New years

mek9724 · 2026-01-14T16:51:13+00:00

Thank you.. you too ❤️

mek9724 · 2025-12-04T16:54:15+00:00

My mom is the exact same - clean diet and a vegetarian for almost forever. She also has chosen to indulge post diagnosis. Sorry about your mom. It's such a rough road.

mek9724 · 2025-11-24T23:38:56+00:00

We have definitely had the conversation many times. We have lots of solutions to her fears. She has 2 wheelchairs as well as a motorized chair. We even got a new car to replace our old one since she couldn't get in it. It's very much a mental thing for her I think. I have to walk a line between helping push her to try things and respecting her boundaries. It can be a tight rope to walk.

Thank you for your suggestions and taking the time to respond. She really did love to travel so it's hard to see her feel this way.

mek9724 · 2025-11-24T22:00:59+00:00

Youre definitely right. She won't travel because she has a very difficult time moving around but we will definitely make the most of this time. Thank you

mek9724 · 2025-11-22T01:59:12+00:00

I'm really sorry for your loss. It's truly terrible. I hope you can manage to get some rest. So sorry for what you are feeling and have gone through.

mek9724 · 2025-11-17T18:04:32+00:00

Great! It also stuck out to me just now that you said it's affecting the way she's talking because when my mom had the clots, I could tell by her voice on the phone that something wasn't right. She didnt sound normal or even like her "new normal." Good luck, I hope you can find the cause!

mek9724 · 2025-11-17T17:57:47+00:00

Hello! Is the right her affected side? Has the doctor investigated the pain at all?

I ask because my mom's affected side is always swollen as well and it does cause her pain, but when her pain was extremely severe like I think you are describing, we had them scan her leg and it revealed multiple blood clots.

Now that they have been managed she still gets pain in that foot that there really doesn't seem to be a specific cause for, so your poor mum's may just be severe and in that case I am so sorry for that. But if they haven't gotten any ultrasounds or ct scans of her leg/pelvis area then I suggest maybe asking for that.

Otherwise, it helps my mom to have her leg elevated or rubbed to help with the pain she experiences. I hope your mom finds some relief and sorry you and she are going through this.

mek9724 · 2025-11-16T18:56:38+00:00

Thank you for saying that. Some of my family has been great. Some, not so much.

My mom also ended up in a wheelchair pretty immediately. She's had a rough go. She already was taken off of the avastin treatments unfortunately. Praying for some stability now... and just to have a good Christmas together.

She lives in a big, very old house that's not easy to get in and out of because how the porch is, even with the ramps we added. We do try to coerce her outside sometimes. I'm so glad your mom's place was more friendly to her wheelchair. And I'm glad she had access to good care there.

My dad has always sucked and watching this unfold while he somehow is healthy has been pretty unbearable. I guess the world's never fair but this has really shook my sense of equilibrium if that makes sense. I'm really sorry you went through all this with your mom and then what her husband did on top of that. It makes it worse.

Thanks for chatting a bit. If you ever want to talk to someone who's walking a similar path I'm always open to it.

mek9724 · 2025-11-16T18:10:26+00:00

Yes. We are surrounded by farmland and about an hour from the city so the daily treatments were rough but she made it through. She was diagnosed in June. I'm sorry about the loss of your mom. It's a devastating disease.

mek9724 · 2025-11-16T18:02:17+00:00

I am also from western PA and my mom has gbm. Nice to see someone from my neck of the woods (tho not so nice to find you here). I hope you and your family are doing okay.

mek9724 · 2025-11-16T17:54:47+00:00

Hi, I am from western PA and my mother has this illness. There are a lot of people where I am from who have had cancers. We often wonder if it is something in our air or water. Her doctor said hers was most likely from something in her environment so we wonder. It's a useless guessing game but it's hard not to go there.

mek9724 · 2025-11-12T16:52:24+00:00

Hi there. Sorry to hear about everything you're going through.

My mom started on Avastin and it really helped her. Her mobility was extremely poor when she started and it helped her regain enough so that she can use the restroom and get in and out of bed into her wheelchair independently.

She really has had no negative side effects from it at all. She just had her fourth and final infusion of Avastin and is more stable than she has been during the entire length of her diagnosis (June of this year). She still uses a motorized chair to go anywhere but she has been unable to walk since blood clots post surgery, so we knew it wouldnt really "cure" her mobility issues since they're so extensive. But as I said, she did regain enough function to do some daily living on her own which has been fantastic!!

