Colon Cancer Stage 4

I have stage 4 colon cancer. I had surgery three & half years ago. They gave me 5FU for 6 months. I was clear until March 2005. The cancer came back in my liver & in the lymph nodes near my pancreas. They put me on Irinotecan & 5FU.. It didn't stop growing.. Then they put me on Oxaliplatin... It was working, but I had a very serious reaction to the Oxaliplatin.. I was on my 8 session.. I stopped breathing for 3 minutes & had no pulse, turned blue.
Now they are going to send me to USA for chemo not avaible here. I would like to know if there's anyone these going though the same thing as me.

Thank-you

Hello Johna, I had stage 3 colon cancer in June of 2004. I had surgery and then started folox chemo in Aug. 5 FU, oxaliplatin, and leukovoran (spelling). It, so far, has cured the cancer. I too had a bad reaction to oxaliplatin. I started with a dry cough in december and asked my doctor if it had anything to do with the chemo. He said no, but it did. I ended up, on Easter Sunday, in the hospital because I couldn't breathe. I started out on oxygen 24/7 and now only need it for exertion. But.... had to go on prednisone which caused me to get diabetes and osteoporosis. I will be on oxygen forever. Can no longer work to take care of my home. I am sure there are other drugs they can give you instead of oxaliplatin. The oxaliplatin only hurts less then 1% of people in the world.....and I had to be one of them!! Of course, if the doctor had listened to me, I wouldn't be nearly as bad as I am now. Good luck to you and remember to ask lots of questions and use the internet to look up all medications and the side affects. I certainly do that now. Again, good luck, Barbara

The best in the world is University of Pittsburgh Medical Center - Dr. David Geller - although see him soon - sometimes they do not like to do surgery if you've had too many cycles of oxyplatin b/c of what it can do to your liver - best of luck......

Hi I still don't know what hospital they are going to send me to or what state. In December I go for a CT scan to see if it's growing again. He said he's keeping a close eye on me.

John

Hello Johna,
I live near Belfast in Northern Ireland, and discovered I had colon cancer last April. I am a very young & fit 70 year old (think Clint Eastwood!) My doctor ignored my symptoms and when I finally had an op I was like you at stage 4. It had spread into lymph glands. I was lucky to have a surgeon who is reknowned in his skills to remove cancers, and he is very pleased he removed everything. A CT scan and blood tests are showing negative and I am starting "mop up" chemo next Friday. I had a PIC line placed yesterday and I have opted for Oxilaplatin + 5FU etc as this is showing much better long term results ans survival than just the 5FU etc In the UK the 5FU treatment is free but to use Oxyilaplatin or Zeloda I have to pay. I did originally want to go for Zeloda as the trials here were excellent, but my oncologist is not happy with the side effects from it. I have been warned that I may have similar side effects as you from the Oxilaplatin, and if this happens they will change me to 5FU. Please email me any time you want to talk to someone, as we can maybe share our experiences. I am in the timber business and still work full time. I am married and have 2 sons.I have always eaten healthy food but this did not prevent the cancer. I did smoke lightly for many years. But gave up aboout 10 years ago. I am in excellent health, and I have been eating porridge, nuts & seeds and loads of fruit and vegetables. Fish and no meat except duck
I look forward to hearing from you and how you are progressing.
Regards
Robert
ps I am meeting so many people who are still alive and kicking after 5 - 10 years following colon cancer and chemo, and the survival rates are improving all the time, so keep positive!

Hi Robert .I am going for a ct in nov 29 to see if the tumors are growing,after that i'm seeing the oncologist on dec. 13 for the results.The last time I've spoken to him , he gave me 2 years to live, but I will prove him wrong.I feel fine,eat well,sleep good,exercise(walking 30-40 minutes a day) not on any medication at this time. As for the oxaliplatin it is not commercially available in Canada, and is currently accessible through the special access program that provides certain non-marketed drugs under special circumstances.Every 2 weeks I recieved the chemo,the chemos made me very tired for 10 days,then I would restart the chemo and be tired again I had maybe 4-5 day that I was feeling o.k.... then back to the chemo. I also have two sons,quit smoking 19 yrs ago,I'm 52, non drinker.You might have to take some time off from work while your on chemo.Please let me know how you are doing sincerely john

hi johna
i was diagnosed with colon cancer in february this year and had a 2.5cm removed from my bowel and it has also spread to my liver and lungs, i have tried 2 different chemos the first was oxliplatin with 5fu in which the first 3 months worked then the 2nd didnt, it shrunk some on the liver from 4.5cm - 2.3cm, and some on lungs shrunk. im on irinotecan on the third dose and need ct scan to if it has worked, im enquirying about the avistin or cetuximab drug to see if that might work if the irinotean doesnt. i would like to know how u r managing and what treatment u have.avistin & cetumixab is not on the nhs and could b expensive. could u please reply or email me on --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---
thanks
ann

hi: Ann The treatment I was on in 2001 was 5fu after I had surgery for stage 3 colon cancer. I was checked every 6 months. Then they changed it to once a year. That's when it came back March 2005, stage 4. I was put on Irinotecan & 5FU until May 26 2005. it didn,t work the tumors were still growing. Then I went on oxaliplatin and 5 fu in june 20 2005 till oct.4 2005 it was holding the tumors in place,(not growing or shinking).I had a Very serious reaction to the oxaliplatin and I Had to end the treatment. Now I,m not on any medication or chemo. My oncologist wants to sent me to the USA when the tumors grow for treatment {chemo }.I feeling fine,eating very well,sleep good,exercise 5 days a week(walking 30-40 minutes a day) also I have no symptoms.I don't know about the other chemos that you mentioned.Thank-you for writing me and I wish you all the best . Please write and tell me how you are doing. JOHN.A

Did you say that the Oxaliplatin worked for you? How old are you? My father is suppose to start this therpy after the otherones did not work. I would like to know the side affects and how it helped you (tumor shrink).
What kind of tretment are they sending you for in the USA? Do you live in Canada?

Hi Hanna The Oxaliplatin had stabilzed the cancer { not growing , holding in place } I'm 52 years old...... I was put on it when the other chemos failed to stop the cancer from growing...... I also had a reaction to the oxaliplatin and had to stop the treatment.

I live Toronto..... North York......


My oncoligist did't tell me which chemo I would be on ...
if and when I go to the states. The side effects are nausea and vomiting, numbness or tingling of the fingers,toes or around the mouth, signs of infection/fever chills,cough,sore throat,low white blood cells,bruising or bleeding, black
tar-like stools,red spots on skin.These are the more common side effects.Less common are diarrhea,adbominal cramps,tiredness or weakness,lack of energy.Rareside effects are sensations of tightness or fulness in the throat that may make it feel like it is difficult to breathe.Just because I listed all the side effects does not mean your father will get them all,each person is different and each has different side effects. When your father goes to the oncoligist, ask for a fact sheet about the side effects. All the best to you and your dad.

John A