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02-21-2011, 10:01 AM
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#1
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Junior Member
Join Date: Feb 2011
Posts: 2
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Severe Symptoms: Brain Mets & Decadron
Hello,
I'm a first time poster hoping to hear about the experiences of others who have gone through brain mets. My mother was diagnosed with inflammatory breast cancer three years ago at age 65, and after undergoing treatment and surgery, appeared to be NED. Then last year she was diagnosed with a single brain met and underwent stereotactic radiosurgery. The lesion became smaller and an MRI three months ago revealed that it was gone, leaving behind necrotic tissue. Unfortunately the MRI also revealed a new single brain met, so it was stereotactic again this time with 16mg of Decadron daily. It's now been six weeks since the radiosurgery and three weeks since she was weaned off Decadron. In the three months since her diagnosis of met #2, she has become debilitated, cannot walk except with a lot of assistance and sleeps all day. She is nauseous, cannot follow a train of thought and cannot even focus her attention enough to make a phone call. She gained 45 pounds on the Decadron and since being weaned off she is losing weight at an alarming rate. To make matters worse, after the diagnosis of met #2, her Medical Onc advised hospice. This was hard to accept since there is no evidence of disease anywhere else in her body and this forum is filled with people who have gone through extensive mets and are still going strong. Here's the kicker - her Neuro Onc and Neurologist have told us it is too early for hospice and that she is still treatable! I am reading a lot of posts from people who have had multiple brain mets and wonder if they experienced such debilitating symptoms as my mother has, and if so how long they lasted and what recovery was like. Was any physical therapy needed? Also, is it unusual for an Onc to suggest hospice for someone with so few mets? She has had a battery of tests and no other mets have been found. Any advice is appreciated.
Thank you!
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02-21-2011, 02:53 PM
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#2
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Severe Symptoms: Brain Mets & Decadron
Was the second met in an odd region where treating it caused these symptoms? Was it large or very near the first one - you somehow have to get to the bottom of why this has happened to your mother as this is a rare side effect. I am sure others with real experience will chime in (as I have not) but this is a severe reaction. What do all the doctors say? Was the treatment given correctly? Has there been a follow up MRI to be sure of what is going on? Are you 100% positive nothing is happening in the body?
Just questions - don't take it wrong but you are right to be concerned as this doesn't sound like the experiences of women on this board, some of whom had more tumors and more treatment.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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02-21-2011, 04:13 PM
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#3
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Senior Member
Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
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Re: Severe Symptoms: Brain Mets & Decadron
Sorry for what your Mom is going through. These are very concerning symptoms. I would request a spinal fluid tap ASAP. Your mom needs immediate intervention and should not have to feel this type of pain and discomfort.
This is a great forum for comfort and friendly advice but I would seek a second opinion as far as future treatment from an Inflammatory specialist at an NCI designated facility. Dr Cristofanilli with Fox Chase in Philadelphia is head of the Inflammatory Clinic there and transfered from MD Anderson. MD Anderson also has such resources. Many local oncologists are not well educated when it comes to this rare aggressive form of Stage IV BC, I would not rely on them at this pivotal time.
Wishing you the best possible outcome and hope you will keep us informed.
Darlene
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
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02-22-2011, 08:15 AM
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#4
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Senior Member
Join Date: Jul 2010
Posts: 42
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Re: Severe Symptoms: Brain Mets & Decadron
I agree with Darlene and Becky that you need to find out where those symptoms come from, instead of assuming they are from the brain tumor. I had numerous brain tumors, gone through whole brain radiation and Gamma knife, but had no symptoms. I am sending you positive thoughts and hope your Mom will feel better soon. Grace
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02-22-2011, 10:31 AM
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#5
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Severe Symptoms: Brain Mets & Decadron
I hope you Mom is still able to get out of bed long enough for a visit to the ER.
Becky asked the good questions. These severe symptoms are not normal after treatment of so few brain mets.
