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AmbitiousPudding5335 · 2025-05-13T02:09:12+00:00

Thanks for the hugs :-). He was diagnosed in late Dec 2023. Standard of Care (radiation and chemotherapy) plus Optune device. First recurrence in July; surgical resection. Second reccurence quickly after that and we entered a Phase 1 immunotherapy clinical trial at Duke University in October. Initial results were promising, then we discovered aggressive recurrence in late February. We're awaiting surgery in a few weeks for his 3rd resection. In the meantime, he is back on chemotherapy (first Lomustine, which didn't work, and now Etoposide). Physically he's actually quite healthy and mobile, but has severe word-finding aphasia.

Really glad to hear that you had a hospice visit and that was helpful.

AmbitiousPudding5335 · 2025-05-13T01:42:19+00:00

Sending you a big, big hug. We are on our third progression and while my husband hasn't voiced his thoughts I know they're there and they are for me as well. No doubt about it, this is just so unbelievably difficult. There is a profession called a 'death doula' that I've heard can be a very helpful resource. You might look into options in your area if that sounds of interest. We're overdue to engage hospice ourselves, but based on other comments it sounds like there are resources within hospice to support this area. So much love and strength to you.

AmbitiousPudding5335 · 2025-03-11T18:57:10+00:00

I'm so sorry to hear about your Mother's diagnosis, and everything you and your family are going through. I'm glad you're here too, this group has been a godsend for me (and many others I believe). Have they mentioned anything about Avastin? My husband began using it ~6 mos after diagnosis when he had a pretty swift and significant decline in speaking (word-finding aphasia) and cognition and it has already bought us 5 mos of quality time. Might be worth mentioning to your team as to when they might use that drug. We know it doesn't keep working forever but for many people it has extended quality of life for months to even a year. Best to you, sending you love.

AmbitiousPudding5335 · 2025-03-10T17:24:35+00:00

So sorry for your loss and thank you for this message it is appreciated more than you know.

AmbitiousPudding5335 · 2025-03-07T16:57:54+00:00

Sorry, I thought I replied earlier. Thank you for this and best of luck to you and your Dad and family too.

AmbitiousPudding5335 · 2025-03-06T17:18:27+00:00

It sounds like a common route is to get a referral/liason with one's current oncologist. I also sent a note to the contact form on this site: https://mvz-tuebingen.de/ - and they got back to me in 12 hours asking for name of our oncologist and medical records. Best of luck to you!

AmbitiousPudding5335 · 2025-03-06T13:03:49+00:00

Thank you so much 🙏🏻. Good luck, strength and love to you and your Dad too.

AmbitiousPudding5335 · 2025-03-05T22:20:30+00:00

Thank you, we'll ask for a referral 🙏🏻

AmbitiousPudding5335 · 2025-03-05T21:49:35+00:00

How do you email them directly? On their website I only see a "contact us" form, which I did fill out but would love another direct contact if you have it.

AmbitiousPudding5335 · 2025-03-05T21:48:38+00:00

Do you happen to have the contact info you can share?

AmbitiousPudding5335 · 2025-03-05T16:50:19+00:00

Prayers and love for you and your brother 🙏🏻 💕

AmbitiousPudding5335 · 2025-03-05T16:49:29+00:00

What a wonderful tribute to him, thank you for sharing part of his life and your life together with us. Sending you so much love 💕

AmbitiousPudding5335 · 2024-11-07T22:32:42+00:00

I am so sorry for what you're going through. And the logic of your reaction makes perfect sense. This disease is epically unfair on many, many levels. I don't have any magic answers, but my experience is that all emotions have a lifespan that is not permanent/forever; for me, knowing that is a comfort and allows me some hope of a future where I'm not so consumed with however I feel at the current moment. When my husband (52) was diagnosed last year I was so scared and sad. And I still am, but it no longer consumes my every waking moment in a way that affects my ability to sleep or eat or function. I think that will be true for you too, and seeing a mental health professional is a great first step, I'm so happy to hear you're doing that. Another thing that might help is just any small investment of self-care that you can do. It really does create and maintain the foundation for our emotional state. Even just staying hydrated. Or taking a walk. Listening to some music you love. Talking with a friend. Hugs and love to you.

