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Scan results - calling on the posse for some help

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

Hello all

Well the results of the PET/CT Thursday showed progression on all four lung nodules, two now 1.1 and 1.2 for which the good news was that now they can do a CT guided needle biopsy instead of VATS. This news is very deflating (no pun intended. I've been feeling great, keep getting stronger, honing my diet, exercising, TCM, plus IV C and Iscador, and really was hoping for stability since the Sept scan showed little progression on the lung mets. And every thing else is fine including "great blood work" says the doc, with a CEA of 1 (.9 in Sept). Sigh. Who knows I guess, could've been worse if I'd just been sitting around watching TV eating bon-bons. But geez, this sure is frustrating. Also sure am not jumping up and down happy about chemo in the near future. This past year and a half w/out it has been very nice.

So back to SLC Monday to meet with thoracic surgeon and discuss options. Needle biopsy scheduled Tuesday unless thoracic guy wants to do something else. Asked that they send a sample to Caris for genotyping (mixed reviews amongst Huntsman oncologists on Caris trial results because of the number and type of tumors tested, and the docs in the trial with a money interest in Caris). Also nice to know my oncologist knows Dr. Lenz and has spoken with him.

So I welcome any info, strategies, support, cyber flowers and agave nectar etc etc. Thanks for being there you all.

all the best, Leslie

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Can't really give any advice, I leave that for the experts here....

Please keep us posted, dearheart!!!

Hugs, Kathi

Lori-S's picture
Lori-S
Posts: 1287
Joined: Sep 2010

Well geez! I can feel your frustration. Seems like your feeling well and doing everything right.

You have all the cyber hugs, flowers and agave nectar (I know you don't mean tequila - but if I felt better, I'd do a shot in your honor if it meant it would help) from me that you could ever need. I will be praying that your team comes up with a great strategy and that the biospy goes well for you. To better days! HUGS

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Leslie,

You will get no flowers from me darlin. You and I are just mentally going out into cyber space and brush hog one big *** field. The field, in my mind, is just full of small scrub oaks and cedar trees. We both be driving L4240 HST Kubotas, pulling 8 foot brush hogs.
The others here will not understand this post, but I know you do.

Kerry

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

...of what you speak...

One question, can I come, too????

Hugs, Kathi

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Not an ounce of shy in your body girlfriend, stop blowing smoke.

Happy Holidays!!!

Lisa P.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

ROFL!!!!

Happy Holidays to you, too, dear Lisa!!! (It's to be 80 degrees here in So Cal this weekend...warm and toasty, and decidedly time for naked happy dancing...lol!)

Hugs, Kathi

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Kathi darlin,

Hell yes you can come with us. I got a damned extra Kubota now parked there for ya.

Hope you know how to handle it as I don’t want any rocks hitting my head.

Kerry

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I am a gal of many talents...I can also drive a fruit truck...learned when I worked for Sunkist Growers...first time in my life I had to double-clutch!!!

I'll be real careful with that precious head of yours, my dear....I promise!!!

Hugs, Kathi

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

with a 6' ft brush hog will be my steed of choice my dear. Onward!

thank you Kerry,

and thanks to you all for your well wishes. I like the cyber hugs and flowers too, my dear ones.

Leslie

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

You know I there with you Leslie. Give em hell buddy.

Lisa P.

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

I can't give you advice, but like Kathi sending you cyber flowers and hugs.

AnneCan
Posts: 3692
Joined: Oct 2009

I am sorry you have had progression in your lungs. I am sending you cyber flowers (can't believe how inexpesive they are) + cyber hugs. I think that because you have strengthened yourself so much you will do well in this next leg. Also, I know it must be hard to think of chemo after a 1 1/2 year break, but that break is going to help you deal with the chemo that much better. Take good care, my friend.

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

anything you need! from here leslie!

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Damn Leslie. I was hoping for better news. After speaking to Dave I was in a bummer for you both.
Did they who was doing the trial at Huntsman ?

I have a friend on the board here in Salt Lake that has been to see Dr. Lenz. She seems to like him. I hope you will continue with feeling good and keeping the hope going. We think of you every day. Sorry we couldn't come see you guys... John is wanting it over. He is ready. I am not!~ Love to you and Dave, Paula

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Sending you some cyber agave nectar, Leslie! I love that stuff and the cyber version has no calories at all :)
I'm sorry to hear the news of the progression in your lung nodules- truly- but, sounds like a plan of action is happening & I know you're a fighter.
No one ever looks forward to chemo & I know all too well the dreaded and disappointed feeling of having to start it up again.

You take care- cyber hugs to you too- hope you can feel it & know it's heartfelt :)

Lisa

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

Hi Leslie,
I dont have any wisdom but sure can send you a sincere prayer.
On it's way !!!!
Tom

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Leslie,
I am so sorry that things have grown. I'm glad to hear that your CEA is good though. I think you are in a much better place to deal with this since you have been taking such good care of yourself. There is so much mentally, physically and spiritually that is good when we take care of ourselves. I'm thinking of you as you prepare for the next steps. I'm sending you cyber sunsets and beautiful waves. :)

Aloha,
Kathleen

taraHK
Posts: 1961
Joined: Aug 2003

Hi Leslie,

I'm so sorry about the disappointing scan results. Good that they feel they can do CT guided needle biopsy now (I've had that previously for lung met). And it does sound like you are getting a plan in place, and have a good team.

I've had lung met on three separate occasions -- now dealing with bone mets. But, it's been almost 8 years since I was diagnosed. I'm still working full-time (well, kind of!), active social life. My current chemo regime is "do-able" with minimal side effects....I'm glad to be alive.

Sending all best wishes your way, as you get back up on THAT horse again....

Tara

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Leslie - This is really upsetting to me. I've always enjoyed reading your story and posts. Don't get frustrated about whether or not you would have had the same outcome if you had been eating bon-bons. It seems like you have been living the way you want to live, and that is what is important. You are healthy and strong - and smart. You'll get through this phase.

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

My support is there for you hun.
Sending cyber flowers, hearts and hugs your way!!!
Winter Marie

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Sorry that I don't have any advice, but I will be praying for you.

*hugs*
Gail

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Leslie, I am sending good thoughts and vibes your way. Hang it there. We are pulling for you.

Lizzy

Luv2lunch
Posts: 272
Joined: Aug 2010

Leslie,
Wishing you all the best. Prayers and good vibes coming your way. Please stay strong.
Linda and Ellie

geotina's picture
geotina
Posts: 2118
Joined: Oct 2009

Not the news I wanted to hear. Here is a big cyber hug to get you through this next phase. You are physically strong and in good shape to get through this next phase and get through it you will.

Wishing you nothing but the best - Tina

Nana2's picture
Nana2
Posts: 255
Joined: Mar 2010

Our support and prayers are with you Leslie.
(((HUGS)))
Jim and April

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