Just a shout out to REB

topazil · Senior User Joined: 26 Aug 2009 Posts: 108

Hey REB, just noticed your right around a month and a week to go, how are you doing? Are things seeming to be on schedule? Looking forward to hearing an update and (((((((((((((((HUGS))))))))))))))))))))
_________________
Total hysterectomy July 23 2008, mass felt in colon during surgery.
Colonoscopy Aug 2008
Colectomy Sep 2008
Stage IV Colon Cancer metastasized to lungs and liver. (T3,N2,M1,G2)
Started chemotherapy: 09/14/09
Latest chemotherapy session: 11/09/09 - Folfox 6 = Oxaliplatin, 5-FU, Leucovorine with
Avastine.
Started CEA Level when first diagnosed = 10
Highest CEA Level so far 409 on 9/21/09
Most recent CEA Level = 113 on 11/09/09

DulcimerGal · Posted: Fri Oct 16, 2009 11:37 pm Post subject: Re: Just a shout out to REB

Hey REB - I'm wondering too.....update us - it's the weekend and I gotta get my prayer list in shape!

Hey with your superpowers now as ADMIN - just wondering - is it possible to post a Prayer list thread that will always stay on top?

I thought if we could do that - our posters and even lurkers can put their names and/or prayer requests on there so those of us who are prayer warriors can be a bit more specific than - Hey God - I am praying for everyone on the Colon and Rectal forum.......

Just wondering.....I will light my usual candle for you this weekend
cheers
DulcimerGal
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Five rounds of Xeloda (chemo) to ZAP anything left!

wytyspy · Experienced user Joined: 13 Nov 2006 Posts: 55

Did anyone ever hear how REB is doing?

topazil · Senior User Joined: 26 Aug 2009 Posts: 108

Not as of yet, anyone else?
_________________
Total hysterectomy July 23 2008, mass felt in colon during surgery.
Colonoscopy Aug 2008
Colectomy Sep 2008
Stage IV Colon Cancer metastasized to lungs and liver. (T3,N2,M1,G2)
Started chemotherapy: 09/14/09
Latest chemotherapy session: 11/09/09 - Folfox 6 = Oxaliplatin, 5-FU, Leucovorine with
Avastine.
Started CEA Level when first diagnosed = 10
Highest CEA Level so far 409 on 9/21/09
Most recent CEA Level = 113 on 11/09/09

DulcimerGal · Posted: Thu Oct 22, 2009 7:14 pm Post subject: Re: Just a shout out to REB

Not here either.

REB - hurry up and post - don't make us worry about you!
_________________
Rectal Cancer diagnosed Valentines Day 2008
Finished 6 weeks of radiation and chemo 4/23/08
Surgery to remove tumor - June 18th 2008
Colostomy Reversal August 20th 2008
Five rounds of Xeloda (chemo) to ZAP anything left!

pam51255 · Posted: Fri Oct 23, 2009 2:41 pm Post subject: Re: Just a shout out to REB

REB-- Hope you're doing okay. You're in my prayers.
_________________
Rectal Cancer stage III diagnosed May 8, 2008
Surgery June 5, 2008(Didn't get it all)
Xeloda/radiation 6 weeks
2nd surgery & Ileostomy Sept. 25, 2008
6 months chemo Nov. 17th,-May 14th 2009
Enlarged Spleen
reversal Oct. 12, 2009
Age 54 NED

sheila · Senior User Joined: 24 Jul 2008 Posts: 265

REB your in my prayers too..

REB · Posted: Mon Oct 26, 2009 2:09 pm Post subject: Re: Just a shout out to REB

Thank you everyone for your concern Smile

On Friday I went to MD Anderson for my CT scan.

Saturday morning I woke up to an sore right eye. It felt like something was scratching it. I have been loosing all my eyelashes, so I thought maybe one had gotten in there. My eye got worse on Sunday so this morning I went to the eye doctor. Turns out I have an eye infection. I have never had one before, but with my immune system so low, infections are a high risk.

So I got some eye drops to take care of that.

