Newbie

66Rose
66Rose Member Posts: 58
edited March 2014 in Colorectal Cancer #1
Happy New Year! 2007 will be an AWESOME YEAR!!!

I have posted a few times as responses, but I thought it was time to officially say Hi!

After about 8 months of going back n forth on what my diag was GYN or Colo/Rectal. I am officially have rectal cancer, should have been no surprise since my entire dad's side of the family has it, I mean everyone. I was even getting checked for the past 10 years, this tumor grew fast.

I do not have a webpage on acscsn yet, but I do have my own website www.runlizrun.com, a really good friend of mine manages it for me.

Because of the early mis-diag I took the wrong Chemo for 2 months and my tumor doubled, then went right into radiation and a week of 5FU.

I received an ileostomy in May 2006 and my BIG surgery was October 2nd after a 4 week rest off of radiation. They had to resection the rectum, a fistula in the vagina (tumor broke through there too) radical hysterectomy, OH and remove a baseball size tumor.

Because of the radiation my body is still healing and my BUTT is so sore still, 3 months later, heating pad works wonders. I am so sick of pain killers, I wear a patch still.

I have decided not to take the "mop up" Chemo of Oxi and 5FU, my body has had enough. I have been on some boards that do not support my decision it seems you all are very accepting; I loved ready about emily (2bhealed) and Lisa (scouty) I think I can learn a lot from them!

I bought Quillin's book and LOVE IT! I also bought a book that just came out in 2006 that I can't put down, "Cancer - Step Outside the Box" by Ty M Bollinger.

My oncologist is not supportive at all, I may need to find a new one and I am looking for a Naturopath too.

I am embarking on a new journey and I am very excited to be "here" and share with you all!

What stage am I??? Well because of the radiation my nodes were all clear, all 19 of them, they told me the radiation cleared them and they think they were involved prior to radiation, so I am not sure if I am II or III and neither are the so called experts.

God Bless,

Liz
Tempe, AZ
www.runlizrun.com

Comments

  • KierstenRx
    KierstenRx Member Posts: 249
    Hi Liz,
    I recently read your story on your website. I really admire your strength. I am also a rectal cancer patient. I am going in for surgery at the end of January and most likely will end up with a colostomy. I am also going and seeing an OB/Gyn surgeon next week to discuss doing a total hysterectomy at the time of surgery. As of right now the plan after surgery is FOLFOX plus Avastin for 4-6 months. I decided to treat my cancer very agressive since I am only 32. I totally support your decision to not go forward with chemo. You know what's best for you. I also have been reading Quillin's book. I really enjoy it and have tried to do much of what he suggest. I also have bought his supplements. They are very expensive, but I want to build up my immune system as much as I can before surgery. Do they help, maybe or not, but I think I am much healthier putting those into my body. I also like your idea of finding a naturopath. I firmly believe in a total approach to healing. Best of luck in this coming year.

    Kiersten
  • nanuk
    nanuk Member Posts: 1,358 Member
    unfortunately your Onc can't be supportive of your decision to not do the "mop-up" chemo, esp. if they work for a conventional cancer center. They would be going against their own treatment protocols, and creating a liability for their group if your cancer returned and they had not recommended chemo. bottom line it is always our decision and our consequences...
  • JADot
    JADot Member Posts: 709 Member
    Hi Liz:

    Welcome to our board!!! The title of your post caughy my eye immediately. You see almost exactly one year ago I posted the same newbie message after coming home from the hospital.

    And the similarity doesn't just end there. I was stage II, cecum and ascending colon, 2 large tumors, one was 5x9. Diagnosed as HNPCC, but nobody in my family ever had colon cancer! It was not the kind of trendsetting I really wanted to do. Had surgery and 6 mo. of FOLFOX.

    Well, Liz, your optimism is really infectious and I think those **** cancer cells should be running really scared in your host body!

    Re: your choice of treatment - yeah, I can see why the onc isn't supportive because it's totally outside of their box. But hey, it's your life, your choice, and it is you who must be completely comfortable with the treatment plan. Best of luck to you!

    Because you're pursuing a nutrition-only follow-up treatment plan, I would recommend a book by Ann Frahm - A Cancer Battle Plan. There are lots of really good nutritional information in her book, and what a fighter she was.

    I'm a runner/walker/cyclist - so I'll be running/walking/cycling this cancer beating journey with you!

    See ya on the road :-)

    Cheers,
    Ying
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    Welcome to our group.

    I had stage 3 rectal cancer diagnosed on 3/17/03. Back then only 5 fu and leukovorin was used. I had preop radiation and chemo followed by surgery. I received on 4 out of 12 post op chemo treatments and had severe diarrhea that landed me in the hospital. My body had had enough and I had to stop cheno. I remain NED.

    Maureen
  • RunnerZ
    RunnerZ Member Posts: 185
    Liz, Welcome fellow rectal cancer survivor and runner! I am a 44 year olf male 8 year survivor of stage 3 rectal cancer. Congratulations on your great progress and may you run strong for many years. I just want to point out one thing, because my clinical experience was so close to yours. I was also a stage 3 rectal cancer with preoperative chemoradiation (5-FU in '99 was the protocol). My tumor was wiped out as well...no malignant cells post-op, but the onc still recommended...no insisted on 6 months of 5-FU, as did my scope Dr. (who appears each year on the Today Show regarding colon cancer and has written a terrific book on the subject). They both said that the chemotherapy had proven itself so very effective against the cancer cells that were targeted that it made sense to utilize it to wipe out nay lingering cells elsewhere in my body. I endured the treatment (it was easier than the chemoradiation) and sruvive today still. I cannot tell you that the chemotherapy was necessary, but I did trust my Doctors. I don't mean to offer meidcal advice other than to encourage you to carefully consider all of your options (including alternative medicines, holistic medicines, etc.) We do govern our own bodies and we each have instincts about what our bodies may need. I just felt compelled to share my experience given our similar backgrounds. I have a feeling that you will survive and thrive with whatever choice you make. you sound like a survivor and that is half the battle! Good Luck and Welcome!
  • lfondots63
    lfondots63 Member Posts: 818 Member
    Hi Liz!

    I'm glad you found us and yes we are a varied group of survivors. You know better then us what your body will take. I'm a stage 3 survivor of colon cancer and could only take 9/12 folfox treatments. My body just started to go haywire with my blood sugars and the neuropathy. It has been over a year from my dx (my birthday for those that don't know! LOL!) and I'm still fighting some neuropathy but feeling good otherwise. I wanted to say that most of us take the "whole body" approach to healing it seems. Thanks for the new book. I will have to look it up. HUGS and we are all here for you.

    Lisa F.