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Brain mets- Advice from Survivors Please!!


tjrasMOM

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Hello,

I usually post on the caregiver's board, but my mom really needs some encouragement from other survivors. I plan to relay the responses to her.

Today she received a call from her oncologist in regards to her latest MRI. It seems he found something on her brain. She's been suffering from horrible headaches....she explains them to be "jolts of pain". This has been going on for about 3+ weeks. She came over this morning to tell me that she has to go in and see a new doctor tomorrow regarding the MRI.

I have read quite a bit about brain mets on this message board. It seems as though they are common. I do know that they are handled through radiation. If anyone could share their experiences we would appreciate it.

Thank you.

Tova

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Hi Tova-

Well, I just found out Friday that I have numerous mets to my brain. I really had only been having slight headaches and the verdict is still out as too whether they are from the mets (which are very small) or from my sinuses because sinus meds made the headache go away.

Anyway, because of the number of them, I am not a candidate for gamma knife. So I need whole brain, which of course means you lose your hair (you don't with gamma knife since its so concentrated in one area).

I go tomorrow to see the radiology onc and I think they may begin to make my mask then, so I will get back with you on what he said. So far I have been told there may be some short term memory loss and fatigue. Bad part is they can't give me chemo until after I am done with the radiation. I have to go Mon thru Friday for three weeks and then still wait until 2 - 3 weeks after that to restart chemo.

Give your mom a hug from me - we WILL get through all this!!

Hugs - Patti B.

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Tova, I adjusted your post title to catch the attention of other survivors. I hope they will chime in here and offer some support for your mom.

Prayers,

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HI all,

I am typing this out not only for others to read, but also because it's fresh in my mind, I need this reference to come back to in a few days when I forget everything we learned today....

Mom and I went to her appointment today and met her radiologist. What an amazing man. We liked him just as much as we like her oncologist. He explained everything in so much (clear, easy) detail, that we both walked away feeling powerful with our knowledge. He was so good at giving us the positive of treatment, that the "bad news" just slid right in, ever so gently. I mean, we both heard the bad news, but there was hardly time to get upset because of how he moved us to options, treatments, time frames, long-term and short-term side effects...and finally, what he felt was her best option. So, YEAH Dr. Sanha!

MRI results:

She has multiple brain mets, all over her brain. He does not think her headaches are 100% caused by the brain mets though. He (& her oncologist) believe that the jolts of pain in her head and mild to throbbing headaches are from Avastin. He gave her a prescription for a steroid (Decatron?) to relieve the fluid retention from her head which might be causing the jolts of pain.

Treatment options:

He discussed Gamma and Cyber knife radiation, explained that we have both machines, but that because of the multiple mets and the fact that it is her whole brain, he feels that we should start with a longer treatment of whole head radiation, have another MRI in a few months, and if anything is left, we then do the Cyberknife or Gamma radiation targeting the specific areas. He said that the whole head radiation will target the cancer cells that are not appearing yet but that could be there. It made perfect sense.

Radiation and chemo together:

Mom has had her final dose of Taxol and Carbo. But is continuing Avastin. She has had 3 total Avastin infusions. Avastin is not a "chemo" per say, so they are going to check about putting it on hold during the entire radiation treatment plan. Avastin kills the blood supply to the tumor, but it's not necessarily classified as a chemotherapy drug. (We learned so much in this appointment today). They will stop for a bit, but then MIGHT continue to give her Avastin while she is dong the radiation.

Options of treatment time:

They can give high doses of radiation in a shorter period of time, OR smaller doses over a longer period of time. Example, 10 days of intense radiation vs. 14 days at lower doses. Treatment will be every day, 5 days a week. Appointments last 15-20 minutes.

Risks:

Shorter treatment period w/ higher doses = Some short term memory loss and concentration problems. Doesn't always get ALL of the brain mets. Hair loss or no growth during radiation.

Longer treatment period w/lower doses = Has to postpone chemo. Hair loss or no growth during radiation.

Of course, doing the longer treatment time makes more sense, and after talking to her oncologist, Dr. Ranha and Dr. Sawney decided that they wanted her to go 22 days of treatment. So the time is even longer, but it reduces the risk of permanent long term side effects.

He wanted to start ASAP. So, he asked if we could start today. I left Mom there while I ran to pick up my kids from my husband and she was fitted today for her whole-head radiation mask. Tomorrow she will receive her first radiation treatment.

So, 22 treatments, every day, 5-days-week will take us into early-mid August. Just another part of this rollercoaster, huh?

Now,.....we're off to the County Fair. Mom, my 96-year-old grandpa (who has NO health problems) and my 2 daughters. Time to have some fun. =)

We will get through this, just as we have gotten through all the other bumps on this journey.

:)

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