She may have some other conditions that are adding to the debilitating effects of the decadron. It was a very hard drug on me and it is muscle wasting. She should not be losing weight now that she is no longer on that drug.
She needs immediate intervention to look for other causes. Good luck.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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02-24-2011, 03:19 PM
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#6
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Severe Symptoms: Brain Mets & Decadron
She may also have been taken off decadron too quickly. Doing so can cause all kinds of issues so perhaps she should go back on it again but like the others said get a 2nd opinion. My best to you
Joyce
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03-16-2011, 07:57 PM
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#7
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Junior Member
Join Date: Nov 2010
Location: Indiana
Posts: 4
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Re: Severe Symptoms: Brain Mets & Decadron
I have the same symptoms. No on seems to understand. I was on 16 mg for 3 mos. They weaned me off 1 less a week. I have horrendous syptoms. I walk,couldn't get out of bed and went to hospital for 1 week. I got a collapsed lung and cellulitis where my are and hand swelled up like a balloon. Now about 8 weeks after stopping decadron, I still have trouble walking and am extremely tired and nap all day. These symptoms are caused by the decedron. If anyone knows how long this will last, please let me know.
Julie
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03-17-2011, 06:46 AM
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#8
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Severe Symptoms: Brain Mets & Decadron
You need to discuss these issues w/your oncologist and if he/she isn't willing to then seek a second opinion. It may be that you need to go back on a low dose of decadron and then wean back off of it again. That is what my daughter had to do. My best to you
Joyce
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03-17-2011, 10:22 AM
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#9
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Senior Member
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,809
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Re: Severe Symptoms: Brain Mets & Decadron
Julie,
I second Joyce's advice.
You might also want to get a referral to either a physical therapist or a doctor who's specilized in rehabilitation.
I went through rigorous physical therapy after a 23-hour brain surgery to resect a 4x5x6.5 cm central neurocytom in the center of my brain. There were days when I did not want to get up. It was physically exhausting and painful... But gradually everything get better.
Don't give up.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2
NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
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Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa
Advocacy is a passion .. not a pastime - Joe
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03-19-2011, 09:31 AM
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#10
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Junior Member
Join Date: Feb 2011
Posts: 2
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Re: Severe Symptoms: Brain Mets & Decadron
Thank you all for the responses which confirmed my sense that something was not right about my mother's symptoms. I took her for an MRI two days after I first posted about how sick she was. It turns out that she developed hydrocephalus (water on the brain) and had to undergo surgery to install an AV shunt. She now feels better, is out of the hospital and in rehab where she will remain for several weeks receiving physical therapy. According to the docs, hydrocephalus is caused by a number of things and in my mom's case they believe it to be a rare complication of radiosurgery combined with the intense edema she experienced from taking decadron. Apparently when the blood-brain barrier is disrupted by radiosurgery, there is the potential for affecting the brain's ability to drain fluids and this is what happened to my mother. I just wish that she had been diagnosed properly before her symptoms became so bad. For weeks I had been taking her for tests and consults with her onc, her neuro onc and the neurology director of the hospital, and was told that her symptoms were either from the tumors, or the decadron, or the radiosurgery or the chemo. That is what led me to post on this board because it just did not seem right that so many women here who have brain mets are not going through the kinds of things she experienced. It wasn't until she became very sick and her symptoms became too severe to be any of those things that the hydrocephalus was discovered. In any case she is recovering and hopefully will be home soon. Strength, courage and best wishes to you all!
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03-19-2011, 09:48 AM
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#11
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Severe Symptoms: Brain Mets & Decadron
I just want to say that I am happy your mother's problem has been properly diagnosed and treated. She should be on the mend soon and you can both put this behind you.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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03-19-2011, 02:11 PM
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#12
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Severe Symptoms: Brain Mets & Decadron
4Adrianna--your mother is SO lucky to have you
You are the poster child of not giving up and reaching out and looking for information
I always try to find lessons/silver linings in bad situations. Here is my take on this one: When hospice is suggested it behooves one to alway seek out other opinions to be sure a totally reversible problem is not being missed.
