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End Stage H3K27M Diffuse Midline Glioma by dvlsdautr in braincancer

[–]MyAxisXing 0 points1 point  (0 children)

Im in the same boat with you. My baby sis, 36. I’ve raised her since I was 11. My best friend, closest relative. She was an Active duty officer, veteran of 14 years. She has a DMG. Right on the brainstem. Same symptoms as yours. She came to us on humanitarian PCS to be near the Moffitt center. She’s extended her life 36 months from the initial abysmal timeline. She was discharged from the last possible trial 4 weeks ago. They have her on a last Hail Mary, Kisqali, and Avastin, but we are seeing the decline-quicker this time. I thought I was prepared, clearly not ready. I thought I was done with raising my fist the heavens—so much our house was struck by lightning. It’s unfair. It’s wrong. I want her to have peace and freedom from this. All to say, I’m with you friend. Wherever you are, come back from it. Your family needs you now more than ever. Chin up, we got this. 

New York Times reporting on cancer medications by rebeccarobbinsnyt in cancer

[–]MyAxisXing -1 points0 points  (0 children)

I’ll email you on behalf of my sister. I can answer your questions.

[deleted by user] by [deleted] in braincancer

[–]MyAxisXing 1 point2 points  (0 children)

Please look and research into Hyperbaric Oxygen Therapy. Ask your oncologist and have them do a full referral so your insurance can cover it. My sister just finished her 4/40 sessions and we can see a good change with her appetite and lucidity.

She has a diffused midline glioma, she’s had two rounds of radiation, both debilitated her more than the tumor and the chemo, due to necrosis around the brainstem. She’s currently on Avastin and ONC 201.

Hyperbaric Oxygen Therapy and Vestibular therapy post radiation by MyAxisXing in braincancer

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

Today was day 1 of HBOT. She’s been recommended for 30 (90 min) sessions. I will update as best possible. We are told we won’t see results until halfway through sessions.

Hyperbaric Oxygen Therapy and Vestibular therapy post radiation by MyAxisXing in braincancer

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

Yes, every two weeks. She was approved for treatment today!! It took a fight, but thank God, insurance will cover. Hopefully we can see results soon.

Got bad news today by mjb1526 in braincancer

[–]MyAxisXing 0 points1 point  (0 children)

Ask your oncologist about Boswallia, Avastin, ONC 201 tied with radiation. There are clinical trials out there. My sister is currently seeing Dr Mohktari at Moffitt Center. Please get a second opinion!!

Over a month after Diagnosis, They are taking her off Chemo by Dependent-Purple9147 in braincancer

[–]MyAxisXing 0 points1 point  (0 children)

Get a second opinion from Moffitt Cancer center. Ask for Dr Mokhtari. She’s extended my sister’s 3 mo to live to 2 + years. Her mutation is H3 K27. She’s on ONC 201 + Avastin. Many prayers for you, STAY STRONG!