Brain mets . . . and they're aggressive

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AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Brain mets . . . and they're aggressive

Postby AnnClare » Wed May 10, 2017 2:43 pm

So on March 20, 2017 my husband convinced me to go to the ER. I'd been having a headache for over a week (I rarely get headaches, and this one was BAD), plus I'd begun to have balance issues. No falling, but my equilibrium was off. I'd been on a strict vegan diet + juicing 5# of carrots daily for about 3 weeks at that point and assumed I was just going through a detox of sorts.

MRI found a golf-ball sized brain tumor near my cerebellum. A neurosurgeon was consulted and surgery was scheduled the for the next day. He informed me that IF I had to have a brain tumor, it was in the best possible location for surgical excision. Path later confirmed it was a rectal cancer met and not a new cancer. Fortunately he barely had to shave any hair and no one could tell I'd had brain surgery just by looking at me. He said I'd need radiation once I was healed from the surgery. Being fed up with conventional cancer treatment, as I already felt it failed me, I thought, "We'll see about that."

I was released from the hospital after a week and recovered well. Three weeks post-op I was back at work for 2 weeks of light duty. By week 3 back on the job, I resumed taking on a few clients for massage. During this time, through copious research, I put together an all-out alternative plan that would fix the problem not just the symptom (tumors). IV vitamin C, a largely plant-based diet (no juicing this time), and a truckload of supplements recommended by a very highly-regarded oncology nutritionist. I set up an appointment with a doctor to see about mistletoe injections as well.

Last weekend, the off-balance sensation returned. Surely it must be an inner or middle ear infection. No way could the tumor have come back in 7 weeks.
Wrong.
It's back, along with 2 smaller mets in the right front portion of the brain.
So here I sit, in the hospital, with 2 whole-brain radiation sessions under my belt. They say I'll lose my hair ( :evil: ) and, as for what comes next, well, we'll have to see first how well the radiation goes. There's really no textbook plan for this, as I'm such an anomaly. My onc, who a lead at the local hospital (an MD Anderson affiliate) is having my records sent there, just to get a broader opinion of what can/should be done.

I have tried SO HARD to stay optimistic. I really thought I could fix this by alternative means. Now that's out the window and I'm a little P.O.'ed by Chris Wark and his plethora of videos featuring survivor stories, without all this nasty business. I guess it's jealousy on my part, although I'm certainly glad things worked out well for those folks. But there's an undercurrent of smugness at times that bugs me. (Again, I'm probably just envious and bitter).

So here I sit. 42 and in perfect health, besides the cancer. I feel like everyone around me sees me with a foot in the grave. I keep getting that damned, "Awww, poor you" look from people and it makes me want to scream, "I'm not dead! And by the way, technically, we're ALL dying, I hope you know! Even you!" Yeah, I've got some anger issues right now, I realize that.

At least my onc and I are on the same page. He's into quality of life, over quantity of life. I've told him I don't want to suffer. If we can keep me alive AND FEELING GOOD, we can play ball. But if we're going to keep me alive and I'll have ZERO enjoyment and will merely be a walking corpse, well, that's a different story.

Anyway, that's what's been up with me. Hope everyone else has been having a better go of it lately.
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

stu
Posts: 574
Joined: Sat Aug 17, 2013 5:46 pm

Re: Brain mets . . . and they're aggressive

Postby stu » Wed May 10, 2017 3:36 pm

Oh dear. That's really rubbish and I don't blame you a bit for feeling angry. However I do hope you have every success in getting it under control and bucket loads of quality living.
Much love
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection

fumaros
Posts: 198
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Location: Syracuse, NY
Contact:

Re: Brain mets . . . and they're aggressive

Postby fumaros » Wed May 10, 2017 3:59 pm

I am so sorry AnnClare, i can only imagine how you must feel right now. It is hard to stay optimistic, but hopefully you don't give in to defeat. I pray that radiation treatments come through for you. Hopefully, you can talk to someone who can help you process the way you feel.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6, 7/17 - 0.5
FOLFOX began 6/24/16 - 11/25/16
10 round FOLFOX, 2 round 5-FU & Leucovorin
MRI & CT 8/16 - NED, CT 12/16 - 7/17 - NED

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Bev G
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Location: Quechee, VT

Re: Brain mets . . . and they're aggressive

Postby Bev G » Wed May 10, 2017 4:16 pm

AnnClare,

This is a whole boatload of unexpected and really crummy news. I am so sorry you are having to go through this, and send you warm best wishes for you getting back on track.

