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Help! Just been diagnosed with Stage IV Colon Cancer

terrical
Posts: 23
Joined: Aug 2003

My mother has just been diagnosed with Stage IV colon cancer and we are terrified. She is only 69. We just lost our father to lung cancer. We just can't watch our mother go, too. She had surgery to removed the tumor, but it had attached itself to her pelvic wall and the surgeon was not able to remove it all. She also had a small tumor on her liver, which he was able to remove. We just saw the oncologist this week. He said her cancer was terminal, but with Xeloda she would live longer. My father suffered terribly with chemo and it was the chemo ultimately that killed him, so my mother is very hesitant about taking the Xeloda. The oncologist told us that the side effects of this drug are mild. Is this so? Has anyone taken it? Is there any hope for my mother? Does anyone have any suggestions? Please help, we're desperate.

Tatie
Posts: 28
Joined: Aug 2003

I did not have Stage IV so I will not presume I can imagine how your mom and you feel, but I did had Stage III and survived, so I have some idea. One thing I know is that cancer is not as predictable as the doctors say. Sometimes it goes into remission and they just scratch their heads and shrug it off. I think the statistics only apply to conventional cancer patients: the ones who take the doctors' words as as sentence. But it is not. Yes, stage IV is a serious situation one can not ignore the fact, but I firmly believe one can never lose hope. The first thing to do is not to become a victim of cancer or resign to your "terminal" fate, second is to pray in faith, third is to get educated about cancer and what treatements are available - convetional and alternative and choose which ones to take. Chemo is not so bad, I read in Bernie Siegel's book "Love, Medicine and Miracles" that if the patient thinks of it as poison, he must stop it immediately because the body will treat it as such, if she can think of it as a "terminator" of the bad cells, it can buy her some time untill she becomes stronger in spirit and body and can fight it on her own. I believe there is hope for your mom, I would take the chemo treatment, and start praying and maybe do hypnotherapy, and nutritional program like the one described in "Cancer Battle PLan" or http://www.hacres.com/home.asp. Think positive and do not lose hope. God bless. Tatie

KrisS
Posts: 232
Joined: Apr 2003

The diagnosis of colorectal cancer is very scary, but Tatie's advice is great. Don't give up hope. I agree, I don't think chemo is that bad. I am 47 and have Stage IV rectal carcinoma. The metastatic nodules to my adjacent abdomen were discovered at surgery 1 yr ago. I was given oxaliplatin (another new drug that is helping in treatment of colorectal cancer) and 5-FU (an IV drug related to Xeloda) prior to another surgery. I worked during that time, and exercised, walking 2-4 miles a day and lifted weights to get in shape for the additional surgery. They found most of the metastatic nodules had disappeared at the second surgery 4 mth later. Unfortunately my tumor came back in numerous lymph nodes, liver and lungs after that surgery and 4 mth after my last chemo. I was fatigued and coughing. I was put on Xeloda as well as oxaliplatin. It has resulted in marked decrease in size of my lymph nodes and other tumor nodules. The side effects have been minimal. My hands and feet get red and irritated for a few days at the end of my cycle of chemo so I lay off doing as much hiking much for a few days.

I get oxaliplatin intravenously once every 2 wks and then Xeloda for 5 days. My stomach was a bit queasy for a few days afterwards initially (although I only actually vomited once). I think it is more related to the oxaliplatin, but it can occur with Xeloda also. There are a number of great new drugs that they can use to really help out that, however. My oncologist tried a couple and found one that virtually completely eliminated the problem.

I am back to hiking, lifting weights and itching to get back to work.

Although the chemo is unlikely to cure me, my oncologist reminds me that chemotherapy might be able to control things for quite some time, and there are some new drugs on the horizon which may help out even more.

A positive attitude, taking care of yourself- eating well, getting up and about, and enjoying each day go a long way in helping fight this thing.

My prayers are with you and your mom.

Kris

terrical
Posts: 23
Joined: Aug 2003

Hi Kris,
Thank you for your words of encouragement. You are living proof of why not to give up. I can't wait to have my mom read your letter. For the first time since we got the news that my mother was in Stage IV, I feel optimistic!

I do have a few questions for you. How did you treat your sore hands and feet? What dose of Xeloda were you on and how many rounds did you take (The doctor wants to put mom on 500mg - I think he said 3 in the a.m. and 3 in the p.m)? Do you remember the name of the drug that eliminated the nausea? Did you get mouth and throat sores or were you sensitive to hot and cold?

