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May 04, 2012 - 10:46 am
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!! Jennie UPDATE....... Sorry to keep you all waiting..... NOT good news. :-( 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!!! |
Joined: Apr 2010
Hey Jennie, Dang. To tell
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
Joined: May 2011
You are an Inspiration to all
Jennie,
You have Grace, You have Courage, and you have us here supporting you. Prayers for a good plan.
NB
Joined: Aug 2010
S#@!
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
Joined: May 2008
Oh man Jennie
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!
Leslie
Joined: Nov 2010
sorry Jennie to hear this
Big hugs,
Pete
Ps keep faith in the Tcm and I would love some company doing the vegan diet therapy.
Joined: Apr 2009
Big hugs
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.
Joined: Jul 2009
Aw I'm so sorry
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
Donna
Joined: May 2009
Hi Jennie, I am so sorry to
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,
Lizzy
Joined: Sep 2010
lots of prayers
Sending prayers your way...
Joined: Jan 2011
That really sucks Jennie...
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.
Hugs,
Pam
Joined: Jan 2009
Jennie
Jennie,
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.
Aloha,
Kathleen
Joined: Mar 2011
I read this today and really like it, it's a pick me up!
"Nothing is impossible, the word itself says 'I'm possible'!” Audrey Hepburn
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