For a friend: recommendation for a good lung cancer support forum/group?

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Jannine
Posts: 189
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

For a friend: recommendation for a good lung cancer support forum/group?

Postby Jannine » Mon Jun 24, 2019 9:49 am

I have a good friend who has gotten an early peek at her chest PET scan results, and it looks like significant lung cancer in both lungs. Her appointment to discuss the results isn't until Wednesday, so she's in a tough spot of knowing things look bad but not knowing yet exactly how bad. You all have been so incredibly helpful to me, and I'm hoping some of you might know a good place for people in her situation.

Can anyone recommend a good lung cancer support group on the web? Facebook groups should work, too.

Thank you so much.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear

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wwroam
Posts: 760
Joined: Sun Apr 06, 2008 8:13 pm
Facebook Username: Wayne Whitaker
Location: Brisbane, Australia
Contact:

Re: For a friend: recommendation for a good lung cancer support forum/group?

Postby wwroam » Tue Jun 25, 2019 1:43 am

I was diagnosed in 2017 with Stage 3 NSCLC.
I belong on this site but it is not a very active site but the people are helpful.
https://forums.lungevity.org/
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

Rock_Robster
Posts: 495
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: For a friend: recommendation for a good lung cancer support forum/group?

Postby Rock_Robster » Tue Jun 25, 2019 2:18 am

wwroam wrote:I was diagnosed in 2017 with Stage 3 NSCLC.

Jeez mate you’ve had a rough trot. Hope you’re feeling better.
Male 38; Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9.
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic VMAT radiation; complete metabolic response
07/19 ULAR (robot), temp ileo, 1/27 LN
08/19 Missed a liver spot
08-11/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection #2
02/20 Ileostomy reversed
03/20 PET & MRI = NED!

Jannine
Posts: 189
Joined: Wed Jun 20, 2018 7:46 am
Location: Maryland, USA

Re: For a friend: recommendation for a good lung cancer support forum/group?

Postby Jannine » Tue Jun 25, 2019 6:04 am

Man, Wayne. That sucks! I hope you're doing okay.

Thank you so much for the recommendation. I will pass it on.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8
7/19 CT scan clear


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