Hi everyone,
I have just found this board, and want to commend all of you on being such an amazing supportive group. I see some incredible fighting spirit on this board, and awesome results. It is so encouraging.
My very best friend, 29 years old, was just diagnosed with stage IV colon cancer. I am confused about many things, and have some questions. The thing is, it seems like she just isn't quite at the point yet where she is ready to seek out more information, so I come here in hopes that you all can answer some questions! This might get long, so I do appreciate you taking the time to read.
She had major surgery about 2 weeks ago where they removed part of her colon, kidney, ureter, appendix, and ovary. They removed 90% of the tumor, and the 10% that remains seems inoperable as it is directly under the vena cava.
She is scheduled to begin 5FU and Leucovorin in mid October.
Here are my questions:
1. They staged her at a IV because of the extent of the cancer. However, when she went to her oncologist, they were quite encouraged because it is localized. This is confusing to me. It obviously had metastasized to other organs (but not her liver nor lymph nodes) so how can it be considered localized? Is it because they removed all the other affected organs? And the cancer that remains is localized?

2. Also, I told her I would do some research into the typical sides of the chemo. Having recently completed chemo for another issue, I am well aware that EVERYONE IS DIFFERENT, and no 2 experiences are the same, but I was hoping to get some general info, right from the horse's mouth so to speak instead of relying on clinical websites.

It sounds as though, on this regimen it is unlikely she will lose all of her hair, what has your experience been?

How many days post chemo do you seem to have the worst effects? She is going to be on this regimen every other week. I guess what she is trying to get a guage of is if she might feel really terrible for the entire 2 weeks in between or if she will have a bad few days either immediately following her chemo or beginning several days after the chemo. I guess we are just looking for personal experiences.

What were the most trying side effects from this regimen that you experienced? What were the most helpful coping tools that you found?

Now, this is my own question as a concerned, anxious friend, and I guess I'm looking for some reassurance. My friend has opted not to find a second opinion at this time. Did you get a second opinion? Something deep in my heart is telling me that she needs to consult as many doctors as possible in this situation. However, I know I am not the one living this, and cannot push her to do this. I need to respect that she is faced with all she can handle at this moment. I guess I just feel like "what if....there is that one doctor who has a different idea about how this should be treated, or one doctor who has seen a very similar case and had success, or one doctor who knows about a new trial drug that another doctor hasn't been caught up to date on yet etc etc." So, do you have opinions about second opinions?!?! :) She did have her case reviewed by a team, so it is reassuring that their is not one doc calling the shots. It is just something I am curious about.

Also, we are a few states apart, what would be the most helpful thing I can do for her and her husband from here? What have all of you who have fought this battle needed most for support?

I hate that when I call her, it seems like all I can talk about is how she is feeling both mentally, physically etc. I guess I need to work on realizing that she DOES still have other facets of her life, eventhough this is all I can seem to think of at this moment, and just take her lead in conversation.

Anyway, thank you all so much for giving me a place to come to learn how to support her, read all of your inspiring stories, and hopefully support all of you in some small way.

I am sorry your friend has been diagnosed with Stage 1V colon cancer but she is lucky to have such a supportive friend to help her through the recovery process. I will try to answer some of your questions to the best of my ability and others will probably fill in the gaps.

As to why stage 1V but localized, I am not sure, but seeing how several organs appear to have been involved, I would think that explains the staging.

Typical, but as you say, everyone is different, side effects to 5Fu/leukovorin, which my husband was on three years ago, are diarrhoea, fatigue, mouth sores, nasty taste in mouth, hair thinning but not complete loss. Most of these are treatable so they only last a few hours (diarrhoea) or days(fatigue) so your friend may only experience side effects for a couple of days after each treatment.

She may also get some stomach cramps and hiccups...again, there are meds for all of these. Anti nausea meds will be given at the time of treatment and can also be taken following treatment if necessary.

Getting a second opinion is a personal decision but does not really apply to us here as we live on a small island. In any case, we had faith in the decisions made by our oncologist, which is important. If she feels she should get a second opinion, then encourage her...otherwise allow her to make her own decision.

For you as a support system, just continue to let her know you are there for her, to help in any way you can. We just appreciated phone calls and to know people were thinking about us. It helped both of us.

Do come back with any other questions you may have and wish your friend all the best in her treatment.

Love and prayers,

At every two weeks she may just be getting to feeling normal again when the next round starts. I would be OK the first two days of each round then go downhill. Over the weekend I'd start feeling a little better and by Wed or Thur usually feel almost normal. Her dosage may be less though as her frequency of treatments is higher.

mouth sores - ice chips or popsicles during infusion will help keep these away

diarreha - get a prescription for loperamide, the generic form of immodium, its cheaper and brand name immodium only is sold in 8 tablet packs which might well be less than a two day supply.
- Orange juice, apple juice, Gatorade(or similar), chicken soup (just the broth if the meat and veggies are not appealing) aid in both getting water into you AND keeping the electrolyte balance up.

fatigue, dizziness, lethargy - often a consequence of dehydration, see above for alternatives to plain water but make sure to still include plain water.

taste problems- experiment with different flavours to determine which are ok and which are not

hair thinning is a possibility but less common with 5FU than with other chemos.

