CSN Login
Members Online: 8

You are here

Need help making chemo decision - Stage 2A

Mickey03
Posts: 5
Joined: Dec 2006

Reposting this: somehow got buried as response to my first thread...

Husband is now home recovering from Dec 14th surgery - which went pretty well. Saw the oncologist today for the first time and got the official word - Stage 2A, N0/T3/M0.

She is recommending chemo but left decision up to us. Says it's a fairly new protocol for 2A (only last 5 years) and could give us no more than *maybe* a 5% boost in survival rate and couldn't guarantee that. I know she's being conservative and wants to try everything possible but seems like 6 months of misery with no real evidence of benefit is a lot to ask.

I'm wondering if anyone has some info/websites/trial info for us. Husband has no idea what to do and we'd like to get more info. Doctor is great - no worries there - just she is pushing chemo and we'd like to see if there are competing opinions.

Sunriver's picture
Sunriver
Posts: 50
Joined: Sep 2006

Hi,

I went down this road also. I was stage 2a also and was given chemo as an option. I decided to go ahead with chemo although I only made it 4 rounds instead of the 12 I planned on. My opinion is that chemo is a good idea as long as your body tolerates it well. When cancer comes back it is often more aggressive than the first time so anything that can help prevent a recurrence is good. At stage 2a you want to pull the plug early if you start developing serious side effects as that is what I did with my onc's full support. As others here said on this forum - whatever decision you make will be right for you. All the best...Mark

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

I was Dx in July 06 with Stage IIa NO/MO/T3 colon cancer. Had emergency surgery on 10 July. My Onc Doc indicated that the FLOFOX regime of chemotherapy was not the protocol for Stage II. The treatment consists of 5FU, Oxaliplatin & Leucovorin drugs given every other week over 6 months.

My Onc Doc stated that my chemo treatment would be performed for insurance purposes to make sure there were no microscope cancer cells left behind. So on 18 Aug I started the treatments and finished on 3 Nov 06. I completed 6 out of 12 due to side effects.

You and your husband should speak with your Onc Doc in details and discuss the Mosaic Study, which is what this treatment protocol is from. Also, speak with family members, religious family, etc.

The final decision is your husbands and once a decision is made it will feel right. Keep in mind, if he decides to not opt for chemo he can always start treatments later down the road.

Please keep us here informed.

American Cancer Society Webpage on colon cancer: http://www.cancer.org/docroot/lrn/lrn_0.asp

Mickey03
Posts: 5
Joined: Dec 2006

Thanks for the tip on Mosaic. Realized after I posted that I was not sure of the exact protocol. I know for sure she mentioned Xeloda and I'm pretty sure the Oxaliplatin. Not sure about the whole FLOFOX thing but will put in call today.

Just to be clear, if he starts and has unmanageable side affects, he can stop, right?

Also, does anyone here have "latest" survival rates? I realize this is not perfect science, but I've seen them swing from 85% to 60-70%. Understand that older studies might have lower numbers...

Can anyone provide some idea of side affects? How bad did it get that you both dropped out?

Have to add that this is a wonderful forum.

Sunriver's picture
Sunriver
Posts: 50
Joined: Sep 2006

Hi,

Yes, you can stop chemo at any time based on side effects. I was doing well until my fourth infusion. At that point I developed CDEF - an intestinal infection that progressed to the point that I had to be hospitalized. Once the cdef was under control my gi tract stopped working. After 9 days in the hospital things started working again and I was able to go home. I don't think my life was in danger but it was clear to me and my onc that my body was not going to tolerate more chemo unless the dose was greatly reduced. We decided at that point to stop chemo and shift to ongoing monitoring through blood work and CT scans. I hope this helps...Mark

Anonymous user (not verified)

This comment has been removed by the Moderator

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

I think it is really great that you are taking the time to find information to make a very informed decision. In doing this, no matter the decision you and hubby make, it will be the right one.

Before surgery, I was told that I would not be offered chemo if there was no lymph node involvement. I had one node involved so I pursued chemo, the Folfox treatment.

