What Do I Do

Other_Half · March 2004

OK gang, here's the story:

My far better half has had the second colon surgery. Then the 5FU I think it's called. While taking that, it spread to the liver.

Chunks of liver removed. Now on Oxaliplatin (Eloxatin) every 21 days and Xeloda - 1500mg 2x day for 14 days after each treatment.

What do I do to provide support besides be here when needed?

Other_Half · March 2004

One more question:

I've been wandering these threads for a couple of days.

Is there anybody here that's a long term (5 or more years) survivor of this mess?

lacar · March 2004

Hello Other_Half,
Your better_half is very lucky to have you as part of his/her support system. You must care a great deal about him/her if your on here searching for ways to help them feel better. Some of the side effects that I experienced with the oxaliplatin was the "neuropathy like" symptoms. If the hands and feet get cold or touch anything cold it feels like pins and needles, sometimes hand and foot cramps. So, they need to keep the hands and feet warm. If I needed anything out of the refrigerator, I'd use a pair of gloves. Drinking anything cold felt like swollowing needles or broken glass. Putting anything in my mouth would cause my jaws to spasm but that would only last about 10-15 seconds and then the jaw would relax. The hand, foot, and swollowing cold fluids sensation would last about a week. You still need to stay hydrated so, I drank alot of warm caffeine free tea until the cold sensation problem resolved. I ate frequent small snacks...couldn't eat big meals. Hope this helps some. Take care.
Lacar

jatag · March 2004

Other_Half said:
One more question:

I've been wandering these threads for a couple of days.

Is there anybody here that's a long term (5 or more years) survivor of this mess?

Hey other half....i was diagnosed with colon cancer in April of 1999 and had the tumor removed but it had spread to my lymph system. I ended up going through 3 abd surgeries (one for the tumor, one because of infection which left me with a colostomy and one to reverse the colostomy)Went through a series of chemo..... I went back to work as a firefighter almost a year later and worked normally for about a year and a half..... then the cancer metsed into my lungs...... i am since retired and have been on some form of chemo for about the last three hears..... in april it will be 5 years...... of dealing with this mess...... currently i am participating in a study program using erbatux....... in four weeks i get scanned to see how that is working....... I always try to keep positive and am thankful for every day.... the pressures of the cancer and other things unfortunately caused my other half and I to split up...... we are now just good friends.... remember to take care of you through this challenge ....... find a local caregiver support group and take the time to go and listen.......... it helps........
p.s...... I was on the oxyplatin and xeloda regimen and hated it ...... it made me feel lousy all the time...... I chose as an alternate to gat the oxyplatin and 5fh in a pump for 38 hours...... it was a little harsher for the first few days..... but it gave me some quality time towards the end of the two weeks........ And all the things Lacar talked about i can second...... i drank everything at room temp and it was a very cold winter........I still have some tingling in my hands and feet.
Keep your chin up and try to smile ........

my prayers are with you and yours......... The one thing i prayed for and finally got was peace........ in the beginning i worried way too much about things that never happened and got hit with things that i didn't worry about...... so i learned that worrying didn't change much in life it just kinda drove me nuts....... I started trusting God to take care of me and he has done a wonderful job......... laters jatag

KrisS · March 2004

I was diagnosed Stage 4 a little over a year and a half ago-peritoneal mets, liver and lymph node mets so I am no 5 yr survivor. But just two days after I got diagnosed (with what was thought to be Stage 3 disease), I had a client who came to me with a friend. I can't remember how the topic came but her friend happened to mention that she had had colon cancer with liver mets which were removed surgically and followed by 9 mth of chemotherapy 10 yrs previously. I wanted to run over and hug her. Hopefully your better half will be able to relay a similar story in a few years.

Just having someone around to give some encouragement especially on those "down days" is so helpful. I am single and until 8 mth ago I was living far away from family, but friends would drag me out for short walks, when I was feeling a bit tired out from chemo and probably would not have gone without a friend claiming her silly dog needed some exercise. Now I live near my sister and her family. I go over for dinner most nights. I suspect that if she asked if I wanted something to eat, I probably would say no, but having it sitting there, I eat well.

In reading all the posts I think that being the caregiver has got to be in many ways tougher than being the patient. So be sure to take care of yourself also.

