Colon Cancer Support Group
Colorectal cancer, also called colon cancer or bowel cancer, includes cancerous growths in the colon, rectum and appendix. Many colorectal cancers are thought to arise from mushroom-like growths that are usually benign, but some may develop into cancer over time. The majority of the time, the diagnosis of localized colon cancer is through colonoscopy.
I will have a consultation with a 2 nd oncologist on Friday - I did not care for the one I saw while in the hospital. I know that the recommended treatment will be Fulfox/oxy/5FU. I've been reading all kinds of terrible things about side effects.
Has anyone had this treatment? I'm very aware that side effects vary from person to person, but generally were you able to go about your life with the treatment or were you incapacitated? How did you manage at home with that box attached to you for 48 hours? Does the mediport interfere with arm movement at all, and how much does it show?
Thanks, I appreciate any info you all can give me!
Has anyone had this treatment? I'm very aware that side effects vary from person to person, but generally were you able to go about your life with the treatment or were you incapacitated? How did you manage at home with that box attached to you for 48 hours? Does the mediport interfere with arm movement at all, and how much does it show?
Thanks, I appreciate any info you all can give me!
As for the chemo it sucks but it ussually most responsive an if u have a por then th bottle isn't even there
There are many different responses and side effects. (Mostly about the Oxiplatin)
The port should not bother you and can barely be see or noticed by most people. People that may notice your port may be a cancer patient or a Nurse, and as soon as they see it they know what it is.
I never had anyone else ask me what is that sticking out under your shirt!
I personally don't think anyone noticed my 5FU fanny pack. I kept mine around my waist.
Showers were easy for me, I just covered the bag with a towel and kept it outside the shower on a chair.
The worst problem was forgetting it was there if I had set it on a table or went to bed.
Getting up and going to the Bathroom I would sometimes forget it but not often.
I think you will find most people never finished all 12 treatment of Oxi.
Since I have been on the message boards (2 years) I have only found about 5 people that finished the Oxi.
Some had severe reactions.
It was ladyarcher that had a very severe reaction and her doctor took her off at 3 treatments.
Her Onc said it was not worth taking the Oxi for a 3% increase in killing any of the cancer.
She finished with the 5FU, which (btw) is all they used to give. It is known as the work-horse for colon cancer and many others.
I think you will learn a lot reading the other posts.
I might look and try to find you some links telling of what some did.
I did not finish it because of heart problems, blood clots, respiratory problems and other things, But my Onc would not just give me the 5FU???
Hopefully you will have an Onc that realizes what all Oxi does and offer you only the 5FU?
Don't get me wrong it has side effects too.
I took it Pre-Op and mop up. Yes I had neurapathy with it too, but it does leave sooner than what the Oxi causes.
I wish you luck but know you will learn much more by reading some of the other threads.
All the Best to you on what they give you or you decide to take.
We had another woman Janie?? (We have two Janies) For some reason she stopped it all at 3 or 4 treatments.
Again the best to you.
graci
ps: Hello irishwarrior! Nice to see you on the board. I have heard people asking about you and this is the first I have heard from you so it is a pleasure to post with you.
g01
sores to the mouth
nerupathy (pins and needles like when your foot falls asleep but 100x worst
inability to touch cold (wear mittens all the time)
racked skin
feeling sick to the stomach (both bum an mouth exits)
weakness and any other chemo side effects
its a very hard drug because its made with platinum (build up of metal in the body) but its also one of the hardest ones for the cancer to switch anti bodies for.
an hello ,miss graci i was here awhile ago but i left for a couple reasons and they are as folows
-site used to be better monitured now it full of spammers
- ar the time some members were not upholding the core prinicples of the site and were constantly talking about dying and giving up we were here to talk those things out of ur hesds`away from that... i put this site on my main email so if anyone needed me all they need to do was email an i said fo it netime so there was no need
-and last but certainly not last was i wanted a summer so i stoped chemo and just dissapered for a it
im giving this site another chance because some of my friends are here an i like to see how they are doing
p.s i have gone through 8 oncologist because i didnt like the care i was recieving so never feel bad about leaving one because they wont bat an eye if you were to pass away..... They are emotionless they may act like they care but in the end they are experts at hiding from us good ppl.....not saying they are eveptions
I could have went to a large Cancer university, but I was for the most part on my own and this would have been a 90 minute trip one way.
I chose one town closer with (yes) some excellent surgeons. However the cancer treatments were there too and we only had a couple of choices. I did change Onc, but he was worse than the first one. He never listened to anything I needed to tell him.
I was only in his office one time and that was to find out if my supplement insurance would cover my treatments.
When I hear some people talk of their Onc I can even get jealous because they are treated so well by that ONC.
I have a friend writing a Cancer Book and he also speaks of the elderly that are crammed into the treatment unit.
I do think Oxi is a terrible drug and the effects can stay with one forever.
I did demand the cal/max infusion before and after the Oxi and I never had the 'cold sensations' ? This does not work for everyone, but it did me. (the only good thing)
I was sent to the 'Big Cancer University once for another colonoscopy, because no GI doctor or surgeon could get through my colon?
When the Oxi did cause the heart problem, blood clots and respiratory problems I did leave!!! I went to a Naturopath and from what he has given me I feel better and some of the neuropathy has left. It does show up from time to time?
