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Stage 2 colon cancer- should I take xeloda?

Cinnamon Jones
Posts: 21
Joined: Feb 2017

I was recently diagnosed with stage 2a colon cancer.  Had a resection in December and currently feeling well.  My oncologist has said I could try xeloda but there is not a lot of evidence that it will improve my survival rate by more that a few percentage points.  I am struggling to make this decision.  Is it worth the risks of dealing with the side effects?  Any input would be appreciated. 

mozart13
Posts: 118
Joined: Nov 2016

"few percentage points" might mean life down the road.

It is very easy to controll side effects, by increasing or deacrising dose, with regullar blood work.

I was on xeloda for 5 weeks, just had burning feet and small cracking of the skin, easilly resolved with cream. Was very tired at the end of treatment, was receiving radiation at same time.

Wish you well, which ever way you decide to go!

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Chemo wise, most people don't have lasting problems from Xeloda.  It's the IV ones that are doozies.  I can't tell you either way, it's a personal decision but I didn't get chemo when I had my resection and my cancer came back.  My doctor at the time didn't think it was necessary.  He was wrong.  I paid a huge price.  Xeloda is doable as long as you are not extremely sensitive to medications and don't usually have lasting side effect issues.  It feels crappy while you're on it but once you're off, you're done.  Wear cottom gloves and socks to bed and keep your hands and feet moisturized before you even start taking it if you choose to do it.  Prevention is better than fixing.

Cinnamon Jones
Posts: 21
Joined: Feb 2017

Thanks for the input.  My concern is that I work as a nurse and I am washing and sanitizing my hands all day long.  Not sure if I could tolerate the dry skin and not working is not an option.  I am thinking of trying it and then stopping if it didn't work out.  What stage were you?  

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Tough decision. I was stage IV so not really able to comment on your decision. I had to do everything I could to try and battle the advanced stage cancer. But I will say, in my experience, some of the chemo I took didn't seem to be effective in my cancer and one drug was mirraculously effective. Also, ne in my hands and feet was a very real side effect from oxciliplatin. The neuropathy in my hands completly dissipated however the neuropathy in my feet seems to be permanent. In hind site the oxciliplatin didnt seem to help kill the cancer cells but instead caused permanent neuropathy. Only if we could know what would work and what wouldn't work in advance... Of course that is the dilemma. Good luck and God bless!

 

impactzone's picture
impactzone
Posts: 532
Joined: Aug 2006

As stage 4 person, I always took the most aggressive path. I would never be stronger than today. I hope whatever your decision it works out well.

Chip

sdev's picture
sdev
Posts: 1
Joined: Feb 2017

I dont recall dry skin being one of my side effects. I did Xeloda and Oxcliplatin for stage IV. I agree with a previous poster that said the IV stuff is the worst and in comparison the pills are considered mild. Just be ready for a bit of a bumpy ride. If it were me, I would error on the side of being more aggressive rather than less. You can always use lotion for dry skin.

BrianChristopher
Posts: 23
Joined: Feb 2017

I was diagnosed as stage 3  colon cancer but only one of my lymph nodes was affected and so I had the resection done in December and have just started Xeloda on Feb 3 and so some of the side effects such as hands and feet sensitivity is real but i use Burt's Bees hand salve once in the am and again at night and so far no problems.  I looked up the different stages of colon cancer before I knew my results and i found that stage 3 with one affected lymph node faired much better with chemo, my oncologist and i agreed on Xeloda and infusion of Oxaliplatin.  Since you were diagnosed as a stage 2 I think the number of lymph node plays a big role in whether or not chemo is most effective, but you must decide what is best.  I found this site to be of immense help in both learniong and keeping myself from losing perspective given that i search the internet high and low with a variety of good informationand a lot of B.S. My chemo regimen is; 2000mg of Xeloda each day 1000mg in am and again at night, the Oxaliplatin is every three weeks for six months, I just started my 1 week break off of the Xeloda; my schedule is a 3 week schedule  beginning with the infusion of Oxaliplatin (once every 3 weeks), and also the Xeloda (daily) for two weeks and then one week off before going back for the next round of infusion and then Xeloda.  I pray we all are healed and recover well. Brian

