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5Fu ???????

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

Can some of you tell us what exactly is 5FU and what does it do? I just remembered the surgeon mentioned it and I forgot to ask him this question.

Thanks to all,

Marygale

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Marygale,

5FU (also known as Fluorouracil) is a standard chemo that is given for our kind of cancer. Here's a good website that explains it, as well as the possible side affects:

http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Fluorouracil

Huggggs,

Cheryl

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

thanks, Cheryl. I'll check that web site out.

Marygale

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Marygale,

I am on my last few days of 24/7 pump of 5FU. It's a strong warrior in our fight, and as was said, a common chemo for us semicolons. Side effects vary, I had a few but they were manageable. In my case, I am having radiation at the same time, in the hopes that between the two we can shrink that tumor down to nothing before surgery.

Vicki

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

Vicki: So how long have you had the 5FU? And,I don't quite understand.....are you having PARTIAL removal of the colon.........complete removal.......or remove the tumor only? And, is the 5FU given after surgery also? Our surgeon strongly suggested complete removal of the colon and rectum..........since the 2 tumors are in different places....One just above the rectum and the other just before the turn to the Traverse, so they're sort of far apart.

Does the 5FU help after surgery to kill or shrink any cancer cells that may be remaining?

It's 3:16 a.m. and maybe I'm just in a brain fog, but I just don't quite understand.

Marygale

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

I have been on 5FU for 6 weeks, in tandem to the radiation. I have one tumor very low in the rectum, so I will have that resected only. However, because it is so low, unless they can preserve enough tissue to save the sphincter muscles, I will have a permanent colostomy as well. The hope is that the tumor will disappear, and the margins will be clear enough to save function, but I am realistic also and I know that is a slim chance. Still praying though!

After surgery I will have more chemo, and it will be a combination. Probably Folfox [FOL– Folinic acid (leucovorin) F – Fluorouracil (5-FU) OX – Oxaliplatin (Eloxatin)]or, if I am really lucky and they see no activity in the lymph nodes, nearby organs, etc, they may drop the Oxaliplatin part. The idea is to kill any free-ranging cells that may be floating around, as my tumor did break through the intestinal wall.

Write all this down and talk to the doctor. Did they give you a contact at the office? My oncologist's nurse assistant takes my calls anytime, and usually he follows up to clarify anything.

Hope this helps, Vicki

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

OK, thanks, that explains it. WOW, I have a lot of meds. to learn how to pronounce and spell probably. No, they haven't given us a contact yet......probably after we learn what the 2 scans and CEA show. If not, I'll ask for one. As you can tell, I'm not bashful about asking questions. I want to learn everything I possibly can so I can help Hop better.

I'm going to write your info down, then wait and see if Dr. mentions any of it before going too deeply into it. I'm sure after our next appointment, I'll be full of questions.

I'm praying that this BEAST hasn't metastisized.

Praying also for you, Vicki.........that they won't have to do the colostomy.......Hang in there my friend. There's ALWAYS.....ALWAYS room for miracles.....

Thanks for explaining in detail.

Marygale

taraHK
Posts: 1961
Joined: Aug 2003

Yes, the 5FU is given after surgery to wipe out any possible remaining cancer cells (invisible to the naked eye). You are right.

You are on a 'steep learning curve' right now -- all the terms and information is new -- it is like learning a new language. Soon it will all be very familiar. You are doing a great job.

Love,
Tara

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

Thanks.....I'm beginning to get the hang of putting things together now. And you're absolutely right about the "Steep Learning Curve" right now. IT'S A MOUNTAIN ! !

Since I worked in the medical field for a while, it comes rather easy to me, but when it's thrown at us directly concerning us, that's another story. I was in Law Enforcement for 19 years and that comes a lot easier.

BTW, we had a lovely Christmas w/ family here for a huge dinner....It was almost as tho we put aside the Cancer thing for a while and just enjoyed family. Thank God ! ! !

Thanks, Tara, for the response.

Marygale

dorookie
Posts: 1736
Joined: Jul 2007

Marygale,

I too am in Law Enforcement, I work on the Federal side with the Department of Homeland security. Where did you work?

Beth

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

Beth, I was Sgt. heading up the telecommunications team at our local Sheriff's Dept. Worked under 5 different Sheriffs and both political parties. Loved working w/ the public, but alas, the inner office politics got to me. I need say no more.

Marygale

dorookie
Posts: 1736
Joined: Jul 2007

Being with the Feds, it is so political its not funny. Every new president we get a whole new team at the top in Washington, and of course everything has to change. And thats just at the top, so many people play the politic game you can hardly ever know who you can trust, its a shame. Anything to get ahead. I am surprised I have been promoted as I have, cuz I dont take or talk Crap, if ya know what I mean (plus being a female). I guess they put up with me cuz they know where to go for the answers when it comes to technical things. The things they should be learning but to busy with their heads up someones butt. But I do have to say I love it too. I love working with my guys, I have the best group of guys that work for me! SOme are great some are rocks, but all in all it makes us a great family.