Peace and comfort to you!

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: Brain mets . . . and they're aggressive

Postby AnnClare » Wed May 10, 2017 4:53 pm

It just feels like this time, nobody expects me to pull out a win. I thought I was lonely and scared before. This is a whole new low.

I keep feeling like, "I'm not done yet!" But it's just little me in the corner this time feeling that way. I get the vibe from others that this is it, or I'm kidding myself. Maybe I am . . .
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

Lee
Posts: 5076
Joined: Sun Apr 16, 2006 4:09 pm

Re: Brain mets . . . and they're aggressive

Postby Lee » Wed May 10, 2017 5:18 pm

AnnClare wrote:I keep feeling like, "I'm not done yet!" . . .


That right, as long as there is fight in you. You are not done yet :evil: Don't let other people tell you how you should feel.

One constant that stayed with me for several years following my treatment. As long as I was learning something new each day, I felt I was not gonna die anytime soon.

Hang in there (((AnnClare)))

Lee
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 - 10 years and counting!

ams5796
Posts: 2260
Joined: Fri Feb 06, 2009 10:07 am

Re: Brain mets . . . and they're aggressive

Postby ams5796 » Wed May 10, 2017 7:57 pm

I would be angry too. And, I would especially hate that reaction from folks. They don't know what's going to happen. None of us do. You just have to work with your oncologist on a good plan. At least, he's on the same page as you. As you know, anything can happen with this disease. I wish you the best.


Ann
Stage 3C (or 4?) Rectal Cancer 01/07
2/10 lung mets
3/11 VATS
6/11 VATS
7/13 lung met
2/14 SBRT
NED 8/14
5/17 scan and MRI found treated spine met

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: Brain mets . . . and they're aggressive

Postby AnnClare » Wed May 10, 2017 8:27 pm

Thanks for all the support, guys.

Just when I'd adopted a "f--- all" attitude towards food, having whatever I please while here in hospital, a chocolate chip cookie twice a day :), a good friend of mine, who is a holistic nurse, energy worker (Healing Touch) and 11+ year Stage 4 ovarian cancer survivor, came to visit me. She was ADAMANT that the sugar and dairy must go. :( She has worked, and continues to work with, many cancer patients and impressed upon me that those who didn't adopt a healthier way of eating are either no longer here or not doing well.
"But I was a healthy eater BEFORE I got cancer!" I protested. "So was I," she said.

I feel like a little kid throwing a temper tantrum. I eat healthy MOST of the time. Can't I have a little comfort food here and there? This thing makes me feel enough like an outsider as it is, without having to have eat differently in social settings and at work. She said, in much nicer terms, that I basically have to suck it up, re-frame the way I look at food (see it as medicine, not a social or comfort thing), because I'm in a dire situation and my life depends on what I put in my body.
Oh, I'm so fussy right now. I was going to have my husband bring me a Wendy's Frosty & small fries. Instead I texted him asking for an apple and some berries.
I know I"m acting like a big baby right now, because the truth hurts.
Just when I was excited to resume eating bread, cereal, the occasional cookie, drinking REAL milk (not soy) . . . boo hoo hoo!!! But I know she's right. And I DO want to live. It's just, damn, can't I eat what the bleep I want to eat? Everything else about me is healthy - can't I have just this one concession in this hell, this madness?
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

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Maia
Posts: 2414
Joined: Fri Aug 24, 2012 8:00 am

Re: Brain mets . . . and they're aggressive

Postby Maia » Wed May 10, 2017 9:05 pm

AnneClare... my heart breaks knowing you have to gone through this.
It's a dire situation, yes. But for what's worthy, let me tell you that my friend, for whom I came here to the forum, was diagnosed with a brain met on December 2012 --near cerebelum--, had emergency craneotomy, focalized post-surgery radiation and continued living reasonably well more than two years after that. Passed away on March 2015. and never had other treatment than standard of care --meaning, she had not immunotherapies available at that time.
BTW, I asked you time ago if you know if you're MSS or MSI viewtopic.php?f=1&t=57080#p451180 Did you ever find out?