If I were to put myself in your shoes, I would consider these things. Is a 5% (MAYBE) increase worth all of the side effects presented during chemo? Typically, my answer would be yes; however, 5% is a matter of perspective. 5% could mean bringing a failing grade up to a passing grade. On the other hand, are there other things you could be doing to maybe meet and exceed the 5% without enduring the side effects? Diet, excercize, lifestyle changes. According to Dr. Patrick Quillin, author of "Beating Cancer With Nutrition," cancer is a symptom of a bigger underlying problem and the cure is to eliminate the underlying problem through better nutrition, diet, excercize, and lifestyle changes.

My side effects during treatment were pretty minimal compared to what they could have been like. I completed 12 of 12 treatment without delay. It was still no walk in the park, though. And, I am young and healthy and quick to heal.

I do believe that chemo has it's place. I believe that all things must be considered and cost / benefits analysis must be done to determine whether chemo is worth the risk.

It scares me to death because when I underwent chemo, I did not know a single thing about LONG TERM side effects and this is worse than any side effect for the duration of chemo.

I'm talking about permanent brain cell damage, also referred to as "chemo brain". This is a very real condition. I have lost forever the ability to retain information that was previously very simple. I forget things. If I am asked a question in a stressed situation, there are times I'm not sure I can remember my own name.

I am talking about poisioning our bodies and making them susceptible to other illness and infections.... even other forms of cancer.

I am talking about permanent changes that happen to our bodies from chemo. Some young women being forced into menopause well before their time. Chances of reproduction being decreased by as much as 40%.

And so on...

Is a possible 5% increase in survival worth the many short and long term effects of chemo? Is it worth researching alternative treatments as easy as changing diet and excercize the answer? I really feel you must explore both the short and long term effects of chemo and learning what cancer is and what nutrition does in order to answer these questions.

Best of luck to you in making this decision. As I said, you are well on your way to making the right decision, no matter what that decision is.

Bless you for being such a great advocate for your husband. You are the true angel!

Patricia

themis01
Posts: 168
Joined: Feb 2005

My mom had stage 1 with no chemo and it came back in 6 months and she died one year later. I definitely wish she would have had the chemo option and maybe stopped it before it spread so fast. Not to scare you just to let you know a real story.

StacyGleaso's picture
StacyGleaso
Posts: 1250
Joined: Mar 2003

You will definitely get a lot of opinions. But the ultimate choice must be that of your husband.

Good luck,

Stacy

HowardJ
Posts: 484
Joined: Jan 2005

Hi,

I was diagnosed with stage 2a colon cancer two years ago and opted not to do the chemo. The decision was difficult, and everyone needs to make their own personal decision based on individual comfort level. I would say do what you are doing...get as much information as you can to base the decision on.

Here are some very good web sites, and also see the ASC cancer information links--

NCI:
http://www.cancer.gov/cancertopics/types/colon-and-rectal

ACSO recommendations for chemo for stage II:
http://www.asco.org/portal/site/ASCO/menuitem.c543a013502b2a89de912310320041a0/?vgnextoid=a4a48c393c458010VgnVCM100000ed730ad1RCRD&vgnextfmt=default

ASCO People Living with Cancer:
http://www.plwc.org/portal/site/PLWC/menuitem.6067beb2271039bcfd748f68ee37a01d/?vgnextoid=d0e6ea7105daa010VgnVCM100000ed730ad1RCRD&vgnextfmt=cancer

Good luck to both you and your husband!

Howard

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

In that a Stage II diagnosis indicates that there was no lymph node involvement I would certainly NOT do chemo, particularly Oxaliplatin. I am a Stage IV survivor. When I was diagnosed they told me I was Stage III and I had somthing like 4 lymph nodes involved. This was before Oxy and I did 6 months of 5-FU and Leukovorin alone. After completing chemo they discovered that I was not Stage III, but actually Stage IV and I was scheduled for surgery to remove a tumor from my liver which had been there all along but did not show up on the scans till after the chemo. I guess I do not have to tell you my life story, but you can look at my webpage if you want to. I followed this second surgery with FOLFIRI which includes Irinotecan, not Oxy.
See, the problem is not only the toxicity that others have mentioned already, but once you have taken these drugs as far as I know, you cannot use them again. For example, if someone took Oxy as Stage II, but then later did have a recurrence, they would not be given Oxy again as the tumor would have developed a resistance to it. Do you see what I am saying?
At least this is my understanding of it.
So, if I were you I would not do chemo for all of these reasons.
If, God forbid you needed it in the future, you would no longer have that option. I am not a strong believer in chemo and certainly do not think it should be used unless absolutely necessary in inoperable cases.
JMO,
Susan

