Diagnosed 2/10/07, stage IV, getting married 5/5/07

[KP]

I was diagnosed stage 4 july 06 and the dr at the time said 6 months, don't bother with chemo. This was two weeks after our first child, Isabel, was born. I was devastated. (36 yrs old)

#1 Don't let people "take away your life" - you decide to live and to keep the attitude of a thriving person. The cancer has given me the opportunity to live my days to their fullest! This is something everyone should do anyway! As stage 4 cancer survivors (which begins with diagnosis!) we are aware of our mortality and can live richer lives.

I left the care of the negative docs and found a great oncologist here in Seattle at the Swedish Cancer Institute. Isabel is now 8 months old, and I am happy for every day with her.

My condition is similar to yours, I have three mets in the liver and they say they are too large to do a resection. The chemo (5FU + Oxcylaplatin + Avastin) was shrinking them for the first 10 treatments, but since I have gone off of Oxcylaplatin they haven't changed. But even that is positive. I am on #14 and doing okay.

#2 Life on chemo is pretty good! My hair thinned a bit but nobody can even tell I have cancer! I look fairly healthy and originally I lossed like 70 lbs (baby weight too) and now I am back to my pre pregnancy weight. Its like my body is back to normal. I was super nauseaus the first 3 months, I think more from the tumors than from chemo.

#3 Keep positive. Your body knows the difference.

You can do this. We are all doing so well and are so lucky for the advances in medical care. It IS inspirational to hear the stories. I am sure you are scared (me too) and worry, wonder "why me?" and all of that - and that's okay. But, if you can keep your hope it will make all of the difference for your care.

CONGRATULATIONS ON YOUR WEDDING!

If you want to email or ask other questions about what I've experienced I'd be happy to share with you.

Karen

[missjv]

hi karen,
hi read your story glad to see your doc was wrong as well. how can a doc tell you that you have 6 months to live and don't bother with chemo? what a loser. 3 liver mets can be dealt with especially if yours have shrunk from the chemo. read anita's story on here she had 8 mets to liver and had resection, rfa, and chemo and has been ned for 19 months now. i had 3 liver mets granted they were not large but i did have resection surgery in december 06 and i just had clean scan results and am going through 6 more months of chemo so it will be 11 months total chemo. have you asked your doc to switch chemos? if you are no longer on oxaliplatin then you could go to campostar along with your 5fu and avastin sometimes switching drugs has better results. also there is a thing called hepatic artery pump which send chemo directly to liver and you can do that along with systemic. i have the pump even though my cancer was surgically removed and ultra sound of my liver showed no further growths i still had it put in as an extra boost to lessen the chances of recurrance in the liver. you can also check into cryosurgery, alcohol ablation, they are 2 other things that can be done to liver tumors. i hope you canned your 6 month to live doc. i had the same situation but i was told 2 years which is bull crap. i do not have a 2 year experation date on my forehead so im not even worrying about that. well good luck.

missjv

[Erika]

Cindy-
Are you overwhelmed by all the responses yet? You have obviously struck a chord with many on this forum- myself included. Our stories are similar. I was diagnosed with stage IV colon cancer with mets to the liver at 22. I had 2 liver resections and an HAI pump as part of my treatment. My husband and I were married while I was still undergoing therapy. We have been happily married for over 5 years.
Send me an email or a pm if you'd like to chat. I'd be happy to tell you more about my experience with "the pump" and lend a listening ear if you need one.
Erika

[georgemma]

Dear Cindy -- Thank you so much for posting and including the link to your web site. You are beautiful, and so are your friends, family and Jared. It is wonderful that you are being proactive in your treatment and have so many things to look forward to. All of this will hlep you on this journey. We will all be thinking of you and praying for the outcome that you certainly deserve.

[janb]

That was awesome Janet and congratulations for putting your two cents in to your former doctor! Congratulations on your positive attitude and dumping a non caring husband!

[Guest]

Hi Angels!
Joining the colon club was the most uplifting thing I did since I was diagnosed. All of you are amazingly supportive and positive. Today was a fabulous day! It was the best I felt since being diagnosed, perhaps due to a positive response to chemo but for sure b/c everyone who has responded puts big smiles on my face I went out all day for the first time in a month to see relatives and book a suite for my wedding day! We splurged on a ocean front suite at the Huntington Beach Hyatt! $850 a night! I've never spent that much on any room but we justified for the following reasons...Now that I have to have chemo for at least the next 6 months and I need to be close to a Kaiser in case I get a fever so My bachelorette and Jared's Bachelor party scheduled in Sin City aka las Vegas was cancelled, our joint Bachelor/Bachlorette Party in Palm Springs was cancelled, our honeymoon in Vietnam....Yes, you guessed it cancelled! I also don't know how I'll be feeling b/c each day varies. I'm a little, actually really scared of the side effects of chemo. I hate the unknown! I know chemo effects everyone differently, I just hope I handle it well!

My oncs have said to stay away from raw fruits and veggies. I crave salads and fruit like no other! I'm getting sick of canned fruit.
Does anyone eat raw fruit and veggies at certain points during chemo?
Has anyone gotten a flu or cold while getting chemo?
I know I need to stay away from big crowds, but I really miss teaching and I want to go back. I just worry about getting sick while on chemo.

