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Old 03-29-2008, 09:49 AM   #1
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Unhappy Me- 37yo w/ stage 3C rectal cancer -mom of 2 1/2yo old

Hello,* I'm 37 and recently diagnosed with IIIC T3 N2 M0 rectal cancer.* I had bleeding in stool that I thought was hemorroids.* Took a long time to get it checked, just thought it was related to having been pregnant, diet etc.* Had colonoscopy 2 weeks ago, they found a mass that ended up to be a 5cm tumor that did go through my wall with 4 of 33 lymph nodes taken out positive.* I will be on Chemo (folfox - 5fu, lucovorin) for 6 months with 2 months radiation w/ 5fu.* My treatment starts in 2 weeks.* I am trying to be positive, but I am afraid of the port with chemo and the side effects.* I need to somehow be an energetic mom, and avoid all of the sickness my preschooler brings home.* I am going to have us wash hands often, and he is in a small daycare, but there are always colds and I'm afraid I'll end up with pneumonia.* Are there any parents of young children dealing with chemo/survival like me?* My husband is wonderful and supportive I don't want this to be too hard on him. My son is my world and we have always been close and have played together.* I am trying to teach him to do much more himself - because that is our job as parents...to eventually teach children to be independent.* I just want to hear from other survivors whether parents or not and how they got through it.* Please I need advice.

Last edited by solscapes; 03-29-2008 at 10:07 AM. Reason: not enough info

 
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Old 03-29-2008, 03:45 PM   #2
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Re: Me- mom of 2.5yr old stage 3C rectal cancer need answers

I'm 42 years old with stage IIIC colon cancer. My husband and I don't have kids so I don't have any advice on that subject. I noticed that you are afraid of getting a port. I wanted you to be aware that having a port isn't a necessity. I don't have one and am doing fine with my infusions. A port is often installed to makes the lives of the nurses and doctors easier without regard to the patient. Many people with ports defend them saying that they don't want their veins ruined. If you have a competent nurse administering the IV and since you are only 37, you may be able to go without it. I have a friend who is 60 years old. He has been getting an infusion every week for over 9 years without a port. It can be done. Another thing worth looking into is XELOX instead of FOLFOX. I go in for a 2 hour infusion of Oxaliplatin every 3 weeks and then take Xeloda tablets every day for two weeks with a week off. According to 3 doctors I consulted, the efficacy of XELOX is the same as FOLFOX but it much easier to deal with. Personally, I'd be miserable with a port hooked up to a fanny pack that I'd have to carry around. Don't tablets sound much easier?? (especially with a young child to take care of.) I just wanted you to be aware that they may be an easier treatment option for you. Please look into it and get additional opinions.

 
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Old 03-29-2008, 07:02 PM   #3
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Re: Me- mom of 2.5yr old stage 3C rectal cancer need answers

Thanks Heidi, I'll look into the other drug. How are you doing with your chemo? Have you had radiation? What can you tell me about your experience? If you don't want to get into those things thats OK too. Thanks for responding to me

 
Old 03-29-2008, 08:13 PM   #4
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Re: Me- 37yo w/ stage 3C rectal cancer -mom of 2 1/2yo old

Hi,
I am a little confused as to why you had your surgery first, then the chemoradiation/chemo? The usual course is to diagnose, chemoradiation first (this is for rectal cancer, not colon), a rest period, then surgery, then, if necessary, adjuvant chemo.

