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Anyone with Stage 2 (a-c) taking or considering Xeloda as a treament?

cdiannec
Posts: 2
Joined: Jul 2011

My mother has been diagnosed with Stage 2c Colon cancer. The doctor has given her the option to take Xeloda pending the outcome of her PET scan in late August. Has anyone else been given the "option" to take chemo or not? While I cannot make the decision for her I would like to assist her with the best info available.

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

I think you will get your best input from other Stage 2 folks (I'm Stage 4). However, one problem with Stage 2 is the number of nodes sampled. If no nodes show cancer you're Stage 2, but (not to scare you) what if they sampled one more node? Would that show cancer? I know a couple of initially Stage 2 folks who did no chemo and ended up with distant metastases. No one can know for sure, but they might have been fine if they did chemo after initial diagnosis.

Xeloda is not that difficult. I think if I were you I would seriously consider the chemo.

Betsy
Stage IV
Diagnosed 5/05

cdiannec
Posts: 2
Joined: Jul 2011

Those are my thoughts as well. I can certainly understand the "what if" mentality. They actually tested 16 nodes; however, pathology states these were cancer free but necrotic. WHY were they necrotic? I believe the PET scan will be more informative.

northernlites
Posts: 96
Joined: Jun 2011

Hi, I recently had all of my colon removed due to a5cm tumor and Lynch Syndrome. The dr removed 43 lymph nodes, all of which were clear of cancer. The Dr. has not mentioned any chemo treatment for me at this point.

tessa

djm_2010
Posts: 52
Joined: Dec 2010

Hello, I have been diagnosed with stage 2a rectal cancer, all nodes are negative but I have lympho vascular invasion. My onco decided to be on the safe side and had given me xeloda and oxaliplatin for8 cycles. I had finished my chemo last may 2011 but only up to the 7th session because I had adverse reaction to it. Did I regret having chemo, no I did not because I wanted to be sure that all my cancer cells to disappear. I was still able to work durng my chemotherapy days at least 3x a week, the side effects were very minimal and all of my friends told me that I could be a poster girl for chemo. I had my ct scan last month and cea monitoring and all appears to be normal. I feel better today and yes theres life after cancer and it is still a wonderful life. Take care and Godbless you!

jomar
Posts: 11
Joined: May 2011

I have cancer similar to yours. Did they recommend removal of your rectum?

djm_2010
Posts: 52
Joined: Dec 2010

Yes my rectum was removed much to my objections because my cancer was just 4 cms from the anal verge. My husband signed for the consent and he would rather have me alive than having the cancer return and have chemo for life. It's hard at first but I have adjusted now and living life to the fullest. There are times that I still feel depressed but this is only physical, what's important is what you are inside and the love of your family. I Have a 6 yr old son and I want to live longer for him and I'm still young. My doctor also told me that if I would persist inhaling any rectum reconnected then I might have issues with chronic diarrhea and be tied to the bathroom which would be more difficult for me. I just use special underwear from ostomysecrets and can still wear my body hugging outfits he he he. How about you? What type of operation have they done on you? I hope youre doing well. Take care!

k1
Posts: 220
Joined: Dec 2009

Yes, I was Stage IIB and given the option to take Xeloda by the oncologist I saw for a second opinion. My other doctors (colorectal specialist/resection surgeon and the first oncologist he referred me to) said there was not sufficient scientific evidence to prove that chemo would improve my chances of survival as a Stage II patient. And that those chances with surgery alone of survival without recurrence were excellent (85 to 90 percent).

At the time I opted not to due chemo because I was an only adult child caring for both my dying mom and my father who had breast cancer and was undergoing chemo himself. Chemo for me would have involved travel, and leaving them alone.

16 months later, after my mom had died and my father finished his own chemo, the doctors discovered I had distant metastasis to my liver. In June I underwent a liver resection and am getting ready to start six months of chemo next week.

I felt I had to choose between standing by my dying parents and getting chemo for myself when it wasn't known if that chemo would even help me. But if there had not been the severe life or death choice to be made about my family, I probably would have tried the chemo. Still do not know if that would have changed my fate or if I was just destined to have a recurrence regardless.

K1

northernlites
Posts: 96
Joined: Jun 2011

Hi Kl,
where was the cancer? What type of surgery did you have and were any lymph nodes tested?

Tessa

newguy1
Posts: 4
Joined: Jul 2011

I think you should give it a try.... I've been on it and still taking it and no side effects for me yet...

My entire rectum/anal sphincter was removed.. now have a permanent colostomy.... Life is good... I can do everything I did before being diagnosed.

Ed

k1
Posts: 220
Joined: Dec 2009

My original cancer was in my sigmoid colon in late 2009. It was discovered when I had a routine colonoscopy the week of my 50th birthday. I had a colon resection and was T3 N0 M0, Stage II. Yes, they removed lymph nodes, about 11. The operation was initially done by my doctor in Dallas using the DaVinci Robot but the surgery had to be finished up manually by my surgeon due to the difficulty of position of tumor/lymph nodes.