I rarely say people what they have to do but this time I'll do an exception: have your husband bring you a Wendy's Frosty & small fries, and ice-cream, and hug and kiss your husband. If I have at hand your 'energy worker' friend... suggesting to someone with recurrent brain mets that she will be responsible for her healing, or not, if she doesn't give up sugar and diary... good grief. Where is common sense, not scientific knowledge... just common sense and empathy these days? I don't doubt her good intentions but frankly... I would certainly would give her my 'healing touch' if I was there.
Enjoy life, now. Feel you are not alone and people who you will never met are sending you love and best wishes!!!

jhocno197
Posts: 803
Joined: Mon May 11, 2015 9:33 pm

Re: Brain mets . . . and they're aggressive

Postby jhocno197 » Wed May 10, 2017 9:15 pm

I'm with Maia.
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

KElizabeth
Posts: 379
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Brain mets . . . and they're aggressive

Postby KElizabeth » Wed May 10, 2017 9:47 pm

Eat the cake!

I was told to avoid extreme diets while in chemo, and that too much antioxidants and vitamin c could interfere with treatment.
It seems like there's something wrong with every diet. Focusing on complete nutrition without stress an anxiety over small indulgence could at least improve your quality of life.

Take it easy on yourself.
Female age 38- ,two kids, age eleven and fifteen.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFURI plus Avastin - Sept, 2015 - current
Art therapy January 2015 to current
CEA at recurrence:10.1/august, 2015
CEA: 1.9 February, 2016
CEA:: 10.2 December, 2016
CEA: 40.3 January, 2017
CEA: 16.4 March 2017
Facebook.com/natureinink

Lee
Posts: 5076
Joined: Sun Apr 16, 2006 4:09 pm

Re: Brain mets . . . and they're aggressive

Postby Lee » Wed May 10, 2017 9:59 pm

I'm with Maia also. Will explain more tomorrow. Yes eat that cake, the cream pie, the taco LOADED with sour cream, etc. What ever pleases your palette.

thinking of you,

Lee
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 - 10 years and counting!

TXLiz
Posts: 195
Joined: Thu Sep 22, 2016 3:31 pm

Re: Brain mets . . . and they're aggressive

Postby TXLiz » Wed May 10, 2017 10:31 pm

Have the frosty and fries.

No one, no one, no one knows the future.

Take care and keep fighting.
Vomiting and blockage 9/19/16 46 y F
R hemi colectomy 9/20/16
Stage 3 B CRC, located in cecum
3 out of 16 lymph nodes positive
perineural invasion/lymphovascular invasion
infiltrating, mod differentiated adenocarcinoma with a mucinous component
separate tumor nodules present in pericolonic adipose tissue
Baseline PET scan clear 9/16 CEA 0.5
FOLFOX 10/16- 3/17
April 16th, CT scan clear. CEA 1.1
Lynch "inconclusive"

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Maggie Nell
Posts: 621
Joined: Wed May 27, 2015 1:57 am
Location: Melbourne, Australia

Re: Brain mets . . . and they're aggressive

Postby Maggie Nell » Wed May 10, 2017 10:32 pm

AnnClare wrote:Thanks for all the support, guys.

I feel like a little kid throwing a temper tantrum. I eat healthy MOST of the time. Can't I have a little comfort food here and there? This thing makes me feel enough like an outsider as it is, without having to have eat differently in social settings and at work. She said, in much nicer terms, that I basically have to suck it up, re-frame the way I look at food (see it as medicine, not a social or comfort thing), because I'm in a dire situation and my life depends on what I put in my body.



As a person who holds qualifications and has 30 years of experience in the holistic/bioenergetics field, all I can say is that if our lives really truly
deeply depended on what we put in our bodies, we'd never have survived past our first mud pie!

Your body, your cells, your growth.
This stage in the game, compassion for self and befriending your body is medicine.
Quit putting yourself down: you're not a big baby. You are a grown mature woman with a fierce
desire for life.
DX April 2015, @ 54
35mm poorly diff. tumour found upon emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX

Pita
Posts: 636
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Brain mets . . . and they're aggressive

Postby Pita » Wed May 10, 2017 10:46 pm

Sorry for your mets AnnClare... Please get a chocolate frosty and I'll toast you with my middle of the week processed junk food, Sprite, fries and a polish sandwich from the Wienerschnitzel. Many prayers and hugs to you... oxo
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin


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