Which treatment is starting first? I am assuming the chemoradiation. I totally agree with the other poster, particularly during the radiation. You do NOT have to agree with the infused 5FU during radiation. It is SO much easier to take the Xeloda during that time. Radiation is difficult enough without the added strain of having to have a fanny pack/pump with you for the entire time. I started my radiation with that pump and after one week switched to the pills. Besides the logistical aspect of it, at least for me, there was also a psychological advantage to not having the darned pump with me 24/7 for 5 weeks. I did MUCH better on the pills than the pump. On the pump, I was LOSING weight and the rad oncs were so upset by that. I was tired, had diarrhea-it was a nightmare. This doesn't even touch how difficult it was to adjust to that pump all the time. In my opinion, it does interfer with your life. Driving was not a whole lot of fun, not to mention the seat belt always hitting the port with the needle, taking a shower was considered a no no but you are allowed to take one with a WaterPik, but it is still not the same. Sleeping was difficult with the pump noise (although it was minimal) and the tubing coming out of my chest. All in all, it was a miserable experience and I felt so overwhelmed and SICK-not just physically sick but sick like a cancer patient. With the pills, yes I was still sick-I still had cancer, but it wasn't like I was reminded of it 24/7. Also, the side effects were minimal. In all the studies, Xeloda has been proven equally effective as 5FU/leucovorin and in most studies it has been shown to be better at tumor shrinkage than the 5FU. However, it is expensive so that might be an issue. In addition, some oncs just are not comfortable with the patients being in control of their treatment. The oncs sometimes feel that the patient might not take the pills, etc. This is something that you will have to decide for yourself. If you feel that you will take the pills to enable the radiation to work better, then just tell the onc that you want the Xeloda instead. If you also wish to do XELOX instead of FOLFOX, I am a firm believer that you as a patient have the right to insist on it with your onc. If he says no, then be specific and ask why?? As for not having a port during the chemo treatments themself, that is an issue that I have to tell you not many oncs are comfortable with. I had a port but as soon as my radiation was over I had them take that thing out. Mine was annoying, hurt and became infected. I know that many people do well with them but I was not one of them. On other boards, I have heard people talk about having reactions with getting oxi directly in the vein but I did not encounter anything like that. I would just bring that aspect of the treatment up with the onc and see what he/she says. But yes, it is possible as I was one that was going to do it. I had one infusion of oxi and had a SEVERE reaction so never did it again.

As to worrying about colds, etc. there really is nothing that you can do about it. Just standard common sense precautions are about all that you can do. As to feeling fatigued, I can tell you that I, and I believe most others, will tell you that the radiation will wipe you out much worse than the chemo by itself. But, it is manageable, however, there are a LOT of things that you have to do and not do. Skin care, foods to eat/not to eat, etc.

Like others before you, you will be fine. Let me know what help you might need.
Jaynee

Last edited by moderator2; 03-29-2008 at 08:22 PM. Reason: please do not ask members to post against the rules - you need to read them too

 
Old 03-29-2008, 10:32 PM   #5
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Re: Me- 37yo w/ stage 3C rectal cancer -mom of 2 1/2yo old

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

Last edited by solscapes; 03-29-2008 at 10:47 PM.

 
Old 03-30-2008, 11:43 AM   #6
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Re: Me- 37yo w/ stage 3C rectal cancer -mom of 2 1/2yo old

Xeloda pills is taken instead of the 5FU infusion. Xeloda is converted in the body into 5FU and some studies have shown that it may be even more effective than the infusional or bolus 5FU. 5FU has been used for many years in colon cancer treatment. Since the early 2000s either Oxaliplaten or the chemo Irenotecan (Camptosar) have been added to the 5FU (or Xeloda) for an increased survival benefit. If you should be allergic to the Oxaliplaten, then the Camptosar might be tried instead.

Leslie

 
Old 03-30-2008, 05:02 PM   #7
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Re: Me- 37yo w/ stage 3C rectal cancer -mom of 2 1/2yo old

Quote:
Originally Posted by solscapes View Post
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
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

 
Old 03-30-2008, 07:37 PM   #8
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Re: Me- mom of 2.5yr old stage 3C rectal cancer need answers

Thanks for the further info - I have now printed it out since it was so much stuff to know that will help me.

You're awesome! I am learning there many helpful knowleadgable people out there....and a few really good ones

Jen

 
Old 04-14-2008, 12:23 AM   #9
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Re: Me- mom of 2.5yr old stage 3C rectal cancer need answers

I'm not sure why people are having problems with their ports but mine is great. I would recommend it. Also with the kids just keeping your hands clean will help. Wash them often with an antibacterial soap and carry the antiseptic hand cleaner that you get at your pharmacy in your pocket. Good luck

 
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