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Well, apparently I was wrong about what I said before concerning tumors building a resistance to certain chemo combinations (see Jana's post, CEA Down). However, I would still not opt for chemo for a Stage II patient. Like I said, I think it should only be used when necessary and the odds are in your husbands favor without chemo.
Good luck to you,
Susan

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Susan,

I thought the same thing about exhausting your chemo choice. But I am on the same protocol that I was on when first diagnosed and it is working! I think if you wait a while and perhaps change or tweak the combos a bit, you can repeat a regimen.

Kerry

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Mickey:

I am a fellow 2B who had surgery and 6 months of FOLFOX. My body tolerated it fairly well. I still have some lingering goofiness issues, but I think it might just be my real personality :-)

The chemo, no-chemo topic is the single most emtionally-charged subjects on the board. At the end of the day, it's the sole decision of your and your husband. You are doing the smart thing by getting a lot of information on the subject from survivors. You have to be personnaly comfortable with the path you choose, neither path is risk free and both involve effort. Having said that, it's never this or that - even as you make one choice initially, there's always the need and room to adjust as you go through it and discover new things.

Good luck to you and your husband. He's incredibly blessed to have you as such a thoughtful and resourceful advocate!

Ying

CAMaura
Posts: 719
Joined: Feb 2005

HI There, This is a tough decision and your husband will need to feel confident that he is choosing the right course - although anything and everything is flexible and he is in control to make changes as he sees fit.
Would he feel comfortable having another opinion? He might appreciate another medical opinion.Also, whether he chooses chemo or not, would he feel comfortable undertaking a strong nutritional program? I think one way or another (or with both involved), he should feel part of the process or staying cancer-free.
As far as stats, I try not to read them; it truly isn't that I want to stay int he dark or in denial of the seriousness of our cancer. It is just that I prefer to emphasize options for how I can impact myself postively. Every time I read that colon cancer is the number two killer, I shutter and then I think that I need to keep working for my own health! Along with the survival stats printed from chemo-related studies, there are also stats and numerous studies about nutritional intervention and the role that exercise plays in our survival rate. I am not discounting chemo, but both of these things boost the immune system to such an extent that they are finally making headway (in nationally recognized journals) in terms of survival rates. So, I concentrate mainly on the stats relating to these approaches.
Side effects from chemo run the gamut; chemo is no picnic, but some people have made it through without many hitches. My body gave out at 9 of twelve sessions and then I started the natural approach.
While he is healing and gaining his footing and strength, you might want to get your hands on the book: Beating Cancer with Nutrition, by Patrick Quillin. It does a great job of respecting the Western (chemo) approach while giving you a better understanding of how our body can also be affected postivitely by healthy changes. I am not trying to muddy the waters for you or him - just trying to let you know that this can be a whole body approach. Whatever he chooses, I hope he feels as if he is in control (or ready to take control) of his body and how he will work to beat this thing!!
All the best to both of you. Your husband is incredibly lucky to be stage II and to have you by his side!!!
Take care - Maura

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

Hi -

You have received some good advice.

I was Stage IV with liver met so not going with chemo (at least to start with) was not really an option. I am doing great now. The Stage II question is much more problematic. One option you might consider is to do a few cycles of chemo and then stop when the side effects start bugging him. And I think the tradeoffs related to the "badness" of side effects are directly related to the disease stage. Being Stage II I think your husband can stop chemo and relax about it as soon as it gets to him (and by the way, it may never "get" to him in a really big way).

I wish you the best with your decision.