Cinnamon Jones
Posts: 21
Joined: Feb 2017

Thanks for your input.  I have stage 2a. 19 of 19 lymph nodes negative.  Negative margins, No perforations, CEA normal.  Haven't made a final decision but need to do so very soon. 

wszimmerman
Posts: 4
Joined: Feb 2017

My husband, 43, had stage 3b.  His resection was the beginning of October and then he started Xelox in November.  We were told the oral chemo would have fewer side effects and our insurance covered it so we decided that was easier than coming home with a pump and doing Folfox.  (We have nine children, seven of which are boys.  The thoughts of tubing and needles with all those kids was worrisome. Yes, they are all ours and we know what causes it.  Tongue Out)  

During the off week after the second treatment my husband started experiencing diarrhea.  We spent early Christmas morning in the ER.  With each successive treatment the off week got worse and worse until after the fourth one I woke up to find him on our bathroom floor, temperature elevated.  We ended up in the ER and then back at the hospital several times to top off his fluids.  His potassium dropped to dangerously low levels.  

When we went in to start the next cycle the oncologist didn't give us any choice we had to switch to the 5FU, the Xeloda was killing my husband a little too effectively.  

I realize this is a very unusual case, less than 10% of patients have this reaction.  Just be aware that it is a possibility, especially if you've lived a live with no alcohal.

Good luck and God bless.

Cinnamon Jones
Posts: 21
Joined: Feb 2017

Wow, how scary that must have been.  Hope things are going better now.  What did you mean by the comment "if you have lived a life with no alcohol?"

wszimmerman
Posts: 4
Joined: Feb 2017

We don't ever drink alcohol, never even tasted the stuff.  We were told that because of that his reaction would be more harsh.  Does that make sense?

We just had the second dose of 5FU and things seem to be going much better for him.

 

Trubrit's picture
Trubrit
Posts: 4900
Joined: Jan 2013

Sorry, I'm butting in on your comment to Cinnamon; but I know what you mean because I think this is what happened when I went on chemo. 

I do not take medication. I haven't needed it, thank goodness, for many, many years. And that is why I think I had such a severe reaction to chemo. I think I had about every side efect possible. I believe it was because I did not take medicine for so many years. And I also do not drink alcohol. 

TRU

wszimmerman
Posts: 4
Joined: Feb 2017

No need to apologize.  :)  

Being young and "healthy" has actually made treatments harder on my husband than anything.  A few allergy meds in the spring/summer were all he ever took.  

Our oncologist told us he should breeze through chemo; the pharmacist told us it would be really hard on him.  Unfortunately it was a win for the pharmacist.  

Bellen
Posts: 281
Joined: Aug 2016

Hi Phil64 - would you mind sharing the part of your chemo cocktail that you found was really effective.  I know everyone is different, but I'm always reading and trying to learn of my chemo options for the future.  Having folfiri + avastin right now. Thanks so much.

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

I have a blog where I've documented my battles from the dignisis to date. I also have a chart where I show my CEA results and overlay the chemo cocktails I was receiving. 

Re: https://pscamihorn.me/cea-history/

If you examine this chart you will see that Erbitux was highly effective on my cancer. So effective that my oncologist gave me a year of just Erbitux in an attempt to make sure any rogue cancer cells would be obliterated.

The surgeon that did my last liver resection said he didn't think I should take the Erbitux treatment but I trusted my oncologist and did 24 of 24 treatments from Feb 2015 through Feb of 2016.

So far I'm still NED. Thanks be to God.

Wishing you all healing Light and Love.

ellend
Posts: 84
Joined: Apr 2016

I was also diagnosed stage 2 and after resection, had clean margins, negative 19 of 19 lymph nodes. I also struggled with whether or not do have the adjuvant chemo. I ended up getting FOLFOX for 8 treatments. Well, not entirely true because they stopped the 5FU and Leucovorin after the 2nd treatment because my platelets were getting too low. I still had the bolus 5FU in the fanny pack for an additional 2 days though. The side effects were worse with the Oxaliplatin than the Xeloda IMHO. I'm still dealing with peripheral neuropathy in my hands and feet due to the IV chemo. I'm hoping it will get better over time.

