The Colon Club

Hi all,

First I want to say thank you for being here and sharing the experience of your journeys with everyone. I have been reading a lot of posts/info for the past month and decided to join the fight.
I was formally diagnosed on 3/29 with CRC. I was told on 3/24 after waking from my first full colonoscopy that i most likely had cancer in the lower sigmoid colon attaching to the rectum.
After a followup MRI and CT Scan that showed no signs of cancer in other regions of the body / with exception of some swollen lymphnodes around the tumor, my CR surgeon suggested LAR by laproscopic surgery.
From there pathology would determine if any need for adjuvant therapy was needed. On 4/17 I underwent surgery. I awoke to an oxygen mask on my face while shaking uncontrollably while a nurse told me to continue to try and breath while injecting something that would ease my shaking. Shortly after i was put into my room for the next 4 days where I was greeted by familiar faces of family. I was not in a rush to come home as i felt a sense of security from the continual watching over by nurses, but was told I was progressing quite well and was ready to go home. I'm 11 days out from surgery and feeling overall quite well with some lingering deep pains when moving to quickly or extending to much with leg movement. I am already up to walking about a mile without much pain. I haven't needed any pain meds while at home. Bowel movements aren't really close to normal yet, but at least they are working and I have some control over them. Mostly going more frequently in smaller amounts.

Unfortunately pathology indicated 1 of 28 lymphnodes having slight cancerous materials. It was recommended, given that and the fact that the tumor had made it to the outer wall of the colon that I undergo Folfox treatment to reduce my chance of recurrence. I hemmed and hawed about undergoing chemo and am still quite nervous about it, but seeing posts here and some other internet sites/videos I decided the extra 20-25% chance of non-recurrence was worth the hassles. I'm scheduled to receive a medport on 5/3 and chemo to begin sometime between 5/10 and 5/22. My onc says the tumor was well differentiated which also reduces my overall chance of recurrence as it means the growth rate of the cancer is slower as well as its ability to spread. I'm a very young 44 y/o male. Doctors say the rest of my body is like that of someone in their late 20's. I've been very active in life - climbing mountains, backpacking, hitting the gym religiously from age 25 - 3 times a week. 2 years ago I was playing in basketball leagues with high school and college basketball players as well as baseball too. I have a 17 year old son, whom I've raised solo since he was 1 years of age. I love him very much and want to be around for quite some time for him. I'm also generally very much a lover of life and all it has to offer and want to get back at it with as much vigor as possible. The side effects of chemo really do scare me. I hope to do well with it and make at least 8 of the 12 sessions. Good luck to all and God bless.

I can't offer experience but I can sympathize. I was diagnosed 3/26 with rectal cancer. CT and MRI stage it as 3 with one suspicious node. I had a port installed (no big deal even though they call it a surgery) and finished my second round of FOLFOX this week. Surgery set for late summer. FOLFOX effects everyone differently but my side effects have been minor. You will feel tired and have cold sensitivity and all that (although I find the cold sensitivity more entertaining than harmful so far) but for me it all resolved in 5-6 days. Not a terrible price to halve the half the chances of a systemic recurrence. I'm 40 BTW, with symptoms starting at 39.

Sorry you had to join the Club, but you found a great source of information and experience. You sound as if you are a person who will have no trouble handling FOLFOX. I had several more lymph nodes involved, and I made it through all 12 cycles fairly well, except for the neuropathy and cold sensitivity. The cold sensitivity subsided a few weeks after ending FOLFOX. The neuropathy in my hands is gone, and about 50% still lingers in my feet. However, I can still walk 2-3 miles a day and am taking Vitamin B complex which has been beneficial. Come back as you start your journey, let us know how you're doing and ask any questions you may have. There's always someone here who has had similar experiences. And stay positive !! ..and hydrated. Andre

Basil wrote:I can't offer experience but I can sympathize. I was diagnosed 3/26 with rectal cancer. CT and MRI stage it as 3 with one suspicious node. I had a port installed (no big deal even though they call it a surgery) and finished my second round of FOLFOX this week. Surgery set for late summer. FOLFOX effects everyone differently but my side effects have been minor. You will feel tired and have cold sensitivity and all that (although I find the cold sensitivity more entertaining than harmful so far) but for me it all resolved in 5-6 days. Not a terrible price to halve the half the chances of a systemic recurrence. I'm 40 BTW, with symptoms starting at 39.

Thanks Basil. Keep us posted on your progress with chemo. I know I'm very interested in hearing peoples stories. Seems as though some have pretty much the same experience each session, while some others seem to get a bit more each session.
Hoping the best for you and everyone. How many sessions of chemo are you scheduled for?