Nice to meet you again. I am wondering about you just stopping the Chemo?
IW, I feel this is a good site and everyone seems to care for each other.
graci01
PS I see where you have appendix cancer (is quite rare but is there) We have another member on here with it too. You are so extremely young to be effected with cancer, but more and more young people are being effected by cancer?
So much good info here.
My husband received 12 rounds of chemo every two weeks starting with Oxyplaxin and 5 FU. He wore a pump home for 48 hours delivering the 5 FU. The pump took him a bit to get use to. He was able to work with the pump on, he carried it in a fanny pack around his waist. It was taped good to the chest where his port was and then the line went down under his shirt to the pump in the pack. Sleeping for him was a little weird the first few times but he really did get use to it. You cant shower really while its on and you must have a port.
He didn't feel a lot of side effects until 3 days after each infusion. The chemo he had made him very tired, and fatigued after short activity. Never nauseated, he never lost weight, But he did have rashes and red skin, runny nose. He had the sweats a lot. The worst of it for him was the neuropathy, soar feet numbness and tingling in the hands and arms and sand between the toes feeling. A good oncologist can get you meds to help with a lot of the side effects
We were very concerned with his treatment after reading everything online about side effects, but he really went through it like a champ.
He has not received any treatment for almost a 3 months and the neuropathy has gotten so much better. It did last a while though.
I truly believe that a positive attitude played a huge part in the way he was feeling through his chemo, and a sense of humor. He never complained he just did it. Not to say there were not days here and there that he couldn't work his fairly labor intensive job. He was really able to see the big picture. It was necessary and he was facing it head on.
I hope you are able to find a oncologist you can trust. Thats very important and ask questions lots of questions. I know that everyones experience is different but I do hope that anything in this response helps you in your journey. Good Luck!
Hugs Tracey
I get the mediport installed 12/1. I'm still terrified of the chemo and the side effects. The oncologist told me I need to convince myself that I should be more afraid of the cancer returning than of the treatment. How did you all get to that state of mind? How did you stop being terrified of everything and start to fight? I'm really having trouble with this! Thank you all!
Awesome you found a oncologist you feel you can trust. Im sure you are so scared. It's going to be ok. John was really scared too. Its so much information to take in. After a few treatments you will be a pro. My husband, the first few times when he had his treatment would say out loud "Get in there and kick that Cancers butt!" lol. I know you are scared but you can do it!
Don't worry about the port, thats a breeze. Do you have some people around you that will be able to help? Im here for you if you ever need to talk or vent or prayers. You will do great!
hugs Tracey
ps you are already fighting by preparing your mind.
Online support groups have helped me a lot, I've "met" so many nice, caring people.
You can handle it! You have too. Im happy you have met people that support you here online. Its amazing how many people are going through the same thing as you and are feeling the same things. Great way to get strength and information!
As far as your friends that you had that wont communicate about what your going through. We can relate. I think it scares people to and depresses them so they just put it out of their minds. But you are living it. It's important to talk about it, It makes you stronger.
Im happy you can talk about it here. Have a awesome day and Thanksgiving. Hugs Tracey
I just finished my first fulfox treatment this week. I to was terrified so many things happened so fast and my life was turned upside down. I was pleasantly surprised by how well I tolerated the treatment. The fanny pack for 48 hours is really no big deal at all. I was a little nauseas day 3 and 4 and had a hard time eating anything but little portions, the nausea meds helped control it, day 3 I was tired and slept a lot, but other than that I got on my treadmill, walked a bit, and tried to stay active. I live in a cold state and when my hands got cold I did have a little tingly thing in my hands it was mostly just uncomfortable though, not a big deal You are a lot stronger than you give your self credit for! Every time you feel uncomfortable just imagine the cancer cells you are killing in the process. Dig in and find your inner strength you can do this !
I am ten weeks out from 12 treatments. It was not fun but it was manageable. I actually felt good the 42hours of chemo, usually crashed later. Being attached to my pump wasn't bad, I had the IV run under my shirt and wore it on my waist like a fanny pack. My husband works with someone who wears his to work.
I did get great support and info here, but one thing my oncologist told me to remember--people who have very little or no side effects do not post or go to support sites and therefore aren't heard from. Report every little thing to your onc, mine adjusted my dosage quite a few times.
You are correct about the xeloda and i.e. 5FU. They are considered the same?
It used to be in the States, we only had the 5FU! (Called the work horse for colon and many other cancers)
The Oxi was added I think it was released in 2002? People seem to hate it and all the side effects and damage it can cause.
Not to say the xeloda does not cause side effects too!
It is now what we call 'Standard Protocol'
Pre surgery I had 5FU & radiation and believe it or not if my Onc just saw me like in the hall (any-place) he would ask me if I was taking the pills xeloda like he ordered.
It did the same mistake pre-surgery and for Mop-up Chemo.
I do think the xeloda is expensive 'here' but not the 5FU and they still say they are the same?
The Oxi is very expensive, but if we have insurance it pays for it.
What I don't understand the Oxi only increases the odds by about 3%.
I found out some patients here refused the Oxi? I tried, but was told NO by my Onc?
I truly believe it is because of the $$$ they make off the Oxi!
Are you now done with your treatment and if so how often do they test you and what methods?
Best to you jaynieG
graci01