I took Xeloda during the radiation treatments I underwent prior to surgery to shrink the tumor. I was taking it 7x a week, 3x per day for 5 weeks. I didn't take the Xeloda the last weekend because my hands and feet were getting cracked. I probably didn't take care of them as well as I should have, though. Plus everyone's reactions are different.

Good luck with whatever path you choose.

Worriedchild
Posts: 56
Joined: Dec 2017

hello please tell me why did you opt for chemo when it was stage 2

Cinnamon Jones
Posts: 21
Joined: Feb 2017

I chose not to do the Xeloda.  There is not enough evidence that it would make a difference.  When my oncologist said it is not a cure and could still come back. I decided against it.  If it comes back I don't feel it will be because of this decision.  I am also single and need to be able to keep working.  That also played into my decision.  

mozart13
Posts: 118
Joined: Nov 2016

I am going for LAR at the begining of April, the plan is 12 rounds of chemo after,  surgeon thats gonna do the surgery thing thats over killing, but I am gonna go for it. I am an RN as well, will try to go back to work as well, most likely modified work, dont feel like sitting at home. 

Right now I am back to work after chemo/rad, by my will, and it feels great, was going nuts at home.

If you have to work, than work,  but good thing with nursing is posibillity of changing area that one wants to be in, try to pick the area that suits your current condition.

Good luck!

 

Canadian Sandy's picture
Canadian Sandy
Posts: 520
Joined: Jul 2016

I was stage 11B when diagnosed. Did 3 treatments of xeloda and 1 treatment irinotecan. Ned at the present time and hope to stay that way. i didn't know when I started that the cancer had spread to some pelvic lymph nodes. So happy that I decided to do adjuvant chemo. I ended up in the hospital from the I irinotecan treatment butt I think it helped.

chp's picture
chp
Posts: 29
Joined: Dec 2012

I was stage 2a in 2012.  I did take the xeloda because I wanted to be sure I had done all I could.  I didn't have any problems with my hands peeling but did with my feet.  It really didn't cause me that much trouble.  It did make me more tired than usual - if I walked 5 miles - which I tried to do most days, I would be really tired.  I was retired by that time so I wasn't working, don't know how that would be.  If you have any questions feel free to ask me anything.:)

Cathy

Rachel661
Posts: 1
Joined: Oct 2017

Hi Cinnamon. Im Stage 2 Colon / clear margins / 16/16 neg. My oncologist recomended Xeloda for 6 months. I was wondering if you decided to do the treatment and

if so, what has you experience been as far as side effects. Thank You.

Cinnamon Jones
Posts: 21
Joined: Feb 2017

Sorry I am just responding now. Couldn't figure out how to log in.  I decided to not take the Xeloda.  I will be one year NED Dec 1st.  However if the cancer does return I will certainly consider chemo.  It just didn't seem to add that much to my changes of 5 year survival. I was told maybe 2 per cent and the cancer could still return.  The survival rate was 88-90% without.  I decided to preserve my health for future battles if needed.  I must also add that I am single and still need to work and that also played into the decision.  

danker
Posts: 1191
Joined: Apr 2012

If I were NED I would not bother taking any drug that might have side effects.  Good luck to yoy whatever you ddecide!!

Tunadog's picture
Tunadog
Posts: 233
Joined: Mar 2017

 I had a recurrence and I'm on maintenance Chemo, 3500mg Xeloda (2 weeks) and a shot of Avastin every three weeks.

 I tolerate it well, almost no side effects except for a little fatigue.

It's keeping my cancer from spreading. 

Good Luck

bobby66
Posts: 69
Joined: May 2017

hi,

 

di you have a high deductible with your Xeloda? my oncologist prescribed me xeloda but i was not able to afford it, so i'm staying with my regular chemo.

Cinnamon Jones
Posts: 21
Joined: Feb 2017

Hadn't thought about that.  I'm now on Medicare so not sure what I would have to pay.  But will certainly keep the cost in mind if I need to make that decision in the future

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

I took Xeloda and Radiation for six weeks. The Xeloda affected my red and white blood counts. I'd say that I lost about 75% of my stamina but was able to work and mostly function. There were some GI issues as well but it's hard to tell if those were the Xeloda or the radiation. The radiation was a lot tougher than the Xeloda. So it's a problem for some but I asked my Oncology Nurse about the percentage of people that continue working and she said that the vast majority continue to work.

