Any advice apprecaited

[Buffalolove]

My husband was dx with a grade 4 glioblastoma wild type Feb 2023. Since then the full round of chemo and radiation and 3 five day cycles of TMZ. we started to taper down the steroids to 1 mg but he was sleeping 21 hours a day. His repeat scan showed increased swelling with a midline shift. His steroids were re started at a higher dose and he received several doses of avastin generic type. He started with SOB. The CT scan showed saddle PEs. We started lovenox and plan to continue for 2 weeks and the plan is then to transition to oral dose. He continues to be short of breath with any type of exertion and sometimes at rest. His sats are 92 and above but has been so difficult for him as anyone can imagine. He’s had a few nosebleeds and had to hold a dose but we are encouraged to continue as long as we. an control the bleeding. Has anyone had any similar experiences or advice. I would so appreciate you sharing. Thank you very much!

[Denni60]

Yes I had nose bleeds after Chemo. And actually before I was diagnosed with GBM 4. So I am quite familiar with this. It is a year now since. Had operation 80% tumur removed. Radiation and Chemo. To be honest I am doing very well. I try not to have surgery things and no carbs. I have salad everyday, eggs salmon. Lots of changes to my diet after radiation 1cm then 1.5cm it has not grown for 3 months and is stable have faith keep positive, and grateful for being alive everyday I pray that I am hear. Over a year now. Good luck

[Buffalolove in reply to Denni60]

Thank you very much for replying. I’m happy for you in your recovery. Right now my husband stopped chemo and the infusions because the lovenox made his liver enzymes increase. He has been getting intermittent headaches. Scan shows no new tumor growth and other scans unremarkable. Lab work ok no infection. I just don’t understand how fatigued he is weak and dizzy. My heart is broken. I cry so hard everyday. None of this makes sense

[Denni60 in reply to Buffalolove]

I wanted to say, I am on lower chemo 280, instead of 300. My Liver is tolerant with lower dose. We had to stop with higher chemo, just could not take. Try and keep positive. It is also good to talk, my life was turned upside down. I have managed to take control of my life.Don't despair if your partner can keep positive that will certainly help.

[Buffalolove in reply to Denni60]

Thank you. My husband was on low dose of chemo also. He developed saddle PEs which then he needed lovenox. Best of health to you. Positivity is definitely the answer!!!