Recently diagnosed

new diagnosis
Jeri, welcome to the board, wish you didn't need to be here! My initial diagnosis was IIIB, 3 of 25 lymphs involved. I had the resection, and chemo. 2 years later i had to go back into surgery and they removed a tumor the size of a soccer ball (I just have to say that, for some weird reason i am proud of the size ) from my right ovary. I had a full hysterectomy, including the cervix (told them i didn't want to come back in 2 years with cervical cancer!), an omentumectomy and they took my appendix while they were in there. I did chemo again, and have done chemo one more time. I have gone past 2 years since that last surgery and all scans currently show NED! So, it hasn't been fun, but it's certainly survivable! And tell your doc to read the statistics to himself, they have NOTHING to do with you! In fact, find another doctor who is more interested in treating you as a patient, not as another statitistic! God be with you and come back often! Mary

hi
I am confused why spread to ovaries would be stage IV and not stage III b or c. Aren't ovaries considered nearby organs?
Stage III

Stage III colon cancer is divided into stage IIIA, stage IIIB, and stage IIIC.

Stage IIIA: Cancer has spread from the innermost tissue layer of the colon wall to the middle layers and has spread to as many as 3 lymph nodes.
Stage IIIB: Cancer has spread to as many as 3 nearby lymph nodes and has spread:
beyond the middle tissue layers of the colon wall; or
to nearby tissues around the colon or rectum; or
beyond the colon wall into nearby organs and/or through the peritoneum.
Stage IIIC: Cancer has spread to 4 or more nearby lymph nodes and has spread:
to or beyond the middle tissue layers of the colon wall; or
to nearby tissues around the colon or rectum; or
to nearby organs and/or through the peritoneum.

joj56 said:

More info
Thanks for the responses and support. Since I am new to all this please bear with me if I ask stupid questions.
Is FulFOX the treatment and it includes drugs like Oxal, and Avastin, or are those drugs separate from the FulFox treatment.
Sounds like people do have different reactions to the chemo. 12 sessions just seemed to scare me. I am trying to get myself mentally and physically (if that is possible) prepared before I begin my treatment.
I intend to visit here often. People here seem to be very caring and concerned.
I pray there will be a cure for all cancer very soon.
Thanks again, everyone for welcoming me to the group. I want to find out more information about the semi-colons.
Peace
Jeri

FOLFOX
Jeri, as Lisa said FOLFOX is 5FU-Leucovorin and Oxaliplatin (hence the acronym for the real names of the drugs) FOLFIRI is the 5FU, Leucovorin and Irinitocan (CPT-11). You will see once you get going in this the terms will, unfortunately, become common and you will understand what everyone is talking about. In fact, I went back to my profile that i had filled in back when I was first diagnosed and changed it quite a bit since initially I put in stuff that wound up being SOP for us semi-colons! And as far as the number of treatments being scary, just look at them one at a time; it's easier to handle that way. In fact, when my doc wants to begin me on chemo again he says "we'll do a few treatments and see how you do" knowing FULL well he is intending the full 12 treatments! God be with you, Jeri and let us know how it goes! Mary

Hello Jeri
Jeri,

I was diagnosed with Stage 3 colon cancer at age 44, with 13 or 14 (chemo brain has affected my memory as well) positive nodes out of 17. I went through surgery and 12 treatments of chemotherapy over 6 months. Everyone's experience is different, but I found in my case that having a port-a-cath put in before I started chemo was very helpful. Also, I always went to my chemo treatments with a friend (instead of my husband). It was just was too difficult for both of us to be there together. With a friend, we could chat about other things, which made it more bearable. The biggest side effects I had were the adverse reaction to cold, hand cramps and the neuropathy in my feet and legs. My hair did get really thin, but I just cut it short. It has been almost 4 years since my diagnosis, and everything is going well. The neuropathy has just about disappeared, the hand cramps are gone, my hair has grown back in thicker than it was before. I still have to deal with a lot of fatigue - but I'll take feeling tired - I'm just happy to be here! All of my follow-ups have been clear. I agree with everyone else - don't focus on the statistics - they are scary to read, especially when you have as many positive lymph nodes as we did. There is light at the end of the tunnel. Hang in there, have faith, and take care of yourself.

Kathy

mk1117 said:

Hello Jeri
Jeri,

I was diagnosed with Stage 3 colon cancer at age 44, with 13 or 14 (chemo brain has affected my memory as well) positive nodes out of 17. I went through surgery and 12 treatments of chemotherapy over 6 months. Everyone's experience is different, but I found in my case that having a port-a-cath put in before I started chemo was very helpful. Also, I always went to my chemo treatments with a friend (instead of my husband). It was just was too difficult for both of us to be there together. With a friend, we could chat about other things, which made it more bearable. The biggest side effects I had were the adverse reaction to cold, hand cramps and the neuropathy in my feet and legs. My hair did get really thin, but I just cut it short. It has been almost 4 years since my diagnosis, and everything is going well. The neuropathy has just about disappeared, the hand cramps are gone, my hair has grown back in thicker than it was before. I still have to deal with a lot of fatigue - but I'll take feeling tired - I'm just happy to be here! All of my follow-ups have been clear. I agree with everyone else - don't focus on the statistics - they are scary to read, especially when you have as many positive lymph nodes as we did. There is light at the end of the tunnel. Hang in there, have faith, and take care of yourself.

