Help For PJ

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chixter
Posts: 121
Joined: Wed Jun 25, 2014 5:31 pm

Help For PJ

Postby chixter » Tue Jan 05, 2016 6:18 pm

Hi all. My G~d it is such a long time since I've started a new topic here. I'm sending warm wishes for the new year to all of you, old and new who visit this board. I remember such support and a Member coming through with Tom Petty tickets for my Katie. There exists a similar situation here with one of our own, PJ who also signs in as Peejay. He has been fighting long and hard, has been doing podcasts, and trying just about anything the medical community can throw at him and he has been through a lot. He always was a Sci-Fi buff as well as a movie fan. When he was diagnosed a year or so ago one of his concerns was would he live long enough to see the new Star Wars in 2015. His loved ones got him a ticket for the opening night, but as my Katie was, PJ was not well enough to go. According to his FB and fundraising page he has not much more time with us here. His brother and friends are desperately seeking a screener copy of the new Star Wars movie, so PJ will be able to watch it from his Hospice bed. I know nothing about movies, I've never even seen a Star Wars, but I'd figure I'd use this venue as well as others I can think of, to try to obtain this for him. So if any of you know someone who knows someone etc....lets try to get a copy of Star Wars out to PJ in Oregon.


Namaste,

Greg
ImageFather/Caregiver to beautiful 25 y/o daughter with mCRC Stg 4

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exaussie
Posts: 618
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
Contact:

Re: Help For PJ

Postby exaussie » Tue Jan 05, 2016 6:29 pm

Where in oregon is he?
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

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chixter
Posts: 121
Joined: Wed Jun 25, 2014 5:31 pm

Re: Help For PJ

Postby chixter » Tue Jan 05, 2016 6:43 pm

Beaverton, outside of Portland
ImageFather/Caregiver to beautiful 25 y/o daughter with mCRC Stg 4

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juliej
Posts: 3114
Joined: Thu Aug 05, 2010 12:59 pm

Re: Help For PJ

Postby juliej » Tue Jan 05, 2016 7:55 pm

We just gotta do this!

I remember reading about a similar problem. The patient's friends posted a plea on Reddit, and the message was picked up by social media until it eventually found its way to the director, J.J. Abrams. Abrams sent a DVD to his house with a rough cut of Star Trek Into Darkness - it was 5 months before the release date!!!

In another case, friends contacted the movie studio (Pixar), and they sent a DVD copy of the movie to the patient's house.

So... the studio for Star Wars: The Force Awakens is Lucasfilm. Bloomberg Business lists their phone number as 415-623-1000. That's probably the executive office's generic phone number, but they might be able to point you in the right direction.

Lucasfilm is also a subsidiary of Disney. The main switchboard number at Disney is (818) 560-1000. Again, they should be able to point you in the right direction.

There's also their publicity email: Publicity@Lucasfilm.com

There is also social media:
https://twitter.com/starwars
https://twitter.com/georgelucasilm
https://twitter.com/bad_robot (JJ Abrams, director of Star Wars: The Force Awakens)

Abrams is known for supporting many charities and foundations, so I know he would gladly do this if we could just get a message to him.
Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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chixter
Posts: 121
Joined: Wed Jun 25, 2014 5:31 pm

Re: Help For PJ

Postby chixter » Tue Jan 05, 2016 9:02 pm

Thanx for this info Julie, I'll get on it! Hope you are well :)

Greg
ImageFather/Caregiver to beautiful 25 y/o daughter with mCRC Stg 4

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Help For PJ

Postby jhocno197 » Tue Jan 05, 2016 9:53 pm

I emailed lucasfilm publicity.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: Help For PJ

Postby NateA » Wed Jan 06, 2016 9:38 am

I am not certain he ever saw it :/. I chatted much via FB with PJ as I'm from Oregon, too, and loved to help give him Hope, which he had. PJ said when he was near his fb would be deleted because the thought it was creepy that people goto a dead man's page. His FB is gone. He did leave his chat up, last night that was also down...not sure, but he may have earned his Blue Wings. So freaking sad. Love ya man!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

DarknessEmbraced
Posts: 3817
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Help For PJ

Postby DarknessEmbraced » Wed Jan 06, 2016 10:37 am

So very sad!*hugs* :(
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Help For PJ

Postby jhocno197 » Wed Jan 06, 2016 1:31 pm

:(
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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chixter
Posts: 121
Joined: Wed Jun 25, 2014 5:31 pm

Re: Help For PJ

Postby chixter » Wed Jan 06, 2016 8:03 pm

As of now PJ is going to see his movie!!!!!! He aint done yet. Once again CC members (you know who you are) come through. May the Force be with you! Thank you.
ImageFather/Caregiver to beautiful 25 y/o daughter with mCRC Stg 4

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Help For PJ

Postby midlifemom » Wed Jan 06, 2016 8:29 pm

Thank you Chixter for being the caring person you are and helping to make someone's dream happen. We need more folks like you in the world.
I hope you have a peaceful 2016.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Help For PJ

Postby jhocno197 » Wed Jan 06, 2016 8:57 pm

He's getting to see it?!!??? I'm so excited!!!!
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

User avatar
exaussie
Posts: 618
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
Contact:

Re: Help For PJ

Postby exaussie » Wed Jan 06, 2016 9:17 pm

Fantastic! Thanks to all involved.
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: Help For PJ

Postby NateA » Thu Jan 07, 2016 4:50 am

YES!!!! Good deal!!!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

Sams wife
Posts: 753
Joined: Sun Jan 11, 2015 2:49 pm

Re: Help For PJ

Postby Sams wife » Thu Jan 07, 2016 8:58 am

Well that is just awesome.
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5


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