Colon Cancer And My Treatments

I was first diagnosed and bowel resection in 2001, I chose to have chemo to play it safe.  In 2004 it returned outsde of my colon in the lymph glands.  My oncologist at the time, says lets just wait and see, the cea was low but slowly climbing.  He told me he was treating me just as he would his sister.  He was my personal friend also.  I should have known better but I trusted him.  In 2007, 5 hours from death, I found the cancer had wrapped around my aorta and ureters, my B/P was up and down, my feet were swollen not every day I could still urinate but not enough.  By the time I got treatment, I had to have nephrostomoies and stent placed in both ureters.  The 5 fu no longer worked, so I was placed on the 48 hours regime of oxyplantin and got neuropathy, my feet and hands feel like I have cardboard on each finger and on the bottom of my feet.  Finally had to stop that after 9 treatments.  Went to xeloda, no help.  I am now on erbitux and camptostar.  My first treatment I went into antiphlatic shock and now I must take steriods before my chemo treatments.  I just got out of the hospital from anemia because I bled so much thru my kidneys.  3 units of blood later and today I feel human.  I restart the chemo next week.  My advice if you get advice from a doctor and you just dont feel right about it run dont walk to another opinion.  I trusted my oncology friend and as a result I almost died, I worked in the medical field for 34 yrs and I just placed too much trust in my doctor/friend.  I now have bi-lateral stents and the cancer has spread to one spot on my lung, and the original area of my colon ad ofcourse the aorta and ureters.  I may have only 1 yr but I have a wonderful family and a new grandson, so I dont have time to die.  doctors make errors and if you ever feel like you want to talk to another doctor DO IT.    I now have a wonderful oncologist, urologist nephrologist and gastroenterologist,  which I would NOT have had to have if I had listen to my gut instinct.   I am going to try and complete the regime, my cea is down from 29 to 11 but I need it to go alot lower before I can breathe easy.  I cry some days and blame it on the chemo but dont hesitate to cry, but when you do  always find something to laugh about afterwards.  and talk to people.  that helps more than you realize.

What treatment did you receive between 2004 and 2007?

 

That is unforgivable.  I had a recurrence last year with the tumor wrapped around my aorta in the pelvic area.  It was a lymph node they should have taken out in 2005 when they did the orginal resection.  They did radiation along with xeloda for 35 days in Dec 07 and they got all of it.  They are calling me a survivor!.  I just finished folfox, etc to take care of the lingering cancer cells.  Have your docs ever talked about radiation in combination with the chemo?  It did the trick for me.  You have a great attitude and a new grandson. That is wonderfull. Keep the spirits up and God Bless.  FIGHT< FIGHT< FIGHT!!

 

On 5/30/2008 Labboss wrote:

I was first diagnosed and bowel resection in 2001, I chose to have chemo to play it safe.  In 2004 it returned outsde of my colon in the lymph glands.  My oncologist at the time, says lets just wait and see, the cea was low but slowly climbing.  He told me he was treating me just as he would his sister.  He was my personal friend also.  I should have known better but I trusted him.  In 2007, 5 hours from death, I found the cancer had wrapped around my aorta and ureters, my B/P was up and down, my feet were swollen not every day I could still urinate but not enough.  By the time I got treatment, I had to have nephrostomoies and stent placed in both ureters.  The 5 fu no longer worked, so I was placed on the 48 hours regime of oxyplantin and got neuropathy, my feet and hands feel like I have cardboard on each finger and on the bottom of my feet.  Finally had to stop that after 9 treatments.  Went to xeloda, no help.  I am now on erbitux and camptostar.  My first treatment I went into antiphlatic shock and now I must take steriods before my chemo treatments.  I just got out of the hospital from anemia because I bled so much thru my kidneys.  3 units of blood later and today I feel human.  I restart the chemo next week.  My advice if you get advice from a doctor and you just dont feel right about it run dont walk to another opinion.  I trusted my oncology friend and as a result I almost died, I worked in the medical field for 34 yrs and I just placed too much trust in my doctor/friend.  I now have bi-lateral stents and the cancer has spread to one spot on my lung, and the original area of my colon ad ofcourse the aorta and ureters.  I may have only 1 yr but I have a wonderful family and a new grandson, so I dont have time to die.  doctors make errors and if you ever feel like you want to talk to another doctor DO IT.    I now have a wonderful oncologist, urologist nephrologist and gastroenterologist,  which I would NOT have had to have if I had listen to my gut instinct.   I am going to try and complete the regime, my cea is down from 29 to 11 but I need it to go alot lower before I can breathe easy.  I cry some days and blame it on the chemo but dont hesitate to cry, but when you do  always find something to laugh about afterwards.  and talk to people.  that helps more than you realize.

