The Colon Club

Hi all

Happy to find you and need some support.

I was diagnosed with 3C (4 lymph nodes of 61) in August, had surgery and completed 4 of 8 Folfox treatments. The 4th one hit me harder than the others, it was more of a week recovery than a few days. I just had a nice long break from treatments due to the holidays and now here it is 2019 and time to face the 2nd half of FolFox.
Wondering quite a few things now that this reality is squarely back in front of me and the shock/denial phase has faded.

1. Is this (meaning treatments 5 to generally going to get worse? Should I plan for a lot more help/relatives to come to our house? I know...."everyone is different and responds differently" ugh! I asking about generally speaking - does this get harder?
2. I been falsely lumping myself in with other Stage 3 patients and pretending that my cure rate is more in the 70's but it's really only 53%, isn't it? How do I deal with that?
3. My ONC and I last agreed that 8 treatments of Folfox (rather than 12) would be enough and then we'd switch me to a pill. I can ask more next week but I feel like this is an appropriate plan - any thoughts?

I'm 51, work F/T at a very understanding company and have kids. I have to beat this.

Hoping to hear back from those with more wisdom and experience. I'm seeing the therapist from the Oncology Center today as I know i'm feeling defeated and down today.

marshmallowjones wrote:Hi all

Hoping to hear back from those with more wisdom and experience. I'm seeing the therapist from the Oncology Center today as I know i'm feeling defeated and down today.

Hi and welcome, sorry for the reason you are here.

For what it's worth, I'm coming up on 15 yrs as a stage IIIC survivor. Know there are many of us out there. So do not give up the hope. It's the end of the holidays, your gearing up for more chemo, you have a right to feel down.

For me, yes chemo side effects was accumulative. Please understand, FOLFOX was an experimental drug when I got it, and it was a game changer for a lot of folks. When I was diagnosed, I had about a 30% chance of being alive in 5 years, believe me a lot of advancement have been made since then. FOLFOX is one the drugs that has put many people into NEDville. Please avoid Dr. Google, it tends to be out of date and sometimes wrong. I believe your chances of beating this cancer today is probably closer to 70%.

Some things that helped me while on chemo. I always got a breakfast (BurgerKing) egg and cheese sandwich on way to chemo. I found keeping food in my stomach kept nausea on bay. Thus I ate many small meals vs 3 meals through out the day. And junk food is better than an empty stomach. Thus don't worry about eating healthy while on chemo. FOLFOX tend to mess with your taste buds, butt they will come back. And ginger is always good for nausea. Ginger snap cookies, ginger ale or ginger root.

Sometimes, some people have found exercise to be helpful when doing chemo. Something light like just plain walking can really help you recover faster. When you are finished with chemo all together, you really want to find a form of exercise you enjoy and stick with it. Research has shown exercise can reduce the chance of a recurrence by up to 50%. Me I power walk 4-5 time a week. Exercise can also help in making you just feel better emotionally.

Yes, they are finding out 8 cycles of FOLFOX is good. 12 cycles (which I had) tends to promote bigger side effects). And I've got em. Butt don't assume your next cycle is going to be worst than your last. Take each one at a time. One time, I got very sick, ie throwing up, never happened again. Another time, I swear I did not get the full dose, as I had a lot of energy when I should have been wiped out. Butt do notice when you see issues becoming a problem and do talk to your Onc about any issues or concerns.

Please know, we know what you are going through. You are never along here. Please feel free to vent anytime you need. Also know there is a wealth of information here.

Again welcome,

Lee

Sorry you find yourself here but it’s a great place for information and support. As a caregiver of my mom who has rectal cancer, all we know now is from scans because she has yet to have surgery. From those scans she has been staged T3N2 but no scans indicate whether it is N2a or N2b. That would either put her as a Stage3b or Stage3c. I do sometimes struggle with the “stats” (72% vs 58%) depending on which category she falls into, but I try to remember that 1. These stats are at least 5 years old and things are improving everyday in the world of cancer treatments so chances are the real numbers are higher. 2. We are doing everything possible to be an advocate for her which means researching and getting second opinions when necessary. 3. No one is a statistic. Stage 3 is curable and beatable!

So far my mom has done 5 rounds of Folfox and has experienced only minimal tingling side effects. They warn us things can be cumulative over time but we try to take it day by day.

Hi MJ,

You are at the halfway point and feeling down. I went through the same thing at around the same time in my post surgery chemo. My oncologist friend, says many people hit the wall and get down. He believes for many it is the steroids causing havoc with our emotions combined with the realization of having this crappy disease, and the chemo wearing us down.

His advice was expect to do less and not let that fact get you down. It is not permanent. I am a teacher and was struggling to work 1/2 time by the end of chemo. I am now back full time and feeling mostly back to normal and for sure a heck of a lot better than this time last year.