Then I went down to MD Anderson to find out my CT results. I got good and bad news. The good news is that all the tumors are gone. Once again, they can't see any cancer in my body.

The bad news is I am going to have to be on maintenance chemo indefinitely. Apparently, with my type of cancer (They are calling it something like Peratinal (sp?), with it being in the adipose tissue around the colon, it is hard to kill all the individual cells that may be lurking in the tissue. The odds are I'll see tumors again in a year or so if I stop chemo.

So they want me to finish up my last three rounds of chemo, then take a month off. Then I will start doing Erbitux every other week until either it stops working, or they find something better.

I am kind of bummed about that. There is no end in sight. I would like to know I can kill all the cancer and be done with it. I could take the chance, stop chemo, and see if it comes back, but then I would be back where I started.

Erbitux by itself is not to bad. Mild side effects, the worst being the effects on the skin. I should be able to go on to a fairly normal life.

Anyway, right now I appear to be cancer free, but the odds are it will come back if I don't stay on the Erbitux. It is my choice to continue or not. I'll go with the odds and stay on it.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor & Temporary Colostomy
11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil), leucovorin & oxaliplatin. Also Avastin
04-09-08 Finished Chemo, 04-28-08 Colostomy Reversal
06-02-09 1 Tumor on outside of colon & 2 in the adipose tissue - same cancer- SUV 5
06-23-09 FOLFIRI and ERBITUX chemo.
08-18-09 Tumors have shrunk. SUV 1
10-26-09 Tumors gone.
11-25-09 Finish FOLFIRI - Jan 2011 Finish ERBITUX?
Age Diagnosed 40. Current Age:42

sheila · Senior User Joined: 24 Jul 2008 Posts: 265

great to hear you are cancer free as of now-and maintenence therapy isnt so bad considering it could be for trying to shrink etc. If the side effects arent too bad for you then hey you can look at the same as taking suppliments or vitamins as maintenence...right? and still go on with your life. (dont take this comment the wrong way-Im not making light of the issue)-just trying to think of it in a more positive tolerable view.
Smile

REB · Posted: Mon Oct 26, 2009 2:44 pm Post subject: Re: Just a shout out to REB

Thank you, sheila.

I am fortunate that I am still alive considering I almost died 2 years ago. Every day since then is an extra day I might not have. And I am fortunate ERBITUX killed the tumors.

I was hoping to be one of those who could say they are cured after five years, but it doesn't look like I will. I guess this will be with me the rest of my life. But as long as I can keep it under control, I should be okay. And who knows, maybe one day I'll be able to say I beat it.

I guess I am bummed because I am a fighter and I wanted to beat this. Maybe I can't beat it, but I can keep it from beating me. And that is what I'll do.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor & Temporary Colostomy
11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil), leucovorin & oxaliplatin. Also Avastin
04-09-08 Finished Chemo, 04-28-08 Colostomy Reversal
06-02-09 1 Tumor on outside of colon & 2 in the adipose tissue - same cancer- SUV 5
06-23-09 FOLFIRI and ERBITUX chemo.
08-18-09 Tumors have shrunk. SUV 1
10-26-09 Tumors gone.
11-25-09 Finish FOLFIRI - Jan 2011 Finish ERBITUX?
Age Diagnosed 40. Current Age:42

bruce henderson · Regular Joined: 27 Jul 2009 Posts: 35 Location: georgia

hey reb glad to hear you dodged the knife. i am ,sorry to say, i'm not as fortunate as i am waiting for admission once again for two procedures. one for another liver tumor by rf ablation and followng surgery to treat bone met. in my hip. other spots show in bone scan on spine and shoulders but do not show hot on pet scan. i sometimes wonder when it will ever be over. i've passed the 5 year mark. all my best b.henderson

wytyspy · Experienced user Joined: 13 Nov 2006 Posts: 55

Hi Reb,
I am so happy to read your response. I am sorry you have to continue on with chemo. I posted about my husband on the topic On the Road Again. He is going down the road again. Scheduled for third surgery, second liver surgery next month. Then they want him to have more chemo. He did chemo for a year in 2006. He is undecided about doing more chemo but we will face that when he gets over the surgery. This terrible disease just won't let go. But I hope you can keep the faith and fight with all you have. I will keep all of you in my prayers. Good luck Bruce with your upcoming procedure and surgery.

