Jeanne A
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  • Pleasant Hill, CA
  • United States
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Jeanne A's Discussions

Stage 4? Chronic Cancer? A special chat time for us!

Started this discussion. Last reply by Lisa Aug 1, 2013. 18 Replies

Hi Everyone,Last time I posted I was looking to learn who else in our community has Stage IV CRC.  We had over 50 replies to that post, and MyCRC/CCA has created something just for us!  We are going…Continue

Tags: new, chat, IV, 4, Stage

Ever had drains from your liver, or other drains?

Started this discussion. Last reply by Vanessa Dec 17, 2012. 9 Replies

Hi - I'm asking this question for a CRC survivor friend.  Yes, she SHOULD be a member here, but has not yet discovered the joys of myCRC.  Anyway, she just had a liver resection about a month ago.…Continue

Tags: resection, liver, drains

Stage 4? Let us know who you are!

Started this discussion. Last reply by Sheridan Folger May 20. 194 Replies

Hello everyone, we have had a few new members join this community who are Stage 4.  I know we all like finding those who have cases as similar to our own as possible, to share experiences, etc.  If…Continue

Tags: stage, connect, 4, support

Having problems with Chat Room, or website?

Started this discussion. Last reply by Katie Matusik Feb 2, 2012. 2 Replies

We have a new Chat Room module installed on our website.  Some people have been having problems with being bumped out of the room, or having the computer freeze while trying to chat.  Some of these…Continue

Tags: problems, technical, room, chat


Jeanne A's Page

Latest Activity

Cruiser liked Jeanne A's blog post Saying Goodbye
Jeanne A left a comment for Really
"Really, I'm sorry you are having computer issues.  We love when you're in the chat room...xoxoxo"
Jeanne A replied to Crawford Clay's discussion Still Rectum Free
"Congratulations, Crawford!  We're so lucky/blessed to have you still around!"
Aug 20
Jeanne A replied to Karen's discussion Would love to hear from Stage 4 Survivors
"Hi Karen, and welcome to one of the most welcoming communities I know!  Hear ye Hear ye, I'm also a stage 4 survivor. I was diagnosed in October 2005, still have active disease, and still in treatment. You can take a look at my profile if…"
Aug 19
Jeanne A replied to akenney's discussion Low platelets, no treatment - anyone else have this experience
"Hi Alan, I have not had treatment held due to low platelets.  I have friends who have had that happen. I've had treatment held due to low white count.  It IS frustrating when you just want to get through your cycles of chemo, and…"
Aug 12
Jeanne A left a comment for Jamie
"Hi Jamie, I've been missing you in the chat room!  I understand you are in the hospital - I'm so sorry!  Please let us know how  you are doing when you can.  Thinking of you.... Sending healing energy and big big…"
Aug 8
Jeanne A posted a status
"Sorry to have missed stage 4-um. Crisis with my mom & memory issues. She's started wandering out of the bldg. She needs help 24/7."
Aug 6
Jeanne A replied to Jeannie Moore's discussion Carbs and gut microbes fuel colon cancer
"This is a subject that fascinates me also.  I have always eating more on the healthy side than not.  My dad had high bp and high cholesterol when I was growing up, so we ate very few fried foods, I was raised on nonfat milk, and low fat…"
Jul 31
Jeanne A posted a status
"Sorry I missed Stage 4-UM and chat this morning. I'm fine - was napping through both of those chats!"
Jul 30
Jeanne A posted a status
"Well, I knew it would happen, just not so soon - CEA up a few points. Good thing I know the next step - add Avastin! *sigh*"
Jul 29
Jeanne A posted a status
"Sorry I missed Stage 4-Um today - I fell FAST asleep!"
Jul 29
Jeanne A replied to Renee Scott's discussion Clinical Trials
"Hi Renee, What does your doctor suggest for the current course of treatment?  If your husband is weak, I worry that he would not be able to take more chemo.  Have you ever gone for a second opinion?  If you are doubting the path your…"
Jul 28
Jeanne A replied to MrsStewy's discussion Loss of taste
"Take a look at the cookbook "One Bite at a Time", by Rachel Katz.  She is a chef, who's dad had cancer.  This cookbook is good for people with tasting issues from chemo.  Give it  try! Amazon-One Bite at a…"
Jul 25
Jeanne A posted a status
"New blog post - some writings from writing group."
Jul 18
Kimberley Anne Elliott liked Jeanne A's blog post Dr Lenz consult - summary
Jul 14
Jeanne A posted a status
"My onc is the best, accepted all of Dr. Lenz' ideas, no questions asked! Next infusion add avastin. CT tomorrow as a baseline."
Jul 11

