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Brain mets, advice please

susiemw
Posts: 7
Joined: Aug 2013

Hi all,

A little background info:

 

My very active, still working 85 year old mother was diagnosed with stage 3b colon cancer 11/2011.

She had surgery which revealed the tumor had penetrated the colon and she had (I think) 6 of 26 positive

lymph nodes.

Gene testing on my mom revealed her to have the gene mutation for Lynch Syndrome.

gene testing was done on the tumor as well but I don't remember the results right now.

She was then started on sodium phenylbutyrate (PB) 3/2011. She started on chemo but had progressively

severe allergic reaction to it (that the oncologist ignored) until she stopped breathing in his office. She had

about 4 chemo treatments... 3 really since the 4th infiltrated and went into the underlying tissues instead

of IV as it should have. 

She just finished the PB one month ago.

3 weeks ago developed what appeared to be mild stroke like symptoms as well as an allergic reaction

to keflex.... went to ER, diagnosed with a stroke,  2 weeks later she had involuntary movements of her

lips as well as significantly slurred speech.  Back to ER... CT scans revealed no change, no new "stroke",

ended up hospitalized and eventually an MRI was done which revealed a 1 cm lesion in the left brain in the

premotor cortex.  CT of pelvis, abdomen and chest revealed no cancer.  The "stroke" was they determined

seizure like activity from the swelling around the brain lesion.

Surgery 4 days ago revealed it to be adenocarcinoma metastasized from the colon.

further tests still pending.  Mom's still in the hospital.  MRI post surgery showed that they got the entire lesion.

No muscle weakness or paralysis as had been a concern, instead she is having trouble with slurred speech, trouble

swallowing and drooping left side of mouth (which has significantly resolved over last 3 days)

 

So far my homework has shown that colon cancer metastasizes to the brain only 1-2% of the time and usually

to the left. her's was on the right.  Until tonight the only info I've found on treatment and survival has been dismal

at best.  Tonight I found some that showed increased success with whole brain radiation... that sounds brutal.

 

Please point me in the right direction in finding what I need to help advise my mother on treatment options.

Thanks in advance.

 

Susan

 

 

 

lp1964's picture
lp1964
Posts: 908
Joined: Jun 2013

As you said it yourself brain metastasis is very rare. I don't know nothing about it and as far as I know nobody does who recently posted.

the best course of action is to get at least opinions and go with the one that sounds the most promising.

I wish you and your mom the best possible outcome.

Laz

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Susan

I am very sorry to read this news.

I've stewed for over 30 minutes as to IF or HOW I should respond.  you said this is your mom going through all this treatment to try and beat brain cancer that came from the Colon and she's 85 years old... is that correct?

I have watched my brother die from brain cancer that came from melenoma and lung. His wife, my sisters... my mom, EVERYONE wanted to keep fighting. Keep treating. Keep operating. It was terrible.

He lived 9-10 months after first being diagnosed.  

myself, I've been going through Stage IV colon cancer treatments since November 2011.  a couple operations, a dozen raditation treatments and nearly 60 chemo treatments... and I'm still fighting.

But, honestly... I told my wife just this week. If I was over 65 years old, and my kids were older and there wasn't so much for me to look forward to since I'm only 49 and have four kids at home. But, if I was over 65... I would NOT allow for all this abuse.  It's hard. Very hard.

sorry to say this... but if it were me, I would be saying to the doctors... (if I could get them alone, without family in the room)... please make me confortable and relieve the pain. But, NO more treatments please.  Let's just live the best we can, with the time and people we have around us.

sorry. I hope this isn't too much of a shock, but this is just how I feel.

my best

Joe

 

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i would try and find an alternative doctor who will support the ketogenic diet and dendtritic cell therapy and new castle virus disease.

goodluck hugs,

pete

ps see my post in the sugar discussion for ketogenic links

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

My neighber has inoperable brain cancer,he did radiation,then chemo.That was 15 years ago.He has to do chemo for life,and get checked once a year.But he is only in his 50's,and everyone is different.He can still remember people,and what happened in the past,but he can't remember yesterday.I hope treatment will work out for your mom.I will pray for her.Good luck.

herdizziness's picture
herdizziness
Posts: 3492
Joined: Apr 2010

I have to agree with Joe, I don't think at that age and with the other things your Mom is dealing with that I would choose more things to possibly go wrong.  If I was older then 70 and know everything I know now, I would be busy enjoying the rest of my life, quality over quantity at that point.  

Most importantly ask your Mom what she would like she may not want to be hanging around hospitals and doctors when instead she could be enjoying her time with her children and grandchildren.  At this point in your Mom's life I think it is very important that she makes the choice of what she wants to do without being pushed into what others want her to do.  She may choose the radiation or she may choose not to, she just needs to know her choices and to make her own decisions.

I wish her the best.

Winter Marie

serenity101's picture
serenity101
Posts: 82
Joined: May 2013

If I'm reading it right, Mayo Clinic is doing a stage 3 clinical trial on an alternative to whole brain radiation, looking at QOL and retention of functional independence, among other things: http://www.mayo.edu/research/clinical-trials/CTS-00103687 . It might be worth looking into.

Serenity

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