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

idlehunters's picture
idlehunters
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!!

Jennie

UPDATE.......

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!!!
Jennie

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Praying for you and wishing you the best news ever!

toyfox's picture
toyfox
Posts: 158
Joined: Apr 2011

Fingers crossed
Wishing you the best.
Linda

smokeyjoe
Posts: 1428
Joined: Feb 2011

Best wishes for a great scan :)

jasminsaba
Posts: 157
Joined: Jul 2011

and praying for GREAT NEWS this afternoon. Sending you best wishes and lots of positive energy.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Praying your scans are great...have a good feeling. Jeff

janderson1964
Posts: 2215
Joined: Oct 2011

I am praying that you will remainNED.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Hugs!

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

"X"

LAF53's picture
LAF53
Posts: 61
Joined: Sep 2011

Hoping for only the best.

Lydia

relaxoutdoors08
Posts: 520
Joined: May 2011

You have our prayers and positive thoughts. Have a good lunch while you wait and catch you later for good news.
NB

Cathleen Mary
Posts: 827
Joined: May 2011

We have your back. Prayers and best wishes for NED...our best friend.

Cathleen Mary

Semira's picture
Semira
Posts: 378
Joined: Mar 2012

All the best wishes from germany!

lauragb
Posts: 370
Joined: Aug 2011

Fingers, arms, legs,....are crossed in support of your NEDness. Prayers your way too. It's 2:45, hope you already know you are NED.

Laura

Annabelle41415's picture
Annabelle41415
Posts: 6154
Joined: Feb 2009

Praying that you get that great news once again. We will be waiting.

Kim

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

Jennie, it is 9 pm. I am a wreck. Praying you are celebrating.
Hugs, Judy

smokeyjoe
Posts: 1428
Joined: Feb 2011

Judy I'm with you, I logged on here to check Jennies update.

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

Posted twice. Sorry.

Varmint5's picture
Varmint5
Posts: 384
Joined: Feb 2012

And prayers sent up - hoping to hear back from you that you got good news.

Sandy

wolfen's picture
wolfen
Posts: 1318
Joined: Apr 2009

Also sitting here and worrying about you. Hope all is good.

Luv,

Wolfen

Luckygirl2
Posts: 308
Joined: Mar 2012

praying from Arkansas you had a great report

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

Sorry hearing the new dx that stinks...cancer go away and leave us alone. You have a great fighting attitude so that is do important in kicking this in the arse. Praying everything goes your way. Jeff

Lovekitties's picture
Lovekitties
Posts: 3323
Joined: Jan 2010

So very sorry to hear that the scan shows more mets.

I know you are one who lets no grass grow under her feet when it come to Kickin' cancer's a$$.

Prayers for your sister, you and other loved ones as you deal with the loss of your brother-in-law.

And next week we will be looking to see you with your sh_t kicking boots on as you get to work on this new recurrance.

Hugs and love to ya!

Marie who loves kitties

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Love that boot comment!!!! Thanks for the support....you too Jeff!

Jennie

Lovekitties's picture
Lovekitties
Posts: 3323
Joined: Jan 2010

Here is the ling Tara provided on a new drug therapy you may have been thinking of:

http://www.medicalnewstoday.com/articles/240536.php

wolfen's picture
wolfen
Posts: 1318
Joined: Apr 2009

Of course, this is not the news we've been waiting for. I see that you have it under control and already have that fighting cap back on. Now as for the boots, that's all I wear so I'll kick some $hit right along with you. That's my specialty.
So sorry also about your brother-in-law. My condolences to your sister and all of the family.

Luv,

Wolfen

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Gol durn it!!! Oh well, as you said, fall down get back up, and I know you will get back up by kicking its royal arse. You go girl. Been thinking about you and your fam.
Winter Marie

MrsJP
Posts: 157
Joined: Jan 2011

Jennie you are one of the strongest women I no! I'm so sorry for your loss and sad that your test didn't turn out better.
HANG IN THERE!!
jp

LAF53's picture
LAF53
Posts: 61
Joined: Sep 2011

not what we wanted to hear, Not about you or your brother in law.
There you go. KICK ARSE!!!!

Lydia

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

i'm sorry for your news. Crap. You are back in the battle and battle you will. Get a game plan in action and just do what you need to do. Sometimes the finish line seems so far ahead so just keep putting one foot in front of the other and keep moving forward.

Hugs my friend - Tina

Semira's picture
Semira
Posts: 378
Joined: Mar 2012

So sorry for this news. But you've the right attitude to kick this beast!

Semira's picture
Semira
Posts: 378
Joined: Mar 2012

double post

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Oh, Jennie... I checked this site so many times to find out the results, hoping and praying for you the entire time. I wish I could just give you a big hug. This really saddens me. I love your fighter attitude. That's what important. You have to keep fighting.

Much love!

Cathleen Mary
Posts: 827
Joined: May 2011

Jennie, this is not the news you (or us, for you) were hoping for but there isn't a cancer out there that isn't intimidated by you. Your strength, attitude, and willingness to go the extra mile is formidable. I hate for you to have to do this again but I know that you can.

Prayers for you and for your sister. A lot to deal with at once.