Profile Information

First Name
Last Name
SF Bay Area
US State or Territory
How did you hear about My CCA Support [select all that apply]
Healthcare Provider, Other
Race and Ethnicity [select only one]
White (non-Hispanic)
What is your connection to colorectal cancer [select only one]
Were you or your loved one diagnosed within the last 6 months with colorectal cancer [select only one]
Type of Cancer [select only one]
Colon Cancer
What stage at diagnosed [select only one]
Stage 4
Chemotherapy Received
Fluoroucil (5-FU), Xeloda (Capecitabine), Avastin (Bevacizumab), Camptosar (Irinotecan/CPT-11), Eloxatin (Oxaliplatin), Erbitux (Cetuximab)
If you have metastases, please note where
Abdomen, colon, lymph nodes, and spots in lower right lobe of liver
About Me
Diagnosed with Stage 4 Colon Cancer 10/17/2005
Surgery #1, sigmoidectomy 11/05
Surgery #2, hysterectomy, oopherectomy, omentectomy, appendectomy 1/06
Chemo Course #1 FOLFOX + Avastin 7 cycles, dropped Oxali for last 5 - summer/fall '06
Surgery #3, hernia repair and tumor removal - Recurrence #1 7/07
Chemo Course #2 FOLFIRI - fall/winter '07
Recurrence #2 & Chemo Course #3 FOLFIRI - spring/summer '09
Recurrence #3 & Chemo Course #4 FOLFIRI - summer '10
Intestinal Blockage and ER/Hospitalizations July/Aug '10, started TPN via PICC line with only liquids orally - Aug '10
Insertion of PICC line provoked a clot, so put on blood thinners,
Started with Lovenox, switched to Arixtra cuz it's 1x/day
Weaned off TPN, back on solid food - March '11
Chemo Holiday began - July '11
Current diet restrictions - low fat, low fiber
Re-start chemo, course #5, FOLFIRI - Dec '11
Taken off blood thinners at recommendation of expert @ UCSF
Pulmonary embolisms - March '12
Add Blood Thinner Lovenox to the daily routine again
Add a nephrostomy tube and bag to the list, 11/12
Add Erbitux to the FOLFIRI starting 4/17/13.
Erbitus/FOLFIRI not keeping cancer stable, switched to CAPOX, or Xeloda and Oxaliplatin.


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Jeanne A's Blog

Dr Lenz consult - summary

Posted on July 2, 2014 at 12:32pm 5 Comments

Summary of 6/30/14 visit with Dr. Heinz-Josef Lenz, Norris Cancer Center, USC

First I'll give you the facts, then I'll share with you my observations and interpretations.

The integrative part:

1. no red meat

2. no refined sugar

3. Vitamin D3 3000 IU/day

4. Vitamin B6, 300 mg/day

5. Probiotics 3x/day

6. Milk thistle 3 - 4 caps/day

The treatment plan going forward:

1. Right now, add Avastin to my chemo regimen.

     a. My onc…


Thoughts and Reflections - my EIGHT YEAR ANNIVERSARY!!

Posted on October 16, 2013 at 11:57pm 2 Comments

Amazing, really. EIGHT YEARS since my cancer diagnosis. The average is 2 yrs.  I'm still hanging in there.  I'm SO appreciative of the circumstances contributing to my longevity.  Call it being blessed, or fortunate, or lucky...regardless, I'm incredibly appreciative. 

I've been remembering some of the rough spots over the past 8 years, and there have been a few!  I've been remembering some of the 'jewels' I've discovered, even the more obscure ones.  Like the elderly woman I…


Saying Goodbye

Posted on August 6, 2013 at 12:56pm 3 Comments

In anticipation

Of the separation

We create frustration

and aggravation

and irritation.

We get caught in the emotions

Not realizing, we go through the motions

Somehow we create commotions

No fixing it, not even magic potions.

Maybe its easier to leave,

At least, so we believe,

With such skill we 'upheave',

And others want a reprieve

From the chaos we've achieved.

Yes I'll…


Taking a Chemo Break - YAY!

