Brain Mets Question

[cathcarter]

This is my first post. My initial dx was in May 2001 HERneu2+++, ER/PR negative, had mastectomy, chemo, radiation and Herceptin (in a one year trial). Mets to liver and lungs in April 2005. Mets to brain in December 2005. WBR daily for three weeks and follow up CAT scan showed some shrinkage, no progression.



Herceptin had been suspended during WBR and started it again and added Taxotere at the end of March since liver lesions showed expansion. Yesterday, six days after Treatment #2, I complained to oncologist about double vision (second incidence, the first several weeks previously). She asked me about steadiness, balance, and I told her it continued to be a problem (since the brain mets). She prescribed Decadron 4 mg daily.



Any advice? I hate to take unnecessary meds, esp. if they might mask other symptoms and I had severe problems with sleeplessness on Decadron during WBR.

Cathy

[cathcarter]

I posted my first question earlier today and received no response. I noticed at the bottom of my question screen a Quick Reply screen so I am just testing. Is there another step after "submit?"

Cathy

[karenann]

Cathy,

You have submitted your post correctly and I am sure some people will reply very soon. There are a lot of women on this board who have brain mets and they are doing well.

Karen

[Annemarie]

Hi,
I have had bc with brain mets only (unusual case). Decadron is necessary to keep the swelling down and preventing you from having a seizure. So it is very important to follow your doctors instructions. What are you doing after WBR? Good luck to you.
Annemarie
6 year survivor diagnosed 5/00 Stage 3b
ER/PR +
Her2 +++
Diagnosed one week after 32 birthday
single brain met lesions 3X
10/01 3cm
10/02 5mm
10/04 7mm

[Sheila]

Cathy
Maybe another MRI is in order to make sure there is nothing more going on in the brain. The decadron will make you have a hard time sleeping, but is usually given after WBR to minimize swelling which could cause the symptoms you are having. There are several members on this board who I am sure will respond. Many have had brain mets with various treatments. If someone doesnt reply immediately, dont get alarmed, sometimes it takesus a few days.
Welcome to the board, you will find it compassionate, loving and full of information.

[3sweeties]

Cathcarter,


Brain mets post caught my eye, I have a relative dx last yr with HER2++, pr/er neg. bc, she underwent mastect/radiation/chemo to have it then return in her brain and spine, she has multiple mets in her brain, she underwent wbr and is on herceptin, xeloda and some other meds. She is also taking decadron to reduce swelling from the mets and to help control seizures. She has progressive neurological problems started from having double vision and also walking problems. She underwent a spinal tap and was diagnosed with what is called leptomeningeal cancer also called carcinomatous meningitis, it is when the cancer gets into the meningeal covering in the brain and spinal cord areas causing neurological dysfunctions.
One poster said to have another MRI of the brain done just to do a recheck , this might be a very good idea, make sure your dr stays on top of things.

A.

[tousled1]

I get decadron as a pre-med for Taxatore. I take decadron (two 4mg pills) 2 times the day before chemo, 2 times the day of chemo and then once the day after chemo. I belive that it is common practice to have the decadron when you're on Taxatore.

[Annemarie]

Hi,
when I had WBR I was also on decadron to keep down the swelling during treatment. I had gone off of it and the doctor was annoyed that I put myself in danger by being non-compliant.
Annemarie

[Sherryg683]

I also had decodron before my Taxotere. They said it was necessary, made me put on a few pounds...sherryg683

[Esther]

Cathy, I had SRS done for a single brain lesion, and had to take decadron for about a month. I sympathize with you, because I absolutely hated it, and went off of it ASAP.

Discuss it with your onc and ask if it is imperative that you take the decadron, or if you have a choice.

[Annemarie]

Hi,
for me the decadron caused nose bleeds and speeded up my metabolism like I was on speed. I talked non- stop, could not sleep, ate everything (lost weight). I was like super woman but definately not myself. Tons of energy. My cheeks looked like chip monks. Small price to pay when you are fighting for your life.
Annemarie

[StephN]

Hi -
I am also a brain mets survivor.
Had to take a course of Decadron last Jan/Feb and it really affected me big time. Siince I had Gamma Knife and did not have too much diffuse inflammation, was able to wean off fairly quickly.

To combat the symptoms of this awful drug you may try avoiding caffeine, simple sugars and other things that give a quick buzz. Drink some Camomile tea or other soothing herb teas. Listen to relaxing music to help you sleep.

For the constipation that most of us have on Decadron, I used Senna herbal tea. This, high fiber cereal and a few dried prunes a day got me back to normal pretty quickly.

I also increased my intake of plain water by almost double. This also seemed to alleviate some symptomes.

Hope your balance and other symptoms get better soon - but you will need the Decadron to help with the inflammation. Ask to see your scan and see for yourself where the tumors are located and how much inflammation you have if you have not done this. The docs can tell you how each tumor is affecting you.

[R.B.]

Omega three and six and brain mets.

A book I have not yet had time to read called "Smart Fats" M Schmidt cites a trial where brain tumours were biopsied and compared with normal brain tissue. It reports the tumours had higher levels of omega six and lower levels of DHA (an omega three derivative found in fish primarily) than the normal tissue.

The brain is 60% plus fats.

It is recognised that in infants DHA is essential to brain formation, and there are increasing numbers of books suggesting mental health is to some extent linked to omega three intake.

As usual a big topic, but the above is proably another reason to take time to check out the arguments for at least balancing the omega three and sixes.

As ever if you are undergoing major diet change do discuss it with your advisors. Fat are powerful agents in the body involved at all sorts of levels.

RB

[Joe]

There is a drug in phase III clinical trials called: Xerecept which has far fewer side effects than Decadron.


Regards
Joe