Share Your Brain Tumor type & Years since Diagnosis

@gulleygirl
I have a hemangiopericytoma since 2011. Same as you I had 3 craniotomy’s and the stereotactic radiation. It now spread to my lungs and the dr wants me to do chemo to shrink them. Im skeptical. I also was diagnosed with seizures like you. I never met someone with my kind of brain tumor. How are you doing now?

@ddiane, now you find yourself on a new and unknown path of managing loss and grief. Just know that everyone's path is unique, but you are not alone. If and when the time is right for you, I invite you to join the discussions in the bereavement group as needed.
- Loss & Grief support group https://connect.mayoclinic.org/group/loss-grief/

Sending a virtual hug.

to kjsthljc1I had re read your story this morning and was thinking of you as well. Our stories sound so familiar. Unfortunately I feel like they didn't have a chance. After my husbands surgery he did great. He had no pain and was receiving therapy at home. We were very hopeful! He then got cellulitis in his leg, and an allergic reaction to the antibiotic, He was in the hospital for 13 days with other health issues as well. He came home for 4 days and ended back in hospital where he had a stroke. He didn't have a seizure but they had started him on anti seizure med from the very beginning so I believe that helped. He then went to hospice where he passed a week later. I was his caregiver and was so glad I spent so many hours with him. His speech was affected so I wasn't always able to understand what he said which was hard for both of us. Thank you for reaching out to me, lets keep in touch. Hugs to you as well.

@ddiane SO very sorry for your loss. Thank you for being strong and dedicated. My husband passed just 45 days after initial diagnosis of grade 4 glioblastoma. His first symptom was unable to speak followed by a seizure. 18 days after surgery, the week before he was to begin 5 weeks of daily radiation and chemo, he had a stroke, was back in the hospital for a week where there was no improvement, he was basically just sedated until I moved him to hospice where he passed just 3 days later. This is such a horrible disease with no mercy for the patient or the living. Prayers are with you.

Thank you for reaching out. It was a roller coaster of emotions between hope and sorrow. It seemed long and hard but yet fast for his decline. He passed away on September 11th with me by his side. I was glad that I could be there for him as much as I did but it was exhausting. He will be greatly missed by family and friends.
you are a blessing too. Keep up the great work.
ddiane

@ddiane, just checking in. I can imagine you are overwhelmed with everything going on too. Thank goodness you have support around you both clinically and personally.

How are you doing today?

Being treated still for seizures from a Glioblastoma Multiforme grade 4 since April of 2010. Unfortunately, they will never say that I am cured because of a chance that the cancer could come back. Since 2014, my doctors claim there is No sign of progression, and just a cavity where the tumor was. Because my treatment in those days consisted of radiation therapy, that is now the norm for my brain. Now, just about every 4-6 months, my seizures get bad enough, that my caregiver thinks I need to be admitted to the hospital. Unfortunately the results are the same, No tumor regrowth. Just a Migraine disease that causes massive fatigue and false alarms to my caregiver just because I cannot speak to the caregiver.

Hey.
Kenny vb with glioblastoma(4) in right cerebellum. Craniotomy. 20/01/2024.

I researched the medical journals for four months and requested to have lomustine added to the Temozolamide during chemo-radiation and chemo. Lomustine day 1. Temozolamide on days 2 to 7. On a 6 week cycle. Sometimes this was extended by one or two weeks. The median OS is 36months.

So far I have exceeded the ‘gold standard’ treatment median OS of 14 months. Thanks Dr Gordon.

I am glad to read you had proton beam treatment. Radiation was similar to x-rays. It affected by right ear hearing. Reducing hearing. And during and shortly after detached retinas in both eyes.

X-rays may also have the potential to cause another cancer!!

Now I wished proton beam treatment had been a possibility. It is not available where I live in New Zealand.

The next step for me ( if its affordable) is gamma knife surgery. Or rather treatment. A bad name as there is no knife or surgery. Dr Chris Duma explains this treatment well on his site and on a TedTalkX.

With no cure I take a daily dose of asprin, methylene blue and Forskolin. Combined with a keto diet, ie try to avoid as much sugar(s) as possible. It feels like I am trying to heel myself.

Right, back to researching gamma knife on pmc ( pubMed).
Cheers Kenny vb

I really appreciate Mayo clinic connect. I do have all my family support as well as all our groups of friends an neighbors, but to talk to people who are going through this does give the reality side of what people are going through and their treatments and can get more insight. I did get the book they call me the Miracle but haven't finished it yet. Her story gave me more insight but my husband had many more health issues going on. I want to say that although his early body is shutting down, as a believer in Jesus I know God has a heavenly body for him. He is now on hospice and days are limited. He will leave a great legacy for his time on earth and rejoice with others in his heavenly home. Wishing all who struggle with this cancer the strength you need and that you find God's blessings in your struggle.

@colleenyoung unfortunately he had a small stroke and still in the hospital. He has right side weakness. He was overwhelmed with all his been through and has now decided to give up on life. We are getting support from all service provided here and our family is devasted.
I wish i had a better outcome to report.
grieving wife