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    Celebration (Clear Scans and Bloodwork - NED): I am now 3.5 years out from finishing chemo. This has been a tough journey. I had a severe reaction to the Folfox and had to take it one treatment at a time. It was the hardest thing I've ever done. And though I am NED I know that I will need to be vigilant. I've seen how quickly things can go off the rails. I now suffer from severe side effects from the chemo, the worst of which is joint pain and arthritis. I've had to have my hip replaced and multiple knee surgeries. The other hip and both knees will require replacement. The pain is horrible as is the limited mobility. I have to use a cane and can't stand for long. But I am still here and I am experiencing every single thing I can. I find survivorship lacking in resources but I am so grateful and blessed to be here.

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    slatebreak wrote on ERINKDENT's wall

    Hi Erin: You deserve a hug. I know how it feels to be in your shoes. The answer is yes you and me and everyone else will die; someday. And in a way that takes away the knot in your stomach. Whether it's from colorectal cancer and whether it's sooner rather than later, well it's been my experience to try and take this whole thing one step at a time. Getting through the beginning of treatment and diagnosis, getting through the side effects of the treatment chosen, and then hopefully getting through to the other side tend to happen in a very carefully orchestrated manner. But when I first got my diagnosis, I was very much like you - in my late 50's and wondering if my life was over.

    I had no symptoms. I ended up in the ER thinking I had food poisoning because I had severe abdominal pain. And that evening I had also passed blood. The ER doc told me immediately I didn't have food poisoning. And that he thought I did have colon cancer. The colonoscopy the following day proved him right. Originally they staged my disease at stage 1, thinking they got it all out during the colonoscopy. I thought I'd dodged a bullet. But when my very first 90 day bloodwork and scans were done, all being negative, they decided to work me up as a colorectal patient rather than just colon and an endoscopic ultrasound resulted in my gastro surgeon telling me that he strongly felt the cancer was back in the original tumor bed. He was right. Whether it was a recurrence or some of the original cancer was not gotten during the first round, just semantics really. That led me to now being stage 2. They assured me that it wasn't in the lymph nodes and I wouldn't have to undergo chemo. I had over a foot of my colon removed, all my gynecological parts, and 16 lypmph nodes. Pathology showed 1 positive for infiltration. So now I was stage 3b and feeling just the way you are right now.

    This changes your life and that of your family. I am a former vice president at a Harvard teaching hospital so I was somewhat familiar with the survival statistics for my stage,. If I chose chemo then roughly 50% of those with my stage undergoing resection and chemo, are still around 5 years later. So I didn't waste time. I picked the Mayo for treatment and got my medical team lined up and off I went to this new place I didn't want to be.

    You will get through this. It will take every ounce of determination and strength. And you will want to quit. But don't stop because your life depends upon it.

    I am now 3 1/2 years out from finishing chemo. And my present status is NED, no evidence of disease.

    This is not a journey for the faint hearted, but you will surprise yourself. This forum and others will help you immensely.

    These folks have been there and they know how to get through this nightmare. And there is someone here all the time.

    So I know you're smart because you ended up here. And let me say that you will get through this.

    I don't know where you are with getting second opinions and such but they are invaluable.

    It's frightening and it's painful, but it is doable. You can do this Erin. And you will get to the other side or at least to another part of this dance. Nowadays you manage the disease. You manage the phases of it. So let us know more details if you choose.

    Please know that I am here for you. Hugs.... - Gail

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    slatebreak wrote on allier4's wall

    Hi allier4!

    Just wondering how you are doing?

    I also was allergic to oxaliplatin and had to go to 5 fu and leucovorin with no bolus.

    Am also stage 3 b. 2 years NED.

    Hope things are going well for you.

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      I'm doing pretty well! Finished my last treatment Oct 17. Had a CT scan and saw the dr. on Nov 14. NED! My energy is starting to come back and I'm looking forward to the holidays. Sounds like you are doing well!!

      over 3 years ago
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    slatebreak wrote on IKickedIt's wall

    Congrats on the results of your PET scan! Wonderful to hear of the clean results! You go girl! :)

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