Newly diagnosed with Brain Metastases

[Guest user]

Hi Smartie,
Thanks for bumping up this post....the information in it was really helpful and has given me lots of thought for questions to ask tomorrow. Very much appreciated:-)

[Guest user]

Hi Ingrid thank you for taking the time to reach out and help me at such a difficult time. Your story makes a difference to me. I hope that your taxol goes well and the blood makes you feel a little better
Sue. X

[Lucy_BCC]

Hu Kungfusu,

Please feel free to call our helpliners to talk your queries and concerns over, they are on hand with practical and emotional support weekdays 9-5 and Sat 10-2 on 0808 800 6000

This link will take you to the secondary information and support BCC can offer you, i hope you find this helpful:

https://www.breastcancercare.org.uk/secondaries

Take care

Lucy BCC

[Smartie]

Hi KungfuSue

I have a friend who was diagnosed earlier this year with brain mets and there was a really useful series of posts under the radiotherapy forum about the various options for treatment with some invaluable advice, the link to the post is as follows:
http://forum.breastcancercare.org.uk/t5/Radiotherapy/Radiotherapy-for-breast-cancer-brain-mets-worri...

Hope it helps and good luck.
Smartie x

[Mildred1602]

Hi Kungfusue

I was told on the 24th Sept 2013 I had brain mets. This translated into the cancer being in the meningeal layer of my brain (the bit between the skull & brain). I was admitted to hospital overnight for steroid injections to reduce the swelling (odema) & discharged with dexamethasone tablets. As the cancer is in meningeal layer my only option was WBR. I had a planning session (fitting of mask etc) followed by 5 doses. This was all straight forward especially as a kind friend took me to & from hospital most days.

I am now 3 weeks post treatment & over the last 10 days the side effects have hit me. My hair has fallen out (not over worried about this as I've lost my hair before - hats & wig have been brought back into service). I had a few days of bad nausea but cyclisine & metroclopramide dealt with this. The worst bit has been tiredness. I've gone from hardly sleeping due to steroids to struggling to stay a wake. This is starting to pass & I just listen to my body. The hair loss, nausea & tiredness can all be dealt with. Fortunately I don't have young children but I do have supportive friends & husband. OH struggles at times so I must remember that on my bad days he's worrying about what the future holds & make sure I take sometime to look after him.

The brain mets all came as shock to me after 18 months of living reasonably well with just extensive bone mets & spread to bone marrow. My symptoms for the brain mets were a sense I wasn't talking probably (no body else noticed) & some pressure across the back of my head which a couple of paracetamol dealt with. A head CT scan was booked & the rest is history.

Due to on going progression (now in liver & lungs) I'm due to start Taxol this week. This has been delayed a few days as I'm currently sat in hospital having 3 units of blood.

Hope this helps

Ingrid

[Guest user]

I hope there are people here who can help or offer advice.  I am 42 and was diagnosed with primary and secondary Her2+ breast cancer at the end of February.  I have been on a regime of Zometa, Docetaxol, Herceptin and a trail drug called Perjeta/Pertuzamab.  I had a brain scan on Friday which showns that I have over 30 small metastases on my brain.  When I try to look up brain mets most people talk about having up to five and refer to cyberknife/steriostatic surgery.  My only option on so many mets is Whole Brain Radiotherapy WBRT, has anyone had this sucessfully?  I am obviously very scared especially after responding so well to initial treatment.  All mets cleared of lungs and stabilised in liver and bones.  To have this setback eight weeks after finishing chemotherapy is a real blow as I am asymptomatic.  It was only an eye test that indicated a problem. All suggestions of treatment and drug options or just general positive stories welcome.  Thank you.