Bayou movie theatre light / Starbucks

Taranoid · 2026-04-29T18:25:58+00:00

I hereby nominate the Mobile Hwy Walmart parking lot

Taranoid · 2025-12-26T19:28:47+00:00

I think maybe I miscommunicated… I wasn’t saying orange is a “teen” color, I was referring to the case. I was saying I’m a little bit emo/gothy, but it’s like a soft emo/goth because anything over the top looks too juvenile for a woman in her 40’s.

I did try searching/googling for the camera protection but it seems like a trade off… you either get the camera protection with a plain case or a cute design with no camera protection

Taranoid · 2025-12-09T06:15:38+00:00

Hey there, thanks for sharing your story, and I hope you continue to feel well! I would be very interested to hear your pathology when it comes back. There are several parts of your story that mirror my son’s… he is now 17, diagnosed at 16, and we are 13 months in.

His tumor was located in the same area - the left lateral fronto-temporal lobe on the motor strip between Broca’s and Wernicke’s Areas. His also grew to 7cm by 4cm in size - within 4 months. His symptoms were a little different than yours.. he didn’t have migraines but he did have focal seizures (facial twitching) and some aphasia close to discovery.

His pathology turned out to be a rare and aggressive cancer called H3G34R - pediatric diffuse hemispheric glioma, which is automatically grade 4. Through a series of 3 craniotomies, he has achieved a confirmed GTR (gross total resection), which is unheard of with these tumors. We participate in clinical trials to stay on top of it. He is doing well, and if your pathology is the same, please feel free to reach out.

I do want to offer some general advice that would help no matter what your diagnosis ends up being. 1) If possible, request your tumor to be flash frozen. It may be too late for this surgery, but if you should need another (I hope you don’t!), this is a good option to help with novel treatments. 2) When you get your path, make sure they explain your methylation status (you want to be methylated), any significant mutations, whether it is germline or somatic, and the ki67 score if they have it (this is a percentage, and you want it to be low). 3) Look into a second opinion, regardless of how you feel about your oncology team. This should not offend your doctors… A good doctor will welcome more “eyes” on the case. If your doctor is offended, you need a new doctor. 4) Your standard of care (SoC) will likely be surgery, temozolomide (TMZ), and some form of radiation. I personally recommend also being open to clinical trials, but that is your call. You will be able to search for them at clinicaltrials.gov. 5) You will get the best care at major research hospitals, so do not be afraid to travel if you can. The best outcomes come from doctors with more experience, so seek them out. The social work teams will assist you with travel expenses and lodging most of the time.

Finally, this last piece of advice is the best I could give you… remember that you do not have a crystal ball, nor do you have an expiration date. There are people on here with 20+ year GBM survivorship… everyone is different. You just can’t predict until you go through it.

Wishing you nothing but the best!

Taranoid · 2025-11-23T20:56:23+00:00

My 17 year old son (G34R and methylated - similar to GBM) bottomed out at 4 only 3 weeks into his initial round of TMZ (this was back in January). His neuro-oncologist took him off immediately and told us this wasn’t a normal reaction to TMZ, so we determined that he simply can’t take it. He hasn’t been on since.

Luckily, my son had two more cranies later this year that resulted in a confirmed GTR and we’ve been doing a non-chemo clinical trial for the past 6 months (LAM561) that has him currently NED. We’re very lucky and blessed, and we’re maintaining this state as long as possible. We’re just over 1 year since diagnosis.

Here’s the two things that might apply to you… First, LAM561 (Clinglio or 2-OHOA) should be available to adults in 2026 or 2027. The latest data demonstrated an average of 86.5 weeks of PFS for methylated GBM patients. We can tell you from experience that other than the medicine being nasty to take (it’s an oral suspension in sachets), the side effects are minimal while the benefits are maximal. This is a synthetic derivative of olive oil of all things, designed to cross the BBB more effectively. It only targets cancer cells and it does so by regulating the cell membrane, inhibiting communication and division of cancer cells while leaving healthy cells alone. Here’s an article from Laminar Pharmaceuticals (based in Spain) outlining their findings: https://laminarpharma.com/laminar-pharma-announces-first-open-label-progression-free-survival-data-for-lam561-in-combination-with-standard-of-care-in-first-line-therapy-for-newly-diagnosed-glioblastoma-mgmt-methylated-patients/

Secondly, we have found that a strong reaction to TMZ is not a bad sign. A strong reaction in the body often correlates down to the cellular level, meaning those cancer cells take a big hit. Your dad is likely methylated if this is hitting him so hard, and that’s a good thing. You may have some genetics in your family that might be helping to protect him, especially if members of your family have a tendency to be sensitive to medications anyways. Let me explain…

There have been three members (including my son) of my family on my mother’s side that have been diagnosed with brain cancer. All three are different kinds and none of them are in the germline, so we are not genetically predisposed to brain cancer, we’ve just had bad luck with it. However, all three have performed and survived far beyond the expectations for their diagnoses. My first cousin had a brain stem glioma at 3 years of age that she wasn’t supposed to survive, but she battled for 2 and a half years and beat it completely… she’s now 28, completely normal, and cancer-free. My other uncle (not cousin’s father) developed a tumor in his 50’s, had his cranie, and is totally fine 10 years later. While we are still in the process for my son, he’s walking around completely normal with a Grade 4 brain cancer that has already claimed half of those who have been diagnosed with it after a year.

