Severe Symptoms: Brain Mets & Decadron

[4Arianna]

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!

[Becky]

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.

[Darlene Denise]

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

[GracePang]

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

[StephN]

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.

[joyce lutz]

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

[juliehere]

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

[joyce lutz]

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

[Jackie07]

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.

[4Arianna]

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!

[Becky]

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.

[Lani]

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

[flynny]

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.

[Trish]

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

[joyce lutz]

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