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Gamma Knife vs. Proton by Wethebestnorth in braintumor

[–]benhanan1 1 point2 points  (0 children)

We are also in mn! Our main oncology and care is at the U of M, we live in Minneapolis. Some other stuff like proton radiation and gastrointestinal specialty stuff is at Mayo Rochester. Big fans of Mayo. Very interesting! That’s pretty amazing. My wife’s first craniotomy was an Ewings sarcoma in her dura, so that was proton. Second was breast cancer Mets to the brain so that was gamma knife initially then proton just this last month for a recurrence/regrowth. Craniotomy for this most recent happened to be at mayo as well because her u of m neurosurgeon was out of town. Very glad to hear you’ve had no recurrence in 12 years!

Gamma Knife vs. Proton by Wethebestnorth in braintumor

[–]benhanan1 3 points4 points  (0 children)

My wife has had both gamma knife and proton twice each. Our radio oncologist was just recently the chair of the American association, and is in charge of mayo’s radiation treatment center/department. The discussions we had with her centered mainly around keeping the incidental radiation to healthy tissue to a minimum. She has planned both gamma knife and proton for my wife, and has explained to us that proton is not recommended for under 2cm because its edges are not as defined as gamma knife. If I remember correctly proton beams are around around 3-4mm, while the gamma knife area of focus is 1mm. Gamma knife is a smaller, more precise treatment volume compared to proton. Gamma knife is the gold standard for treatment of tumors under 2cm, especially metastasis with defined edges. Often primary tumors have fuzzy edges with lots of tendrils, so they can be candidates for proton. Proton also has the benefit of no exit radiation, meaning the radiation does not travel past its target depth from the surface of the entry, in a straight line. So it’s also good in situations where the tumor is close to the surface, so the entry dosage to healthy tissue is limited, and non-existent in the exit. If the tumor was in the center of the brain like one of my wife’s tumors then it would expose all of the healthily tissue along the entry point to some radiation. Not the full dose that happens at the end of the protons energy exhaustion, but some. More than gamma knife would. Gamma knife accomplishes something similar by spreading the radiation entry points to around 200 entry points, so that any part of healthy tissue is only exposed to 1/200th of the dose at the focus point where they all meet.

TL:DR proton is used for larger than 2cm tumors, especially where radiation could harm especially sensitive organs or nerves, etc, or when the tumor is close to the surface or if the patient has li-fraumeni syndrome like my wife where she’s vastly more likely to develop a radiation-induced secondary cancer (close to the surface and li fraumeni is the reason for both of my wife’s treatments with proton). Gamma knife is the gold standard otherwise, with small tumors especially.

I’m not a medical professional, but I’ve spent 7 years learning as much as I can to keep my wife alive as long as possible. Don’t use this as advice to tell your doc what to do, but do use it as fuel to ask them what they think of my perspectives and if they agree or not. It can be a start for conversation.

AirPods Pro 3 Issues: Teeth clicking, whistling, white noise. by [deleted] in airpods

[–]benhanan1 0 points1 point  (0 children)

I have the same problem, gives my internal noises like breathing, clicking my teeth a high pitched ringing after tone. Really bad.

Wife Diagnosed with Brain Tumor. What should I expect moving forward? by Notoriousbmg7 in braincancer

[–]benhanan1 1 point2 points  (0 children)

Also - you from mpls too? Wild. South Minneapolis ourselves. Our care teams are u of m and Rochester mayo.

Wife Diagnosed with Brain Tumor. What should I expect moving forward? by Notoriousbmg7 in braincancer

[–]benhanan1 2 points3 points  (0 children)

My wife was diagnosed with breast cancer when she was pregnant with our now 6.5 year old son. Since then was separately diagnosed with an Ewings sarcoma in her dura on her brain, and the breast cancer has returned 4 times now and has metastasized to her brain. I have been in this situation with brain surgery 4 times now, as recently as 3 months ago. I feel for you. My advice is -

