I had rectal cancer and they removed the rectum so I will have a lot more problems than you will as you still have yours. The rectum collects waste and holds it until you go to the bathroom. I don't have that organ anymore so I have less control. It's still a problem for me but I do a number of things to manage the problems.

I do not think that you should have the control problems. You might have some other issues related to colon cancer though. I can't say specifically as that's not the cancer I had.

On side-effects: I'd say that most don't have all of the side-effects of the Xeloda for Neo-Adjuvant Chemo. You're more likely to get some symptoms from Adjuvant Chemo as the dose is a lot higher.

The Oxaliplatin is a lot rougher than the Xeloda, particularly the side-effects related to temperature. If you're in a cold climate, then doing it in the winter can be a challenge.

One thing you'll find is that the folks here can tell you things that the doctors and nurses can't because we've been through it.
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: 88
Joined: Fri Feb 26, 2021 10:36 am

Re: Stage IIA: Chemo or not?

Postby Sunnycd » Thu Mar 04, 2021 3:37 pm

One thing you'll find is that the folks here can tell you things that the doctors and nurses can't because we've been through it.


I realize that. This community has been a life-saver as I navigate through this. I wish I had stumbled across it sooner. For instance, when I had the surgery with the colostomy and was discharged, all they said was, “eat whatever you want and walk a lot; see you for a follow up to check if your wounds are healing and we will talk next steps in 3-4/weeks”. Alas, I went home, feeling good, and in 3-4 days, I was nauseous, feeling miserable. Back to ER, totally backed up, tubes down my nose to throat to relieve some of the obstruction. Then they told me “oh, yeah, this is pretty normal after surgery. Your colon was lazy and needs the adjustment”. Wish they had told me before I was discharged? In reading here, I do see it is common, with tips on how to avoid it, and I could have been on the lookout for these symptoms...Having said that, I feel EXTREMELY lucky that I live in a time and place where we can all remotely share these experiences and support each other. And I thank the generosity of strangers (looking at you, NHMike, GreenTea and many others) who take their time to educate me.
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; 09/21: 1.5
07/14/21 colostomy reversal
09/24/21 CT clear
10/12/21 colonoscopy; 1 polyp
12/05/23 colonoscopy clear
MSS, RAS/RAF wild, PIK3CA mutant

hwr
Posts: 21
Joined: Wed Aug 28, 2019 7:19 am

Re: Stage IIA: Chemo or not?

Postby hwr » Fri Mar 19, 2021 5:01 pm

I was diagnoised with Appendix cancer in July 2019. I had R Hemicolectomy and all nodes were negative. Classified as IIA. Oncologist offered chemo but said 3-5% reduction in risk of recurrence. He said my risk was about 20% chance of recurrence. I'm in good health and was 73 at the time. He said he would not do it as it would reduce quality of life at minimum for a year, and psssibly permanent side effects. I have 3 friends who are doctors and all agreed that the small reward was not work the risk. I decided not to do it. Time will tell. In the meantime, I'm NED.
07/2019 Appendix cancer; Goblet Cell Adenocarcinoma; T3 high grade; CEA 0.9
07/2019 CT chest, abdomen, pelvis all clear
08/2019 R hemicolectomy; negative pathology; IIA, NED
01/2020 CEA 1.0
02/2020 CT clear
09/2020 CT clear

User avatar
Green Tea
Posts: 451
Joined: Mon Oct 24, 2016 10:48 am

Re: Stage IIA: Chemo or not?

Postby Green Tea » Sat Mar 20, 2021 12:35 am

Sunnycd wrote:.. 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.

Sunnycd -

It's good that you finally managed to start chemo. You will feel much better once you have adapted to the rhythm of the dosing schedule.

You mentioned MSK for the infusion. Which MSK? Is it one of their centers in NYC, or one of their centers in NJ?
https://www.mskcc.org/locations.

Also, have you now changed to an MSK oncologist for your chemo prescriptions, or are you still with your original oncologist? Who are you supposed to contact if there are problems at home before the next infusion? Where do you go for the blood tests required before each new infusion cycle -- NYC or NJ?

For your information, here is a link to some information describing the dosing regimen for standard Capox. How does it compare with what you are being given now?
http://www.northerncanceralliance.nhs.uk/wp-content/uploads/2018/11/CR008CAPOX-oxaliplatin-capecitabine-CRP09-CR008-v1.5.pdf

Here's wishing you a trouble-free four cycles of Capox !


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