ANDRETEXAS wrote:Sorry you had to join the Club, but you found a great source of information and experience. You sound as if you are a person who will have no trouble handling FOLFOX. I had several more lymph nodes involved, and I made it through all 12 cycles fairly well, except for the neuropathy and cold sensitivity. The cold sensitivity subsided a few weeks after ending FOLFOX. The neuropathy in my hands is gone, and about 50% still lingers in my feet. However, I can still walk 2-3 miles a day and am taking Vitamin B complex which has been beneficial. Come back as you start your journey, let us know how you're doing and ask any questions you may have. There's always someone here who has had similar experiences. And stay positive !! ..and hydrated. Andre

Thanks Andre. I hope to do well with chemo. Sounds like you made it through pretty well. Aside from VIT B, did you see the post about some topical cream that seems to drastically reduce the neuropathy symptoms for some?

Welcome and sorry for the reason you're here!*hugs* I hope your chemo goes well!*hugs*

SOC for me is radiation/surgery/FOLFOX. I'm on a trial that skips radiation, has six rounds of FOLFOX, then surgery then 6-8 rounds FOLFOX. Early yet but all going smoothly. It's Saturday night and I feel great.! But four more days to the next round.

Got Med-Port installed today early.

Went pretty easy, got a bit of soreness/discomfort in the neck region but no pain at all at the port.
Was prescribed from tylenol w/codeine. I opted to take one so that I could eat when I came home as swallowing kind of exacerbated the neck pain.
It helped enough to let me eat. Anyone else experience similar? Does it subside pretty fast?


First chemo scheduled is 5/22. Looking forward for 6 months from now already.

Basil - thoughts are with you bro as you're getting treatment #3 today.
Please keep us updated on that.

Hey buddy
I think maybe somewhere on this forum I actually talked about getting "ported" and "de-ported"

OTTOMH I don't recall swallowing issues / sensitivities ????
Had a vascular surgeon do mine under local block. Catheter tip in the vena cava just outside the right atrium of the heart,
so no real neck / throat concerns. Some tenderness at the implant site ( upper right chest area below collar bone ) = advil or Tyl+codeine level of medication.

I do recall some folks having issues if the catheter tip migrates up into the jugular ( side of the neck )

ALWAYS be your own advocate and if you have a concern, get on the blower to your docs and have them address any and EVERY concern you have until you get a response !!!

WORD !!!

best wishes
CRguy on the Journey

benben wrote:Hi all,

First I want to say thank you for being here and sharing the experience of your journeys with everyone. I have been reading a lot of posts/info for the past month and decided to join the fight.
I was formally diagnosed on 3/29 with CRC. I was told on 3/24 after waking from my first full colonoscopy that i most likely had cancer in the lower sigmoid colon attaching to the rectum.
After a followup MRI and CT Scan that showed no signs of cancer in other regions of the body / with exception of some swollen lymphnodes around the tumor, my CR surgeon suggested LAR by laproscopic surgery.
From there pathology would determine if any need for adjuvant therapy was needed. On 4/17 I underwent surgery. I awoke to an oxygen mask on my face while shaking uncontrollably while a nurse told me to continue to try and breath while injecting something that would ease my shaking. Shortly after i was put into my room for the next 4 days where I was greeted by familiar faces of family. I was not in a rush to come home as i felt a sense of security from the continual watching over by nurses, but was told I was progressing quite well and was ready to go home. I'm 11 days out from surgery and feeling overall quite well with some lingering deep pains when moving to quickly or extending to much with leg movement. I am already up to walking about a mile without much pain. I haven't needed any pain meds while at home. Bowel movements aren't really close to normal yet, but at least they are working and I have some control over them. Mostly going more frequently in smaller amounts.

Unfortunately pathology indicated 1 of 28 lymphnodes having slight cancerous materials. It was recommended, given that and the fact that the tumor had made it to the outer wall of the colon that I undergo Folfox treatment to reduce my chance of recurrence. I hemmed and hawed about undergoing chemo and am still quite nervous about it, but seeing posts here and some other internet sites/videos I decided the extra 20-25% chance of non-recurrence was worth the hassles. I'm scheduled to receive a medport on 5/3 and chemo to begin sometime between 5/10 and 5/22. My onc says the tumor was well differentiated which also reduces my overall chance of recurrence as it means the growth rate of the cancer is slower as well as its ability to spread. I'm a very young 44 y/o male. Doctors say the rest of my body is like that of someone in their late 20's. I've been very active in life - climbing mountains, backpacking, hitting the gym religiously from age 25 - 3 times a week. 2 years ago I was playing in basketball leagues with high school and college basketball players as well as baseball too. I have a 17 year old son, whom I've raised solo since he was 1 years of age. I love him very much and want to be around for quite some time for him. I'm also generally very much a lover of life and all it has to offer and want to get back at it with as much vigor as possible. The side effects of chemo really do scare me. I hope to do well with it and make at least 8 of the 12 sessions. Good luck to all and God bless.