There is a rare genetic condition where it's dangerous but 5FU would have the same danger. My oncologist did a test to check for the gene on me and I assume that this is standard practice.

Cathleen Mary
Posts: 827
Joined: May 2011

Stage II B....chose no chemo 8 years ago...still NED.

I have had slightly elevated CEA for years...4-5.

CM

 

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

This is an old post, but my oncologist recommended Xeloda/Radiation/Surgery/Chemo.  I'm not sure of my staging but mine was rectal cancer.  Good luck to the new ones posting.  You might need to start a new threat if you need new answers.

Kim

kmcgowan
Posts: 7
Joined: Dec 2017

I had surgery for colon cancer on 10/18/2017 and my Oncologist suggests taking Xeloda for 6 months. I had stage IIB with 15 negative nodes. I am at moderate risk but the percentage of survival is so minimal, around 3%. He also said he would like to see me every 3 months for followups. I am still not sure if I should do the treatment or not.  

 

Trubrit's picture
Trubrit
Posts: 4900
Joined: Jan 2013

It is a very hard decision to make, and at the end of the day, its all up to you. Pretty scary stuff!

We have folks here who have decided to go forward with treatment and those who have not. Some are here, and some have passed, and who knows if their decision made any difference. 

Have you thought about getting a second opinion?  There seem to be no set plan for every Oncologist, and sometimes they don't even know what is best. When I had my liver ablation, my Oncologist was leaning toward adjuvant chemo, but was not sure, so he called a colleagie in antoher state, and together they discussed my case.  I think if I were you (which I'm not) I would think about a second opinion, and that may make your decision easier. 

I wish you all the luck in the world, as you move forward with whatever deciosion you make. Don't look back, as it changes nothing.

May I suggest you start a new thread here on the forum   https://csn.cancer.org/forum/128   That way, members can answer your personal question without running over Cinnamon's thread.

Tru

kmcgowan
Posts: 7
Joined: Dec 2017

Oh sorry, I am new to the forum and did not realize I how to post. Thank you, I will start a new thread. Smile

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Stage 2 adjuvant chemo is still an active area of debate so it's not surprising that it's a tough decision.

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

Kmcgowan:

We share a common disease stage and decision regarding adjuvant chemo treatment.  My tumor was so large that it had to be treated prior to surgery with both chemo (Xeloda in pill form and radiation).  That treatment eradicated the tumor.  The surgeon did not find any evidence of it nor were any of my lymph nodes positive.  What a testament to the efficacy of neoadjuvant treatment!

But even with that outcome my oncologist recommended additional chemo after the surgery.  His argument was predicated upon the fact that none of my lymph nodes were biopsied prior to the neoadjuvant chemo/radiation so they could have been positive, which would have clearly warranted the adjuvant treatment.  I thought that was a good argument, but very speculative.

I agonized over the decision.  Then I factored in two more considerations: my age/state of health and whether or not the medical/insurance industry would approve the treatment.

All things considered, I am in the best physical, mental, emotional and financial condition that I will enjoy for the balance of my life.  It only makes sense to undertake this challenge now instead of possibly having to do so under less than desirable conditions.

I did not receive any pushback from the medical or insurance industry therefore I concluded that this course of action is not abnormal.  That was strong and affirming evidence to me that adjuvant treatment for the lower stages of CRC also has merit.

My decision was to undergo the adjuvant chemo, but with my restrictions.  I told my oncologist that I drew the line for quality of life during the treatment when/if I began to experience any neuropathy in my extremities.  This is not the cold sensitiviy, it's the neuropathy.  Since I was 29 (currently 66) I have suffered from two different hand ailments, Dupytrens Contractures and Reynauld's Syndrome (in both hands).  To quote PopEye the Sailor Man..."that's all I can stands, I can't stands no more!"  Consequently, I told my oncologist that I will only endure 6 cycles of infusion instead of the standard protocol of 12 cycles.  He agreed.

