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What to expect with GBM

Sarah_S's picture
Sarah_S
Posts: 1
Joined: Nov 2009

In May of 2009 my mother watched me graduate from college. In June she saw my sister get married. On August 13, 2009 she went into the hospital after having a seizure and was told after tests she there was a tumor. The biopsy after her craniotomy showed that it was GBM grade 4. The doctors told my sister and I that she had up to a year, maybe two. I lived in Denver, which was 16 hours away and so in late August I moved in with my sister in Kansas City, only 3 hours from my mother. Last week she finished her first round of radiation and is still taking chemo orally.

I feel frustrated with the unknown of what's to come or what to expect. It's been over three months since her diagnosis. In the last 10 days she has been experiencing random debilitating headaches. When she went to see the doctor this last week the medicine they gave her did not make the headaches go away or more bearable. She is going back on Monday. Her short term memory has been affected much more recently and she is tired all the time. I go home almost every weekend and she seems to have no energy and has been more and more forgetful. Before this she was a speech pathologist and is now forgetting words or slurring her speech sometimes. I feel like I should move in with her, but she insists that I don't. She is 55 and a single mother. She lives alone and I am so worried about her. Her close friends spend most nights over at the house keeping her company, but I don't know what to do.

I am scared of losing my mom. I'm only 23. I don't want her to feel scared or hopeless. She is a breast cancer survivor of 3 years and I hate that she is having to battle the monster that is cancer a second time. I've read the statistics and I have hope that my mom can beat this. She has more strength than anyone I've ever known.

Does anyone know if the frequent headaches are common after radiation is finished? I've read so many different things online about early symptoms, but I cant' find much about what the patient experiences post-op and during/after treatment.

GwenLo
Posts: 1
Joined: Sep 2009

Sarah, my heart breaks for you. I lost my husband of 30 years to a GBM when he was 50 and our kids were your age. Jeffrey did not suffer from headaches but he was certainly exhausted after radiation. He took lots of medication to control seizures and swelling. And controlling the swelling may have been a factor as to why he did not have headaches. And I think the headaches may depend on the area of the brain where the tumor is. But pain management is a big issue. I, too, told my children go on with their lives and that their Dad and I would handle this. But the kids insisted that they move to Texas (which had never been their home) so that they could spend as much time as possible with their Dad. They were so much smarter than I was!! And it was a magical 14 months with all of us under one roof.

On a brighter note, I have a very near friend how has been a GBM Survivor for 4 years!! She has finished radiation and finished chemo. So even tho the statistics are bleak, someone has to be on the longevity end to balance out the statistics.

I don't claim to be a GBM expert, but I have certainly walked in your shoes.

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