Metastatic Breast Cancer: Whole brain radiation side effects

Posted by Karenatmayo @karenatmayo, Sep 4, 2017

I finished whole brain radiation two weeks ago (10 treatments) and am suffering horrible side effects. Doctor checked me out 3 days ago and said everything looks ok but I am miserable with NO appetite, feel nauseous, head feels like it’s being squashed in a vice, headaches, dizzy, weak, extreme fatigue. I am taking memantine to hopefully prevent memory loss. I am suffering and feel miserable, cannot function, cannot eat. I am hoping some of these side effects will go away but not optimistic. I am age 68 with metastatic breast cancer spread to bones, lymph nodes, brain – a rather grim diagnosis. Feeling miserable.

Hi @karenatmayo. so sorry that you are feeling so miserable. I'm sending some virtual "brighter days" wishes your way.

Here are some resources about brain radiation side effects
– Oncolink http://bit.ly/2lMl78j
– Cancer Research UK http://bit.ly/2lg01lG

@chuck58201, @irishel and @lindalb have discussed radiation and treatment. I hope they will join us in discussion and relate to you what their experiences were.

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@karenatmayo how are you doing? My mother is going through the same thing as you, her breast cancer came back in bones and brain. Shes doing chemo pills at home for her back and done 7 of her 10 radiation treatments for brain (whole brain radiation.)

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@cshaf19

@karenatmayo how are you doing? My mother is going through the same thing as you, her breast cancer came back in bones and brain. Shes doing chemo pills at home for her back and done 7 of her 10 radiation treatments for brain (whole brain radiation.)

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Hi @cshaf19, welcome to Connect. I'd like to bring @wendeth into this discussion. She too had whole brain radiation for breast cancer. Is that correct, @wendeth ?

Cshaf, did you know that there is also a breast cancer group on Connect here: https://connect.mayoclinic.org/group/breast-cancer/
You may wish to join the discussions there, in particular this one:
Metastatic breast cancer: Anyone else? https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/

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@colleenyoung

Hi @cshaf19, welcome to Connect. I'd like to bring @wendeth into this discussion. She too had whole brain radiation for breast cancer. Is that correct, @wendeth ?

Cshaf, did you know that there is also a breast cancer group on Connect here: https://connect.mayoclinic.org/group/breast-cancer/
You may wish to join the discussions there, in particular this one:
Metastatic breast cancer: Anyone else? https://connect.mayoclinic.org/discussion/metastatic-breast-cancer-to-the-bone/

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Thanks, Colleen. Yes, Karen @karenatmato (I hope that finds you!), I had 10 whole brain radiation treatments about 2 months ago. Fortunately very few side effects for me, except for losing my hair. I also stopped my set of post-brain-surgery steroids as I started the radiation treatments. Stopping the steroids I think caused me to be very tired, and then depression set in. I also didn't have much appetite for a few weeks. I took just a month of memantine (eased myself off of it, as it wasn't covered by insurance), but didn't seem to have effects from it. Oh, and my right hand from elbow to small finger have been a little painful and tingling – maybe neuropathy. I'm not on any other cancer treatments right now. I went from triple negative breast cancer, surgery and chemo, then metastatic to liver so more powerful chemo, then a short break from chemo turned into more then a year, then a brain MRI with 2.5 inch cyst took me to brain surgery and radiation. In a few weeks I have a brain MRI to see how the radiation worked.

I'm sorry for your major challenges! Treatments work differently for a lot of us. Oh, I see that your original post was from 2017. I definitely hope and pray that you're a lot better now! Possibly better by being in the next life – as all of us metastatic patients are likely to be coming to. Blessings and love, Wendy

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@karenatmayo – Karen, I'm sending you love and hopes for some help from your doctors soon. I'm so sorry you're having to endure this.

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Happy new year to everyone. I have metastatic breast cancer and we have discovered brain tumours and spots all over the brain. My oncologist says that I will probably need whole brain radiation. Has anyone undergone this? What is there to expect and what are the side effects?

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@nab

Happy new year to everyone. I have metastatic breast cancer and we have discovered brain tumours and spots all over the brain. My oncologist says that I will probably need whole brain radiation. Has anyone undergone this? What is there to expect and what are the side effects?

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Welcome to Connect, @nab. You may have noticed that I moved your message to this existing topic about whole brain radiation therapy (WBR) for metastatic breast cancer in the Breast Cancer group (https://connect.mayoclinic.org/group/breast-cancer/).

If you click VIEW & REPLY you can scroll through past messages where members like @karenatmayo @cshaf19 @wendeth and @maricia share their experiences. Additionally, @karen43 and @lady1lake have talked about WBR for metastasized lung cancer in this discussion https://connect.mayoclinic.org/discussion/small-cell-lung-cancer-1/?pg=6#comment-263340)

Nab, when will you be starting whole bring radiation?

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@cshaf19

@karenatmayo how are you doing? My mother is going through the same thing as you, her breast cancer came back in bones and brain. Shes doing chemo pills at home for her back and done 7 of her 10 radiation treatments for brain (whole brain radiation.)

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@cshaf19 how is your mother doing? my mother just started her radiation treatment for her brain. she hasn't started the chemo pills yet, how did your mother handle them?

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@wendeth

Thanks, Colleen. Yes, Karen @karenatmato (I hope that finds you!), I had 10 whole brain radiation treatments about 2 months ago. Fortunately very few side effects for me, except for losing my hair. I also stopped my set of post-brain-surgery steroids as I started the radiation treatments. Stopping the steroids I think caused me to be very tired, and then depression set in. I also didn't have much appetite for a few weeks. I took just a month of memantine (eased myself off of it, as it wasn't covered by insurance), but didn't seem to have effects from it. Oh, and my right hand from elbow to small finger have been a little painful and tingling – maybe neuropathy. I'm not on any other cancer treatments right now. I went from triple negative breast cancer, surgery and chemo, then metastatic to liver so more powerful chemo, then a short break from chemo turned into more then a year, then a brain MRI with 2.5 inch cyst took me to brain surgery and radiation. In a few weeks I have a brain MRI to see how the radiation worked.

I'm sorry for your major challenges! Treatments work differently for a lot of us. Oh, I see that your original post was from 2017. I definitely hope and pray that you're a lot better now! Possibly better by being in the next life – as all of us metastatic patients are likely to be coming to. Blessings and love, Wendy

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@wendeth hello Wendy, my mother just started her radiation treatment this week and I was wondering how you were doing? are you still going through any current treatments?

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@karenatmayo I did whole brain radiation this past October for breast cancer mets to brain (I also have it in bone and lungs). I am 41 years old.I had almost exactly your side effects. I didnt eat, lost a lot of weight. Spent a lot of time in bed and a few hospital visits. It DOES get better, but takes a fee weeks if not longer after your last treatment. Very important to stay HYDRATED If nothing else. Protein drinks like Ensure, pedialyte or Gatorade all have a little extra for your body. My hair on the other hand hasn't even started to grow back….least of my major worries. Let me know if you have any specific questions. Sending healing thoughts your way.

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Hydrate with the water ten – the ph is ten and is alkaline – helps to hydrate without the added sugars and chemicals. Add avocado and walnuts to your daily food intake.

Liked by lynniesf

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