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Looking for Stage II Updates for Colon Cancer Peeps

Posted: Thu Apr 05, 2018 5:44 pm
by Beckster
I am posting this to see updates on Stage II Colon Cancer members. Stage II is very controversial when it comes to treatments...some of us had adjunct chemo and some did not. We have no lymph node involvement, but still at risk for recurrence. I see so many updates from stage III and IV, but none for Stage II. How are the Stage II peeps on this forum doing? Is everyone still NED? Would love to hear updates....

I will start... I had a right hemi resection in November of 2016.. 2 high risk factor- LVI and Grade 3. I sometimes wonder how much these two are subjective. Started with Capeox but allergic to Oxi on first infusion. Finished 6 months of Xeloda with no interruptions. So far, so good...still NED. Just had my appt last month and my CEA went up from 2.8 to 3.1. Not to concerned. Having a scan and bloodwork in June. I might breathe a little easier when I hit the 2 year mark with no recurrence. It has been a rough year...my dad died last week, 2 days after my onc appt.

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Thu Apr 05, 2018 8:36 pm
by Teddybear
I am a stage 2A just starting my journey. Sigmoid Lap colectomy six weeks ago. Have been living in the gray area of adjunct therapy. Visited three oncologist and all had a different take on what to do. It was clear none of them really know how to proceed with stage 2. Very disheartening how little is understood about treating CRC. I decided on Xeloda mono therapy for 6 months to start in two weeks. I could not find anything to justify oxi at this time. I hope others with more to offer respond.

:D

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Thu Apr 05, 2018 8:38 pm
by Teddybear
Very sorry for the loss of your father. I wish your family peace .

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Thu Apr 05, 2018 9:03 pm
by Beckster
Teddybear wrote:I am a stage 2A just starting my journey. Sigmoid Lap colectomy six weeks ago. Have been living in the gray area of adjunct therapy. Visited three oncologist and all had a different take on what to do. It was clear none of them really know how to proceed with stage 2. Very disheartening how little is understood about treating CRC. I decided on Xeloda mono therapy for 6 months to start in two weeks. I could not find anything to justify oxi at this time. I hope others with more to offer respond.

:D

Thanks for responding.... Stage II is so gray....I did Xeloda for 6 months. It is doable, but just watch for hand and foot. If you hands and/or feet start to get red and you have a hard time walking or using your hands, tell your onc. Mine started after the 2nd cycle. What was the reason for doing chemo with no high risk features (less than 12 lymph nodes, perforation, obstruction, LVI/PNI, T4 tumor, preoperative elevated CEA)? Good luck...if you have any questions, let me know.

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Thu Apr 05, 2018 9:30 pm
by Teddybear
I decided on doing chemo after oncologist explained a cancer cell can get out and travel leaving no trace until it decides to grow. I know the few studies on stage 2 show little to no difference with chemo, but I want to do everything I can. My oncologist said xeloda kills cancer cells so I am hoping if there is any escapees the xeloda may help. I hope this gets easier. I am living in a frame of mind of fear. Did you take any vacations while on Xeloda? I really want to do something with my kids this summer. Just don’t know how bad therapy will be.

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Fri Apr 06, 2018 12:22 am
by menreeq
While on Xeloda, I traveled cross country for the holidays. I avoided international travel even though I wasn’t immunosuppressed. My labs were normal, no drop in white blood cells or platelets. Although my chance for complication was low, I didn’t feel like taking major risks. My main issue was hand foot syndrome and fatigue.

I think you’ll be okay to travel with your kids this summer. You’ll have an idea of what your symptoms will be like by then. Also, you could look into the medical centers at your destination. If there’s a good academic center nearby, you know you can get high level care if anything untoward happens.

I’m not even a year out, but the update is that I am NED.

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Fri Apr 06, 2018 6:22 am
by Beckster
Teddybear wrote:I decided on doing chemo after oncologist explained a cancer cell can get out and travel leaving no trace until it decides to grow. I know the few studies on stage 2 show little to no difference with chemo, but I want to do everything I can. My oncologist said xeloda kills cancer cells so I am hoping if there is any escapees the xeloda may help. I hope this gets easier. I am living in a frame of mind of fear. Did you take any vacations while on Xeloda? I really want to do something with my kids this summer. Just don’t know how bad therapy will be.


Went on vacation while on Xeloda...no problem. Just try to stay out of the sun. My onc did not want me sitting out in the sun until my chemo was done. One day, I worked outside in 90 degree weather... :shock: My hands and feet burned so much that I had to soak them in cold water. It took 2 hours to calm them down.

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Fri Apr 06, 2018 8:29 am
by Deb m
Hello,

My husband is a stage IIt4a survivor. His cancer was in his cecum. He had surgery to remove his cecum, 15 inches of his ascending colon, his terminal ilium, a couple inches of his small intestine, his appendix, which the tumor penetrated the orifice of and 24 lymph nodes. He did 6 months of folfox, last two treatments without oxy due to neurophy getting to bad. We had our treatments done locally, but everything else at MDA in Texas. We have been cut loose from everything now except colonoscopy's every three years. He is 7 1/2 years out from surgery. He was considered high risk for recurrence because of the t4 and positive LVI. With the exception of very slight neurophy lingering on the bottom of his feet, he, I would say is as good as he was before he got sick. It seemed like we would never get to this point, but we just took it one day at a time. It was very difficult for us because my husband was the bread maker in the house and he being a pilot, was unable to fly while undergoing chemo. Our income totally stopped and we had to go on cobra to continue his insurance, very expensive! We have two boys who were at the time 12 and 13 years old., also very difficult for them. Do I still worry about every little stomach ache, cold, back ache etc he gets, you bet. I don't think the fear every goes totally away, but it does get better.

