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Cancer: Colon Message Board


Cancer: Colon Board Index


[QUOTE=solscapes;3508818]Jaynee, thanks so much for your info. As to why surgery 1st then chemo: I had my surgery first because they thought they could do it well with good margins laparoscopically and it was almost Sigmoid but it is now decided it was just within the rectum. They didn't think the tumor was too large at 5cm. My surgeon said it went very well w/ good margins. But pathology showed micro hole in wall and spread to 4 lymph nodes. Now we are dealing with 6 mo adjuvent chemo and radiation. 2mo Folfox , 2mo radiation and 5fu, 2mo Folfox
My onc did mention pills during chemo and I will make sure I get the details especially with the 2nd onc I am meeting with, since I am now more knowledgeable from you and Heidi. I will check into taking Xeloda during that time and all through. You have made very good points about the pump and I would be unhappy with those things as well. Xeloda would be better re: not using the pump, minimal side effects, equally effective etc. as long as it was trully equal and didn't increase my risk factors. The expense you mention could be dealt with for a better quality of life during. Maybe if the risks are shown higher it may be because (as you mention) a patient would be responsible for taking the pills. So you had a port, then after radiation you continued on Xeloda without it so you were getting IV's OK. Also re oxy - you mentioned you had a severe reaction and never did it again...so Xeloda replaces oxy with cab right? I wasn't quite understanding that part.

Thanks for the info about sickness and fatigue. You mention I will need to know lots about food and skin care can you tell me what I need to know? or direct me to a site/link. Are you through your treatment and are you and considered a 'survivor'?
sincerely,

jen[/QUOTE]

Let me clarify somewhat first about the Xeloda. Xeloda replaces 5FU/leucovorin NOT the oxi. FOLFOX is comprised of 5FU/luecovorin/oxaliplatin and XELOX is comprised of Xeloda/oxaliplatin. Regardless of which combination you go with AFTER the chemoradiation, you will always get the oxaliplatin. I origanally had a port put in right before my chemoradiation and for the first week of those treatments, I was on the 5FU only. That is when I just could not tolerate the pump so I switched to the Xeloda pills. I stayed on the pills for the entire time I was having my radiation treatments. Because I did not fare well with the port, I opted to have it surgically removed not too long after all of my radiation treatments were done. Let me say that this was NOT my onc's recommendation. He wanted me to leave the port in because of the possibility of more chemo down the road. You need to understand that I was a very early stage rectal cancer and I did NOT want the standard resection. I wanted a surgical procedure called a transanal excision where they go in through the anus, do what is called a full thickness excision of the tumor (bad analogy but much like coring an apple) and if, in the process, they are able to get some lymph nodes they do. There is no abdominal incision with this option. To accomplish this, I had to have my bulky tumor shrunk down as much as possible. Approx 8 weeks after my treatments ended, my surgeon at the time (without scoping me-only based on a DRE) felt that the tumor had shrunk enough to have this surgery. He attempted it but backed out and said that I should have more chemo to try and shrink it just a little more. That is when I attempted the XELOX protocol but it was the severe reaction to oxi that made me discontinue that drug. For the next 5 months, I did only the Xeloda pills. At first, I was completely devastated because the addition of oxi is standard to most chemo protocols. In my case, however, the statistics show very little benefit from the addition of oxi as I was only a late stage I or very early stage II so it really was no big deal not to have it. That is NOT the case, however, for later stage colorectal cancers. The addition of the oxi does make a difference (about 7-9% depending on which study you look at) which is why it is added to the protocol. As for the port, well, I have to be honest, I hated mine, but I have to say, most people don't. Maybe my body just didn't like it or something but it irritated me all the time. While I hated every minute of it, there are benefits to it. Chemo can wreak havoc on your blood vessels regardless of whether or not you have a port. It can narrow the vessels and make them difficult to access. Prior to chemo (even the Xeloda), no one ever had any trouble finding my veins for blood draws, IVs, etc. Now I dread going in every 3 months to get my blood drawn. Sometimes I end up being in there for 45 minutes and they attempt anywhere from 4 - 7 times before they can find a vein. Last November, I went in for my first post-op colonoscopy. I am allergic to the normal sedation so I had mine done in the hospital. There were two anesthesiologists, one on each arm for almost an hour trying to stick me to get the IV in. I usually can handle most of this but I was getting overwhelmed. They had to give me laughing gas before they were able to get it in. So, yes, there are benefits to the port for the oxaliplatin part of the chemo.