You are so young to have this happen to you, and I admire your postive attitude. You're going to make it. Please keep us informed of your progress. Thank you for sharing your experiences - you'll never know what a difference you made. God bless you.

Terri

KrisS
Posts: 232
Joined: Apr 2003

Hi Terri,

In answer to your questions. I am getting oxaliplatin intravenously and then take Xeloda-500 mg in the am and 400 mg in the pm for 5 days. This is repeated every 2 wks. I have had 5 doses of chemotherapy in 10 weeks on this go round. I had 6 weeks of 5 FU last summer, and 6 doses of oxaliplatin/5 FU last winter over 12 wks. Drug doses will vary depending on individual's height and weight and I suspect other factors. I believe that if given by itself, Xeloda would be given for longer periods.

I had no problems with my hands or feet for my first 3 treatments. Currently my feet get a bit sore on day 5 and 6 after starting. Initially I got a blister on a toe after walking a few miles. I now make certain I wear good quality walking socks from the sporting goods store and have put some Moleskin on sorer areas for a few days when I go walking for any moderate distance. I don't walk as much on those days.

The hand foot syndrome can occur with the older related drug 5-FU too, but with both drugs it is not inevitable that it will occur. I had no problem last summer.
There is a recent report of using Celebrex to reduce the problem and some information to suggest that the addition of Celebrex may improve the control of the tumor also!

For some reason only my hands were affected when I was on 5-FU and oxaliplatin last winter. They got a bit puffy and red and sore for several days and then peeled like after a sunburn. They didn't look so classy when peeling, but only were sore before that when they were red. I just used lots of hand lotion.

I never got a sore mouth. The tip of my tongue feels a bit odd, a bit like after you burn your tongue on a hot drink. I have not lost any of my taste this time round. I did lose mostly my ability to taste sweets about 4 weeks after being on chemo last winter and 6 wks after starting 5-FU last summer. It was not a big deal. I could still taste the healthy stuff, veggies, fruit etc. Having had a period when I lost my appetite, I can say I'd rather have an appetite with not much ability to taste. If you have hunger pangs, it still feels good to eat. I did not lose weight because of it. I did pass the Godiva chocolate someone gave me to my friends, since it tasted no better than cheap chocolate. I also stopped craving ice cream (which used to be my favorite junk food).

I am not aware of Xeloda or 5-FU causing hot/cold sensitivity. Oxaliplatin on the other hand causes a bizzare cold sensitivity in a fair number of people including me. Exposure to cold makes my hands and face tingle weirdly.

A number of drugs are used to control nausea. They gave me a bit of a smorgas board of them to try out to see what worked best. My pharmacist told me that many people do just fine with occasional compazine and/or lorazepam for nausea, and those have helped me some. I am currently on a new drug- Emend. The advantage of this drug is that it is designed to control nausea that occurs several days after chemo is given. I get all my problems on days 3 and 4 after my oxaliplatin. Anzemat also helped quite a bit. Zofran and Kytril didn't help me much. Even without anything, I only vomited a few times and still wanted to eat. Controlling the queasy feeling makes life more enjoyable, however.

Hope this helps. Best of luck.

Kris

RMGill
Posts: 20
Joined: Apr 2004

I've been reading several strings about people's experience with Stage IV Colorectal Cancer. Just last week, my CAT scan showed multiple mets on my liver and lungs. My surgeon was somewhat encouraging, but the oncologists was rather defeatists, basically said all he could do for me is give me a few more months to live. I start chemo in two days. Given the potentially harsh side effects of Chemo, I'm debating whether or not to go through with it. If there's even the slightest chance of living my life again, even for a few years, I want to fight on, but if its just a futile effort, why suffer more than I already will??? Even with Chemo, can I still work and enjoy my life activities of hiking and camping and snow boarding? Or will I be too sick to do anything? I'm only 34, which seems way to young to curl up in a hospital bed and wait for the life support machine to turn off.

terrical
Posts: 23
Joined: Aug 2003

Thank you Tatie for your words of encouragement. I know you're right about staying positive and not giving up, but we feel a little bitter right now. I'm making a copy of your reply to take to my mother this evening. I'll make a stop at the bookstore on the way, too, and purchase the book you recommended. We do have to change our attitudes. The cancer is here, fair or not, and we have to deal with it.

Have you taken chemo? Are you in remission yet? We will pray for you. Take care and thank you for responding to my plea for help so quickly.

