recurrance

Hi,
And welcome. I too was diagnosed with Stage IV back in July 2003. My cancer was thought at first to be ovarian because the tumor we later found out.. originated on the outside of my colon and spread thru my pelvis, wrapping itself around my ovaries and ureters. I had surgery, a complete hysterectomy, and a colostomy. I received 6 wks of continuos 5FU thru a pump for 24 hrs a day, along with radiation. Then I had 6 mos of 5FU, oxillaplatin, and leucovorin. Thank God everyday, that I am now NED. and have been since May 2004. I also had 2 positive nodes. I was able to have my colostomy reversed in Jan. 2004. And so far, so good. I am thankful for everyday of my life, and I know I am here for a purpose, because it didn't look very promising for me at first. But I have a very strong faith in God, that he doesn't give you anymore than you can handle. Today I feel great, and I am enjoying life, the fear of cancer's return, I don't think ever goes away, once it comes into your life, but you have to try to keep healthy, and think healthy. Hope this helps you, and good luck.

Hi, I am so very sorry that you are experiencing a relaspe - let alone the original diagnosis. Having a recurrence palys on all of our minds. I am sure that your head is spinning right now, wondering what the best course would be. If I could offer anythibng other than support, prayers and good thoughts, it would be to secure lots of info, and to augment all of the western-style medicine with nutritional info as well. There is so much good info out there and all of it would stengthen your mind, your will and your body. Many on the site know a lot and I am also happy to lend a hand. Please take some time to think about fighting this with more than one perspective. I would get all the guns in on your behalf (gastro, gyn, radiologists, oncs) and then read, read, read about how you can alter your own ability to beat this through what goes in your body. All the best to you and I hope that your enjoy your holidays knowing that you have lots of support -- Maura

I am so sorry to hear you have had a recurrence. My story is not the same as yours -- I was diagnosed with rectal cancer, had treatment. Two years later, I had a recurrence (tumour in my lung). It is a very frightening thing. But -- I have just finished treatment for this recurrence (surgery plus chemo). I am NED and feeling very positive. My feeling is: (1) you gotta get back on that horse and get on with it (2) I have taken comfort in the notion of a chronic disease -- some of us may have relapses -- even more than one. But, it is not a death sentence -- treatments are changing rapidly, there are great new drugs out there (and promising alternative approaches) -- and WE CAN SURVIVE. It takes a lot of inner strength to get through what you are experiencing now. I am sending prayers and positive thoughts your way.
Tara

terril said:

I have some other concerns regarding treatment regarding my relaspe. Has anyone experienced the 5-FU pump and CPT-11? What side effects did you experience? What about total hair loss? Any information would be appreciated.Thank you again for your incredible support.I will get through this!!!

Hey there Terrie - I had the 5Fu-pumo (the 46-48 hour pump which one wears). It really isn' t that bad; having it hooked up to a porta-cath really helps. I would just fling it along with me and not shower for a day.....didn't want/need to see anyone special, so it didn't matter. I did need a good anti-nausea drug from Merck - EMEND which really helped me. Please ask about it; it is super. I did not experience any significant hair loss until after chemo ended....strange, but maybe it was the accumulation of toxins. And, since we don't have a hormone-based cancer, hair loss is not as prominant. I only had some thinning, but that was all, and I have hair flowing six months after chemo... Others will be able to tell you about CPT-11, I cannot. All the best and do keep us posted. I would be most happy to help you in any way. Take care, have a good Holiday know that you have support - Maura

I didn't have any problems with the pump at all. I had it continuously for 6 wks, day and nite. I would even shower with it, my Hubby would stand outside the shower and hold it for me, he is so sweet. I never experienced nausea with it or anything. After the 6 weeks I would have the pump hooked up for 2 days every other week, and go into my chemo clinic for oxillaplatin and leucovorin, I had a little nausea from that, but they always gave me Aloxi, I think thats how its spelled... and it really helped. My hair only thinned, but I never lost it.. didn't have to shave my legs for 6 mos. though, that was nice... LOL... it was very tolerable for me, I had some side effects from oxillaplatin, neuropathy, and tingling in my throat, and sensitivity to cold for a few days after treatment. I did really well until my last treatment, and I got sick, I think my body had just had all it could take... but at least it worked.. I would always think positive when I would get my chemo, that it was going into my veins and killing everyone of those nasty cells!! So Good luck to you, and I will pray for you, and send good thoughts your way.

Gail

Terri: I'm on Folfiri-(CPT-11, 5-fu pump48hrs, CPT-11) bi-weekly. First dose brought a lot of constipation, some nausea, and then diahrrea, but it's survivable-keep drinking fluids, and ask for anti-nausea meds to take home. This too shall pass. Feel free to e-mail me through this site. Bud

My webpage at http://homepage.ntlworld.com/jmwest/ileo.htm gives a lot of information about living with an ileostomy, and now fighting colorectal cancer following surgery and chemotherapy.

John West

terril said:

Hi John!!!
Just read your web page. What an incredible story!!!! You have such a positive, strong will to live considering the hell you have been through. You are quite an inspiration. I pray that the masses in your pelvis are ok. I believe you have some great docs who are helping you. God bless you, John. Terri

Thank you Terri,
I'll find out more tomorrow when I see my surgeon at 1400 hours and my oncologist at 1550 hours. I'll keep you updated via my weblog at http://homepage.ntlworld.com/jmwest/ileo.htm but feel free to contact me at the email address in my weblog. I wish you well on 17 Jan. Happy new year.

John West