Hugs,
Cathleen Mary

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

Sorry about your news, but love your attitude. I'm still relatively new to this as a stage IV guy, been through 5 treatments of folfiri, and realize this is going to be a roller coaster. Riding high right now with my CEA down to 1.4, but knowing that it's gonna be one helluva battle. But you, my dear, are an inspiration. Good luck with whatever regimen that you and your onc come up with, and keep fighting the good fight! Hugs, Dan

plh4gail's picture
plh4gail
Posts: 1238
Joined: Oct 2010

You are an amazing woman Jennie! You remind me that making tough decisions is really just putting one foot in front of the other and getting it done when we really might feel like crawling in a hole and wish it would all go away.

Love ya, Gail

jjaj133's picture
jjaj133
Posts: 869
Joined: Mar 2011

O Jennie, I am so sorry. I cannot post what my first thought was. I think you are one of the strongest broads i have ever "Met'. Prayers for you and your sister. Love you my friend, Now go kick cancer back to hell where it belongs.
Judy

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Just know you are not alone on this .Let's go to fight together!
Will pray for you today Jennie . HUGS!

janderson1964
Posts: 2215
Joined: Oct 2011

I am so sorry to hear about the news. You have a great fighting attitude. Get that second opinion or even third opinion until you are satisfied with a good plan of attack.

Jeff

Annabelle41415's picture
Annabelle41415
Posts: 6154
Joined: Feb 2009

I'm so sorry about the news but glad you got the fighting spirit back in you. You've dealt with a lot in the last couple of days. Hoping they can give you a new game plan.

Kim

lauragb
Posts: 370
Joined: Aug 2011

Well that news is crapola. But you, back in the fighting spirit already, you are a fighting spirit, so resilient, a strong opponent of cancer. Here's to kicking its sorry arse again!

Sending love, light and prayers your way.
Laura

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

%$&&***O<&M^&U& (me swearing) Dear Cancer, please leave Jennie alone. Kind regards Big hugs sis :-(

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

Oh hun I'm so sorry to hear this sending hugs Tina

ketziah35
Posts: 1154
Joined: Jun 2010

So sorry to hear about your mets. You're a fighter. Don't ever forget that. We will be sending you prayers from down south.

Ktz

janie1
Posts: 753
Joined: Apr 2011

Hey....we are in this with you!!!

I had read about TrueBeam radiation. A number of places use it. I have no idea if it works better than other radiation, but it would be worth a look in to it. Maybe your oncologist could find out for you......heck don't most of these docs know (of) each other, or about what's happening at other centers.

Thinking of you at this time, too, with the loss of your brother-in-law.

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

Just when you think you are done this beast rears up again.
However, YOU wil fight him Back. I am sure you can do it with the right attitude. Remember we are all in it with you, in good days and bad.

So sorry to hear about your brother in law. In your case when it rains it poors.
Hugs my friend.
Marjan

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

I am sorry to hear about your scans but...wow..you've got a great attitude. Holding you in the Light for strength to kick cancer's arse right outta here!

I am sorry about your brother-in-law. You and your sister are in my prayers.
~Audrey

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I signed on and look at all these responses...WOW...you guys sure know how to make a gal feel good!!! Thank you all for the encouraging words. When I hear you all say how strong I am I think... I am???? I just look at the situation..... HUNT for EVERY possible OPTION.... don't take any ONE persons opinion...and I value the experience from the "old timers" on this board...No, not the OLD people...like John23.... I mean OLD in cancer experience...oh wait thats John23 too!!!! Dang John...your arse is REALLY old in many ways!!! LOLOLOLOL!!! That "OLD" experience is worth millions!

For real tho..... I am happy ...so very happy...that I have this support group...because that is what you ALL do..... Support ME... Hold me up...Keep me strong. Thank you :-)

Jennie

dorookie
Posts: 1736
Joined: Jul 2007

I am just sicken to hear this news, and so very sorry for the loss of your brother n law...Your entire family is in my prayers..but I am saying a very special one for a VERY SPECIAL lady, I am so proud to call my friend....I know this news sucks, but I have all the confidence in you and your strength, your heart, your smarts and I know you will not take this laying down....I admire you so very much, I truly wish I could wave a magic wand and make this crap all go away...I am sending you hugs my friend, and keeping you in my prayers, and always in my heart...

I will be calling you soon...

Love ya
Beth

marbleotis's picture
marbleotis
Posts: 696
Joined: Mar 2012

Sorry to hear your results. When you "kick" use steel toe boots. They are very effective.

Please keep us updated.

Alice

ron50's picture
ron50
Posts: 1720
Joined: Nov 2001

G'day mate,
Why do we keep getting picked on. How many times do we have to pick ourselves up and prepare to do it all again. I remember an old cartoon with two scientists watching a rat going thru a maze. At the end of the maze is a rat trap and one scientist says to the other "who said anything about it being fair".
Yesterday I went fishing in my tinny. The night before I rigged all of my gear because my hands don't work so good any more. Putting my rods in the boat and lost my balance. Pinned my self in the webbing between my thumb and forefinger with a hook . It broke the line so I finished packing the boat went inside and yanked it out with pliers. Went out in the morning ,it was a holiday weekend in aus. Got terrorised by ten million jet skiers,caught a heap of fish. Got back to the ramp in the afternoon,could hardly walk,needed the help of a good samaratin to get the boat back on the trailer. Back home ,wash the boat,clean the fish,stagger thru a shower and collapse in bed at seven pm. All night I dream,of what,winning the lotto and buying a bigger boat. The spirit is strong but the body is week. Just as well we get by on spirit. Jennie your spirit shines like a beacon,hugs and lots of luck.Ron.

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