How is Hop doing today? Was he in law enforcement too?

Beth

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

Hey Beth:

I thought you would understand what I was trying to say.....

Nope, Hop was a salesman for John Deere Equipment for around 36 years. We both grew up on farms and now live in a small rural community. We've been here nearly 40 plus years now.

I started out as a legan stenographer, then into medical...worked for local doctor for a while...but L.E. was my love....Especially the 911 parts and medicals.

Marygale

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

All our days after this beast makes a visit are blessed, but the time with family in traditional holiday mode are the BEST! It kind of sucks at first because everybody seems just a bit desperate and fearful. You will find, however, over time, that it becomes just a bit less desperate and that much more enjoyable. Everybody seems to enjoy just being together more, having been shown the true reality of our mortal beings! Hope your new year is just as blessed!
mary

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

Thanks, Mary.

And, to everyone.....when this BEAST was, shall I say "New" to all of us, did your families seem to steer away from mentioning it or talking about it? I want so much for our sons to understand what this really is, what it could and couldn't be, what is done for it, everything they can learn about it. I'm doing a crash course on learning, so possibly I can answer some of their questions, but they just won't talk about it.........

Almost like it's taboo..........like they shouldn't mention it or ask questions. How did some of you get family members to start involving themselves?

We know we have their love and support, but I'd like for them to get more involved. Am I asking too much here? I truly don't know.

Thanks in advance,
Marygale

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I still have members who prefer not to discuss it directly! I think in the beginning I just talked about it, ignoring whether they wanted to hear it or not! Eventually they got used to it and comfortable enough to discuss it as well. Although even now, nobody has ever mentioned their fear of losing me! Almost like mentioning it will make it a self-fulfilling prophecy! In fact, I have never discussed the fact directly that since my recurrence, I moved from stage III to stage IV! I have tried discussing that without coming right out and saying "Hey, you realize I am stage IV now, don't you?" but NONE of them want to hear it and I respect that! I don't tell them warm fuzzies to make them feel better, and I have mentioned that it's a "different" beast once it recurs, but I leave it at that. I joke about my ordeal quite a bit, and I have a caringbridge site that I journal in about my journey, which helps them to get a better idea of what's going on without having to discuss it with me face to face! I think that was probably the single best idea I had; it helps my loved ones tremendously! Just my thoughts on the subject!
mary

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I have found that friends tend to be a little more open and willing to discuss than family, but then I have never been super super close to my siblings so it's not like we have had serious discussions about much of anything in the past. This is not to say they don't care... they just don't know how to bring up a serious discussion and share... as well, like Mary said, they don't want to face some of the possible realities. In a way, it's very similar to how we face the beast ourselves. At first, we can only take in so much and our brains shut down... we hear the word "cancer" and we don't hear anything else. I don't know how many times (and it has been numerous) when I will tell a friend that the doctor has told me something and I am SHOCKED! He/she said it as if it was something I was suppose to have known and this is the first time I've ever heard about it... and then my friend will patiently say, "No, Cheryl... it has just slipped your mind. You told me this 3 months ago when you had the such-and-such appt. and got the results." Sure enough, I will confer with one or two other friends/caregivers to see if this is news to them, and no, they know about it too because either they were with me, or I told them myself.

That always blows me away! How can I have known something, and mentioned it to others and yet, 6 months later it's total news to me?? But, our brains work in mysterious ways and it's amazing what they will do to protect us from too much information-overload.

So, my family (and I'm sure yours and everyone else's) is in that protective mode. They want to hear what is going on and that everything is going to be alright... but they shut down if it's information they don't want to hear or can't handle. There's also the added factor of fear... they are afraid that if they ask too many questions, they might make Hop feel miserable, sad and scared. If you tell them, "Don't worry, your questions won't scare/terrify Hop, he gets that when he talks to the doctors. There's nothing you can say that will scare him anymore than he has been" well, you know where that's leading... they will be terrified every time they hear Hop has to go to the doctor, knowing he may be getting terrifying news.

It's a tough tough time no matter what side of the beast you are on. The bottom line, everyone knows Hop is going through a very scary time and no one wants to say/do anything that will make him feel worse. They want everything to go back to where it was before anyone knew about the beast.

