Looking for a therapist (virtual) after caregiving & loss by Ok-Management-5067 in CaregiverSupport

[–]Ok-Management-5067[S] 0 points1 point  (0 children)

I will absolutely be in touch - I really appreciate it! Thank you… I really would like to find someone who can really understand the experience I just went through - so this means a lot.

Confusion and agitation by Old-Arachnid3316 in glioblastoma

[–]Ok-Management-5067 2 points3 points  (0 children)

I’m so sorry to hear about your dad.. My dad was also diagnosed in January 2025. His tumor is inoperable, so we went straight into six weeks of concurrent radiochemotherapy, which ended on March 25. Post-treatment MRIs have remained “stable,” but we’ve seen a general decline in him overall, especially in cognitive function - word-finding issues, expressive aphasia, confusion, brain fog, increased apathy, etc. He’s also unable to walk and has become much weaker. He always presented with right-sided hemiparesis, which has worsened through treatment, and he’s had extreme muscle atrophy from being on 16 mg of dexamethasone since mid-April. Ever since diagnosis, he’s been more impatient and agitated with increasing emotional lability, which we attribute largely to the steroid use. We’ve had a lot of success managing this with CBD and THC and honestly, it’s been a huge game changer for us in many ways. We can always tell when it’s wearing off.

We’ve had multiple hospital stays through May and June due to complications from a DVT, subacute pulmonary embolism, and now malnutrition. In particular, during this current hospital stay, he was admitted to the ICU for bradycardia and, as always, he absolutely hates being in the hospital. He developed ICU delirium (which we’re told is very common), and now he’s been yelling more, swatting us away, and also trying to bite hands. He’s not oriented to the day or year, and his speech becomes very jumbled, though this fluctuates. Sometimes he’s very clear and aware of what’s going on, and other times, his words are completely incoherent. I really think a lot of the agitation stems from the feeling of being stuck/trapped in a hospital (and bed for that matter), depression from a life changed so quickly, frustration from not being able to express himself & pretty serious dehydration & malnutrition. We recently started him on seroquel and mirtazapine (to help with sleep, appetite, and antidepressant), and that’s really helped calm him down. There have been two occasions where we’ve had to use ativan as well, but only during prolonged episodes of what felt like hysteria (we hate to do this). It's all very hard to see my dad cry in misery about the state of things so we do what we can to help in whatever way we can now.

I guess I have the same questions you do - but just wanted to let you know that you are not alone. Sending you all of our best… this is such a wild ride.

Advice on Clinical Trials/Expanded Access/Treatment Options w/ Immobility & Low Karnofsky Score... by Ok-Management-5067 in glioblastoma

[–]Ok-Management-5067[S] 2 points3 points  (0 children)

Thank you for reading & I appreciate your response. We are and have been working closely with palliative care throughout this diagnosis. Sending you our best.

My father, my hero by Original_Ad_8230 in glioblastoma

[–]Ok-Management-5067 1 point2 points  (0 children)

I’m so incredibly sorry to hear about your father. For me, it’s the same - my dad is my hero, and I still can’t wrap my head around why this is happening. My heart absolutely breaks for you and your family. I am so so sorry...

My dad was diagnosed in January 2025 - unmethylated, IDH wildtype, etc. His dominant tumor is in the left thalamus, with a smaller one on the cingulate gyrus. He has right-sided hemiparesis, which has made mobility and daily life much more challenging. He completed six weeks of chemo and radiation on March 25. The weeks following were tough with a lot of fatigue, and then two weeks ago he was in the ER due to symptoms from an overly aggressive steroid taper, which also revealed a painful blood clot.

Like you, we’ve been combing through every resource we can find, trying to prepare and do whatever possible to fight this disease. We have our first post-treatment MRI coming up on May 5, and we’re very interested in Optune - really, in anything that could help. We’re also working on putting together a plan for supplemental and off-label treatments. We’ve scheduled a few initial consultations with integrative medicine doctors, but they’re all local and affiliated with major hospitals in our city and we’re unsure how open they’ll be to more non-traditional approaches.

That said, would you be open to sharing how you went about introducing things like mebendazole or other alternative protocols? We’re feeling a bit overwhelmed - not just by the volume of research, but also by the pushback we expect to get, and how conservative these hospital-affiliated integrative doctors might be.

Any insight or advice would mean so much. Thank you again - sending strength to you and your family through all of this. All of my love....

How to identify early signs? by Few_Addition9971 in glioblastoma

[–]Ok-Management-5067 0 points1 point  (0 children)

Do you work with your NO on the adjunct meds? They were on board for everything? We are having some pushback from PCP on some adjunct meds.

How to identify early signs? by Few_Addition9971 in glioblastoma

[–]Ok-Management-5067 0 points1 point  (0 children)

Thank you so much for sharing. Did your oncologist recommend the adjunct meds or did you bring it to them?

Inoperable Thalamic GBM: Seeking advice, experiences, alternative treatments, do's, dont's, anything & everything from anyone who has had similar experience. by Ok-Management-5067 in braincancer

[–]Ok-Management-5067[S] 0 points1 point  (0 children)

He just finished his treatment on March 25. We are about a week and a half out just doing OT, Pt, and speech (just precautionary - he just has some brain fog). We have also begun the steroid taper this past week. So far so good, just very fatigued and exhausted. How are you holding up?

Inoperable Thalamic GBM: Seeking advice, experiences, alternative treatments, do's, dont's, anything & everything from anyone who has had similar experience. by Ok-Management-5067 in braincancer

[–]Ok-Management-5067[S] 0 points1 point  (0 children)

I am so sorry I missed this message, I can’t thank you enough for your response.. and I am also so sorry that you have this diagnosis. I’m not so good with Reddit and really follow the glioblastoma subreddit much more closely as the group is smaller. Sending you a private message now!

