Brain Mets: I'm new hear and would like... - SHARE Metastatic ...

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Brain Mets

Phaz
Phaz

I'm new hear and would like to hear from others with brain mets who received whole brain radiation. What side effects did you have and did you regret it. I had targeted radiation to a few lesions 7 months ago and now have new lesions.Other mets,liver and bone are stable.Still have good quality of life and afraid recommended WBR will severely impact that.

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I was diagnosed with stage 4 MBC in 9/17. Felt fine ,no symptoms. Found on routine eye exam on my right retina. This led to a brain MRI, CT scans of chest, abdomen and liver biopsy. I had too many to count very small brain mets everywhere in my brain. Also mets as well in lungs, liver, bones. Only option was whole brain and both eye radiation. I had 18 treatsments and finished first week of November. My experience might no be usual, but I think it is. I think theydown play side effects of Total brain radiation to not scare you. I lost most of my hair and Nothing has grown back after 5 months. I had extreme fatigue, nausea, poor balance. I still have weakness, poor stamina and strength. My memory has definitely has gotten worse. I have heard it referred to as "brain fog" which describes it well. It was worse than the Chemo which I then did and now they are ttrying oral chemo and injections. When i have been off any treatment I still feel bad. Having said all that, if I didnt do it I might well be really be in bad shape by now as chemo doesn't get to your brain. I had no choice. On the positive side, It worked well and on my 3 month repeat MRI all lesions are either gone or appear inactive. Hard call. All I can say was whole brain a different story, but if they are recommending it it is probably your best bet at holding it off. I wish youthe best. I would like to hear back what you decide and how you are doing. My thoughts and best wishes, stay positive. Your experience may be much different than mine.

NPmary
NPmary in reply to Burgerde

Burgers, my understanding is that with chemo your hair does grow back, but with radiation hair follicles are killed and hair never grows back. Talk to the radiation oncologist about this. I am sorry about all of your side effects but had you are still with us. Love and prayers.

NPmary
NPmary in reply to NPmary

The autocorrect misspelled your name, sorry, Mary.

Yes I also had whole brain radiation in Nov 2016. The side effects were not as severe as I thought. I did lost all my hair. My forehead, chin, and nose turned darker . I am still dealing with tbis issue. My skin seemed to show more lines in my face. My face has since gotten better and looking better. My chin and forehead is slowly getting better. I also have bone meds but currently no systoms. I also had balance issues and fatigue issues in the beginning. Exercising and lots of sleeping helped me a lot. I am able to work, drive long distance and my balance is much better. I am currently on oral chemo. I hope this helps . you. God bless you. Do not hestite to contact me

NPmary
NPmary in reply to Dartyus

Dartyus, you are doing amazingly well !!!

Phaz, l haven't had whole brain radiation myself. I suggest you take a trusted person (he or she should have a notebook and take notes for you and help you ask questions if you need that) wiith you to see the radiation oncologist and ask about side effects what to expect: hair loss (probably permanent -ask) . Possible cognitive/thinking problems: how probable is this? how serious? permanent? temporary? can l drive/work? What is the best case scenario what is the worst. If you want to know about survival time statistics ask, remember though you are not a statistic and you can always do better than expected - we just don't know.

I am so sorry you are facing this, my friend. Love and prayers, Mary.

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