Best wishes,

Kris

Kris

shmurciakova · March 2004

Hey.....I had to take Xeloda, haven't had Oxy. I took Camptosar/Xeloda for a liver met/surgery. I can tell you that from the surgery I felt like i had been mauled by a bear for about 6 months! Lots of scar tissue, so give her lots of tummy rubs! That will help loosen up the scar tissue. Xeloda, I can tell you sucks, bigtime! I am a forest ranger and at work I hike ALOT. That stuff just ruined my summer. My feet were all red and puffy and peeling.....blisters galore! If she walks alot she might want to consider taking 5-FU instead. As for what you should do in general. Well, one of my biggest fears/worries is the idea of leaving my husband if anything should "happen" to me. Try to show her that you are capable of carrying on through all of this s___. TALK to her and don't be afraid to show your concern. Tell her you love her and give her compliments (cause her self esteem may be low). I don't know what else to say except good luck! -S

spongebob · March 2004

Ahoy, Other_Half -

You are doing wonderful thkngs just by coming here to find out what you can do. The good news is that liver mets can be beat - read StacyGleaso's personal page. You'll probably hear from her soon.

Just being there for your better half makes all the difference. Helping keep the attitude alive is extremely important and beneficial.

Best regards

- SpongeBob

jsabol · March 2004

Hi Other Half,
"Just" being there is plenty. I find that a big hug and pat from hubby helps me to feel calmer, and he reminds me freg that "we'll get through this". My dad died of recurrent colon cancer at age 85; I hope to make it those add's 30+ years. I have a friend, who, unbeknowst to me, is a nearly 20 yr colon cancer survivor...never knew until she heard I was diagnosed. There are always people who beat the odds...even if the odds are 99 to 1, SOMEone has to be the one!! Regards, Judy

Unknown · March 2004

jsabol said:
Hi Other Half,
"Just" being there is plenty. I find that a big hug and pat from hubby helps me to feel calmer, and he reminds me freg that "we'll get through this". My dad died of recurrent colon cancer at age 85; I hope to make it those add's 30+ years. I have a friend, who, unbeknowst to me, is a nearly 20 yr colon cancer survivor...never knew until she heard I was diagnosed. There are always people who beat the odds...even if the odds are 99 to 1, SOMEone has to be the one!! Regards, Judy

Judy, I like your way of thinking. That has always been my way too....somebody has to be in the "beat the odds" pool, even if it is only one.

Monika

Other_Half · March 2004

Thanks for all the replies yawl. Sorry I took so long to get back but I think we're both sort of avoiding, no pretenting everything is all ok.

Special thanks to those of you who had stories of long term survivors.

I may not be around much but you can be sure I'll be popping in and out from time to time.

Just for grins, you might enjoy raping Gollum:
http://starterupsteve.servepics.com/swf/gollum.html
(Warning just a bit of foul language.)

StacyGleaso · March 2004

Other_Half...

As my awesome friend SpongeBob says, I was a stage 4 kinda gal. I like to think of it as being an "over-achiever!" I was diagnosed Oct 2001, and today I am fine. I have my annual CT scan tomorrow (the 6th), and although I am concerned, I am not worried. Stay strong, and stay positive.

Best of everything,

Stacy

schoolgirl · March 2004

StacyGleaso said:
Other_Half...

As my awesome friend SpongeBob says, I was a stage 4 kinda gal. I like to think of it as being an "over-achiever!" I was diagnosed Oct 2001, and today I am fine. I have my annual CT scan tomorrow (the 6th), and although I am concerned, I am not worried. Stay strong, and stay positive.

Best of everything,

Stacy

Hi Stacy: My hubby Hunt has stage 4 colon cancer. 17 out of 18 lymph nodes effected, large tumor removed from colon, mets to liver. He has had camptosar, clear 45 days, CEA count reach 24.9 with spots returning to liver, he was dx in Feb 2003, been one year, he is on oxaliplatin and has one more round of this before he is scanned. He says he will be clear. He is a God loving wonderful man and I can not imagine life without him. Your survival story is a wonderful, more people in stage 4 or for that part with any cancer would love to hear your survival story. I brings HOPE in this world of cancer. My hubby is really positive and says... someone needs to be in that 5% survival group and why it be him. He has turned it over to God and his healing powers. God Bless you, and I pray for your contined good health. Schoolgirl

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