Hey Ben Ben. Sorry you are a part of the club nobody wants to join- but you are in the right place here.

Chemo is scary. It's a long 6 months. But give it everything you have got. Drink water obsessively. I couldn't drink cold or room temp water or liquids, so I started drinking tea, hot choc, anything warm.

I finished my chemo in March and my only lasting issues are mild fatigue and numbness in my fingertips. I did not have any reductions in my chemo and made it through with the grace of God, my fabulous chemo nurses, and the help of my son.

Try to stay positive and not think too far ahead. I found a bright spot in my chemo- seeing other chemo patients and drawing strength from the fact I was not alone.

I hope you and your son power through this with the best results possible!

God Bless and keep you and your son!

CRguy wrote:Hey buddy
I think maybe somewhere on this forum I actually talked about getting "ported" and "de-ported"

OTTOMH I don't recall swallowing issues / sensitivities ????
Had a vascular surgeon do mine under local block. Catheter tip in the vena cava just outside the right atrium of the heart,
so no real neck / throat concerns. Some tenderness at the implant site ( upper right chest area below collar bone ) = advil or Tyl+codeine level of medication.

I do recall some folks having issues if the catheter tip migrates up into the jugular ( side of the neck )

ALWAYS be your own advocate and if you have a concern, get on the blower to your docs and have them address any and EVERY concern you have until you get a response !!!

WORD !!!

best wishes
CRguy on the Journey

Thx CRguy. I did a quick search on port discomfort but didn't see much.
Good news is that most discomfort went away by 2nd day. I took 3 tyl+codeine up until I could finally get to sleep the first day and haven't needed any more.

TXLiz wrote:Hey Ben Ben. Sorry you are a part of the club nobody wants to join- but you are in the right place here.

Chemo is scary. It's a long 6 months. But give it everything you have got. Drink water obsessively. I couldn't drink cold or room temp water or liquids, so I started drinking tea, hot choc, anything warm.

I finished my chemo in March and my only lasting issues are mild fatigue and numbness in my fingertips. I did not have any reductions in my chemo and made it through with the grace of God, my fabulous chemo nurses, and the help of my son.

Try to stay positive and not think too far ahead. I found a bright spot in my chemo- seeing other chemo patients and drawing strength from the fact I was not alone.

I hope you and your son power through this with the best results possible!

God Bless and keep you and your son!

Thank you TXLiz for your support and tips. I will definitely file the warm liquid tip in the back of my mind.
Where I'm located its going to be very hot for the first 3-4 months of chemo and then it will start to get quite cold the last month or two.
Not sure if external weather influences symptoms or not.

My son has been wonderful. He has really stepped up in helping me out even in the midst of AP/SAT testing and finals.
I have always felt blessed to have him in my life and now in these circumstances - so much even more so.

thx again, may you continue to be NED now and forever.

benben wrote:Not sure if external weather influences symptoms or not.

Yes, cold weather will impact the cold sensitivity that comes with Oxaliplatin. Hopefully where you live it will be a warm six months during your chemo treatments.

It definitely is good that you are coming in with such a healthy body and active lifestyle, it should make the treatments more tolerable. Try to keep as active as your body allows, definitely helps both your mental and physical well being throughout active treatments, but of course also know when to listen to your body if it needs a rest--and it will as you progress and the chemo builds up in your system so to speak.

Good luck with your first treatment--keep us posted from time to time on how you're doing.

Soccermom2boys wrote:

benben wrote:Not sure if external weather influences symptoms or not.

Yes, cold weather will impact the cold sensitivity that comes with Oxaliplatin. Hopefully where you live it will be a warm six months during your chemo treatments.

It definitely is good that you are coming in with such a healthy body and active lifestyle, it should make the treatments more tolerable. Try to keep as active as your body allows, definitely helps both your mental and physical well being throughout active treatments, but of course also know when to listen to your body if it needs a rest--and it will as you progress and the chemo builds up in your system so to speak.

Good luck with your first treatment--keep us posted from time to time on how you're doing.

Thanks Soccermom, I'll keep throwing in updates as I can.

Today was my 3 week Post Surgery anniversary.
I feel really good with only a couple things that I'm not so pleased with, but hoping they continue to get better.
I walked 4 miles today at a brisk pace with no pain whatsoever. I really felt like I could get into a light jog, but little concerned about innards of stomach still feeling a little bit on the slosh side of things.