As far as stats go, we are not stats. This coming from a math teacher! Every case is an individual with different circumstances. The current stats are at least 5 years old and much has changed in that time. Stage 4, according to current stats, has a 5 year survival rate of 13% and yet there are many of us around and kicking!

Stay strong, it gets better!

Dave

I actually don't know how to respond to each of you - I've never been a forum before.

Thank each and everyone of you for your responses - lifted my spirits today.
Agree, I'm probably higher than 53% because that's a huge pool of ppl, possibly older than me and with other conditions.

Keep positive and remember that you can do this, I finished chemo 10 months ago and had a clean checkup with bloodwork today.

All I can tell you: forget the statistics. Statistics apply for large numbers. You are ONE human being,
If you read carefully the available (good) information, you will see that nobody has a clue how a person's disease will behave.

When you start your treatments, nobody has a clue on how the disease will react. So, they do a scan after 3 or 4 sessions;
to have an idea what is going on. Next scan: after ending your chemo, to re-stage the disease.
After the re-staging there will be a new treatment plan; which can vary from watchful observation to whatever is needed.
And your doctor will watch you like a hawk (hopefully). [ I spent almost six years with a follow-up visit every three weeks and a PET/CAT scan every two
or two and a half months. Now, my visits are every 6 weeks, and CAT scans every 3 months] The labwork? don't even want to mention them.

Why all this mess? Because the Dr knows how my organism behaved in the past - but he also knows the the past behaviour does not guarantee future
reactions or future events.
What I am trying to say: do not apply statistics to yourself. Wait and see how your body will behave.
All the best,

E

Hi recently diagnosed

I recently finished my treatments at number 11 - it really was cumulative (the drs constantly reminding us) but for me it wasn’t all terrible. I have nerve damage and neuropathy in my hands and feet but it’s slowly getting better - I’m walking on the treadmill everyday now and I can feel a big improvement every week.

I told and continue to tell myself how lucky I am to have the chance at beating this- -It’s not that long ago that we didn’t see much of a future with colon cancer. I also look at others in my family we lost to cancer and to my 5 yr old granddaughter who just came off treatment for the first time since she was 2 yrs old - I realize how lucky I am and that gets me through 95 % of the time, the other 5% I wallow, obsess, and read everything on the internet. .... we’re only human:)

I hope I don’t come off as insensitive, I really do get it. I have read to many gov. studies to count over this past year, wanting to glean a little more solid grasp on my exact odds. I’m getting better a tiny bit better at accepting there is no solid answers, it’s unknowable.

My biggest reassurance is every time I go for treatment I try to sit next to a new person during chemo and talk to them about their journey. I’m amazed at how many of them are there for the 2nd, 3rd or even 5th time round - they just keep rolling with it. we talk about it being like diabetes, something you live with and manage with chemo/treatment.

I also found great comfort on this forum, just read everyone’s signature and you get a sense of how the stats really don’t apply!

marshmallowjones wrote:2. I been falsely lumping myself in with other Stage 3 patients and pretending that my cure rate is more in the 70's but it's really only 53%, isn't it? How do I deal with that?

What others have said about stats is true but here's something I learned that really helped me wrap my head around the statistics: those stats don't actually tell you how many of those people died from the cancer. Seriously. All they tell you is that X number of people were alive on day 1 and X number of people were alive at the end of 5 years. That's it. They don't tell you the general health of the patients on day 1, they don't tell you anything about lifestyle choices, they don't tell you what kind of support system was available, they don't tell you what treatments they chose (or refused), they don't tell you anything about genetic mutations, they don't tell you anything about the immune system of other patients, they don't tell you how the patients died ... they don't tell you a lot. So let's say there's a Stage 3 patient who has a serious, potentially life-threatening and pre-existing medical condition on day 1, then they find out they have cancer, they have no support system (and no understanding employer) in place or maybe they refuse treatment or maybe they die from a heart attack or in a car accident. If you're depending on the stats to give you a reliable read of your future, then you're also saying that your chances of hitting the 5 year mark are exactly the same as that person. I'm not saying that the stats don't serve a purpose, that we don't learn something from them; I'm just saying that it's not the whole picture. When people tell you that you're not a statistic, please believe them.

Hope this helps. We're here for you.

e_enyedy wrote:All I can tell you: forget the statistics. Statistics apply for large numbers. You are ONE human being,
If you read carefully the available (good) information, you will see that nobody has a clue how a person's disease will behave.

When you start your treatments, nobody has a clue on how the disease will react. So, they do a scan after 3 or 4 sessions;
to have an idea what is going on. Next scan: after ending your chemo, to re-stage the disease.
After the re-staging there will be a new treatment plan; which can vary from watchful observation to whatever is needed.
And your doctor will watch you like a hawk (hopefully). [ I spent almost six years with a follow-up visit every three weeks and a PET/CAT scan every two
or two and a half months. Now, my visits are every 6 weeks, and CAT scans every 3 months] The labwork? don't even want to mention them.