Terri

shubunkin
Posts: 60
Joined: Aug 2003

mt heart goes out to you. I lost my mom to colon cancer a year ago. She was only 47. Do not ever lose hope. There is always that. Only God can predict the outcome. Not doctors. I know firsthand your fears and worries. It is a horrible feeling. But always smile when you are around her and keep her positive. That is most important that she does not lose faith. They only gave my mom 3 months and she lived 9 and I thank God everyday for that extra 6 months. If you ever want to talk you can email me cosmo@bayou.com My prayers are with you. Danielle

terrical
Posts: 23
Joined: Aug 2003

Dear Danielle,

Thank you for your kind words and good advice. I'm so sorry about your mother. I know you must miss her terribly, and I admire you for not losing your faith in God. I am ashamed to admit that I was angy with Him when I lost my dad and sister to cancer. I'm not anymore though, even after this. I know he has a master plan and we have to trust Him.

Thank you for your email address, too. I'll be in touch. My email is richardcalbert@hotmail.com.

Terri

Tatie
Posts: 28
Joined: Aug 2003

Terri, while in the book store, just browse and see wich books speak to you in particular or which ones you think your mom will like. Also there are a lot of books on the internet for free like http://www.commonweal.org/choicescontents.html.
I liked this one in particular because it gave me in depth information about all the cancer treatments available, I was starving for info at that time and I was satisfied with so much and info (260 pages) written very clearly by a son whose father had cancer and who was a doctor. There are a lot of web sites too (don't read the depressing ones though) made by the cancer patients wanting to share information, and browse through Amazon.com and see what books are available. I have taken chemo and radiation and I am doing well, I have no more cancer. Thank you for your prayers. I will pray for your mom, it's normal to be bitter but this should not be the major emotion. Gear up for a fight! :)))

vcavanagh
Posts: 86
Joined: Dec 2002

Terri,
Try looking at healthology.com
then find your way into "Colon Cancer."
This is a good site with plenty of up-to-date information on chemotherapy, side-effects etc., and talks about Xeloda as well as the others.There are about ten good articles. I hope this is of help. blessings on you and your mother.
Vincent.

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Ahoy, terrical -

First off I'd like to say that by reaching out to folks here at the CSN and sharing the thoughts, prayers, and positive attitudes of other survivors with your mom, you are doing a wonderful thing and she's lucky to have your support.

Two quick items since everyone has already given you some really great advice.

First for the feet/hands - I used two different things that really helped me: Bath & Body Works Mango & Shea Butter balm and I also used Mary Kay cosmetics night time skin treatment (don't you DARE tell the guys I told you this) Both worked great. (and if you get hungry the mango/shea butter is great on toast - just kidding)

For mouth sores, I used Zilactin oral swabs. They contain benzocaine (numbing) and an anti-bacterial to keep the sores from becomming infected. A lot of folks avoid the moth sores by sucking on ice chips when the chemo-techs push the nasty stuff. By sucking the ice chips, a patient can significantly reduce the blood flow in the mouth and thereby avoid some of the side-effects (or at least so the theory goes).

Hang tough, and as my colleagues say - attitude is everything. A good book I read is "Chicken Soup for the Surviving Soul"; it's full of uplifting personal anecdotes from many, many survivors.

Keeping you and your mom in my prayers...

- SpongeBob

rep801's picture
rep801
Posts: 26
Joined: Apr 2003

Sorry to hear the news. As others have indicated fear of chemo shouldn't keep your mother from taking the Xeloda. I have been on Xeloda for 18 months (on 2 weeks off 2 weeks) and my side effects are minimal.

Hand/Foot is the only significant side effect I have had, and by being proactive with lotions/creams you can minimize that. Everybody probably has their own concoction so you may need to experiment. I have found that Avon Moisturizing Therapy and Zim's Crack Cream (yeah I know it sounds silly) have helped me. Also, using a sloughing lotion on the feet to get rid of dead skin before it builds up has been helpful also.

God Bless

Agent

rep801's picture
rep801
Posts: 26
Joined: Apr 2003

Sorry to hear the news. As others have indicated fear of chemo shouldn't keep your mother from taking the Xeloda. I have been on Xeloda for 18 months (on 2 weeks off 2 weeks) and my side effects are minimal.

Hand/Foot is the only significant side effect I have had, and by being proactive with lotions/creams you can minimize that. Everybody probably has their own concoction so you may need to experiment. I have found that Avon Moisturizing Therapy and Zim's Crack Cream (yeah I know it sounds silly) have helped me. Also, using a sloughing lotion on the feet to get rid of dead skin before it builds up has been helpful also.

God Bless

Agent

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