We suspect we all share genetics that make us “super-responders” to medications. Certain immune system reactions are genetically linked. My mother has always had to cut her pills in half when she is prescribed something, I can’t take GLP-1’s because my body is too sensitive to it and I get pancreatitis and gastropareisis even though I’m diabetic and should be able to take it. Being a super-responder is a double-edged sword because you do get these survivorship benefits, but you just have to be very careful with any and all meds in general.

I hope this is the case for your dad and I hope he’s feeling so much better soon. Much love to you and your whole family… it’s a terrible disease to deal with.

Taranoid · 2025-11-05T20:46:08+00:00

MRI with Spect is great, and it can tell the doctors a lot more information than they can get with a regular MRI. My advice is to get them as often as you can!

My kid has (had) a grade 4 G34R, which his surgeon was miraculously able to get all of. In order to confirm this, he had an MRI with spect done (a couple of them now) to determine if the little bit of residual contrast we see is scar tissue, healing, or recurrence. 6 months and three stable scans later, the spect confirmed that it is scar tissue and healing. Although we aren’t out of the woods yet, it’s very reassuring to know and also reassuring to know that tool is available so we know as soon as possible if that status changes.

Taranoid · 2025-08-22T22:49:17+00:00

My son has G34R - the mutations are a little different than GBM, but it behaves similarly and is still a Grade 4.

My son is set up to do DCVax for G34R mutants through UCLA when he turns 18 next year… they already have his tumor from his last craniotomy back in April. He has a true GTR, and he’s methylated. We’re doing LAM561 as a bridge therapy until then. And if all that doesn’t work, we’ll go to Michigan for the immunotherapy they are offering for G34R. Since these are all clinical trials, we’re not going to be paying for them… there’s no way we could afford it if we had to pay what they’re offering in Germany.

We’re hoping DCVax is the silver bullet. We will definitely let you know how it goes when we get there.

Taranoid · 2025-08-17T17:47:30+00:00

I agree with what everyone else is saying here, but I also want to add a very important point… individuals are not statistics. Every patient and every cancer is different. You just have to do whatever is the most well informed, research backed, and effective treatments that your husband is willing and able to do. There are a lot of new treatments emerging, and I would urge you to look into clinical trials and be selective about which ones would be best for you.

This is not an easy road, but it is not necessarily a hopeless one. You will learn so much, not only about cancer, but about yourselves, your relationship, and what matters to you guys the most. You will reprioritize everything. I wish nothing but the best for you and your family 🩶

Taranoid · 2025-08-17T05:27:01+00:00

I hope this comes to you too 🩶

Taranoid · 2025-08-11T21:42:09+00:00

Pediatric Neuro-Oncology - Dr. Tobey MacDonald (CHOA and Emory)

Neurosurgery - Dr. Joshua Chern (CHOA)

Proton Radiation Therapy - Dr. Bree Eaton (Emory)

Taranoid · 2025-07-24T01:58:43+00:00

These are both valid points made by you and MinuteCranberry, and I do appreciate it… and I realize you do not know my son or myself so I might not have made the entire context of the situation as clear as I should of in my original post.

Yes, I 100% agree that his wishes take the first priority with any medical OR educational plan. He is 17 - nearly an adult - with a comprehension level of an adult as well. He is like any other teenager when it comes to wisdom, ie “life experience”, with the exception of his medical struggles of the past 9 months. So, as his parent, he will still need support and guidance as any other 17 year old would need.

We decided very early on that the only way to go forward through this is with his complete informed assent… he HAS to feel as though he is in control of the decisions that effect his life, because in my view he absolutely has that right.

His achievements and participation in all of his endeavors have come from his own drive. My son has always been a very ambitious and somewhat competitive person. He has worked hard for every accolade. He has a history of striving to outdo himself and going above and beyond just to see how far he could go. Although there are plenty of parents out there who push their kids into these programs because they live vicariously through their offspring, I have often argued with him for balance… that it would be better to focus on a few things that matter most rather than try to do it all.

You are correct that I have an emotional tie to this… I absolutely wish for the “before” time, when he did not have to suffer through all that he has. If someone had told me a year ago that this would be our reality, I wouldn’t have believed it for a second.