Why all this mess? Because the Dr knows how my organism behaved in the past - but he also knows the the past behaviour does not guarantee future
reactions or future events.
What I am trying to say: do not apply statistics to yourself. Wait and see how your body will behave.
All the best,

E

Thanks for the info! My ONC is saying that we don't look/scan until 1 year which I'll ask about. I agree...I think I should stick with something closer to 70% it puts me, my family and friends at ease. I just don't want to kid myself or belittle the situation

Nordy1 wrote:Hi recently diagnosed

I recently finished my treatments at number 11 - it really was cumulative (the drs constantly reminding us) but for me it wasn’t all terrible. I have nerve damage and neuropathy in my hands and feet but it’s slowly getting better - I’m walking on the treadmill everyday now and I can feel a big improvement every week.

I told and continue to tell myself how lucky I am to have the chance at beating this- -It’s not that long ago that we didn’t see much of a future with colon cancer. I also look at others in my family we lost to cancer and to my 5 yr old granddaughter who just came off treatment for the first time since she was 2 yrs old - I realize how lucky I am and that gets me through 95 % of the time, the other 5% I wallow, obsess, and read everything on the internet. .... we’re only human:)

I hope I don’t come off as insensitive, I really do get it. I have read to many gov. studies to count over this past year, wanting to glean a little more solid grasp on my exact odds. I’m getting better a tiny bit better at accepting there is no solid answers, it’s unknowable.

My biggest reassurance is every time I go for treatment I try to sit next to a new person during chemo and talk to them about their journey. I’m amazed at how many of them are there for the 2nd, 3rd or even 5th time round - they just keep rolling with it. we talk about it being like diabetes, something you live with and manage with chemo/treatment.

I also found great comfort on this forum, just read everyone’s signature and you get a sense of how the stats really don’t apply!

Thanks for your reply - I'm an analyst/accountant so I have to become more 'flexible' in my expectations. I had a nice talk with the ONC therapist who recommended this and also a family meeting to go over responsibilities. I agreed with her ideas.

zephyr wrote:

marshmallowjones wrote:2. I been falsely lumping myself in with other Stage 3 patients and pretending that my cure rate is more in the 70's but it's really only 53%, isn't it? How do I deal with that?

What others have said about stats is true but here's something I learned that really helped me wrap my head around the statistics: those stats don't actually tell you how many of those people died from the cancer. Seriously. All they tell you is that X number of people were alive on day 1 and X number of people were alive at the end of 5 years. That's it. They don't tell you the general health of the patients on day 1, they don't tell you anything about lifestyle choices, they don't tell you what kind of support system was available, they don't tell you what treatments they chose (or refused), they don't tell you anything about genetic mutations, they don't tell you anything about the immune system of other patients, they don't tell you how the patients died ... they don't tell you a lot. So let's say there's a Stage 3 patient who has a serious, potentially life-threatening and pre-existing medical condition on day 1, then they find out they have cancer, they have no support system (and no understanding employer) in place or maybe they refuse treatment or maybe they die from a heart attack or in a car accident. If you're depending on the stats to give you a reliable read of your future, then you're also saying that your chances of hitting the 5 year mark are exactly the same as that person. I'm not saying that the stats don't serve a purpose, that we don't learn something from them; I'm just saying that it's not the whole picture. When people tell you that you're not a statistic, please believe them.

Hope this helps. We're here for you.

thanks for helping me get this into perspective - I'll stay off Dr Google and come to this forum more

Hi Marshmallowjones,
Welcome aboard. I was dxed with stage 3c colon cancer into 6 of 13 nodes when I was 48. It was very aggressive and my surgeon told me not to expect more than three years. I told him don't worry I don't die of cancer. I have no idea what will get me but it won't be cancer. I had 48 sessions of a very old chemo regime which is no longer used because of sometimes fatal side effects. On the 22nd of this month I reach 21 years ,still cancer free. Wishing you good health and a cancer free future. Ron.

Congratulations on four down, MJ! Way to go!

I would equate FOLFOX doses 4 - 8 like a series of blind dates: each one a little different, some good qualities, some bad. Don’t be surprised if some side effects show up for one cycle and disappear for another. There is a cumulative effect for tiredness and some of the bloodwork numbers continue to take a hit. Accept the help knowing it’s going to get you on your feet faster once #8 is in the history books.

You’re doing everything you can to beat this. Control what you control, let the rest go. So, so hard to let go and not over-analyze what’s on the internet. I am guilty of it myself — it just robs the present of happiness.

You got this!

Marchmellojones,
You wrote:

My ONC is saying that we don't look/scan until 1 year which I'll ask about.

Yes ! Do ask about that because it doesn’t sound ‘normal’. My DH has had scans evey 3 month, then every 4 and then 5. Now is the first time it has gone 6 month. My husband was diagonosed in March 2016.
All the best to you!