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Drumroll......... **** UPDATE ****

idlehunters's picture
Posts: 1792
Joined: Apr 2009

At St. Louis Univ Hosp NOW getting PET scan. Will have results by 3:00pm TODAY! So I will know if I am still NED or...... NOT :-( Keep your fingers crossed! Let ya'll know later!!



Sorry to keep you all waiting..... NOT good news. :-(
It appears I am now dealing with recurrence #4. I knew when my CEA started rising it was not good as that is always a good indicator for me. I was quite bummed at first....cried a little....asked myself the same "why me?" questions .....and then went into survival mode.

I have 4 new mets..... 2 in each lung.... 1-2cm.... Minimal uptake.... The bad thing is one of the mets is in the Hilum area of the lung and that is an area that cannot be operated on or no RFA there (supposedly) that's the opinion of the rad onc. I cannot and will not have any more Cyberknife as I have too much scar tissue in my lungs from previous treatments and pnemonias. I had a pulmonary function test this morning before my PET scan and it shows too much function loss to lose any more to scar tissue so no Cyberknife for sure.

I have been on Vectibix for several months....almost 7.... And I feel that this has kept things to a minimum but not GONE....obviously. I see my Onc on Tuesday and we will be discussing a new Chemo plan. He may want to take me off Vectibix or just add to it. I have very mixed feelings about this. I could go back and try Folfiri again since I have been off of it so long it may work again.... OR...I could try Folfox...never been on that....but that crap scares the crap outta me....PERMANENT nerve damage is what freaks me out.... I will inquire about that new drug that is due out...the one that starts with a Rog.....? have to look that up. I am also going to get a second opinion on what I can do about that met to the Hilum area. From Sloan..or Texas at Craig's people...or maybe elsewhere...not sure where...just sure I will be seeking more opinions. I have a lot to think about and decisions to make but I am definitely back in the fight again.I have had a nice "vacation" while being NED and I am grateful for that.

I also started TCM a few months back and I don't think it has really had enough time yet to work the way I was hoping and my TCM doc is still tweaking my herbel treatments so I will be seeing him Monday for a new course of action to aide the attack!

This is what being stage IV is all about.... You fall down...YOU GET UP....you fall down...YOU GET UP..... The hard part is keeping a smile on your face!

Many of you know I lost my brother in law Wednesday to a stroke. He and my sister had been together almost 44 years.... He just turned 60. We bury him tomorrow. I will focus on that for now..... But next week?????? WATCH OUT CANCER...... I'M GONNA KICK YOUR ARSE!!!! :-). Now THAT makes me smile

Love you guys!!!

LivinginNH's picture
Posts: 1458
Joined: Apr 2010

Hey Jennie, Dang. To tell you truth, I didn't want to open your "Update" post, I was simply afraid of what it was going to say. Rick and I are so saddened to hear that you have yet another fight on your hands. Sigh... :-(

All our best to you as you start the battle up once again, take care,

Rick and Cynthia

Posts: 520
Joined: May 2011

You have Grace, You have Courage, and you have us here supporting you. Prayers for a good plan.

TMac52's picture
Posts: 358
Joined: Aug 2010

Hi Jennie,
What a f!@#$%G drag. I am sorry for the bad news that you hoped you wouldnt get. I am encouraged by your spirit and you tenacity to fight. You have always stood out with your positive attitude and willingness to help others on this site. God Bless You Girl!
Love Tom

lesvanb's picture
Posts: 911
Joined: May 2008

tough news...

and I totally agree with you;
"This is what being stage IV is all about.... You fall down...YOU GET UP....you fall down...YOU GET UP..... The hard part is keeping a smile on your face!"

lots of love sweetie!

pete43lost_at_sea's picture
Posts: 3908
Joined: Nov 2010

Big hugs,

Ps keep faith in the Tcm and I would love some company doing the vegan diet therapy.

karguy's picture
Posts: 1024
Joined: Apr 2009

I hope everything turns out ok.I will be praying for you.Sorry to hear your back in the fight.Good luck,and keep fighting.I am on my first recurrence,you are not fighting alone.

pokismom's picture
Posts: 153
Joined: Jul 2009

Hi Jennie,
Haven't posted for a while but thought I might give you a shout. I am so sorry for your reoccurrence, it sucks big time. I too have mets in my lungs and now liver. I had four on the right and one on the left. I had three RFA -Ed and Stereotactic radiation on the other two. The first of the two was near an artery so RFA was out because of the artery cooling off the burn. I just returned from Seattle last week where they radiated the last one, hopefully it'll work. I am still on folfiri also. I don't know if this helps you any but my heart goes out to you and hoping for the best!
Much aloha

lizzydavis's picture
Posts: 893
Joined: May 2009

Hi Jennie,

I am so sorry to hear about the recurrence. You can do this! Keep repeating the mantra "I can do this". It will help get you through. I did Folfox and I know many people on here have. It worked well for me.

Sending you love and lots of hugs,

braelee2's picture
Posts: 130
Joined: Sep 2010

Sending prayers your way...

Posts: 207
Joined: Jan 2011

I'm so sorry to hear about the recurrence. Like everyone has said, and I will echo, you are such an inspiration and such a fighter; this is just another 'obstacle' in the fight. You will be in my prayers.



Kathleen808's picture
Posts: 2361
Joined: Jan 2009

Oh my friend, crap! I have been on a few times since you posted this and I just assumed that you were still NED. Crap, and I am so sorry. I am also so very sorry at the loss of your brother-in-law. I know you will come up with a plan but I am just sorry you have to deal with this again.
You are strong.

You're in my prayers.


Posts: 124
Joined: Mar 2011

"Nothing is impossible, the word itself says 'I'm possible'!” Audrey Hepburn


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