Brain mets -2nd round

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Brain mets -2nd round

Postby Maia » Sun Mar 09, 2014 2:16 pm

With deep sadness, I let you know that my friend (I'm here in this forum for her), who had a brain met removed by surgery on December 2012, is facing 2 new brain mets, maybe 3 (they are not sure if a lump in her eyelid is lymphoma, that she has since 1998, or colon).
She has been battling lung lesions during all this past year, following the standard of care (chemo) since May. Her last scan shows the lesions are responding to Xelox (even if she had only 2 rounds, with oxali at %60; she had 3 miserable weeks after the 2nd round, so she was in a break when these new brain mets were found).
More sadly, doctors don't consider GammaKnife/SBRT/Cyberknife are possible at this time. She was offered only whole brain radiation as treatment.
I found other amazing technology to ablate brain lesions, offered in a trial at other hospital in Toronto, but she didn't qualify neither.
She had a meeting with her doctors and has accepted WBR; will start radiation this Tuesday.

You may know I'm not a religious person but I have a soft spot for certain taoist/ buddhist take on things (nothing systematic, though), so I'll ask you to keep her in your thoughts/ meditations/ prayers, so she's surrounded by peace, love, truth and yes, joy, in this difficult part of her journey.
(And if you have some remaining good thought, send it my way, that I'm 5600 miles away from her, and here I'll remain, which makes me very sad. I've been working on feeling OK about this since past May 9th, but still have a lot of inner work to do, I feel... I work hard on acceptance but I wish it didn't have to be this way for any of us.)
Nothing else, please... It's a decision taken so she only needs your good thoughts/ prayers. She's registered in this forum (posted a couple of times, here and here) so she perhaps comes here to read any good words you have to say : )
I love you, all, thank you for listening.

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Re: Brain mets -2nd round

Postby singingholly » Sun Mar 09, 2014 2:24 pm

I'm thinking about her. Her story is our story, but the story of everybody also.
A big hug.
Dec2011 sigm IIIst res T3N1(2/18)M0 Xelox
Oct2012 5liv.mets Dec 2012 liv.res
Jan2013 1liv.met Folfiri+avastin
Jul2013 liv.res Folfiri+/av
Feb2014 10+2lu.mets & 1abd node Folfoxiri+SBRT
Sep2014 Res rx l. BUT spot on diaph:SBRT
Dec2014 3+6lu.mets.Immuno

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Re: Brain mets -2nd round

Postby Lee » Sun Mar 09, 2014 2:29 pm


I am so sorry to hear about your friend. She will be in my thoughts and prayers. I've had 2 tumors removed from my brain (benign- same location both times) in the past 25 yrs. It can be such a scary thing. Because of my medical history, I get MRI"s done every 1-2 yrs. Since my cancer diagnoses, I also worry about getting CC mets there.

I hope WBR is successful for her.

rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

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Re: Brain mets -2nd round

Postby Cb75 » Sun Mar 09, 2014 3:21 pm

I am very sorry to hear about the recent turn of events. I will send positive energy her way, as well as yours. You are such a wonderful friend and so supportive to many of us here. Please let your friend know, that if there is anything I can do, just say the word. As you know we are being treated at the same hospital and I am nearby....

39y female Stage IV
diagnosed April 2012
sigmoid resect May 2012
liver resect Aug 2012
Folfox Oct 2012
lungs Sep 2013
R and L laser lung resection Nov 2013/Feb 2014
FOLFIRI and Avastin Apr 2014 ongoing...

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Re: Brain mets -2nd round

Postby NWgirl » Sun Mar 09, 2014 3:25 pm

Sending positive energy, love and strong thoughts to you both. This just never gets any easier does it? I'm so sorry Maia, I hope this gives her more time and quality of life - things we all want.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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Re: Brain mets -2nd round

Postby Oneeyeddog » Sun Mar 09, 2014 3:38 pm

Sorry to hear this, Maia. You're such a wonderful person and you do so much for your friend -- and indeed for this forum, with all the fantastic research and knowledge you impart. Sending you and your friend thoughts and love from Prague, where spring has definitely been in the air today.
Colon cancer Stage 3c (dx April 2013) at age 36
Resection and temp ileostomy (4/17)
12 rounds of FOLFOX (May-Oct 2013)
NED (August 2014)