I'm so sorry to hear all that you have been thru and will keep you in my prayers.  I also worked in health care for decades and can understand how you would feel a friend has your best interests at heart but not so much knowledge to deal with your cancer.  I had stage 3b colon ca and will be 2 years out from finishing chemo in july.  Still have neuropathy and sometimes feel like my toes are webbed.  You know what?  Your right.  We cry and laugh and we're still here!1 Have some fun today with the little one.  Hope he lives close by. 

labboss,

So sorry for what you have been through.  Thank you for sharing your story.  We are supposed to be able to trust our doctors and it must be particularly hard on you since you were friends, too.  Your story is a good reminder for us to be proactive in our own health care.  Look at what all you have been though and look - you are still here.  You are a strong, tough individual, you have a lot to live for, and that is a good combination for success.  Give yourself a big pat on the back and celebrate that you are still here and enjoying life.  Good luck.

Lynn

God bless you in your challange. I also have colon cancer with mets. I am 30 with 3 kids under the age of 5 and retiring from the army. My disease is also in my liver and lymph nodes surrounding the aorta. Over 30 nodes involved in my pelvis area. For 6 months I had bleeding and incredable pain and my doctors told me I am healthy other than 3 bulging disks and hemroids. I knew somthing esle was wrong and it took 6 months to get the tests I needed, but it was too late. They gave me 6 months to live without treatment and now give me a 30% chance at a 3 year survival. I even told my physical therapist when reviwing my MRI " it think I have cancer and she told me I was a hypochondriac and acted like I was trying to get narcotics for pain. And this was all at the hospital I worked at and was awarded many times and viewed as an exceptional soldier thier. So, I feal a little bit of your pain. I also had an allergic reaction, but it was too oxciliplaton. I have been doing a lot of research and maybe you should look into a few things since chemo isnt working the way you would like it too. Cranberry Juice, NKC mushroom from new sun, (ist the blezie mushroom) Rieki mushroom. At the sloan kettering site all three of these thinkgs have been proven in clinical trial to lower tumer markers.

-robert

Hi Robert,

Wow- reading your posting infuriates me at doctors who refuse to believe that someone so young could have cancer.  I'm a decade older than you- 41 (also w/ 3 kids- 15, 12, & 8), actually, but I was also considered "too young" to have such a cancer.  As you're probably aware, even with the "new" guidelines, recommendations for screening for colorectal cancer isn't done until age 50.  I've heard of SO many people lately who get it much younger than that!  Myself, I had 3-4 months of not feeling well with major bleeding in my stools.  I thought maybe I had caught some weird virus or something.  I also knew (or thought) hemmoroids were an issue, but the bleeding seemed way too much for that.  I finally went to my primary care Dr., but was only able to get in to see the nurse practitioner.  She physically examined me and told me I had "a very large hemmoroid" and that it "probably burst, which is causing the bleeding". I later discovered, after being diagnosed, that she had actually felt my rectal tumor and didn't even realize it!   What she told me sounded better than cancer to me, however, but I still was thinking I should probably still have a colonoscopy.  I then started feeling better, however, so since the nurse practitioner didn't seem alarmed, I put the colonoscopy off for a couple more months.  Finally, when I did get it, I found out 2 days later that it was malignant.  A week after that, I found it was in my liver and both lungs.  Maddening as well as devastating!  I am actually and miraculously doing pretty well now.  Nothing shows up on my PET anymore & just a very small amount on my CT.  I had liver surgery just two weeks ago.  Didn't ever have the rectal resection, as that tumor disappeared following radiation/chemo.

Blessings to you- you will be in my prayers!