Cause for celebration!!!
Lani/ Polyanna today
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03-19-2011, 08:22 PM
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#13
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Senior Member
Join Date: Jul 2008
Location: New Boston, NH
Posts: 275
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Re: Severe Symptoms: Brain Mets & Decadron
4Arianna! You are an amazing daughter and good for you for being her advocate! Keep on the doctors, ask lots of questions, and go with your gut feelings! They are usually right. My mother had hydrocephalus and they put a shunt in her head. It relieved all that pressure and made a huge difference. What you (and your mother) are dealing with is a roller coaster. I wish you the best of luck and know I am thinking of you.
__________________
-Sarah-
Jan '07 felt lump (PCP "thought" it was a cyst)
Nov '07 "bloody nipple discharge" (OB-GYN "thought" I had fibrocystic breasts and told me to take 400 IU's of Vitamin E)
Note: Mother was dx w/BC in 2004 (ER/PR+ & HER2+) & mets to brain April 2007 (she passed away June 17, 2008)
2/1/08: Biopsy Dx: DCIS (age 34)
2/22/08: Surgery R-side Mast
2/28/08: 1st Path Rpt Dx: IDC 1.8cm tumor & DCIS 2.1cm
2nd Path Rep DFCI - IDC (0.9cm) & DCIS (2.1cm)
Stage 1b/Gr 3; ER+(5%), PR+(2%), HER-2+++
5/5 nodes NEG; Clear Margins
Chemo: AC 4 rnds (1st one 3/31/08) finished 6/2/08
TH (Taxol/Hercepin) 12 weeks (1st one 6/25/08) finished 9/8/08
Herceptin 9 mos (every 3 weeks) finished 6/8/09
BRCA 1/2 NEG
Bio: Age 39, married to James 1999, 2 boys 12 & 10 yo
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03-20-2011, 01:28 AM
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#14
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Senior Member
Join Date: May 2010
Location: Melbourne, Australia
Posts: 434
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Re: Severe Symptoms: Brain Mets & Decadron
Well done for 4Arianna. Your mother is lucky to have you and so are we. Thanks for your persistence and for telling us about it-forewarned is forearmed should anything similar happen to any of us.
Trish
__________________
5/2004 (R) 30mm bre gr3 infiltrating ductal ca 16/18nodes er (2+) pr (3+) HER2 (3+)
6/2004 6 cycles(FEC), Oct 40 rads, Tamoxifen
5/2006 oopherectomy, Arimedex
12/2006 liver mets largest 9cm
1/2007 Herceptin,
3/2007 Taxol + Herc
1/2008 Herc alone
4/2008 Multiple bone mets,Zometa
7/2008 Herc + Gemcitabine
8/2008 Herc+Navelbine/vinoralbine
10/2008 Herc+Carboplatin+Taxol
12/2008 Tykerb+Xeloda
2/2010 Herceptin + trial drug
5/2010 Herceptin+Tykerb
8/2010 Tykerb+Abraxane
9/2010 Abraxane
12/2010 Abraxane+Tyk+Herc
4/2011 Tyk+Herc+Femara
6/2011 Liver and bone mets prog.Abraxane continue Herceptin,Tykerb,Femara and Zometa
8/2011 Probable liver progression and increased neuropathy. Xeloda with Tyk+Herc. Zometa 6 weekly.
9/2011 Liver progression,TM +++. Cyclophosphamide and Methotrexate metro Herc Zometa
10/2011 liver mets prog.Herc, 3 Tykerb +2mg decodron daily,Zometa
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03-30-2011, 07:38 PM
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#15
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Senior Member
Join Date: Oct 2009
Posts: 84
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Re: Severe Symptoms: Brain Mets & Decadron
Seems like we always need to be our own advocates! Good for you pushing for the best for your mom! I know how much energy it takes, but you keep pushing for her! My best to you and your mom.
Joyce
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