As for radiation issues, I did not have any problems to speak of, but it was only because I was EXTREMELY diligent about taking care of myself. First of all, regarding food, do NOT eat the following when you are undergoing radiation. Fresh veggies, salads, most fresh fruits, nuts, popcorn, corn, whole grains, basically hard to digest foods. The radiation is irritating your colon and common sense tells you to eat bland, easy to digest foods. You can eat cooked veggies (moderation), cooked fruits (applesauce-I also ate baby food fruits -pears, peaches, etc.), bananas are ok, meat, potatoes, white rice, white bread, etc. Stay away from overly spicey foods and overly fatty things also. In addition, the radiation, while good at killing off the tumor cells, is equally good at killing off the good bacteria that is in your gut and intestines. You need this bacteria for digestion. I would highly recommend taking a probiotic to help replace it. I found a product in the tummy aisle made by Digestive Advantage labeled Irritable Bowel Syndrome. It was just lactobacillus which is the good bacteria that you need to help with digestion. There are other probiotics out there but you really need to be on one. The radiation will keep killing the bacteria off and you just need to keep replacing it. Honestly, you will never get ahead on this, but by getting more lactobacillus into your system you will be able to keep things more at a status quo. I took one pill in the morning and one in the evening and I was very careful about what I ate and did not have the diarrhea issues. Also, if you are on the Xeloda during this time, you need to be know that you should not be taking any extra folic acid supplements. Let me backtrack here and explain why. If you have noticed, 5FU always goes along with leucovorin (which is a derivitive of folic acid). 5FU does not stay around long in the body, however, the addition of the leucovorin allows it to remain in your body longer. Xeloda, on the other hand, does not require the leucovorin. Because Xeloda is metabolized differently (it is ultimately turned into 5FU in the body) it stays around longer in the tumor tissue thereby making it more effective. If, however, you begin adding large amounts of folic acid to your diet you will allow the Xeloda to remain in your body longer even while you continue to take more pills. So, don't take extra folic acid supplements. Normal foods are fine but do be careful about eating extra large amounts of breads and grains. In the US, these products are fortified with folic acid. Now, I ate one of those Pillsbury refrigerated low fat breadstick containers every day during my radiation and I had no problem. I just wouldn't go around eating 4 bowls of cereal, a half a loaf of bread, biscuits, more cereal, etc. That would be going overboard.

I would also highly suggest that you drink, drink, drink. Juice, water, milk, soda, more water, anything. I had a bunch of those water bottles that you can refill and I just made pitchers of Crystal Light or whatever and had one with me all the time. Radiation can fry your inner organs and while there isn't a lot to do about that, keeping yourself hydrated not only allows you to feel better, but it helps minimize the damage to the internal organs. So, drink! Dehyrdation is NOT your friend here.

As for skin care, well, you can never do to much here. If you don't use something, you will regret it. I used aloe vera gel (it must be alcohol and dye free) liberally after each treatment. Remember that the area you need to treat is MUCH more than just around the tattoo marks. EVERYTHING in between needs to be taken care of. This includes the vaginal area as well as the anal area. If you have the mistaken assumption that your tush cheeks will protect your anus, you will regret it. The anus (and for further information if you ever need it, the lips and nipples) burn much easier than regular skin. In addition, radiation thins and dries the skin even further. When this happens to the delicate skin around the anus, little fissures (tears) occur and it can hurt like you know what ever time you go to the bathroom. Sorry to be so blunt, but you need to know about this. You need to slather this area liberally with aloe vera gel right after treatment. I then used something called Radiagel (or you can use Radiacream) in the middle of the day (my treatments were first thing in the morning-for other treatment times just adjust) on the entire treated area and then in the evening, use pure cocoa butter and Johnson & Johnson's 24Hour Soft Lotion. Most things you can get at the local WalMart or Walgreens, but the Radiagel(cream) has to be ordered off of the internet. I didn't burn at all and avoided most of the anal issues that plague people undergoing pelvic radiation. Because the radiation dries the skin, be very very careful about using products on that area that contain too much alcohol, as alcohol also tends to dry the skin. Read labels carefully. Protect yourself from day one and avoid the problem all together. In addition, wash with a glycerin based soap, not Dove or Ivory or those types of soaps. They will dry your skin even further causing more problems. I used those soaps that come in 'slices' that you get in gift stores, boutiques, etc. One more vital thing about skin care. WASH EVERYTHING OFF THOROUGHLY BEFORE EACH TREATMENT. If you have anything on that has anything metallic in it, you will burn with a treatment. Just wash carefully before each treatment.

I hope I don't offend anyone here but you also need to know about the vaginal issues. The radiation can cause scar tissue or adhesions to build up in the vaginal canal. This will cause you to have very painful intercourse at a later time (some people just can't even have it because it is so painful) and painful pelvic exams. I was told to use a vaginal dilator during the treatments to help keep the area 'open' and to avoid getting scar tissue. If I chose not to use the dilator, I was told that I could have sex. Ok, this is a difficult subject but better to know now than later. I chose to have sex as much as possible and the rad onc told me to try 2-3 times a week and that should keep the vaginal canal open. I have heard of SOOOO many women who did nothing during radiation who know have to basically break the adhesions or stretch the scar tissue and they say it is absolutely painful. I would HIGHLY suggest you talk to either your GYN or rad onc about this. If you have a good GYN that you feel comfortable with, I would start with him/her. My rad onc suggested doing something during treatment to avoid this problem down the road and my GYN (whom I just love) concurred. I also asked her (my GYN) for a Rx for premarin cream. The reason you will probably need this, or something similar is that radiation has a high liklehood of throwing you into menopause. It didn't with me, but for most people it does. If you plan on having more children (for me this wasn't an issue) you should talk with your GYN immediately as there is a procedure that they can do to move the ovaries out of the way BEFORE radiation starts. I never investigated it so I don't know about it, but if the potential of early menopause is not something you want, I would talk to someone right away.

This is a lot of stuff, but really quite easy to manage. Just get all the things you need, talk with the docs, ask lots of questions and DO NOT wait for something to happen. Be proactive and avoid it and you will appreciate it later.

Take care.
Jaynee





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