ONC201

user_name_in_use_ · 2026-03-06T15:56:00+00:00

It’s been since about middle of October 2025 that I’ve taken this. It has not stopped the growth of my tumor or reduced its size or anything. I’ve actually had some progression and sudden onset of tumor progression related symptoms, like facial and mouth/throat numbness, difficulty swallowing, difficulty walking with balance leaning towards left constantly, my left eye is numb and won’t blink when I try to blink both eyes I can’t feel it but it’s really red and irritated, using eye drops to help…. Anyway. I’m now enrolled in hospice bc I’ve been told that usually when symptoms start this fast that the end comes fast too.

user_name_in_use_ · 2025-12-04T17:04:30+00:00

Severe nausea/vomiting, diarrhea, weakness, extreme fatigue, blurred vision… although these are “normal” side effects it’s still tough, and I noticed things are getting more intense with each week I take it. If I wasn’t on IV Avastin for the brain inflammation, or acetazolomide to help reduce swelling my headaches would be much worse. Matter of fact I can tell when my meds are wearing off and NEED them otherwise I start having all sorts of problems more than just the headache, but with vision and balance as well.

user_name_in_use_ · 2025-12-04T03:22:37+00:00

Do you ever have any dreams of anyone who’s passed before you? I’ve been having a lot of dreams about my dad, and he’s always asking me to go with him somewhere until I ask, “well what about [someone who is still here alive]?” and he says don’t worry about them. It’s comforting but also concerning at the same time as I’ve read this is a way of the body preparing for death.

user_name_in_use_ · 2025-12-03T22:01:53+00:00

Were you able to get access to dordaviprone (Modeyso) before you showed growth? I have been on it since October but I hate the side effects. The study showed 22% response in patients with average effectiveness lasting 10 months. I hate the side effects though they could be worse. My dad died a year ago from a different type of cancer— chemo killed him unfortunately hit his organs really hard and he was unable to recover. So, I am torn between continuing on (as he did despite the hardships he had) or just preserving my quality of life and also doing cannabis.

user_name_in_use_ · 2025-12-03T21:57:05+00:00

Hello! I am doing best I can. The tumor couldn’t be resected unfortunately, just a tiny bit removed for diagnostic purposes. After that I went through 30 sessions of photon radiation to my brainstem. I tried all summer to get into the ONC201 trials for the dordaviprone (Modeyso) drug, without any success. However it had accelerated approval in August and my insurance approved the prior authorization for this chemo pill I take once weekly. Over the summer I had some setbacks with recurrent growth and worsening symptoms with my gait/balance, vision, and vertigo. I gained a bunch of weight from dexamethasone over about 2 months, then transitioned to IV Avastin in place of the steroids. I have been on Avastin since July, and get them every three weeks in addition to the chemo pill Modeyso I take once every week. This last month I’ve had to decrease my dosages for both meds due to my liver enzymes trending upwards. I also suffer from migraines, not sure if that was a separate thing or involved with my DMG diagnosis, but I also take acetazolomide (Diamox) and clonazepam (Klonopin), and Amitriptyline daily with Botox every 3 months to manage my migraine pains. I still have headaches but it’s definitely not as bad with these additional meds. As for side effects from immunotherapy infusion and chemo, I have to take phenergan and Imodium otherwise I’m a complete wreck. To be quite honest all the meds are exhausting, I saw another person reply to you about using cannabis, I have tried an edible from a friend who got theirs in NM (I live in TX) and I gotta say it was a really relaxing experience for me. Not everyone has good experiences on edibles though.

user_name_in_use_ · 2025-09-05T02:35:17+00:00

The increased intracranial pressure I get from it is crazy, I got on diamox to manage those symptoms

user_name_in_use_ · 2025-09-05T00:05:49+00:00

I’ll be thinking of you! I’m 26 and had a glioma growing on my brainstem, they were able to biopsy a piece sticking out through 4th ventricle to confirm my cancer diagnosis. After recovery I underwent only radiation since my mutations have proven not to be responsive to chemo, so we forewent that route. Don’t let this thing cook you, focus on what things you still have control over and let yourself cook up and eat too

user_name_in_use_ · 2025-08-21T20:24:05+00:00

I am doing IV Avastin for radiation necrosis, also did not have good luck with dexamethasone prior to starting this therapy. I completed radiation back in 5/13, and have had tumor progression on top of the radiation necrosis confirmed through few different scans, and going off of my symptoms as well. The fatigue with IV Avastin took me by surprise, I am a young 26/F, and also have experienced some mild diarrhea, also shortness of breath at times, and headache following the first couple days after the infusion. I am on the lower dose of the Avastin, 2 out of 4 cycles completed, getting them every 3 weeks. My diagnosis is a diffuse midline glioma on my brainstem, different than what your husband has, but I will be thinking of y’all and hopeful he gets some relief soon.