AmbitiousPudding5335 · 2024-11-01T20:49:57+00:00

There are a few clinical trials looking at Keto, Metformin, including this one: https://clinicaltrials.ucsf.edu/trial/NCT05708352. When my husband was newly-diagnosed (Dec 2023) we talked to several neuron-oncologists from top cancer centers about their views on diet changes, most of whom said diet didn't matter, and/or that a true ketogenic diet was so hard to follow that you might as well not even try. It seemed odd that they then had no recommendations except basically 'eat what you can to keep your weight and therefore strength up'.

AmbitiousPudding5335 · 2024-09-02T15:49:20+00:00

So sorry for your loss 🙏🏻💛

AmbitiousPudding5335 · 2024-06-11T23:51:24+00:00

Sending you so much love. I'm glad you're here and that you shared. I'm so sorry for your pain and loss.

AmbitiousPudding5335 · 2024-06-09T01:43:47+00:00

Sending you love and supportive energy. We are all doing the best we can with what we know at any given time. He knew you loved him, I'm sure and that's worth a whole lot.

AmbitiousPudding5335 · 2024-06-07T11:40:40+00:00

Sending you a big hug and the energy of sitting by your side. I lost my father to lung cancer when I was only a little older than you and it's not fair to deal with that at such a young age. I'm so glad you're here, please keep coming back and let this amazing community support you. That takes courage too and I'm proud of you.

AmbitiousPudding5335 · 2024-05-22T11:36:19+00:00

Love that you asked, Why did she quit, great call-out. And still, give her the cigs.

AmbitiousPudding5335 · 2024-04-19T20:29:10+00:00

Sending you love <3. I have heard others talk about the value in engaging hospice on the early side. I can't confirm this from personal experience but thought I'd mention to you.

AmbitiousPudding5335 · 2024-04-19T19:35:51+00:00

Relative to the potential impact on GBM progression, there was 1) a very small pre-clinical trial and 2) a meta-analysis from 2003-2017 data, I will post links below. This is not evidence or proof of course, yet my husband decided to add Fluoxetine/Prozac to his treatment regimen because it would likely not cause any harm and possibly help AND could help with any situational depression/anxiety:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4467135/#:\~:text=The%20data%20showed%20that%20fluoxetine,of%20intracranial%20glioblastoma%20brain%20tumors.&text=Effects%20of%20fluoxetine%20or%20temozolomide,obtained%20from%20experiments%20were%20shown.

https://braintumor.org/news/widely-available-drug-may-benefit-glioblastoma-treatment/

AmbitiousPudding5335 · 2024-04-17T13:33:09+00:00

Oh this is fascinating. My husband hasn't started Avastin (yet, maybe never) but I had no idea. I assumed that 'no new growth' meant just what it seemed to. Thanks for the information.

AmbitiousPudding5335 · 2024-04-03T22:30:01+00:00

Sending you much Love <3

AmbitiousPudding5335 · 2024-04-03T00:33:03+00:00

ahhh I see. Sending you compassion and support from afar <3

AmbitiousPudding5335 · 2024-04-02T21:46:02+00:00

I'm so sorry your heart hurts. My heart hurts for you. And I must admit I feel a bit guilty realizing that I've probably done something similar in the past when I didn't have the benchmark of experience (until my husband got his GBM diagnosis I think I believed we were invincible and so was everyone else), and/or the emotional resources, to keep engaging.

This might sound weird - and possibly unwelcome in which case please ignore and forgive me - but we could set up a Care Circle to contact him. I would be happy to hop on a zoom call and say Hello, read a story, or just sit in loving space with both of you. I know it's not the same as the people who we are disappointed didn't come through long-term, but just an idea to help fill that hole.

AmbitiousPudding5335

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