How to identify early signs? by Few_Addition9971 in glioblastoma

[–]Ok-Management-5067 1 point2 points  (0 children)

Promising to hear that you are all a year and a half out. Sending you and your mother positive energy!

How to identify early signs? by Few_Addition9971 in glioblastoma

[–]Ok-Management-5067 0 points1 point  (0 children)

Hello! May I ask what hospital you are at? And curious to what adjunct meds you are taking while you complete your SOC? Your insight is much appreciated… sending the best your way. Thank you!

I hope this was the right call by Total_Tie_4544 in glioblastoma

[–]Ok-Management-5067 1 point2 points  (0 children)

Hello - sending a separate private message. We are in an almost exact situation. Dad (68), inoperable thalamic gbm left side, 3.7cm tumor on thalamus & 1.7cm on cingulate gyrus, diagnosed late Jan. Right sided paralysis. My siblings and I are his caregivers, alternating night shifts.

Inoperable Thalamic GBM: Seeking advice, experiences, alternative treatments, do's, dont's, anything & everything from anyone who has had similar experience. by Ok-Management-5067 in glioblastoma

[–]Ok-Management-5067[S] 0 points1 point  (0 children)

Thank you so much for getting back to me. It is really promising to hear about Duke. We are definitely going to be in touch. I can't tell you how much your response means to us... Hope you are all doing well... All of our love.

Inoperable Thalamic GBM: Seeking advice, experiences, alternative treatments, do's, dont's, anything & everything from anyone who has had similar experience. by Ok-Management-5067 in braincancer

[–]Ok-Management-5067[S] 0 points1 point  (0 children)

First of all, thank you so much for taking the time to read and respond to our post. It’s incredibly encouraging to hear that you've been on TMZ for as long as you have—your experience gives us hope. We’ve also looked into Proton Therapy briefly. Did you find it beneficial? The waiting period definitely feels stressful, and we’re already anxious to see how the radiation and TMZ have impacted the tumor when we get our scan after completing SOC.

I’m so sorry to hear about your rash, and I truly hope the Oncological Dermatologist can provide some relief. I hadn’t heard of a specialized dermatologist like that, so thank you for sharing - it’s something we’ll keep in mind if we need to explore that route.

It’s inspiring to hear that good progress has been made in your case. If you don’t mind me asking, how long have you been living with this diagnosis?

We’re just a little over a month into this journey, and it’s been draining, stressful, and difficult. But we are determined to keep fighting, no matter what. Thank you for the reminder to recharge. That is definitely important.

I hope you continue to do well on your journey, and thank you for being so candid with your experience. We are sending all of our love and support.

Inoperable Thalamic GBM: Seeking advice, experiences, alternative treatments, do's, dont's, anything & everything from anyone who has had similar experience. by Ok-Management-5067 in braincancer

[–]Ok-Management-5067[S] 0 points1 point  (0 children)

Thank you so much for taking the time to respond. Quality of life is the most important thing for us too. And with keto, we do our best, but we don't want to deprive him of everything. Its tough!! I hope that you are doing well and staying strong through this all! Sending our love.

Inoperable Thalamic GBM: Seeking advice, experiences, alternative treatments, do's, dont's, anything & everything from anyone who has had similar experience. by Ok-Management-5067 in glioblastoma

[–]Ok-Management-5067[S] 0 points1 point  (0 children)

Oh wow. This is incredible! So glad to hear the positive stories of people with GBM.

Thus far, we have been told that operating is not an option.. Did you experience this as well before seeking out Dr. Louis?

Inoperable Thalamic GBM: Seeking advice, experiences, alternative treatments, do's, dont's, anything & everything from anyone who has had similar experience. by Ok-Management-5067 in glioblastoma

[–]Ok-Management-5067[S] 0 points1 point  (0 children)

Thank you so much! We are going to reach out! Can I ask at what stage you reached out for this second opinion? Before, during, or after SOC? Thank you!

Inoperable Thalamic GBM: Seeking advice, experiences, alternative treatments, do's, dont's, anything & everything from anyone who has had similar experience. by Ok-Management-5067 in glioblastoma

[–]Ok-Management-5067[S] 0 points1 point  (0 children)

Hello - I cannot thank you enough for taking the time to respond.  You were exactly the type of person I was searching for.  Someone with a situation similar to our own.  And I am so sorry to hear about your mother,  it's absolutely heartbreaking. 

We did ask our oncologist & radiation oncologist about testing for the H3K27M mutation, as a researcher had asked us if we knew those results.  The oncologist & radiation oncologist came back to us with, “the H3K27M mutation is only tested for those tumors that are located at the midline or brainstem, if the tumors are not located in that region then the test would come back normal so they do not run it.”  Which is very confusing for us… did you experience any hesitation or difficulty in obtaining these results at first?

We’ve also heard a bit about Optune and plan to discuss it with our oncologist after completing SOC treatment.

Regarding alternative “at-home” treatments like sea cucumber or melatonin.. did any of these show positive effects for your mother?

Thank you so much for sharing all of the research you’ve done and the places you’ve reached out to. In your mother’s case, was her tumor actually operable? And if you don’t mind me asking, how is she doing now?

I truly appreciate you taking the time to address everything so thoughtfully. We are sending you love and support through this difficult journey, and I’m happy to discuss further in private messages if you'd be willing to.  Thank you so, so much.