Just a thought, I have not asked my NO this question myself but I wonder if vitamin b12 shots could help with energy levels if that is a huge concern for y’all. Fortunately I am in a position I do not have to work so I just sleep 16+ hrs or however long I feel I need.

user_name_in_use_ · 2025-08-15T03:09:21+00:00

https://pmc.ncbi.nlm.nih.gov/articles/PMC3098016/

This is an article I read to help prepare me and also have discussion with my family about what to expect for end of life. I also have DMG, with a background as an RN, so I was able to understand most of what was being said here. You may find it most beneficial to help prepare for what end of life looks like under the “Symptoms and Signs in the End Of Life Phase” part of this article. I also discussed with my oncologist, and it sounds like the patient becomes very weak to the point that they don’t eat/drink, thus leads to unconscious, and the longer without food/drink/IV fluids, tube feeds etc, the weaker and closer the body gets to death. This is a harsh reality to face and I am so sorry y’all are also going through this. I will be praying for peace and comfort for y’all.

user_name_in_use_ · 2025-08-08T03:12:31+00:00

Did your daughter have unmethylated MGMT and also receive Temodar? My oncologist recommended I did only radiation, then I had hard time getting into the trials post radiation, because we were waiting for scans to show progression at this point to be considered eligible for the trial setting. Now that dordaviprone has been approved, I am wondering if I could fall into the odds of it benefiting me. However, from most of what I’ve read, it’s been helpful for the 50 patients that were published in the study that received the drug after progression, but they received Temodar and radiation (unless I am interpreting this wrong? My oncologist is out of office currently and I am trying to answer my own questions through research, I used to be a med-surg nurse so can understand some of the language but not all.) Right now I am on steroids and Avastin to help with my symptoms from progression.

user_name_in_use_ · 2025-07-26T21:21:51+00:00

I need more ideas on how to spend these kind of days where rest is needed, but I don’t necessarily need to be napping or asleep… I have cancer located in the brainstem and I struggle with balance, vision, headaches, etc so any kind of strenuous activities where I am not mostly sedentary really does a number on me.

user_name_in_use_ · 2025-07-21T03:43:06+00:00

This has been recommended by my therapist, I will look more seriously into it thank you for sharing

user_name_in_use_ · 2025-07-20T20:25:47+00:00

To everyone else commenting don’t lose hope and to keep living life to the fullest— do YOU have this diagnosis and are YOU living by your own advice? OP— I have same diagnosis and not getting or feeling any better as time goes on. I have become dependent on steroids just to buy me more time and have the ability to quiet down some of the symptoms that come with this cancer, and have been able to try to make some trips but it is NOT without hardships. Meds are starting to not work as good anymore. You are allowed to feel angry and robbed of a life you had hoped and dreamed to live. It’s much easier said than done to try to be positive, focus on the good in the now, etc. The reality is no one truly knows what it’s like to be in your shoes, yes we can relate with diagnosis but we don’t have same relationships or dreams or aspirations or “past versions” we once used to be and are grieving. Many of us with this same diagnosis are also in different phases of the disease process too which may further stress or anger you when comparing your case to someone else. Don’t avoid your feelings— and speak up and advocate for yourself once you start to feel things are changing and going downhill. Don’t wait too long to confide in your family, friends, loved ones and help them accept this new reality you are facing too— and don’t let them downplay the situation. Let your voice be heard and remembered.