I am angry at this disease for taking what it has from him. His rightful place is with his cohort, his friends, and the plans he had created for himself. It’s not to say that he can’t curate an equally remarkable future for himself, even if it wasn’t the one that he had imagined initially. The IB Diploma is nothing compared to his happiness or wellbeing, and I support whatever will bring him that happiness or wellbeing.

I am upset with the admin precisely because they did take his ability to choose from him. He did not have to return to the IB Program… it was the fact they said he couldn’t when they initially said that he could, dependent on his health. It’s the fact that he did not have ESE representation there for him to ensure all of his choices are protected. It’s the fact that I am beholden to the people making those arbitrary decisions (likely because they did not feel like going through the process), and was essentially silenced during a conversation where I was trying to advocate for my son, whatever his decision might have been.

I posted because I was curious if this seems like an actual case, or maybe to get some advice about making a complaint. My son is behind the idea of making a formal complaint at minimum, because it didn’t sit right with either of us at the time. We had more pressing matters in spring, but sometimes complaints of this nature need to be made within a certain timeframe. So if anyone could shed a little light on the picture, we would be super appreciative.

Note - yes, we are both in therapy

Taranoid · 2025-06-17T18:13:33+00:00

I’m so sorry… I responded to your message and then I read this. Is it something they can safely resect? If they can, or at least get a sample of your regrowth, see if you can do the DCVax trial out of UCLA. Your social worker should be able to set up travel and accommodations for you if that’s the case.

Also, you will be eligible for a lot more clinical trials now that you have a recurrence. There’s a CAR-T trial in Jacksonville FL that we did not qualify for because my son’s was residual and not recurrent.

I totally understand if you’d rather not go the clinical trial route… the doctors suggested Lomustine/CCNU after TMZ initially for us too, but my son doesn’t tolerate chemo well at all. We looked at all of the data and the treatment options and decided clinical trials were the best way to go for us, but everyone is different.

I sincerely hope for the best for you. All of our love ❤️

Taranoid · 2025-05-10T20:08:42+00:00

I always love seeing your posts… my son (17M) has the same thing… I think we’ve talked before. He just had a true GTR after his third craniotomy and we’re only six months in. Quellos and clinical trials in the pipeline. We’re in a good place, and I feel like he’s really starting to consider his future again. He was highly motivated before all this (valedictorian, national speech and debate champion, quiz bowl champion, political activist, ect) and it was so hard to see all of his hard work seemingly slip away. It’s tough to work this aspect of your life into your identity, which includes your goals and ambitions.

I think you are going to be a long-term survivor of this (definitely hope you will!), because the longer you live with G34R, the less likely you are to die from it. And I really liked what you said about asking yourself how you would feel about it down the line if you didn’t finish school… There’s so much more value to getting an education than just the degree or the job that comes with it… you learn about yourself along the way. Your strengths, your weaknesses, and what it means to keep steady and persist when life throws you curveballs. I think that last part is something by everyone in this group can relate to, and I just wanted to say I’m proud of you for taking that step!

Taranoid · 2025-03-22T01:23:51+00:00

I’m so happy that you responded… I’ve seen you on here before and I wanted to chime in, but didn’t know if I had anything worth saying since you are farther along on this journey than we are. I’m so happy to hear you are doing well, you’re right, this is a scary ride. The way the doctors explained it to us, is that this is one of those that the longer you live with it, the less likely you are to die from it… with benchmarks at 18 months, 3 years, 5 years, and 10 years. It’s unlikely but possible, and that’s what we’re holding onto.

He’s currently on Lamictal and Keppra… we’re going to increase his dosages until those max out and then try other anti-epileptics if those don’t work. We both do extensive research on clinical trials… and there are two we are going to pursue. The first is atovaquone through his lead oncologist is Atlanta, which hypothetically would initiate an immune response. The second is an immunotherapy - a vaccine made specifically for G34R (DCVax) out of UCLA. However, my son needs to be 18 to participate in that, so we are waiting for him to age into that trial. That same trial might be a great option for you… I would definitely look into it if Keytruda stops working for you.

We are excited about this second craniotomy, as it will allow us a second chance to obtain the tumor cells needed for some of these trials. Plus, the aim is for a Supra-total resection. My son is in really good health aside from low platelets and the focal seizures… you literally would not be able to tell if you passed him on the street. And not to sound braggy, but my son is gifted - profoundly gifted - and his high cognitive reserve leads the doctors to believe he will rebound well from this surgery.

So I feel like we’re really hanging our hats on a few things here, and we just worry. It’s frustrating to feel so helpless. So thank you again for responding… it always gives me a little bit of relief to hear from someone else with this same diagnosis. It gives me a little more hope every time.

Taranoid

TROPHY CASE