Take care,
Betsy

staceyp's picture
staceyp
Posts: 26
Joined: Jan 2006

Hi,

My husband was diagnosed in '04 with CC. He had a resection and they found no lymph involvement. He asked about chemo and all the docs said it wasn't necessary. That was the protocal for Stage I. Well, 1 1/2 years later, they found 3 tumors on his liver. They don't know if it was there all along, just too small to detect or if it is a recurrance. We regret that he was not given the option to have chemo the first time. We will forever question, What if .....? Would chemo have prevented the recurrance? We will never know.

This time he was given the option. He completed 12 treatments. He did have to stop the Oxaliplatin 1/2 way through, but nothing else. It was hard on him and our family (our kids are 6 and 9). If we had known then what we know now, we would have insisted on Chemo the first time.

I hope this helps. Best of luck.

Stacey

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Mickey,

I agree with Stacy - this is a decision between you, your husband and doctor. You will get many opinions here and a few "horror" stories mixed in because someone had a bad experience. It doesn't mean your husband will have a bad experience - everyone reacts to chemo differently. I have had a variety of reactions to different chemo "cocktails", but I thank goodness for having them available to me.

Best of luck.

Kerry

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

I would hate to be in your shoes right now, but I do agree with StaceyP, I always try to avoid the possibility of the 'what ifs'. I have heard marvelous, miraculous stories and also horror stories of people who have denied chemo. At the end of the day, none of us knows what the future holds. I have a one-year-old baby, so I am fighting this fight with any and every weapon I can get my hands on. I am just giving a personal opinion. I wish you and your husband the best of luck. My prayers will be with you. Monica

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

Bottom line it's your decision, your consequences..trials are usually experimental, and most measure maximum amount of a given drug can be tolerated. Contact M.D.
Anderson or City of Hope for their trials- Certain uses of chemo disqualify you for trial..

a major center should have more options for you.

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

Bottom line it's your decision, your consequences..trials are usually experimental, and most measure maximum amount of a given drug can be tolerated. Contact M.D.
Anderson or City of Hope for their trials- Certain uses of chemo disqualify you for trial..

a major center should have more options for you.

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Mickey:

I just remembered this great presentation by Dr. Alan Venook from the Comprehensive Cancer of UCSF. He's head of the colon cancer group at UCSF and a leading authority on the subject. This presentaiton is on the very subject of chemo for stage II and III patients. It has all the detailed info on the subject. It's not easy reading, but it is exceedingly well organized. Dr. Venook helped me to make my decision to take chemo, but opt out of radiation.

Give this a read if you really want to know all the detail. The link is http://www.rheumatology.medscape.com/viewarticle/501381_1. You may have to register at the site to get to it, but it is available for free.

Best of luck to you!
Ying

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hi Mickey. I was dx'd stage 2, no node involvement, back in aug. 2003. I had surgery then to remove descending/sigmiod colon then did 6 months 5fu/leucovorin. At the time Oxy. was not avail. in oz. I had a "choice" to do or not do chemo but was given the same % figures as your hubbie.Yes, chemo affects us all differently as as others here say...it can be started or stopped depending on circumstances.
I just wanted to tell you that I am NED now and have been for 3 years this coming feb.
I know many on here did the 5fu/leuc. without the oxaliplatin. As oxy has it's own degree of side effects maybe it is worthwhile asking the oncologist if the 5fu/leuc. only would be an option?
All the best for you both.
Ross and Jen

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

hi mickey,

I was Stage 3 lymph pos. I declined the chemo. It just didn't seem worth the agony and the potential problems:

kidney and/or heart damage (permanent)
chance of secondary cancers
chance of leukemia
peripheral neuropathy
to name a few.........

But just because I opted out of the chemo does not mean I did nothing. I just chose a different healing path.

At the Mayo Clinic they do not recommend chemo for anything less than Stage 3 so it wouldn't even be an issue if he were there.

Chemo packs a mean punch on the body and for only a 5% boost doesn't seem like a lot compared to the possibility of potential problems. There are other ways of healing from cancer. I am living proof.

peace, emily

Subscribe to Comments for "Need help making chemo decision - Stage 2A"