Blessings to all,
Lucinda

topazil · Senior User Joined: 26 Aug 2009 Posts: 108

(((((((((((((Hugs to REB and to all))))))))))))) Just a quick hello as we are out the door to look at a new condo to move into (more about that and my own chemo treatment yesterday)

To REB (I got tears in my eyes when I read your post the first time, but then I read it a second time and the tears were more for the fighter that You and everyone here are and how grateful I am to read your words and know you are still here with us no matter the circumstances and how brave you all are.

Okay tearing up here again and not good to meet a prespective landlord with blotchy skin and red eyes (how do those actors on tv cry and still look perfect??????????)

Will write later ................................

Edited to add: back and will post more later. Barb and Rob I did not mean to leave you out, I was just rushing out the door, Barb you are with us in spirit and Rob you keep helping us in so many ways and in so many things I never know how to thank you and I know Barb is at your shoulder smiling as you type (((((((((((((((hugs))))))))))))
_________________
Total hysterectomy July 23 2008, mass felt in colon during surgery.
Colonoscopy Aug 2008
Colectomy Sep 2008
Stage IV Colon Cancer metastasized to lungs and liver. (T3,N2,M1,G2)
Started chemotherapy: 09/14/09
Latest chemotherapy session: 11/09/09 - Folfox 6 = Oxaliplatin, 5-FU, Leucovorine with
Avastine.
Started CEA Level when first diagnosed = 10
Highest CEA Level so far 409 on 9/21/09
Most recent CEA Level = 113 on 11/09/09

REB · Posted: Tue Oct 27, 2009 1:19 pm Post subject: Re: Just a shout out to REB

Thanks y'all Smile

I just got back from doing lab work for this weeks chemo.

I guess what concerns me is how this will effect my job situation. I am trying to hold down a job and support a family while doing this. So far, my employer has be very understanding and supportive, but I don't know how far I can push my luck. If I have to miss half a day every other week for the rest of my career, I don't know have they are going to take that. Not to miss missing time to do lab work, CAT/PET scans, doctors appointments. I miss a lot of work doing all of that stuff.

For the last two years, most of my vacation time has gone to days I missed being in the hospital or other cancer related issues.

It is hard to hold down a job and do chemo.

I am going to talk to my primary Oncologist next week to see what the game plan is. I am going to try and arrange it so this interfere as little with my job as possible. Maybe they'll start making ERBITUX in pill form. That would be great.
_________________
10/01/07 - Removal of Stage III Colon Cancer Tumor & Temporary Colostomy
11-07-07 - FOLFOX regimen - 5-FU (5 Flurouracil), leucovorin & oxaliplatin. Also Avastin
04-09-08 Finished Chemo, 04-28-08 Colostomy Reversal
06-02-09 1 Tumor on outside of colon & 2 in the adipose tissue - same cancer- SUV 5
06-23-09 FOLFIRI and ERBITUX chemo.
08-18-09 Tumors have shrunk. SUV 1
10-26-09 Tumors gone.
11-25-09 Finish FOLFIRI - Jan 2011 Finish ERBITUX?
Age Diagnosed 40. Current Age:42

bruce henderson · Regular Joined: 27 Jul 2009 Posts: 35 Location: georgia

hey reb why can't you use the same pump they use for 5fu. i assume you have a mediport. i would go in fri.aftrnoon and get hooked up to the portable pump and they would send a nurse to unhook me on sunday afternoon. it was the only way i could keep my mill running. i realize the erbitux can be given a lot quicker but maybe there is an infusion center near your work place. get it at lunch and return after work. any lpn can disconnect it. you dont have to go back till you have time. i suppose they will require blood woek but it can be done the prior day. JMO bruce

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