I thought about heading for a big cancer treatment center for a second opinion but with the expense and consequent delay in getting treatment, along with confidence in my colo-rectal surgeon and oncologist I went along with the treatments offered.

You are being a good friend, be sympathetic, give your opinion but let her make the decisions. Will she have someone nearby who can help her, family or significant other? Being alone, feeling ill and not being able to do much is lonely. (daytime TV sucks!!) Contact with you will be important. I she has no one nearby then regular contact with you would be good. If she does have someone but will still be alone for long periods(during the day for instance, when others go to work) a quick call during those hours, if possible would also be good.

I am sorry to hear about your friend. My concern reading your post is that your did not mention Oxyplatin or Avastin ( two fairly new drugs that has shown success when dealing with colon cancer). If your friend is not getting either of these drugs I would HIGHLY encourage a second opinion. These two drugs along with the 2 you mentioned are now considered standard treatment when dealing with stage 4.

Thank you for being there for your friend

Lee

Thank you all for your responses! I really appreciate you taking the time to respond, and provide me some insight. She will have family around off and on throughout tx, and she has a very very supportive husband, but he will be working extra shifts to make ends meet. I will do everything I can for her from this end!
Lee a what you said resonates VERY strongly with me. In reading up on treatment, it just seemed like they were being very conservative with her. I know they are concerned because she will only have one kidney to process these drugs with, but still, it sits a little funny with me. I will mention both of those drugs to her, and ask her to please at least bring them up with her oncologist.
Thanks again! I will probably stick around here, at least lurking! This is a great board :)

Lee A is right. Please talk her into getting a second opinion. At age 29, she should be undergoing the MOST aggresive treatment that she can tolerate. Oxyplatin along with 5FU and Leukovoran (sp?) constitute a regimen called FOLFOX. There is also a regimen called FOLFIRE - 5FU, Leukovran and something else - this is a bit more toxic to the liver but possibly OK for your young friend if she has no liver disease. And Avastin is also considered to be "current protocol" for stage IV colorectal cancer. She really needs to be asking questions of her doc and looking for other opinions.

I can understand that she just doesn't want to deal with it or go seeking for information just yet. It's a very emotionally devastating time for her. That is normal (or at least it was for me). I waited maybe too long and now I'm trying to play catch-up. Please don't let that happen to her. Be pushy if you need to be.

Other considerations: Tell her to get her teeth cleaned before chemo if possible. A clean mouth helps ward off mouth sores. The dentist will give her special high flouride toothpaste and and extra soft toothbrush.

Lots and lots of water.

Diarrhea - take an immodium at first sign of diarrhea. Then at next movement and again at next movement if needed. It works.

Eat lots of small meals. Healthy food whenever possible. She may lose her taste for some things. Smells might be a problem too. Sleep, rest, be kind to herself.

If at all possible, take a week off from work, buy a plane ticket and go visit her about a month or six weeks after she starts chemo. She'll likely argue with you and say she doesn't need help. She does. Clean her house. Talk about old times, old friends. Listen. You'll never know just how helpful this is.

Talk to her about your own problems. Ask for help. It's very difficult to accept help without giving something back. Find a way for her to give back to you.

You sound like a wonderful friend. Hang with her, even when she says all is fine. Friends are so important.

I never could have made it this far if not for the love and support of my two closest friends - one lives on the other side of the country, one just up the street. There are no words to describe the difference they've made in my life this year. My hubby is wonderful, I've had a tremendous outpouring of love and support from friends, family and former co-workers. But there is just no substitution for that best friend or friends who are there with you every step of the way.

Thank you!

Thank you again for your insight. I know this is asking a lot, but can any of you direct me to a journal article or two outlining that Oxyplatin and Avastin are now standard, or at least should be used in most cases?

I have just returned from a quick 24 hour visit with her. It was fantastic! Of course, she over did it a bit, but she really just wanted some normalcy. My friend will get her port placed on Wednesday, she has a follow up with her oncologist Friday and will begin chemo on Thursday of the following week.

Do you know if only having one kidney would be reason enough to not use oxplatin or avastin? Or, might it have to do with where the remaining tumor is? From what I understand, it is under and possibly wrapped around the inferior vena cava.

I realize that you are all in the midst of your own battles, or supporting loved ones in this battle and I do appreciate you taking the time to respond!

I plan on going back to see her again within a couple of months after she starts chemo. I know that the first couple of months she will have plenty of support from her family and friends where she is. But, after those couple of months I know the support fades a little bit.

She is going to ask her oncologist about oxyplatin and avastin and I also told her that while I know she trusts her oncologist, that I will continue to research for her and that she should NOT rule out a second opinion. I almost feel as though she will only be ready for that if her first regimen (whatever that may end up being) doesnt work. I hope I can gently convince her otherwise. And yes, I may get pushy once I feel like she has recovered enough from her surgery to be able to handle it.

Sorry to come here and ramble so much. I read a lot of your posts, but don't have much knowledge to contribute. I just want you to know that all of you are very much appreciated!!!!
Thanks again!