Posted on July 22, 2013 at 8:14pm 1 Comment

Based on CT scan results from last week, which showed stability and slight shrinkage, my onc and I have decided I'll take a chemo break for 2 - 3 months.  We discussed the advisability of this, considering I just started erbitux a few months ago.  I don't want to lose the ground we've gained from adding erbitux.  We talked about possibly dropping everything but the 5fu.  The onc's comment was that because I'm moving next month, let's give my body a chance to get some energy back, and let me…


Comment Wall (500 comments)

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At 9:05pm on June 14, 2014, Albert said…
Glad to know you Jeannie! Okay we are the same condiition and i been trying to know people same as ours. Happy to know you are doing good. I hope and always pray we live a long life. Sometimes i am fantasizing if i can turn back the hands of time i would have known earlier and have it diagnose earlier then we would not be in this condition. I still hope to get well. With God nothing is impossible!
At 12:57am on June 14, 2014, Albert said…
Hi Jeanne! I was diagnosed 2012 stage 4. I am doing good right now. Thank God i am still on chemo. How about you? When were you diagnosed? I would really glad to meet other people with my condition. God Bless!
At 7:14pm on June 2, 2014, Stanfordmom said…
Hi Jeanne,
So great to have connected with you! yes, I am John's wife, and looking forward to talking to you!

At 6:45pm on April 18, 2014, MikeC said…


At 11:17am on February 15, 2014, Paul said…
Hi Dear,

Just wanted to let ypu know our son Blake and and I are sitting here watching "how it's made" favorite for a ten year old.

But anyway we were chatting about how great you are and all the super support you give.

We are thinking about you and sending good thoughts. Please try to have a wonderful day and do something for you!


Paul and Blake your warriors
At 2:34pm on February 14, 2014, Crawford Clay said…

I understand be nervous and depressed. You've had quite a struggle.  Hoping and praying for good news.

At 11:01pm on December 28, 2013, iamhealed said…

Hi Jeanne, thanks for the warm welcome! I am excited about participating in the group chat and Stage IV survivor group next month. I am just so glad to find a group that will allow me to make friends and be supported all at the same time. I was diagnosed last year and I just want to find people who understand what I'm going through. I really think this group will be very helpful for me.


I look forward to chatting with you and getting to know you :)

At 5:03pm on December 23, 2013, Jamie said…

Doing well had my chemo wa  today so I'm a little tired. My main side effects have been neuropathy and sensitivity to cold. My hair has thinned a  little used to be really thick. Past chemo drugs I been on the Oxiplatin,  Avasitin, Folfox, Folfiri.

 Down to  one chemo drug now Verbirtix.  Merry Christmas to all.

At 8:47am on December 22, 2013, Mark McManus said…

Hello darlin', wishing you a happy and joyous holiday season and nothing but good things in the new year. The past year has presented you with many challenges, and you rose to the occasion every time. I am positive that you will keep doing so with every new challenge that arises, and know that I am always sending good thoughts your way. Love you! 

At 1:26am on December 5, 2013, Michael Carver said…

Hi Jeannie,

I apologize for responding to your kind tidings this late. A Happy Chanukah to you and yours. I'm still doing what I do best "staying alive" lol. 8.5 years and apparently God isn't done with me yet. Colleen is doing great and you know cancer is cancer going to try something called Gemcitabine. I have been given everything under the sun and I fear one day my cancer cells will say trick me once but you cant trick me twice and we (cancer cells) aren't going to die because we had all the cocktails you could throw to us. Not negative thinking but through the years this has happened to a lot of my friends, and maybe yours as well. It is a reality. Stage IV any way you cut it is terminal and everyday my eyes open I thank god for another day of life. I know attitude is a big part of this fight but then again through the years "the best attitudes to fight and survive have not worked unfortunately for some of our friends that we both know. I am not a Debbie Downer its just you (not you of course) can paint any picture around Stage IV Met Colon Cancer. We dance with the devil daily with this and we pray that God still needs us here. I heard something it goes like this: "If your not afraid to die then your not afraid to live" A lot behind that. I have had my bouts and doubts throughout the years. This short note to you Jeannie is not to crush the hope, desires, miracles, etc of the newbies and even us. We all have serious issues and for so long I have taken mine lightly. Now I have bowl problems tmi I know "its always about the tush" lol, and trying new drugs doesn't thrill me one bit. God Bless the ladies and gentlemen on here and worldwide that "beat" this monster but from someone with almost 9 years survival never live on your laurels because expectations can be broken in a nano second and there we go we are back in the "game" called lets beat cancer. Jeannie the reason I bring all of this up is because the longer we are blessed on this earth others are touching the face of God which is a good thing of course. War is bad enough however, cancer comes and goes as it pleases and takes no prisoners at the end that is the reality. Again, god Bless the many troops, fighters, warriors, what ever we call ourselves in this battle but never lose site this is a rabid disease that needs to be taken serious and followed up per your appointments, etc. Take care Jeannie, sorry to be on the soap box. There is always hope look at us 8 plus years I one day want to say 20 years "but" the future is not told to anyone we just have to wait and see. Love Michael


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