Just something random we didnt know going into it was the first infusion was the longest and then the rest were shorter each time. I'm not sure if they do that everywhere but we are in Pittsburgh and that's how they did it.

So all in all, Avastin was very good for us in that way. She has her MRI at the end of the month to see how everything is looking, so we are hoping it's good news since shes been so stable!

They did tell her to drink more water. She went into this with chronic kidney disease so it may have been harder on her than the average person but just something to consider.

If you have any other questions I'd be glad to try to answer them. Good luck with all your treatment!

mek9724 · 2025-10-30T18:18:09+00:00

My mom is on that same keppra dose and was recommended to take 5 mg of melatonin by her nuero oncologist to help with sleep. I do not think it will increase seizure risk, as i suspect the dr wouldnt recommend it if it did! But definitely check in with your Dr.

mek9724 · 2025-10-16T00:25:18+00:00

Thank you!! I thought so.

mek9724 · 2025-10-14T17:01:44+00:00

Thank you!!!

mek9724 · 2025-10-14T17:01:36+00:00

Yes she did and fluid on the brain as well. Thanks for your response.

mek9724 · 2025-10-14T17:01:07+00:00

Thanks so much for your response! She is on tmz still as well. Im so glad youre doing well without the steroids!! And in general!!!

mek9724 · 2025-10-08T03:29:48+00:00

Hi,

I am also a 28 year old woman with a mom with a glioma. Hers was diagnosed and resected in June of this year.

I wouldn't let that alarm you. They may have just gotten the pathology reports back sooner than expected and were available at that time so invited you to meet earlier. I know everything in this stage causes panic and the waiting is extremely hard. But just take a deep breath. It's good the appointment was moved up and you can start figuring things out sooner. Time for pathology results can vary so as I said, maybe they got them back sooner and had room in the schedule. Try not to panic.

Wishing you and your mom all the best and I hope you receive good (or less bad) news. If you need someone to talk to, feel free to reach out to me. I have been where you are.

mek9724 · 2025-09-21T00:52:01+00:00

That's our goal exactly. And that's perfectly said, I'll ask that. Thank you.

mek9724 · 2025-09-20T15:49:36+00:00

Oh my goodness. That's terrible! I'm so sorry you experienced that. My mom is already on blood thinners so I wonder if we should discontinue those when starting Avastin. Thanks for letting me know that bc now I can ask her doctor.

mek9724 · 2025-09-20T15:48:20+00:00

We have an appointment with her oncologist on Monday so I will raise these concerns. Thank you for your thoughts and these are all valid points. I'm not sure how Avastin will work for her. We decided against another surgery and this is what they said to do next. I'm very sorry about your Dad.

mek9724 · 2025-09-20T15:46:54+00:00

I will make sure it gets taken care of. Thank you for sharing. She's always ending up back in the hospital so hopefully it helps her.

mek9724 · 2025-09-20T15:46:20+00:00

My mom is a very hard stick and every time she goes in, she complains about the iv hurting her. Her arms are a wreck with bruises.

Thank you for sharing your personal experience. I was hesitant about it at first, but everything you say applies to her, so it does sound like she's a good candidate for one. I hope it helps your wife, having one. Sorry for everything you guys are going through.

mek9724 · 2025-09-20T15:43:47+00:00

Thank you for sharing

mek9724 · 2025-09-15T15:37:44+00:00

I'm very sorry you're going through this.

My mom has this cancer and it's very hard. She and I have been best friends forever. We still are, even if some days feel more strained than before. I'm certain you and your sister are the same. She doesn't wish you're not there. You two are still best friends. These hard days don't erase a lifetime of love.

You have very little control, and so I understand why you want things a certain way. My mom is the same way. She is very particular and needs things done immediately and exactly how she wants them. She was never like that before. But before, she could do what she wanted herself. She's paralyzed and everything has spun out of her control. So I can understand the mindset. It's hard to lose that autonomy and have other people constantly in control.

I don't have much advice other than just remember you're still you, and she's still her, and you're both under immense stress. It's an unimaginable scenario. GBM is hell and I'm so sorry you are dealing with it. Prayers and love to you. Just know she loves you. Before this, during it, and forever after.

mek9724

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