Here are the things I'm still hoping will improve:
1) bowel movements. last week I was experiencing what I thought was constipation - and it might have been as I was having very small (like marble size) infrequent movements.
I started upping my fiber intake, as before surgery I ate mostly a high fiber diet. I even took miralax for a couple days and drank a bit of prune juice. It didn't seem to help much.
Eventually one day I thought to myself, why is it that I feel like I need to go - but when I sit down to do the job hardly anything comes out. I decided to test standing up over the toilet bowl and opened my bowels.
To my surprise more stool came out - and I kept doing this everytime I felt the urge and eventually cleared out. Now the past 3 days I've had the opposite effect going on with like a dozen bowel movements a day.
Usually in the morning they are most like "normal" as they get. Which is consistency is rather normal, size is maybe 3 inches by 1 - they seem to be shaped more flat than circular though. Then with each progressive movement
the stool gets more and more liquified until late in the day where it is almost mostly liquid. Color also seems to start browner in the morning and turn more green as the day goes on. I've started to get a little sore towards the end of the day.
It's also not much fun having to play bombs away instead of sitting on the pot like a normal human being. I feel like I'm getting into an Edgu Squat to do my duty.

2) medport purple bruise right over the port. It's been there since the install 5 days ago and doesn't seem to have subsided a lot/maybe a little. Hoping that isn't an indication of anything worth being concerned about.

I don't think its going to be much fun trying to do a dozen toilet times a day, while standing at a 30 degree squat, with a chemo pump attached to me.. Any thoughts?

benben wrote:

Soccermom2boys wrote:

benben wrote:Not sure if external weather influences symptoms or not.

Yes, cold weather will impact the cold sensitivity that comes with Oxaliplatin. Hopefully where you live it will be a warm six months during your chemo treatments.

It definitely is good that you are coming in with such a healthy body and active lifestyle, it should make the treatments more tolerable. Try to keep as active as your body allows, definitely helps both your mental and physical well being throughout active treatments, but of course also know when to listen to your body if it needs a rest--and it will as you progress and the chemo builds up in your system so to speak.

Good luck with your first treatment--keep us posted from time to time on how you're doing.

Thanks Soccermom, I'll keep throwing in updates as I can.

Today was my 3 week Post Surgery anniversary.
I feel really good with only a couple things that I'm not so pleased with, but hoping they continue to get better.
I walked 4 miles today at a brisk pace with no pain whatsoever. I really felt like I could get into a light jog, but little concerned about innards of stomach still feeling a little bit on the slosh side of things.

Here are the things I'm still hoping will improve:
1) bowel movements. last week I was experiencing what I thought was constipation - and it might have been as I was having very small (like marble size) infrequent movements.
I started upping my fiber intake, as before surgery I ate mostly a high fiber diet. I even took miralax for a couple days and drank a bit of prune juice. It didn't seem to help much.
Eventually one day I thought to myself, why is it that I feel like I need to go - but when I sit down to do the job hardly anything comes out. I decided to test standing up over the toilet bowl and opened my bowels.
To my surprise more stool came out - and I kept doing this everytime I felt the urge and eventually cleared out. Now the past 3 days I've had the opposite effect going on with like a dozen bowel movements a day.
Usually in the morning they are most like "normal" as they get. Which is consistency is rather normal, size is maybe 3 inches by 1 - they seem to be shaped more flat than circular though. Then with each progressive movement
the stool gets more and more liquified until late in the day where it is almost mostly liquid. Color also seems to start browner in the morning and turn more green as the day goes on. I've started to get a little sore towards the end of the day.
It's also not much fun having to play bombs away instead of sitting on the pot like a normal human being. I feel like I'm getting into an Edgu Squat to do my duty.

2) medport purple bruise right over the port. It's been there since the install 5 days ago and doesn't seem to have subsided a lot/maybe a little. Hoping that isn't an indication of anything worth being concerned about.

I don't think its going to be much fun trying to do a dozen toilet times a day, while standing at a 30 degree squat, with a chemo pump attached to me.. Any thoughts?

Hey benben,

Try getting a squatty potty, it angles your body for better evacuation. Does it work? I don't know, but my friends got me one and I think it helps.

I'm 5 weeks post surgery. My BM's have decreased quite a bit. I'm usually in the 0-2 range per day now. First one of the day is almost normal, and the second does have a bit more liquid. I am also pretty much back to a normal diet.

my port didn't bruise too much, but one of the other patients I met at chemo today said his bruised quite a bit. It didn't bother the nurse, she still popped it right in. If I remember correctly, when I got the port, they said to expect bruising but if you see like blood pooling under the skin like a blood blister then call your doc.