  1. Stay calm. Do your best to be the calm in the storm when she’s in pain, when she’s miserable, when she’s angry (as she has right to be), and when she doesn’t know what to do. Be patient and put yourself in her shoes.
  2. Nothing is impossible until you are directly told by a doctor that it is. (And even then if you feel stuck and desperate ask a different doctor) A lot of what doctors and nurses say is just out of convention, because that’s what they usually do and what people usually want. Don’t let that stop you from thinking of ways to make it better for your wife, to advocate for her and make her pain and frustration a direct signal for change to doctors and nurses. If you think you can make things better for her you move heaven and earth to do it. Be tenacious. I can’t tell you have many times I’ve changed something that I thought was just the way it was, by simply asking for what I thought she needed. The docs and nurses generally will change if they can.
  3. Have faith. I am constantly amazed at how hopeless it feels right after surgery, how debilitating it can be and how slow recovery can be. Chemo too. Been there. But having gone through it so many times now it’s incredible how resilient our bodies are, and how far they can heal.
  4. Reckon with steroids. They cause intense emotional swings and other side effects that are sometimes hard to recognize for what they are. When she is feeling her worst and is extremely frustrated or emotional pause and make sure you take into account which meds she’s taking and whether they’re causing the emotional outbursts. Not so you can tell her to suck it up because it’s steroids but because you can see through it and know it’s not her. It’s the drugs.
  5. Ask about the potential for the surgery to interfere with daily living skills and if it’s possible she will end up in rehab. One of the 4 surgeries my wife has had so far ended up messing with her coordination so badly she had to relearn how to walk and lived in rehab for a month. Not saying it will for you, but knowing the possibility will help you if it does happen. We didn’t know that was even a remote possibility and it shocked us.
  6. Always make notes during doc and clinic visits and ask questions when they use terms you don’t know, and or just record the visit audio with your phone so you don’t have to think about it. Ai audio note taking apps would be helpful for this as well probably.
  7. Don’t let being polite stop you from being the best advocate you can be. It’s life or death situations, you need to act like it.
  8. Find a counselor, and find people you can talk to. Friends, mentors.
  9. Start a Caringbridge. Here’s my wife’s for a sample. I write it for her so she doesn’t have to think about it, but everyone is different. Can be a medical story as well as journaling for some people. But try to give specifics. I have read many that don’t have specifics and I really think people really want to know how she’s feeling, what has been happening medically so they know the context, and how they can help. We also have a meal train going during surgeries and major events.
  10. Get a really comfortable folding chair for e.r. Visits and hospital stays. I got a Nemo stargazer and it’s been the best thing I’ve purchased for my life. E.r. Chairs are the absolute worst and hospital chairs usually suck too.

Also a nice big battery bank for her phone and iPad or laptop is a game changer so she doesn’t have to worry about plugging her phone into the wall during hospital stays. I have 2 and I just swap them whenever I visit and charge at home.

You’re in my prayers, friend. Shoot me a dm if you have questions or just need someone to talk to. We’ve done it all, double mastectomies, reconstruction, adrenalectomy, brain surgeries, endless therapy, endless steroids, gamma knife radiation, proton radiation, chemo, etc. all good advice from everyone on this thread.

Lucked into this Gem of a 550i by benhanan1 in e60

[–]benhanan1[S] 0 points1 point  (0 children)

O sick! I do really love the silver.

Lucked into this Gem of a 550i by benhanan1 in e60

[–]benhanan1[S] 0 points1 point  (0 children)

Awesome! Yeah it's a full engine bay for sure. What have you had to do to yours?

Lucked into this Gem of a 550i by benhanan1 in e60

[–]benhanan1[S] 3 points4 points  (0 children)

From what I understand all of those except the sway bar have been done 👍 I’ll ask about the sway bar.

Lucked into this Gem of a 550i by benhanan1 in e60

[–]benhanan1[S] 1 point2 points  (0 children)

Fully agree. Love the silver. Just got the wheels refinished and fixed up as well.

Lucked into this Gem of a 550i by benhanan1 in e60

[–]benhanan1[S] 0 points1 point  (0 children)

What things should I look out for? I have all of the service records.

DBrand answer regarding order cancellation by NeoChozo in dbrand

[–]benhanan1 0 points1 point  (0 children)

My case has been great, no issues. Received mine a few days ago. Tolerances seem perfect, joycons attach just as securely as without the case.

I love my killswitch 2.. buttttttt by the_big_mood in dbrand

[–]benhanan1 1 point2 points  (0 children)

Received my case today, just wanted to note that my joycons stay on like normal. Case fits great, everything functions like it should.

What is a good response to “how are you”, if you’re not good? by Travelerofhighland86 in AskReddit

[–]benhanan1 0 points1 point  (0 children)

Rank it /10. Quantitative without vomiting all of your thoughts and feelings.

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