So, what I do... and this is for family and friends who want to know what's going on but don't want to feel they are bothering me with everyone asking the same questions over and over again...as well as for friends who live out of town and aren't close by to know what's going on... I maintain a blog -- http://ourcheryl.blogspot.com -- and it is accessible to anyone who is interested in it. It's also convenient because they can read it at their own convenience, whether it is every time a blog entry has been entered or catch up on reading a couple at a time. This blog is not to only talk medical jargon, medical treatments, appointments, various doctors' opinions, etc. (could you imagine how dry and boring that would be for the reader???)... no, I write it as a journal with the description of what it's like to be on a journey with Stage IV Cancer. Yes, of course I write about what treatments I'm getting, what the side affects are, what I'm feeling on the day I'm doing the blog entry, what treatments/options are coming up, whether I really like a particular doctor, or am not impressed with the attitude of another one, etc.... but it's also all about what else goes on in my life. Where I'm going, who I'm seeing, what I'm doing on a day to day basis and how I'm juggling the day to day fun stuff/chores/social stuff with the schedule of doctors/hospitals/treatments... so that it ends up just being a normal, every day journal. Someone else may be going to the dentist today and off to pick up a prescription at their doctor's, before getting ready to go to a movie with a friend and out for dinner. Well, that's me too but instead of going to the dentist, I've gone to my oncologist... and stopped at my family doctor to pick up a prescription refill. Along with the entries, I include lots of photos (the joys of having a digital camera)... so anyone, family or friend, who reads can see for themselves that my life is as normal as anyone else's (the majority of time what I hear is... "How the heck can you do so much day in and day out... there's no way I'd ever have the energy you do!!"), and totally normal for me, because I've always been this way!

I really do think that takes away a lot of the fear when they can see/hear for themselves that you are not on your deathbed, that you have no intention of being there anytime soon, and they can read on a daily basis what you are up to so it's not like you are hiding anything from them.

I remember having one discussion with my Dad and sister about the stages of colon cancer with Stage IV being the last stage. Not last as in, it's all over once you hit that, but last as in... there are Stages 1 - 4, so it is the last of the 4 of them. At least, I thought I had got that message across. I had explained (I was Stage III at the time) that if one gets diagnosed as a Stage IV, then it means the cancer has spread to another area outside of where the primary cancer was found. They understood that, no problem. Well, sure enough, last March, we found that the cancer was in my right adrenal gland and at least ONE spot in my lung had lit up the PET scan. So it had spread to my lung and my adrenal gland. Guess what? That makes me a Stage IV.

Now I never did come right out and say in words to my dad and sister, "Well, now that we know about the spread you do realize this means I'm a Stage IV." I just assumed they would know this because both of them totally understood the discussion we had had a few months earlier about the 4 different stagings. When my friends had the tribute show for me at my Celebration of Life and Friendship party and I had to get up and talk... I told everyone where I was at, that I was a Stage IV, but that I see this as a dare... not a finality. Well, afterwards both my dad and sister were shocked. "YOU have never told us you were a Stage IV!!" Hello?? But that is exactly what goes on with family, friends and even us, the patient... we hear but at the time if it's too much information, we don't hear. We speak, but it's quite possible that the listener is not able to absorb the information at the time. And that goes for everyone.

So, just accept the support and love they give and don't be too surprised if they can't get more involved than what they are currently doing. It is hard on everyone involved and we all handle stress in our own ways.

Huggggggggs,

Cheryl

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

My daughter is great - drives me to radiation and chemo, cooks, etc., but no talking about it. She actually told me she can cope if we don't discuss it. She deals her way, and I talk to her husband. Because he's a doctor, he takes a clinical approach that I love. No BS.

I also have a caringbridge blog because the rest of my family and friends are scattered all over the country (and world!) It helps me to write daily, and it helps them to know when is a good day to call, or leave me alone.

They have a lot to process...give it time.

Vicki

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

How can I get to a caringbride blog? I think that's a good idea.

Ok, then my family isn't that much different than any one elses. That makes me feel better. I understand so much better now that some of you have explained communications -- or NO communication -- w/ family.

Since we have all sons,that probably plays into it also. I like the idea of a caringbridge blog. Didn'tknow about that.

If they DO have any questions, they corner ME and I get to try and answer them. which is okay..I don't mind. But the next time, I'm going to make sure they know they can talk to their dad about this also.

Thanks,my angels, for answering a very important question for me.
Blessings..............Marygale

dorookie
Posts: 1736
Joined: Jul 2007

Marygale,

From my experience the first time I was DX, I didnt want to talk about it. I just went through the motions, just went through doing what I had to do to get through this. To me it was nothing other then a bump in the road. I didnt talk about it at all with anyone really, unless it was a day I just couldnt keep from crying and someone was around, then I talked a little. I guess I was in major denial the first go around. Now with the reoccurance, its really hit me harder then the first time. To me now I had to face the fact that it was real, that it was happening to me and my family. I couldnt shut them out anymore, I had to talk, and I am now realizing I need to seek out someone other then my family to talk with, like a counselor.

