The Colon Club

I am so glad I found this group. We've had so much thrown at us in a short amount of time. I'm hoping we can find a lot of answers or suggestions here.

My fiancé, Tim, was diagnosed August 17, 2016 with colon cancer after a colonoscopy. Had surgery on September 7, 2016. Went back 2 weeks later and was told it was Stage 3 B.
He is 50 years old and has always been healthy. All of this is being done at the V.A. hospital in Tampa. The oncologist we met with yesterday told us about the chemo and the process. We thought it would be an IV infusion every other week. Found out they do chemo on Tuesday. He'll have a port that they will put additional medication into and then have to go back on Thursday to have it removed. This will be done every other week. He told us about the side effects. We knew about the common ones but the hand pain and tingling is scary. The doctor also told him no working for 6 months.

Tim said forget it. He's not doing it. Doctor said 5 year survival rate without chemo is 60-70%. With chemo, 79%. Is it worth it? I would think those numbers are skewed. Don't they use a lot of 70-80 year olds? Is there a study with people just 35-55? His opinion is that since he had an aunt die from brain cancer after doing all the treatments, he wants to enjoy life. I believe after thinking about it overnight, he has changed his mind. I want him with me for a long time.

Can anyone advise on these medications? They are the names the doctor gave us. Adrucil and Eloxatin.

Thank you in advance for all your information. Andrea

So sorry you guys are having to deal with this.

The chemo combination is commonly known as Folfox - 5FU and Oxaliplatin. It's the Oxaliplatin that causes neuropathy. The dosage can always be adjusted if the side effects become too much. The 5FU is less toxic if it is given over a longer period of time - 48 hours rather than a "bolus" in the IV. Other drugs are added to the IV infusion to also reduce side effects.

You can ask the doc about the option of using Xeloda, which is the pill form of 5FU - so no pump, but pills every day plus the once every two weeks IV of Oxaliplatin.

I haven't had IV chemo yet, so I can't go into any more detail, but many other people on this forum can help you out more than I can. I did take Xeloda, and for me, I would rather try the pump. But most people prefer the pills.

As far as statistics, I started out as 2B with no chemo and am now Stage 4.

There are choices, side effects, unknowns and there are treatment experiences outside standard. Some of the stage 2's and 3's have been critical about the oxaliplatin side effects.

Oral Xeloda by itself is a possible standard tx choice with different and likely less long terms side effects, with perhaps only slightly more risk (2% OS??)

If I were starting today, I would make sure my blood work included panels like LDH (it can be a liver panel in your chemistry), at least one CA19-9 (this concerns risk of having a metastasic phenotype and cimetidine), and post surgical inflammation levels (hsESR and CRP). If you look at my posts, you'll see we do a lot more testing than this.

Other slightly non-standard choices concern adding cimetidine and/or celecoxib to daily Xeloda, see the archives here. The search function here can be a big help. In a substantial fraction of stage 2 and 3 cases, one might infer the possibility of superior outcomes with some kinds of blood or tissue markers that target cimetidine and perhaps other adjuncts from the literature.

Finally, chemo side effects can often be reduced through supplement programs offered by integrative MDs and NDs. In our case, the particular supplements also appear to increase the activity and success of the milder oral chemo we buy.

I was 31 at dx and told 5 year survival rates for stage 3 without chemo is only 50%.
Unacceptable.
Chemo is a MUST do for stage 3.
Side effects vary dramatically from person to person. I took xeloda but managed only 1 round of oxi. Still here today it seems.

Best wishes.

It's hard to answer this question, as everyone experiences different side effects. I went through the pump, folfox, radiation, and 2 surgery's and worked throughout the process. I did take a 9 week leave during the 2 surgery's. The chemo is needed in my opinion, as now it has been almost 5 years, I have survived that endeavor.
Michael

Sorry you had to find us, but welcome. Ultimately it is your fiancé s decision. While the chemo is undoubtedly no walk in the park, I would encourage him to consider it. My DH was originally against it but is doing well today, as are many others here, because of it. Keep us posted and hang in there.

Sorry you have had to find us, but glad you did.

Definitely give the best fighting chance you can, which means to me, throwing everything we can at this disease. I have done 14 rounds of Folfox (5-fu and Oxaliplatin) and am going on my 4th round of Folfiri (5-fu and irinotecan)

Yes there are side effects, and some stink but it is worth it to me to have a chance. Granted I am stage IV, so I look at it as a matter of survival.

