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saw oncologist

dn220's picture
dn220
Posts: 79
Joined: Sep 2007

I saw my oncologist and was told that my chemo now would be 5fu, leucovorin,and eloxatin every 2 weeks for 6 months. Is this going to be really bad?
Why wont they tell me what stage my cancer was? I asked my surgeon and my oncologist and never got a straight answer. I know they found mets to 1 node out of 9 and 2 more that were necrotic and appeared to be ? from my chemo and radiation before surgery. They said they also found another lesion further up in my colon. It is now 1 month since my surgery and my ostomy site finally is starting to look not so horrible. The "crater" as I call it has filled in very well. My bottom is still horribly painful though. I ended up with shingles in my surgical site back there so that definitely hasnt helped but I'm starting to wonder if it will ever feel normal back there. I still have urges to use the bathroom the old fashion way, has anyone else felt that? I see my sugeon next week for the port to be put in. Is this just outpatient? I know I am asking so many questions but I honestly trust you guys more than the docs. Still cant eat any thing good, makes me so nauseas, but to be quite honest what I eat now is probably more healthy but I sure do miss the red meat. Please excuse my questions but my mind is driving me crazy wondering whats ahead now.
Hugs to u all.
Deb

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

You need to ask for a copy of your Pathology Report which will give you all the information you are requesting. Stage of cancer, how many lymph nodes were removed and tested, state of margins tested (signs of spreading) and if the tumor is poorly, moderately or highly differentially. This is YOUR report so you have the right to a copy. You should be able to get this from the lab, hospital, surgeon or onco.

As for the chemo, I think you are speaking of the FLOFOX Regime (5FU pump, leucovorin and oxaliplatin). This is the regime I was on and I found a lot of usualy information on the American Cancer Society Website: http://www.cancer.org/docroot/CRI/CRI_2_3x.asp?dt=10

My port was put in going through outpatient surgery (put to sleep). The area was sort for awhile, but it does heal.

Feeling normal, will what is normal? I still can't answer that one. Life isn't normal or is it?

What helps is taking one-day-at-a-time and taking the time to actually smell the roses and feel the grass between your toes.

Don't ever hesitate to ask YOUR FAMILY here any question, because we are here for YOU :)

dn220's picture
dn220
Posts: 79
Joined: Sep 2007

Yes, that is what they said it would be on a pump. I called today and they are sending me my path report. Hopefully I can find out something then, they said my tumor marker was normal at 1.5. I hope I got that right. My memory is still so horrible and I failed to write that down. Thanks for the help.
Hugs

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Can't speak to the rest of it, since I haven't had chemo or rectal surgery, but I can address the red meat issue. I stopped eating red meat long ago, way before I had colon cancer. I think it's been at least 12 years now (wish it had protected me from this mess!). I love the things like soy bacon and sausage products, and I use turkey burger for things like spaghetti sauces. I'm also very apt to just cut up chunky vegetables like zucchini and peppers and such to add to tomato sauce. Even my carnivore husband says it's good. Give yourself time, and you'll forget you ever liked red meat.

Gail

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Oh, Tootsie! Good for you for giving up the red meat! Even though meat eaters have a higher risk for this cancer, i got it after being a total vegetarian for many years. It's ironic because i thought it was the only disease i was guaranteed not to get! lol! To my dismay, i have two great uncles that had it, and so it appears there is a mutant gene passing along! Why i got it at 38 when they all got there's past age 50 is not a big mystery to me, but nonetheless ironic.

I would still recommend a completely vegetarian diet to anyone concerned about their health (though my reasons were purely ethical).

Many hugs!
Krista

pamness
Posts: 515
Joined: Nov 2007

I can't answer a lot of your questions, but I can tell you that I sympathize with the shingles, I got them after I was done with treatment, but they went away both times. The sore bottom does get better. I had a colon resection so I don't know anything about ostemy sites etc. But I did have a port put in - it is not bad, a little sore at first but such an easy thing later in. I don't understand why your surgeon and oncologist wouldn't tell you what stage you were, but since they aren't talking about mets to other organs - sounds like it won't be so bad , but as everyone suggested get your reports. If you are having folfox, its pretty widely used these days. I had a lot of trouble with the oxalyplatin, but I was in the minority. Make sure that you insist on the best meds for nausea, etc. and drink plenty of water. For nausea I used amend, zolfran, compazine and attivan along with a steriod for a few days after treatment.
They didn't offer up the amend on my first few rounds, but it really worked. Attivan, if you have trouble with nausea can also work really well for mild nausea, anxiety etc. But really push your doctors for the best meds for you. Ironically, I got much better at managing the side effects as I got further into treatment (there is a cumulative effect). I also found my chemo nurse to be a great source of information on how to manage side effects. I wish you all the best and ask all the questions you want. Everyone here has been there.

davidsonxx's picture
davidsonxx
Posts: 137
Joined: Mar 2007

Don't worry about asking too many questions. On the way home I usually thought of at least 2 that I wished I had asked my onc.
It's hard to predict you will do wit the chemo. Most people do OK but there are some that have problems with the oxaliplatin. I had a temporary ileostomy and I know exactly what you mean by the crater. I also felt the urge while I had my ostomy. I think it was just from the swelling because it went away about the same time the swelling did.
You have already been through chemo, radiation and surgery. You will make it through this next chemo also. Just focus on getting through the next step and it won't be as overwhelming. Most of the time what you imagine will happen turns out to be much worse than what really happens.

Hang in there you can get through this.

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

They may be waiting to stage you. My docs weren't positive that i was a stage III until they actually did the pathology on the lymph nodes they took out, which wasn't until after my surgery. They suspected i was a III because the nodes showed up as enlarged on the MRI. So until then, my staging wasn't much talked about. Most of my problems were with my onc's nurse. Not only would she not tell me about important issues regarding my treatment, she would downplay the events, and therefore leave me unprepared for many things. She told me to "concentrate on the positive". I'm glad she was transferred early on in my treatment! So yes, you will get some health care professionals that will over sympathisize with you, and not tell you what you need to know. All i can say is, ASK. And if you're not satisfied with what they tell you, ask someone else until you are satisfied.

As for your folfox treatments? Like others have said here, it all depends on you, and how your body takes it. I've only had two treatments, and i get the neuropathy immediately during treatment. It's more weird and annoying than painful, though this last time was much more pronounced. I'm REALLY tired the first week, and then seem to have a good week. Hopefully that will last. I have heard some people say that they had no side effects at all with this treatment, so that is just as likely to happen for you.

Oh, and the anal discharge thing! OMG, what a nightmare! Nine days after surgery i had clumps of blood coming out for about a week, then it lessened, and stopped completely for a while. That was all remnants from the surgery. Now i have anal pain, and gurgling and gas in my abdomen since i started the adjuvant. I'm sure it will go away with the ileostomy reversal.

Now what is going on with this lesion? Is it a tear, a polyp, and what are they planning on doing about that?

Keep us posted!
Many hugs,
Krista

dn220's picture
dn220
Posts: 79
Joined: Sep 2007

Thank you all so much for the answers. My port is scheduled for the 18th,then chemo starts the 22nd. Still having lots of pain in my backside but its not in my surgical site, its more like where it used to hurt before it was removed back there so I called my nurse manager and she is going to talk to my doc in the morning and tell him about it. I dont know if its nerves or what, but I do know it hurts pretty badly. Surgical margins were supposedly clear but I am so afraid thats what this is. I guess I'm just a little paranoid though.
Deb

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