Kathy

Hi Jerry don't know that I have seen you here before
But I was diagnosed IIIA (2 positive nodes out of 20 some odd) did surgery, folfox - 8 rounds (only 5 with the oxaliplatin) with rest with 5FU and leukovorin and 28 days of radiation and 5FU. I am so glad to see that someone else still feels tired. I finished treat almost exactly a year ago. I am not exhausted any more, but some days, I am just tired. Not exhausted like before, but just tired. I had neuropathy but it is gone except on really cold days, but avoided cramps. Glad your hair grew back thicker than before, a small bonus!

Congrats on the 4 years.

Pam

hi jeri
I have a pet scan every 2 month,blood test eevery 2 weeks,neuprogen shot 2 times a week,my onc told me already since I had mets to ovaries and almost 18 lymphnodes possitive I will be on maitenance chemo for the rest of my life,the only thing different will be I go every 3 weeks instead of every 2 weeks and they will not use the oxiliplatin,as far as your oncologist is concerned MD Anderson cancer hospital is 30 miles down the road from me,and everyone wanted me to go there,I chose to go to the oncologist I'm with now because I got good response about him plus he spend 5 yrs at MD Anderson,he is kind, compassionate, and he truly cares about his patients,my family love him.and since both myself and my grandfather had colon cancer he told me to test for the lynch gene because of my kids,I do not cary the lynch gene.Thank God.Jeri you will do great with your treatment if any problems a good onc will work with you a bad one you need to leave.God Bless you

Doris

joj56 said:

Hi Kathy
Thanks for the information. I am printing out your message, because it does inspire me. I thought I was the only one to have 13 positive lymph nodes.
I am glad to hear you are doing so well.
How often do you have dr. visits now? Do you know after a period of NED do the doctors consider you cured?
How did you handle the neuropathy?
Did you ever get depressed before your 12 treatments were up?
Don't mean to be nosey, just wanting to know more about your experience. I take it you only had to do one series of treatments?
Thanks again for sharing Kathy. Great picture too!
Peace
Jeri

Answers to your questions, Jeri
Jeri -

I had six months of chemotherapy (the latest FOLFOX that was available at that time). I had 12 treatments, one every other week. Only my last treatment had to be delayed by one week because my white blood cell counts were too high.

Once I reached the 2 year mark (since diagnosis), I see my oncologist every 6 months. I'm now at the point where I don't have to get CT scans at my checkups anymore, just bloodwork. I didn't even have to have a colonscopy last year.

The neuropathy was tough. I never took any medication for it, though. (I don't even know if there is any medication to help with that.) The best gift I received when I was going through chemo was an electric blanket from my husband. Because it was winter when I was going through chemo, I stayed inside alot.

It probably has taken about 3 years for the neuropathy to subside, although it will never be completely gone. The adverse reaction to cold from the chemo was probably one of the worst side effects. I drank a lot of Propel water that I stored outside the fridge so it was room temperature. I either used gloves at the grocery store to pick up cold items, or my daughters took care of the cold items. It is such a joy to be able to eat ice cream now!

You hear alot about losing weight during chemo, but I gained weight, and it seems that isn't that unusual. Unfortunately, I can't seem to lose the weight (maybe it's the ice cream!)

Looking back, I don't think I was too depressed during treatments. I found that doing other things to take my mind off the cancer helped. I was in the midst of getting my master's in teaching when I was diagnosed, so I continued to take classes (primarily online), which helped so much.

To be considered "cancer-free", you have to reach the five year point from your date of diagnosis, but again, my oncologist said that going 2 years without a recurrence is significant with a colon cancer diagnosis. My email address is mk1117@aol.com if you ever want to email me with any specific questions or encouragement.

Take care and hang in there!

Kathy

My doctors prescribed prozac right after my diagnosis, which I still take daily. I also took anti-anxiety medication (still do as necessary), especially before every treatment.

Welcome!
Hi Jeri,

I am glad you have found our group and that you have gotten such great information from fellow survivors. You became a survivor the day you were diagnosed so wear that hat proudly!!! I was diagnosed stage 3 in October of 2003 and have remained cancer free since completing my chemo in July of 2004. I was one of the first patients in my area to receive Folfox and was able to complete all 12 cycles without too many problems. On my first treatment, the nurses forgot to give me any anti-nausea meds, and I ended up in the hospital with a bowel obstuction as a result. So, be sure and asked for the meds and you will be fine.

You sound like you have a great attitude and that will serve you well in your battle. I wore bright colors to chemo and always had on seasonal or funny socks. They served as an icebreaker to those around me getting infused. Since I always went to my treatments alone, I spent a lot of time making new friends with those in infusions chairs next to me.

Come here often, Jeri, for support and information. We will be with you on your journey to complete healing.

Hugs,

Kay