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Re: Brain mets -2nd round

Postby skypup » Sun Mar 09, 2014 3:43 pm

Maia, I will be holding you both in love and light. (((all beings)))

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Re: Brain mets -2nd round

Postby vilca11 » Sun Mar 09, 2014 4:03 pm

Oh, Maia...this is a very hard one to digest both for your dear friend and you....Very sad... I am sending good energy, warmest hugs and love to both of you from Ecuador and may WBR help her suffering.
11/2005 CC stage 1, F,50yo@dx
Mod dif adenocar, MSS, APC, TP53, CEAs1.6-4.8
1/12 1met liver@Vena Cava, RFA, 3oxi,11 5FU
8/13 2 mets same place,SBRT
4/14 2 Xeliri+Avastin
5/14 Nano Knife liver same 2 mets
6/14 2 Xeliri, ADAPT
4/15 PET, 2 same mets,Cryo Liver
5/15 MJ Oil, Herbs, Suppl, ADAPT
10/15 PET, same area, doubled in size, high SUV
10/15 RH, HAI, visceral involv., no LN
2/16 red FF, 50% red dose FUDR, CEA trends up
3/16 CT, PET, MRI L.Lobe all in small tumors
4/16 No acceptable options, going home

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Re: Brain mets -2nd round

Postby orcasres » Sun Mar 09, 2014 4:35 pm


You do so much for everyone on this board and for your friend. I wish her as much quality of life as possible and you peace and hugs as you continue to help her fight the beast.

63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

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Re: Brain mets -2nd round

Postby curious56 » Sun Mar 09, 2014 4:41 pm

Maia, you are such a true and faithful friend. How blessed Faith is by your love.

My humble prayers being said on her behalf and yours.

dx 12/12 with CC Stage IIIB - T3N2aMO
6/18 nodes +
Resection sigmoid 12/12
Xelox 2/13 -- stopped, BAD side effects
Vegan and supplements
Clear scan 11/13
Met to abdomen - surgery 7/14
Philippians 4:6-7

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Re: Brain mets -2nd round

Postby janderson » Sun Mar 09, 2014 4:42 pm

I have already been keeping her in my thoughts and (please dont get offended) prayers.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

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Re: Brain mets -2nd round

Postby Sharona » Sun Mar 09, 2014 8:01 pm

I feel a special kinship with your friend as our paths are similar. I will have an MRI Thursday to check on the growth of the mets. The neuro tells me that he expects growth to occur. One met or two mets he can treat with CyberKnife, but more than that will require wbr.
Please let her know that I am thinking of her. Brain mets are scary.
Dx CRC mets to lung, brain
Craniotomy 11/12
CyberKnife 12/12
FOLFIRI, FOLFIRI, avastin, Zaltrap
Multiple brain mets.
WBR and pallative pelvic radiation
Hospice 1/21/15

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Re: Brain mets -2nd round

Postby Traveler001 » Sun Mar 09, 2014 10:46 pm

Please consider if Laser Thermal Ablation is a possibility. Depending on how large the mets are, that might be a possibility.
Diagnosed June '07
Laparoscopic LAR surgery - 7/12/07
Stage IIIC 4/21 nodes
FOLFOX6 and Erbitux started 8/24/07
Completed 11 / 12 on 1/15/08
New 4.5 cm lung mass and lymph nodes discovered 7/12
Folfiri w/ Avastin on 9/14/12 - 11/29/12

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Re: Brain mets -2nd round

Postby DogMom » Sun Mar 09, 2014 10:54 pm

Maia.. Sending positive energy to your friend and to you. Thank you for all you do on this board, sharing your research efforts. I hope the WBR helps your friend. It sounds scary to me.
DX 2/08 St 2 Rectal C, 47 y/o
Transanal excision/radiation/Xeloda
mult Lung Mets found 7/09
Xelox + Avastin 5 TX
neuropathy: Xeloda + Avastin 12/09
12/10 40 day Avastin headache, Xeloda
6/11 SBRT lungs
1/13 Regorafenib
11/13 Xeliri-fail
3/14 Gemzar

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Re: Brain mets -2nd round

Postby CRguy » Mon Mar 10, 2014 12:04 am

Sending Love, Peace and Harmony to you and your friend.

Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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