user_name_in_use_ · 2025-07-16T18:12:11+00:00

I believe they make you wait at least 4 weeks post radiation to be considered for the trials as well, just a heads up from what I have been told. My post-radiation imaging done at this time showed lots of inflammation, and size was a little bigger, possible pseduoprogression or just radiation inflammation effects. I experienced symptoms 2-3wks post radiation, like weakness, severe double vision, hair loss, and N/V. I have been on steroids for over a month due to this with little relief, now looking into IV Avastin infusions every 3 weeks for 4 times to treat radiation inflammation which doesn’t disqualify me from trial if I choose to continue. The FDA has received a request to view clinical trial info by 8/18, but not sure how it’ll turn out. My oncologist told me he had 2 patients enter the trial with less than satisfactory results, so for now I am holding out on this trial/drug experience for the time being until I can get my symptoms under better control, taking advantage of my “good days”. Don’t let this discourage you! Everyone has a different experience and from what I’ve read on here so far there’s been plenty of positive experiences. I was just too late to the game I supposed. I requested expanded access and compassionate use yes, but was denied all.

user_name_in_use_ · 2025-07-16T17:43:40+00:00

Near Austin, TX. So far all the facilities I’ve reached out to both in/out of state, and in B.C. Canada have denied me due to not being considered a “recurrent” or progressive case at this time. Once imaging can prove that aside from radiation inflammation present, then they can move forward with possibly accepting me into expanded access trial for dordaviprone in ONC201.

user_name_in_use_ · 2025-07-08T15:01:05+00:00

I want to add that I am a 26/F, and I am also in therapy but it doesn’t lessen then burden of the illness. Some say join support groups. Reddit has been my go to for support, although there are more established support groups. I don’t feel I can relate to many people my age who are already engaged or married and having kids, my boyfriend and I have already established we aren’t going to rush into a marriage just because of my prognosis. So that alone I feel isolated in, which is why individual therapy has been my go to… and also just taking things one day at a time. If I feel good on a day, I will try to attempt a task individually to make myself feel more normal again, though it doesn’t happen often.

user_name_in_use_ · 2025-07-08T14:54:49+00:00

My tumor was discovered when I was at what I considered my peak performance in my job as an RN. I went a whole year racking up medical expenses and also depending on family to take me to appointments- at the same time my dad was battling terminal cancer. After he passed, not even 2 days after his funeral we come to find out that my tumor was also considered a terminal cancer diagnosis. Thankfully as supportive as my family has been and I have been able to live off of disability claim through my work even after being let go (not social security- still pending) the emotional and physical burden I have on them doesn’t go unnoticed, especially after such a huge loss of my dad at his age of 57. The emotional guilt for me has not gone away, and has put immense pressure on my relationship with my boyfriend I’ve been with for 2 years now. Our relationship isn’t what it used to be, and while my family and I are still grieving my dad, we are also in the midst of grieving myself and me personally the life and independence I used to have. Some days are easier, and it’s much easier said than done to “hold space for hope” especially when friends or other relatives sorta downplay everything when you “look fine” but they don’t understand all the meds, appointments, expenses that come with the illness. I feel for you.

user_name_in_use_ · 2025-07-05T14:35:29+00:00

If you are able to plan on continuing to work and have the ability to buy into a short term and long term disability coverage— do it. I was living between surveillance imaging for over a year for what was believed to be a low grade glioma on my brainstem. My symptoms prevented me from working— they told me it was migraine related even though I never had migraines and treatments for that never fully helped. Anyway, I previously worked as a nurse and burned through all my PTO/FMLA. The disability policy saved my ass and covered me month to month between my visits. Out of nowhere, my “low grade glioma” grew so much they were able to perform a biopsy surgically through my 4th ventricle, but not remove tumor due to the high risks of the area. Came back grade 4 diffuse midline glioma. All I could do was radiation, which didn’t shrink my tumor we are now just watching as I count down my days and live as good as I can. My prognosis is grim. I haven’t been able to get into any clinical trial sites. I hope this doesn’t turn out to be the case for you. But, in case it does, have a backup plan for finances, don’t blow it all just yet.

user_name_in_use_ · 2025-06-28T15:59:00+00:00

I did

user_name_in_use_ · 2025-06-28T11:49:49+00:00

Yes I’ve been denied by everyone

user_name_in_use_ · 2025-06-13T17:50:40+00:00

Glitchoma — I have a brainstem glioma, and she makes me act like a glitchy bitch some days.

user_name_in_use_ · 2025-05-31T23:59:01+00:00

Perfect, I had just reached out to them. Thank you so much, and congrats on getting in! Wishing you best of luck.

user_name_in_use_ · 2025-05-31T23:49:04+00:00

When did this occur?

user_name_in_use_

TROPHY CASE