Stage two is the controversial stage as far as treatment and follow ups go, which is how we ended up at MDA. What our local oncologist was suggesting just didn't sound correct. The major cancer centers seem to have a good understanding of stage two and who should be treated ect. The local hospitals just kind of "wing it". Stage II is tuns better than stage III and Iv, but still is very concerning, especially if you have high risk features like we did.

My husband was just 50 at diagnosis and has quite a bit of cancer history on his mothers side of the family. Hence, we had genetic testing done at MDA and he is MSS with no genetic abnormality. I was surprised by this because of his many family members have had cancer. Sometimes I think there is a genetic problem in him somewhere, and its one that they haven't learned about yet and don't test for. He has two brothers and a sister. All except his sister have had cancer. Prostate, lung and him with colon. He also has three of his 5 aunts who have had cancer of different kinds and cousins from the same side of the family and yet he tested neg for any genetic abnormality? I worry about my sons even though he was neg for everything.

At any rate, we are very grateful for our outcome and pray that his good health continues.

I truly wish all of you the best, hang in there!

deb m

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Fri Apr 06, 2018 9:01 am
by susie0915
I was stage 2A rectal cancer, diagnosed May, 2015. Did the radiation/chemo, had surgery, and Xelox after. After completing chemo/radiation, my surgeon did a sigmoidoscopy and said all that was left was scar tissue. Also a pet scan showed no evidence of disease. Surgeon said may not need chemo after surgery depending on pathology report. Pathology showed clear margins, 0/24 lymph nodes and minimal residual cancer cells remained. Oncologist recommended chemo even though chance of recurrence was low, she could not guarantee cancer cells did not get into blood stream. My chemo was delayed a few weeks as I had a bowel blockage 4 weeks after surgery and was in the hospital for 3 1/2 weeks. I did require surgery to remove scar tissue and my surgeon reversed my ileostomy at that time to avoid another abdominal surgery later. Probably made it a little tougher during chemo, but I made it through the 6 rounds. I am still currently NED and have a follow up appointment with my oncologist in May. My CEA has always been less than .5 but did increase to 1.1 during chemo and was as high as 1.0 last year. My oncologist will order a ct scan when I see her. There is a small spot on my lung that is being monitored although my oncologist is certain it is related to the scarring and inflammation in my lungs due to a possible auto immune disorder. There has been no change the past year, but it is always on my mind when scan time comes up.

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Fri Apr 06, 2018 3:29 pm
by Robino1
2014 colon cancer stage IIA. Resection right ascending colon. No chemo.

3 years (almost to the day) stage IV recurrence with seeding on my omentum and caking on my liver.

Hindsight- wish I had pressed to get chemo.

Currently I've just finished my 16th round of chemo. My CEA was declining nicely then rose a bit but is now going down again. I just had a bit of skin cancer removed and I tribute the spike in CEA to the skin cancer (hey, it's possible ;) ).

Next CT scan is scheduled for the 11th. I hope to see what has been on all the reports: 'Marked response to therapy'. :mrgreen:

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Fri Apr 06, 2018 7:35 pm
by KimT
Stage 2a. 10cm tumor in the cecum. No chemo. No reoccurrence in 8 years.

I did have a second primary cancer 18 months after my colon cancer diagnosis. The second primary was ovarian and I did do chemo for that one.

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Fri Apr 06, 2018 10:32 pm
by teacher49
I was Stage 2A rectal cancer diagnosed in 2011. Mine was ultra low so following chemo-rad, with 50% shrinkage of 4cm tumor I had abdominoperineal surgery with perm colostomy. I did adjuvant chemo to try to improve on the recurrence rate. So far all good. Only regret was that I didn't stop adj. chemo with oxaliplatin at 6 wks instead of at 10 wks. I do have peripheral neuropathy in my feet. Doesn't impair me, used to it.

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Sat Apr 07, 2018 1:56 am
by weisssoccermom
Stage IIA rectal cancer. Chemoradiation + transanal excision.....not the 'standard of care'.
Attempted the XELOX....severe allergic reaction to oxi....stopped after one cycle
Still continued with Xeloda only.....

I am here.....almost 12 years from diagnosis....11 years from my surgery (April 20th).

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Mon Apr 09, 2018 2:49 pm
by Teddybear
Good Luck on your CT Scan Wednesday Robin. Please let us know how it goes. Many prayers for you!

Re: Looking for Stage II Updates for Colon Cancer Peeps

Posted: Mon Apr 09, 2018 3:45 pm
by Eleda
Weisssoccermom
My surgeons nurse rang me today to talk about transanal ular,,,!!!!
Ive 6 lymphnodes effected also and would stage originally at Dukes C
Im curious as to the severity of this option, and recovery??
My tumor was 3 cm 2.5cm above AV which has shrunk by 80%
Not sure this is,why they are thinking thia option??
Can u talk me through the procedure???
Im.assuming ill still need laparoscopy to remove the lymphnodes, and loop illiostomy

Thanks ADELE