Hello everyone!
My wife (30 years old) was diagnosed diffuse midline glioma (H3K27M).
The story so far:
27/10/2018 MRI, evidence of brain tumour in brainstem.
11/11/2018 stereotaxic biopsy. According to the results of histological examination: diffuse midline glioma WHO IV H3K27M. H3K27M immunostain is strongly positive.
27/11/2018 MRI, tumour increased as well as brain swelling after biopsy.
03/12/2018 - 06/12/2018: chemotherapy course. Temozolomide (280mg) + Carboplatin injection (300mg).
12/12/2018 VP shunt placement.
29/12/2018 chemotherapy course. Temozolomide (250mg) + Bevacizumab injection (400mg).
09/01/2019 MRI, short decrease of tumour size.
10/01/2019 chemotherapy course. Bevazicumab injection (400mg)
25/01/2019 chemotherapy course. Bevacizumab injection (400mg)
08/02/2019 chemotherapy course. Temozolomide (100mg) + Bevacizumab injection (400mg).
22/02/2019 chemotherapy course. Bevacizumab injection (400mg).
27/02/2019 end of radiotherapy treatment. Truebeam, 31 session, 55,8gr.
07/03/2019 chemotherapy course. Bevacizumab injection (400mg).
Also we made Foundation One Cdx genome analysis. In the accordance with the results:
Microsatellite status - MS stable
Tumor Mutational Burden - TM-Low (5 Must/Mub).
Gene alterations:
CD274 (PD-L1) amplification - equivocal
FGFR1 - N546K
NF1 - Q1993
PDCD1LG2 amplification - equivocal
H3F3A - K28M
JAK2 amplification - equivocal
We have ended radiotherapy about three weeks ago and we must decide what to do next. Our chemotherapist in Moscow suggests to continue taking Bevacizumab every two weeks with no additional treatment.
We are planning to do MRI next week (22.03.2019).
1) Will the immonotherapy be effective in our case? We have contacted IOZK and Verita Life clinics in Germany. There is also an option of immunotherapy in Moscow.
2) Are there any promising ways (clinical trials for example) of treatment of H3K27M?
3) My wife took dexamethasone (8mg daily) for 3,5 months. We quit dexamethasone for three weeks now. Now she has moon face and big belly. When does usually these symptoms go away?
Thank you so much and best wishes to everyone,
Alexander
My wife (30 years old) was diagnosed diffuse midline glioma (H3K27M).
The story so far:
27/10/2018 MRI, evidence of brain tumour in brainstem.
11/11/2018 stereotaxic biopsy. According to the results of histological examination: diffuse midline glioma WHO IV H3K27M. H3K27M immunostain is strongly positive.
27/11/2018 MRI, tumour increased as well as brain swelling after biopsy.
03/12/2018 - 06/12/2018: chemotherapy course. Temozolomide (280mg) + Carboplatin injection (300mg).
12/12/2018 VP shunt placement.
29/12/2018 chemotherapy course. Temozolomide (250mg) + Bevacizumab injection (400mg).
09/01/2019 MRI, short decrease of tumour size.
10/01/2019 chemotherapy course. Bevazicumab injection (400mg)
25/01/2019 chemotherapy course. Bevacizumab injection (400mg)
08/02/2019 chemotherapy course. Temozolomide (100mg) + Bevacizumab injection (400mg).
22/02/2019 chemotherapy course. Bevacizumab injection (400mg).
27/02/2019 end of radiotherapy treatment. Truebeam, 31 session, 55,8gr.
07/03/2019 chemotherapy course. Bevacizumab injection (400mg).
Also we made Foundation One Cdx genome analysis. In the accordance with the results:
Microsatellite status - MS stable
Tumor Mutational Burden - TM-Low (5 Must/Mub).
Gene alterations:
CD274 (PD-L1) amplification - equivocal
FGFR1 - N546K
NF1 - Q1993
PDCD1LG2 amplification - equivocal
H3F3A - K28M
JAK2 amplification - equivocal
We have ended radiotherapy about three weeks ago and we must decide what to do next. Our chemotherapist in Moscow suggests to continue taking Bevacizumab every two weeks with no additional treatment.
We are planning to do MRI next week (22.03.2019).
1) Will the immonotherapy be effective in our case? We have contacted IOZK and Verita Life clinics in Germany. There is also an option of immunotherapy in Moscow.
2) Are there any promising ways (clinical trials for example) of treatment of H3K27M?
3) My wife took dexamethasone (8mg daily) for 3,5 months. We quit dexamethasone for three weeks now. Now she has moon face and big belly. When does usually these symptoms go away?
Thank you so much and best wishes to everyone,
Alexander
Hi Alexander,
ReplyDeleteSorry to hear about your wife.
This comes to mind
https://virtualtrials.com/newsarticle.cfm?item=6643
Good luck
There are several multi-kinase inhibitors approved for various types of cancer that inhibit FGFR1, maybe you could ask about the possibilities for treatment with one of these drugs. The cost might be a barrier as they aren't approved for brain tumors (ponatinib, pazopanib, regorafenib, lenvatinib)
ReplyDeletehttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC4573649/
1) Difficult to predict beforehand whether immunotherapy will work or not.
2) I've mentioned ONC201 already which you could possibly get via expanded access outside of clinical trial.
There is an H3 K27M targeted vaccine in development but the trial is only recruiting ages 3-21.
https://clinicaltrials.gov/ct2/show/NCT02960230
Hello, I tried to post this before, not sure what happened. My 46-year-old friend has the same.
DeleteWhat would be the order of deciding between all the different methods. For example Car T Therapy vs ONC201?
My friend just started radiation and chemo which was temporarily stopped when he had surgery to implant a shunt b/c of water on the brain. How do you know which supplements you could/should take?
Thank you so much, Stephen!
ReplyDeleteGET ONC201 FROM DR NICHOLAS BLONDIN, THROUGH COMPASSIONATE USE. NICHOLAS.NICHOLAS.BLONDIN@YALE.EDU
DeleteWWW.NICHOLASBLONDIN.COM
Hi Stephan,
ReplyDeleteMy wife (29) was diagnosed December 2018 with H3K27M in the Thalamus. After biopsy and a quite similar genome analysis to your wife, we have decided to take the risk and accept surgery. She has a gross resection in Charite-Berlin KPS 100 after surgery. Now she started radiation/TMZ(130mg), Kito diete. MRI is planned in 2 weeks.
As you have mentioned, there are clinical trials in San Francisco and Heidelberg on this specific mutation, please check the publications of Prof. Platten.
Keep informing us on how its going with you.
Best wishes to you and your wife.
O.F
Contact Dr. Nicholas Blondin for ONC201 through Compassionate use--
ReplyDeleteWww.nicholasblondin.com
Nicholas.blondin@yale.edu
Join us in Glioblastoma Survivors to Thrivers group on Facebook!
ReplyDeletehttps://twitter.com/NicholasBlondin/status/1107296177278595072?s=20
ReplyDeleteSee Dr. Blondin's post on Twitter about how he is offering ONC201 for diffuse midline gliomas---
ReplyDeletehttps://twitter.com/NicholasBlondin/status/1107296177278595072?s=20
I have a friend, 46 year old male, who recently got this diagnosis. Would these still be your recommendations? Also, I don't understand how everyone figures out which cocktail to create? A lot of research?
ReplyDelete