Ultimately the choice is up to your fiance, but personally I would definitely go with a heavier treatment.

I will add you both to my prayer list.

TitanGal65 wrote:
My fiancé, Tim, was diagnosed August 17, 2016 with colon cancer after a colonoscopy. Had surgery on September 7, 2016. Went back 2 weeks later and was told it was Stage 3 B.

He is 50 years old and has always been healthy. All of this is being done at the V.A. hospital in Tampa. The oncologist we met with yesterday told us about the chemo and the process. We thought it would be an IV infusion every other week. Found out they do chemo on Tuesday. He'll have a port that they will put additional medication into and then have to go back on Thursday to have it removed. This will be done every other week. He told us about the side effects. We knew about the common ones but the hand pain and tingling is scary. The doctor also told him no working for 6 months.

Tim said forget it. He's not doing it. Doctor said 5 year survival rate without chemo is 60-70%. With chemo, 79%. Is it worth it? I would think those numbers are skewed. Don't they use a lot of 70-80 year olds? Is there a study with people just 35-55? His opinion is that since he had an aunt die from brain cancer after doing all the treatments, he wants to enjoy life. I believe after thinking about it overnight, he has changed his mind. I want him with me for a long time.

Can anyone advise on these medications? They are the names the doctor gave us. Adrucil and Eloxatin.

Thank you in advance for all your information. Andrea

There are a few invisible issues that are in the works for both of you. You and Tim are not married and while you want him with you for a long time,
and he has always been a robust bloke, he could be concerned about you becoming his caregiver, not his wife. He could be concerned that the
effects of chemo may alter (irrevocably) the way in which he can be a man to you, and be your man.

A very good friend of mine, had a husband who received a diagnosis of colon cancer and it deeply impacted on his sense of masculinity and
how he saw himself as a man, husband, lover and felt about the mutilations to his body. An issue which most people think is mostly
a woman's concern.

The aunt who died from brain cancer (which are usually incurable) bargained for more time. And had her tumour perhaps been a metastasis
from a breast cancer.......the odds were against the aunt. They are more favourable - heaps more favourable - for your Tim.

Folfox is super rough. I finished a full course a couple of months ago. But when you have finished you forget. Do the chemo for an extra 10% chance of a cure. Then you won't regret it. Do everything you can, many people survive.

Do the chemo..my personal opinion.

50 years old..be aggressive, do the chemo.

Chemo is a scary thing, mostly not knowing how the side effects will affect you, but, I would say to at least try it and see first.

I was scared of chemo too. My thinking was if I did NOT do it and the monster ended up coming back could I live with the regret of not doing everything I could to prevent it? Chemo is not a guarantee but I wanted to maximize my chances of success. 50 is not old and he could have a lot of life ahead of him. I did Xeloda and Oxi and I was able to keep working during it (took days off for infusions and worked from home two days after). I did that five years ago and have no regrets.

First, any doctor that says "absolutely not work" should not be practicing, that's ludicrous. There are many people that work through chemo. It's no cakewalk, but side effects differ greatly between people and you never know how it's going to effect you. Also, it's frustrating that doctors continue to not mention Xeloda (pill) in place of the 5-FU (pump) - either option goes with the Oxi (which is the shitty part). But one option might be better for him. Personally, the idea of the pills worked better for me as did the 3 week schedule of infusions. It allowed me to work mostly full time (taking a few days off here and there after infusion days). He needs to have an Oncologist that provides options, not flat statements.

As far as stats, don't bother. They just take a bunch of people and track them, some get full treatment, some get partial, some have many other ailments. I personally wanted to do everything I could, and that means chemo.

It's a hard time and I think you're in a difficult spot - you have no idea what he's going through all you can do is be supportive, that may mean cry with him, be angry with him, do whatever you need. Don't hide your feelings. Don't be the "rock", be yourself. And personally, if someone ever referred to themselves as my caregiver, they'd be in a pine box. I can care for myself. I drove to and from every chemo infusion myself.

Hope that all didn't sound harsh. I am thinking positive thoughts for you & your fiance.

--Kelly

the 1st couple of rounds were rough-then seemed to develop a tolerance . I did chemo Thursday so no work -some days I could work Friday , some not,
Ask them if they can teach you the disconnect procedure, its not really complicated just a little creepy (I am RN as is wife) but it saved us a trip back to the hospital -we just brought the used chemo ball back with us for the next infusion--Ask them-its one less place to run around to
mike