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nettie4
Posts: 145
Joined: Mar 2004

Hello i am 35 yrs old and at age 28 diagnosed with colon cancer while pregnant at the time. at the time 4 of 14 nodes were postive with no mets anywhere else. in nov 2002 the cancer had returned 3 tumors in gastro area and 17 between my two lungs. they said at my home oncologist and surgeon nothing we can do go home and write notes to your children (who are 7 and 5) and say goodbye. so i went to Mayo in Mn. i underwent 2 major surgeries within a month of eachother and am now still batteling with the lungs again. i am on treatment getting the new drug that just came out and trying to stay afloat with small children and a family. i have been having a really hard time emotionally lately and just lookin for a little support. its good to see the stories on here. does anyone have nerve problems who has been on oxcili and if so what did you do?

StacyGleaso's picture
StacyGleaso
Posts: 1246
Joined: Mar 2003

Hello Nettie...

Although I have no experience with oxcili, I do have experience with mets. Mine was originally colon, with a side order of liver. That was over two years ago, today I am fine. Keep the faith that whatever the outcome, it is the best. Do not lose sight of how hard you need to fight for your children. Take each day as a precious gift, and enjoy every moment with your kids. We are all here for you, and attitude is half the battle.

Come here anytime you need support, to vent, or just talk about something to get your mind off things.

Friends are all around you,

Stacy

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Hi Nettie,

Welcome to the semi-colon club. I was 39 at dx and had a 20 month old. Apparently was preggie with cancer and didn't know it. I have 5 kids so I know how it is to juggle cancer and kids....and ALL the emotions that accompany this journey. Writing notes to your kids is a good idea but not b/c you think you're going to die any time soon. I am sure we all have death thoughts but we cannot focus on that or we become a self-fullfilling prophesy.

Good for you that you seeked a second opinion. I go to Mayo (I live in MN) too and love their system....works like a Swiss Watch. But they too fall short on cancer nutrition and integrative medicine. Have you looked into complementary medicine?

www.cancerdecisions.com
www.drday.com
www.hacres.com
www.gardenoflifeusa.com

A wonderful book jam packed with good info is:

Beating Cancer with Nutrition by Dr. Patrick Quillin. It explains what suppplements work with what chemos and rads for specific cancers. I gave this title to my onc at Mayo and told him I think everyone who walks out of his office should have a copy. He read it too! :-)

So keep coming back for the love and understanding that you will receive here....

peace, emily

4mykids
Posts: 33
Joined: Mar 2004

No experience either with oxcili, but just wanted to give some encouragement! I, too, have small children (2 1/2 and 6) and have been dealing with my colon cancer with mets to liver for 9 months. It is not easy, that is for sure. But all I have to do is look into my children's beautiful faces to renew my vow to fight, fight, fight!! Positive attitude, motivation, inspiration certainly add to the equation of healing, and kids certainly can provide that. I am glad that you did not listen to that surgeon, and you found a dr./place to continue your fight. Keep up the good work, and I hope that you start to find that the good days begin to outnumber the bad. I wish you well!!

KrisS
Posts: 232
Joined: Apr 2003

Nettie- Welcome-You are one strong person! Everyone has their ups and downs, but I suspect that you are going to keep on fighting.

I have progressively developed some chronic peripheral neuropathy (decreased sensation in the tips of my fingers and my feet) after having been on oxaliplatin steadily for 9 1/2 mth.

Development of chronic peripheral neuropathy (not the acute cold sensitive neuropathy) is apparently the most common reason that people are removed from the drug if it is working otherwise.

Some preliminary studies from Europe have suggested that infusions of calcium/magnesium before and after the oxaliplatin may helpful in reducing nerve damage. A smaller study from Italy suggested that glutathione (an amino acid) given intravenously may help also. There are a few other strategies that have been discussed that I can't recall.

Since I knew I would be on oxaliplatin for a long time, if it worked, I lobbied my oncologist for one of these. I have been on calcium/magnesium infusions and I believe they have helped slow the progression down compared to the time I was on oxaliplatin without this. This does not repair nerves. It just is thought to protect them a bit from the drug as it is given. I am not certain of anything to reverse more quickly what is already damaged. Researchers,however, especially in Europe, where they have been using oxaliplatin longer, are actively investigating things to help with this. It may be worth checking with your oncologist to see if anything new is on the horizon.

My oncologist has suggested that I consider going on Avistan for a while, for a break. He said whatever nerve deficits I have will probably take 3-4 mth to go away. I am going to ask him whether there is anything new next time I see him in 3 wks. I will let you know if I hear of anything .

Best wishes,
Kris

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Nettie,
I do not have experience with oxali; my regimen is 5FU and leucovorin, but I see that you have already heard from some folks in similar circumstances. I wanted to add my emotional support for your fight. Although my kids are 16 and 18, it feels clear to me that one of my goals is to see them grown up...prob THE most important one when I think about it. The emotional roller coaster that comes with this disease is so hard to deal with.
Are you getting any help at home with the kids and house? I've gotten better at making specific requests of my friends and family!
I hope you find us helpful here; the fact that you are posting here a year and a half after recurrance is a tribute to your fighting; hang in there and stay in touch. Judy

schoolgirl
Posts: 29
Joined: Feb 2004

Hello Nettie: My hubby Hunt is on Oxal. Bad stuff. We do not know if it is working, we are scheduled for cat scan Friday 19th. He is experiencing same thing that you and KrisS is experiencing. He is a fighter and sounds as if you are. Keeping strong is a chore, but must be done, keeping a positive attitude is a must, and I believe you also have that. Wish I could be of more help. The stinging and numbness in his hands and feet will come and go. Keep posting, I want to know how you are doing. I feel much better when I come to this site and read these postings. Praying for cure and best wishes. yvonne

pattieb
Posts: 176
Joined: Mar 2003

Welcome Nettie to the semi colons club
I only had 3 treatments of oxii and they had to take me off it so I can't really comment on your
problem allI can do is wish you the best of everything and lots of love and hugs. Keep us updated on everything.
Pattie

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