I had CT scans every three months as followup and when it came time to have one again (my fifth) in March 2011, I requested to have an MRI instead of a CT scan because I was concerned about all the radiation I was getting with frequent CT scans. Although the earlier CT scans had never shown anything, the MRI showed three small "lesions" on my liver. I was then asked to have a CT scan right after the MRI to see if it would confirm these lesions; they did not show up on the CT scan. So then I was asked to have another MRI in 8 weeks, in May 2011, and this MRI again showed the 3 lesions and that they were slightly larger.

Then I was sent for a PET scan to confirm the lesions and see if they would light up to indicate cancer. They did not light up.

No one could explain why spots on my liver showed up on MRI's but not CT scans or a PET scan. My oncologist said my choices were to have a surgical explorative biopsy (they were too scattered and too small to be candidates for a needle biopsy) or wait three months or six months or until whenever they got big enough to show up on a CT scan.

I chose to have the surgical biopsy a few weeks ago. I went in thinking it would not be anything serious because I felt great and had returned to lots of physical exercise and normal activities and just didn't think cancer would allow me to feel great. But I decided I would rather know than not know in case it was indeed mets on my liver.

As it turned out, the three lesions were indeed mets to the liver. One was dangerously close to a blood vessel. There were two other "things" on my liver that were not cancer but were removed for pathology testing. I woke up with a 13 inch scar, spent 7 days in the hospital (6 in ICU) and am still recovering from what was a very major and painful surgery.

I was and still am basically stunned to have a cancer recurrence so soon after my colon resection and after being given that information by multiple doctors that I was most likely cured by the first surgery alone.

If I hadn't asked for the MRI instead of another CT scan to reduce my exposure to radiation, I would still be walking around with cancer cells multiplying and have no knowledge of it. I had to argue to get the MRI instead of the CT scan because CT is the standard protocol for following up colon cancer initial diagnosis at the major research and teaching med center where I get treatment.

The recovery from liver resection was difficult and I was not prepared for it. It was two weeks before I could turn onto my side in bed. The pain med I have always used after surgeries was off the market and I have allergies to others. So it was Tylenol only after leaving the hospital. I did not feel like eating and lost 15 lbs. in two weeks.

I just started feeling better about the seventh week and started eating more and getting out of the house to do things other than medical appointments. I was having trouble wearing shorts, pants or skirts due to waistband pain on incision. I wanted to go out in public finally and walk WalMart or the mall for exercise. So I invested in some casual type summer dresses with the elastic higher on chest instead of on abdomen. I do not know what guys can do about that problem with waistbands in public.

So I am about to start chemo and pretty nervous about it. But since so many people have done it and gotten through it I am inspired and feel I can get through and ask for help from people here. I will be doing 5FU with oxipalatin and leucovorin (if there are supplies). I know I probably did not spell those correctly.

K1

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

glad you got the mri and they got your liver spots.
here hoping this is the end of your crc dramas.

hugs,
pete

k1
Posts: 220
Joined: Dec 2009

Yes, I feel like I haven't had a break whatsoever in two years, but I just keep plodding on and hope to surface for air one of these days. BTW, Pete, I do yoga and run a little and keep on doing it even though in my case it did not prevent me from going from Stage II to Stage IV in a year. I do it for my mental health ...any physical benefits are a bonus.

You keep flying!

K1

opensky333
Posts: 1
Joined: Aug 2011

My mother aged 64 is suffering with Colon Rectal Carcinoma of the Squamous type T2 N1 MO...she has undergone 30 sittings of Rapid Arc Radiation with Oral Chemo of Xeloda tablets ending 8th January 2010... she has subsequently undergone 5 biopsy of which the last biopsy( Internal Biopsy) proved positive with Grade-I well differentiated squamous. After which in Feb 2011 she underwent colon rectal surgery (colostomy) chemo is currently ruled out but she complains of pain at the operation area and also frequent stomach pains.. the Doc has informed of PET-CT entire to be conducted as a routine procedures carried out in these cases...any known case at this stage or later.... in sharing information will be helpful

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

apparently the continuous 5fu bottle is cheaper and more effective.

the pills are not for free here in australia, bottled 5fu is.

the pills rely on digestion and then conversion in the liver to activate the chemo.
potentially you may miss doses with gastric upset. and I also wanted to
rest my liver. also some benefits of lowered dose constant supply straight into the vein.

I liked lagging around my bottle everywhere, it made me feel special.

goodluck making your choice, I went with what my onc recommended.

hugs,
pete

Dyan Clark's picture
Dyan Clark
Posts: 22
Joined: Aug 2011

My husband took this along with Radiation, really no side affects from Xeloda, he has been in remission 3 years. He will now have to do chemo as his CEA keeps going up. Stage 2 colorectol cancer

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