Need help making chemo decision - Stage 2A

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 said:

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.

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

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

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

Good luck,

Stacy

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

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

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

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

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.