Recently diagnosed with stage IV

I was 49 when I was diagnosed, I am now 57, am stage 4.  I have a problem wiht my left leg swelling, because the cancer has spread to my ureter and aorta.  I crave itilian ice.  but when I started on oxyplantin, I could no longer eat anything cold.  or touch anything cold.  If you start on that ask the clinic for the oxyplantin started kit.  It has gloves and a scarf in it plus great information.   If you dont eat meat, then blend your food,  I love potato soup and eat it alot.  Do not eat cheese  it really messed by digestive system up.  It is easy to be afraid of the unknown,  I would like to suggest that you read  90 minutes in Heaven.  I am not a religious fanatic but this book gave me great peace of mind.  I also bought a book, that has about 250 questions about my life,  and I am filling it out so my kinds will know what kind of life I had as a child, about my parents, etc.  and what I loved and hated.  If the chemo I am on does not work I have about a year. I decided I could cry every morning or I could get up and enjoy the life I have.  My new philosophy is If I shead one tear then I have to laugh at least once that day.  You would be surprised how much that helps.

There are a lot of new treatments for liver cancer now, including laser surgery.  Dont give up.  Your life has changed it hasnt stopped.  I worked up until this year.    My cancer has spread to my lung, ureter, aorta and back into my colon.  I was on 5 fu for a long time but it stopped working.  The other thing, if you EVER feel uncomfortable with your oncologist suggestions, get a second opinion.  They are not God, they can make mistakes, you have to be active in your treatments ask questions, and if you feel you are getting the run around, the ask some other doctor. 

God bless you

 

Hi Mojca- Hang in there and try to remain positive.  I know it's hard.  Many of the questions you ask must be answered by your doctor.  If you feel you need another opinion, now is the time to seek one. Doesn't look like the current Doc is focused.  You have a right to answers.  Write them down and make an appointment as soon as possible and get them.  I am surprised they are using MRI.  Has he had a PET scan or CT Scan recently?  They give you the most information.  With the right protocols now, the appropriate chemos can be used.  But the key is to get with the Doc, current one or new one and get his treatment plan moving

 

On 5/27/2008 2ndtimer wrote:

Mary57,

I was stage iv in 1992 at age 40.  I was expected to live a maximum of 3 years.  It is 16 years later, I am 56, and have had no recurrence.  I had surgery and 6 months of chemo.  I did not have any scans and don't know why.  Maybe scans were not the protocol back then.  I had regular appointments with the oncologist every 3, then 4, then 6 months until I finally saw him only yearly.  I had colonoscopies every year, then every 2 years and finally had them routinely every 3 years. 

Two years ago I was diagnosed with small bowel cancer.  It was not mets or a recurrence.  It was a 2nd primary.  Small bowel cancer is rare.  I had surgery and 6 months of Folfox.  This site does not have a category for small bowel cancer so I started participating in the colon cancer category because chemo is the same and also I thought I could encourage those with colon cancer since I survived it.

Good luck to you.  I hope my colon cancer success story helped.  I'm still working on surviving small bowel cancer.  I'm having surgery soon to remove some yet to be determined thing from my small intestines.  Anyone with extra prayers lying around send them this way!

Lynn       

I'm so grateful for your story!   Thank you!!!!!!!!