I have the craziest story to share with all of you about something that happened yesterday...

As some of you may know my friends and family are raising money to build a "Garden of Dreams" for Jared and me, so I went to a nursery down the street from my house to look at some plants with my b/f Jamie and sister, Roxanne. My sister for some odd reason asked the owner if she noticed my picc line and told the owner I was sick. The owner said she did notice and asked what I had. We told her colon cancer and her eyes started tearing up and then she held my hands and told my her 29 year old daughter had colon cancer also! She couldn't believe how well I looked b/c her daughter was very sickly and weak. She began to tell me more about her daughter. It was a bit eerie b/c here are my similarities with her daughter:
1. young
2. vietnamese
3. engaged
4. live with our fiancee
5. her mom (the owner) and my mom have the same first name "Hong"
6. our fiancees are standing by our side
7. getting married soon
8. recently diagnosed
Her daughter is having Radiation everyday and chemo once a month. She told me that her daughter's body from the neck down turned black. It was really sad b/c Hong told me they didn't know how to handle her daughter's so they closed themselves from the world, didn't let anyone know of her illness. Hong told me that her daughter is very depressed, cries all the time, does not have hope like I do, and needs to talk to someone like me. I gave Hong my phone number, e-mail, and website. I want her to get into the colon club b/c I think she needs to have more hope to raise her spirits. I think its weird how things work, b/c my visit to the nursery had so much more purpose than picking up some plants...I feel I was sent there to help her with her battle in some way. I just hope she contacts me soon so that she can hear all the positive stories all of you have to tell! xoxox, Cindy

[missjv]

hi cindy,
your right chemo effects everyone different. i have luckily had no major problems a little nausea and some feet tingles and being very tired on chemo days but other then that things are ok. go out and walk everyday and exercise. i go to the ymca 5 days a week and do weights and 1 hour of cardio every morning then at night after dinner we walk or ride bikes for an hour and the exercise helps with the fatigue. as far as raw veggies i am bad i eat alot of salad and i like to snack on raw veggies with dip and raw fruit as well so i just make sure i clean everything real good with warm water and veggie wash stuff but i have not stopped eating them. as far as crowds and stuff just get copies of your blood counts and if they are low then try to avoid lots of people. doc told me one of the worst things for germs is shopping carts and also the debit machines at stores so carry along hand sanitizer with you and use it after touching those kinds of things. eating right and exercising i think is the key keep your body strong and chemo hopefully will be easy for you. also boost shakes with protein help as well i think ( my opinion) well have fun with the wedding plans and there will be plenty of chances in the future for your travels when you are feeling better.

missjv

[guest]

My husband has had 12 FOLFOX treatments, 1 year later completed 7 weeks of Xeloda/radiation treatments for his 1st recurrence, and is now on another chemo for 2nd recurrence. He has eaten a ton of grapes as he says it would relieve the nausea better than a lot of things. He has found out that many times eating will get rid of the nausea if he can get that 1st bite down and he found the grapes were the easiest 1st bite.

Lately he has been on a salad kick (lettuce, tomatoes, and cheese with no dressing). I keep a bag of the cut up lettuce, but I did just read in Consumer Reports that even though it is supposed to be ready to eat it isn't. Anyway he has eaten a bunch of it and no problems. I guess we have been lucky on that part. I will start cutting up my own lettuce so I can make sure it is washed really good.

He also got a upper resp. infection in January (everybody in the house and town had it ). His fever got up to 102.5, and the Dr. called in some Antibiotics for him.

He has continued to work and go to church during his entire treatments. He does keep hand sanitizer in his pocket and uses it everytime he touches someone or things like door knobs. As soon as he sits down in church he breaks out his hand sanitizer and gives me a handful too because we have usually shook a few hands on the way in.

[Carolyn JB]

Cindy,

LOVE your webpage - your engagement pictures are gorgeous! You look beautiful and happy!

I am 36 years old, with a 6 year old, and was diagnosed with Stage IV in Jan. I have a tumor in the liver and some nodules in the lungs that we are watching. Last Monday was my second dose of chemo and I have had more sensitivty to the cold than the first treatment and I seemed to be a little more tired that week (but I also had a super busy weekend right before chemo, then the time change so maybe that was it too). Other than that it hasn't been horrible - so far my hair has stayed the same. I do have someone here to help the day of chemo and the next day - help out with my 6 year old.

I love your energy and spirit!
Carolyn

[tammy figg]

I loved your engagement pictures. You have so much to look forward to with your day approaching. When your days get tough look at those. I recall writing in a journal right after I was diagnosed, I now read it after being in remission for 4.5 years and it helps me see where I have come.

I am also awed by the power of people in our lives. When you get sick, those that love you rally around you. Let them pick you up when you need it, and allow them to carry you when you fall apart on days.

When your special day arrives, I hope it was as good as mine. As I mentioned in my other post, I was 4 weeks out after surgery and walking down the isle. It was the one day I told all that I knew "No tears", it's a day of celebration, and no talk of Cancer. When you dream about getting married you don't picture these huge obstacles before you are even husband and wife.

I have wrote on this site before that if anyone needs help with medical bills etc, that is what our Foundation does and we would always be glad to help if you ever need that.

Stay positive and enjoy all the plans you are making for your future.

Tammy Figg
www.figgtree.com