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Malignant diffuse midline glioma H3 K27 mutant. 55 yrs. old

Lhoodgo3
Posts: 5
Joined: Jul 2017

any information on treatment or success stories.  Have gone thru radiation and chemo; tumor has grown. Per last MRI.now starting Avastin.  One treatment and already having nose bleeds.

jenabell11
Posts: 3
Joined: Oct 2017

Hi Lhoodgo3. How are you doing? My husband was diagnosed in June with Diffuse Midline Glioma H3K27M in the pons. Had radiation and now started avastin. Checking to see how your experience with this has been so far?

Lhoodgo3
Posts: 5
Joined: Jul 2017

received 2 avastin treatments and decided not to take further treatments since tumor had grown.  Was diagnosed in Nov. 2016.  His is in the thalamus and is inoperable. Did your husband have any symptoms?  How is your husband doing?

Lhoodgo3
Posts: 5
Joined: Jul 2017

Have seen an awful decline in last 2 weeks.  Went from sitting in chair unassisted to unable to get out of bed or stand.  Very confused all the time.  Paranoid about some one after him, thinks hospice is trying to poison him, don't drink the water, hallucinations,  Very combative!  It is awful!  Update!  It appears the morphine was causing lots of these issues.  Not taking any at all and slowly regaining strength and cognitive thinking is back to normal!

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