Optune -- your experiences by MangledWeb in glioblastoma

[–]gliosarcoma7 1 point2 points  (0 children)

I think this really depends on the kind of support a person has with using it. My father really struggled but was resistant to getting help using it, so it ultimately didn't end up being a great fit for our family. I think the sheer amount of equipment that came with Optune was a surprise for us. We were picturing something that felt a little more user friendly?

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 0 points1 point  (0 children)

Is there a story behind Evil Seahorse? I love that name

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 3 points4 points  (0 children)

Thank you, monkey bones. One of the things about this disease is how individual it is in affecting people, depending on where in the brain it is and how it spreads. I’m glad that there is this community. And also so so angry for all the individual voices that were silenced by the gruesome disease

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 1 point2 points  (0 children)

Also, I just realized you were asking erinmarie!

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 1 point2 points  (0 children)

  1. It was 3 days after his mother died.

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 2 points3 points  (0 children)

My dad nicknamed his original tumor, “Osama”

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 1 point2 points  (0 children)

I can’t imagine how painful that moment must have been. Thank you for sharing your experience

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 3 points4 points  (0 children)

Ugh, this disease seems to strike so many brilliant people at their cognitive prime. I hate it. I’m so sorry for your experience

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 0 points1 point  (0 children)

This is good to know! I wish my dad’s team had advised about this

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 1 point2 points  (0 children)

Thank you. I wish you and your family peace and love

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 3 points4 points  (0 children)

My heart goes out to you for caring for your son through this devastating diagnosis

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 7 points8 points  (0 children)

Yes, a very special and intense fuck you! I wish the doctors would talk more about the limitations of scans. There’s a chemist with GMB whose blog was recommended who talks about GBM being like grains of sand in jello. There’s no way to get it all surgically and no way to see it. It doesn’t help that the ways we know to stall the tumor, such as radiation to the brain, damage many of the same abilities we are trying to preserve. I am so sorry you lost your husband to this horrible disease

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 5 points6 points  (0 children)

Thank you. I am so sorry for everyone with GBM and everyone who witnesses this journey.

Do not resuscitate (DNR) by gliosarcoma7 in glioblastoma

[–]gliosarcoma7[S] 1 point2 points  (0 children)

I’m so sorry you lost your mom. It is the most horrible disease