So that describes my decision making process.  Each of us have our own.  But it remains your decision and your responsibility to make that decision.  I want to underscore and emphasize what Tru stated above.  "Don"t look back..."  When we look back and second guess we are squandaring the moment and wasting energy.  It serves little to no purpose.  If a person makes a tough decision, and did so after considering the best available evidence, then that is the best that could have been done.  What is the best available evidence?  My answer to that question is dependent upon how much time is available to make the decision and a realistic assessment of the information that is reasonably accessible to a patient. 

I recall a moment in my life when I was an officer in the U.S. Army and was faced with a tough decision.  By chance the unit chaplain was in the vicinity so he and I socially engaged (talked) briefly.  He then asked me about the ongoing situation and what course of action I would recommend to the commander.  The chaplain was aware of the situation but not as knowledgeable as I was.  That really did not matter because he was trying to assist me in improving my decision making ability, not to influence my decision.  There's a big difference between the two.

As our brief conversation ended and we both needed to do other tasks the chaplain said something to me that I have never forgotten.  It was only a few words, but they meant a lot to me.  He said, "May the Lord be with you in your decision making process." That gave me confidence, and still does, whenever I am faced with and forced to make a difficult decision.

Jim

 

Worriedchild
Posts: 56
Joined: Dec 2017

hi there i wish you all the Luck 

my dad had resection too and it was stage 2 A will you please share you CEA level before surgery and what was CT and PeT scan report i shall be grateful

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

Worriedchild:

I assume your post was directed towards me.  If not, my information may be beneficial anyway.

My CEA level was so low while I still had a "yet to be treated" tumor that my oncologist ignored it.  He said that for me the CEA indicator was not accurate.

After my LAR surgery my surgeon said that he could not find any evidence of disease in my rectum.  Four lymph nodes were tested and none were positive.  Clean margins as well.  All of this is good news.

The surgical pathology report indicated no evidence of disease so my pathological staging was downgraded to T1N0M0.  Prior to surgery it was staged at Stage 2 simply due to the size of my tumor.

Now for more information about me.  Last week I decided to terminate my adjuvant chemo therapy.  I completed 3 sessions of Oxy and 5Fu (FOLFOX6) and it was so physically devastating to my body that I had to stop.  That combined with the above information and I decided that I really did not need to continue with the chemo.

Each of us must make our own INFORMED decision about OUR cancer treatment regimen.  It is not easy, but then again nothing about cancer is easy.

Jim

I was tested for all of those other genetic markers and the results came back negative, which is a good thing.

My tumor was described as well differentiated, which is a good thing.

The CT scans indicated no evidence of disease anywhere other than my rectum, which is a good thing.

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

Sounds like you're in a good place with peace of mind now.

Tunadog's picture
Tunadog
Posts: 233
Joined: Mar 2017

Cool Best of luck 

May the rest of your journey be uneventful 

airborne72's picture
airborne72
Posts: 276
Joined: Sep 2012

Thanks guys.  Cancer is comparable to a colloquial saying..."it is not an easy row to hoe."  This has been a tough decision for me, but surprisingly I have no regrets.  In fact, every time my mind wanders back to "it" I use that moment to remind myself to LIVE in the moment - to be happy and thankful for where I am.  That thought association is responsible for my mood elevating and my outlook to be more positive.

Right now I am concentrating on physically recovering from the chemo.  I am almost 15 pounds below my normal weight.  This ileostomy is preventing me from enjoying an inclusive diet but it is temporary and that is another thing that I have learned about CRC - it is a protracted fight, measured in months and years.

My goal is to once again enjoy the warm sunshine while tending to my garden; to feel the tug of a fish on my line; to hold my granddaughter and share all that I know with her so she doesn't have to make the same mistakes that i have made in life; to smell fresh cut hay; to float in the warm waters in the Gulf of Mexico; to plant flowers and watch them bloom; to be a good neighbor and a good citizen; and to never forget that there is someone carrying a burden greater than mine.  I have time remaining to do all of that plus so much more.

Jim

 

Worriedchild
Posts: 56
Joined: Dec 2017

how are you doing? Iam confused was your tumor in colon or rectum?

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