Thank you. My heart goes out to all.

Holding back minds in cancer especially by CSN is kinda akward even if not socially.

Best regards,

What type of tumor makes it hard to walk, hard to talk and makes a patient lose their memory completely in the present tense but remembers things from years ago?

The MRI shows the tumors are also growing into her spine and they are doing radiation right now. She has had seizures too that they thought at first were epilepsy

Thanks

Karen

My sister is a brain cancer survivor of 10 years, she had a medulla blastoma "grade 4" and the base of her brain and went through chemo/radiation. She wasn't able to return to work due to her balance issues and short-term memory loss. As the years have gone on, her side effects have worsened, with tongue paralysis, sluggishness, and worsening memory and balance/walking. Ever since she went into remission, her friends dropped off and she has a hard time making friends. As her sister I do my best to socialize her and she volunteers at a museum once a week, but I know she'd do so much better if she knew how to commune with people who understand what she's been through. I see many post-cancer groups that are active physically, but she can't do those hiking/kayaking groups. She just wants to talk to people. She's so fun and wants friends.

Any tips I'd appreciate, especially in Western WA :) Or hit me up if you're in the area!

He has had surgery and are confident they have got it all, will be starting radiation for 6 weeks and chemo for 6-8 months

HAs anyone come across this before .. We are devastated 

thank you 

His neuro oncologist wants to move forward with (only) one more radiation treatment, two non chemo medicines to target the BRAF mutation (I can’t remember the names right now) followed by oral chemo for the next 1-2 years.

He is a strong and otherwise healthy 14 year old boy with zero health concerns apart from this.

Before his diagnosis, he was a very healthy normal teenage boy— did jujitsu, sports, tall & lean, ate well (we are not big processed foods/fast foods people) just the one seizure leading up to finding the tumor.

My question to anyone out there is:
Has anyone with this type of brain tumor gone the watch and wait route?
Has anyone dealt with this before with similar outcomes? Or had different outcomes?

Has anyone refused the chemo treatment and gone a more holistic way? Worked with any functional medical doctors?
He has been clean he does not want to pump his body full of chemo chemicals and medicine for years and so we want to exhaust any and all other avenues before we start or need medication (esp because his current MRI is clean)

I would LOVE to talk to or hear any and all situations, comments, thoughts or instances out there.

Thank you

I'm new to this forum and wanted to reach out and see if others are experiencing similar side effects that my mom is experiencing.

My mom was diagnosed with a left frontal lobe grade 3 anaplastic astrocytoma back in 98'. She had a craniotomy to remove the bulk of the tumor and then had targeted radiation therapy and BCNU chemotherapy. By the grace of God and an amazing oncology team, what was a 6 month time line has now turned into 27 years cancer free (with the exception of a benign meningioma that was treated in 2022).

She had zero side effects from treatment up until about 10 years ago. When she started having increasing difficulty walking which has progressively gotten worse. We have gone through a battery of testing to rule out recurrence, Parkinson's, and other mobility disorders, and have basically been told its either FND or radiation damage from the treatment that will progressively get worse over time.

She feels like her R foot and lower leg are heavy and that she can't really pick it up when walking. She also has perception issues where she feels that objects are closer than they are. Its limited her ability to walk and she has had to give up a lot of her independence.

Wasn't sure if anyone else that has had brain cancer treatment is experiencing anything similar and if you have found anything that has helped your symptoms.

She feels really isolated in this battle and I would really love to be able to connect her with folks who are feeling what she's feeling if I can.

I'm writing because she has now been running a low fever (~100.0 degrees) off and on for the past two weeks. She caught a cold about a month ago, and as of last week she was still testing positive for rhinovirus. So, it could just be that her stressed out immune system is having trouble kicking the cold, but I'm concerned about this fever persisting for so long. Her team at Memorial Sloan Kettering (we live in NYC) says that if the fever doesn't resolve, she will be unable to start her next cycle of chemo pills, which is supposed to begin in 9 days. Her doctor seems to be adopting a "wait and see" approach to the fever, but I admit that makes me a bit nervous.

My question is, has anyone else experienced this while undergoing chemo? Any tips or recommendations for addressing it, or questions we should be asking her doctors? I am still somewhat new to the world of GBM caregiving and would appreciate any insight from people with more experience.

I'm sorry to say I do not have a formal diagnosis. So I only have the following to provide: This has been over a span of about 2 months. Had a siezure and it was discovered she had a tumor on the brain. Over the next couple of months, after tests and consults with the Mayo Clinic (my husband's brother and sister-in-law are in North Dakota), it had progressed even further in a short period of time and now the one tumor became three. On Friday she had surgery in Minnesota and they removed all the tumors. The doctor said had they not operated, she would have had only 4-5 weeks to live. The doctor still says to hold on to hope, but in 50 causes the average is only 1 that goes into remission.

They will head home this week, and she will go into a rehab facility for a while. Then they plan on starting radiation in 4 weeks. There is a small spot on her thyroid, which they said is not critical at this point. Something on her spleen, which has not been identified. And there was a cyst on her kidney which was biopsied and is benign.

My questions: If she chooses to have radiation, what can we send to her to make her more comfortable and able to get through this. My 'care kit' for patients has included things like warm socks, mints, head covering of some kind, word puzzles, books, etc. I assume brain radiation is going to cause more side affects than my breast cancer radiation did.

More importantly, I would love to hear from those of you who maybe have chosen a different method of treatment, or maybe none at all? Please give me your success stories, methods of treatment, and if any of you were stage 4. I would like to give them plenty of options, as I come from a position of 'explore ALL options'. That includes homeopathic, holistic, etc. I really dread her having to do the radiation, as I know how it works and I don't see that it will prolong her life, maybe even make her more miserable and affected (siezures, eye sight, etc.) than is worth doing.

Any advice, suggestions, experiences will be most appreciated. Again, thank you everyone. And I pray that your journeys are sustainable and hopeful and miraculous!

As many know medulloblastoma is a cancer in the cerebellum, which among others, effects balance. Over the years I have progressed into using a walker on my own but due to the fact that I have hit my plateau, which doctors told me would eventually happen, I usually use my wheelchair to get around.

I have shaky eyes and double vision which makes it so I can't drive anymore. I used to wear a bandana to cover one eye but not block my peripheral vision. I have attached a picture of what I mean.

I didn't like glasses before, but I now wear to help with that.

I have short term memory loss. I write a lot of reminders in my phone. Thankfully I am pretty good at making spreadsheets on my computer too. This helps your daily completed list get longer and longer.

Shacky body at times and left sided weakness. It is less shacky in the morning time, so that is when I do my stretching/exercise with a lot of water. Doing this helps me start off the day strong and makes me feel like I have accomplished something. I'm only 37 but a healthy diet is important, and less sugar definitely doesn't hurt either.

I have hearing loss and now wear hearing aids to help. My hearing aids (Resound) are synced with my phone and they have their own app so I can have more control over them.

Along with many others, I have a constant ringing in my ears. Try to keep busy during the day and eventually you might not notice as much. Listen to music or my favorite funny podcast helps. Over time it has gotten less noticeable. I don't think there is some magical cure for this, so helping control it helps a lot.

There might be more that I'm forgetting. I hope this doesn't come off as winey, I know there a lot of people in way worse situations then me. I don't remember a lot about my brain cancer, I try to forget those days and move past them. I'm hoping this helps someone. I don't know if you can send a personal message on here or not but if you want to talk more privately [content removed by CSN Support Team]

Thank you for your time!