I guess what I am trying to say is that Hop might just not want to talk about it, he could be like me and in denial. I know all of this is so new to you guys, and to be honest the last thing I wanted was someone pushing me to talk. But now that I look back, I wish I had talked, I have so much pent up anger now its causing me alot of pain inside. Not physically, but emotionally. I kept telling myself, hey I am a cop, i can handle this, just do what you got to do, well when it came back, I had to realize real quick I wasnt in control after all.

I am sorry I am rambling some, I just know how Hop is feeling and I feel his pain and fear and I know how hard it was for me to talk. I want so badly for Hop to be able to talk to you, but I can understand his side too. I was stubborn, no one was going to make me talk no matter what! So they just gave in and I spent many months going through treatment without talking about it, dont let that happen to Hop. I have read your not supposed to push a person to talk, but from my experience, I wish someone would have pushed me harder. Not saying it would have worked, but wish someone would have gotten through to my thick head.

Okay I am done. Sorry for rambling. Just some thoughts.
Beth

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

And a fabulous ramble that was, Beth!! Hoooooray!!! I'm sooo glad you feel comfortable now to just come here and spill it out in a post or mutiple posts... and at the same time, show the rest of us there are many facets to this beast. There are people like me who just naturally ramble, talk, work things out verbally or in writing and the more scared, confused we get, the more we ramble, talk and write. For me, putting things into words, be it verbally or in writing is very cathartic... and I think part of that (oh, I'm such a drama queen!!) is that someone is reading these words and saying, "Oh, ya... can I ever relate to that!!" or "I know exactly what you are going through, here, let me tell you something you might not know..." and I read everyone's posts like I'm thirsting to death... just absorbing the knowledge I pick up, as well, finding that I'm not alone and that we all have similar stories. And even better... that so many have gone through the same thing as me and have come out fine... either cured or living with a chronic illness that is not the end of life :)

But there are two sides... as you have pointed out, you didn't want to talk about it, to others or even to yourself. You just wanted to do what you had to do and let's get over this... until the recurrence happened and then it was like you were hit with a brick... or a bunch of bricks!! Now what to do??? If your comfort zone is to not talk about this, then where the heck do you turn to??

So that is why I am so glad that now you are finding you do want to talk to someone, whether it's a counsellor you can trust, or just coming here and verbalizing what you are going through. And whether you realize it or not, everything you have to say... be it what you are feeling, what your partner is going through, how the people at work relate, the fact that you can't work during treatments... whatever you are going through and feel comfortable about talking about, it DOES help someone else because they will find that they have exactly the same feelings/situations! For all of us who do post messages on this forum, there are probably 20 people who don't... but they are reading, reading, reading. So we don't even know if we are helping someone who doesn't post, but we all know we help each other who do post... so my bets are there are even more people who don't post but get comfort and information from the posts they do read here.

So ramble away anytime you feel the need!!

Huggggggs,

Cheryl

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

Hi Cheryl....

And so right you are. With the rambling, comes knowledge and comfort on our end. I print a lot of these posts out for Hop to read....He's getting more comfortable reading now than he was 2 days ago.

I had to have a little talk w/ him this morning about the "Gloom and Doom"....he couldn't sleep last night for thinking about all the negatives.........So, what information I could give him mostly came from this forum---------from people rambling.......And, it helped as we talked about always being able to see the light at the end of the tunnel.....thinking positive and how it effects healing..........Most importantly, the BEAST is no longer a death sentence. AND, the quality of life is one of his main concerns....not knowing if he wants to ""Live that way""".....I even had answers for that thanks to the forum..

This place has helped both of us so much, even if it's only myself doing the posting....a lot of the posts actually come from him and the answers do help a lot.

SO, PEOPLE..........RAMBLE, RAMBLE, RAMBLE all you want. YOU'RE HELPING US AND OTHERS while doing so.

Thank you from my heart,
Marygale

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

Oh, how I love it when you ramble.....I learn so much from you guys that way. So, my friend, you ramble on anytime you feel the need or just want to talk. You have no idea how it helps me and I believe, many, many others. You're doing quite a service by "Rambling".

Thanks for the insite.....

Marygale

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

Go to www.caringbridge.org. You set up your own site, they them email you instructions to send to your family/friends. You can blog every day, or just once oin a while, your choice. And they can leave you messages. It's been a huge help to me.

Vicki

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

Thanks, Vicki. I'm going to try that. Sounds like a very good "tool" to use.

Marygale

kmygil
Posts: 881
Joined: Feb 2007

Howdy. 5-FU is an old warrior against cancer. It is one of the oldest cancer drugs around and still one of the most effective. They have found that its effects are prolonged & enhanced with the addition of leucovorin, so that's added into the cocktail when you do Folfox-5 along with the oxaliplatin. Hope this helps.

Hugs,
Kirsten

captainhop's picture
captainhop
Posts: 156
Joined: Dec 2008

Thank you for your response. These things are becoming clearer and clearer to me now.

Marygale

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