Here is a little bit of good news for once. 😁 I just finished up with my MRI, and everything looks perfectly fine—it’s been three whole years without any recurrence. 🙂 My neurosurgeon mentioned that if things stay this way for another two years, I can finally scale back to seeing him once a year instead of twice.
While I was at the imaging center on Monday, I ended up chatting with a woman who was there to pick up her results. I was waiting for my own appointment, and she told me her husband has been battling an astrocytoma for ten years now. 🙂 We actually ran into each other again today at the neurosurgeon's office, though I didn't really get a chance to catch up with her properly. 😢
Right now, my main issue is some minor secondary stuff; specifically, I have a small perforation in my eardrum that's acting up. 😢
So, I’m right there with you all. 😢 I am also a proud owner of a perforated eardrum. A doctor over at Mayo Clinic sent me off to the Vineyard, and now I’m just sitting here waiting for my specialist appointment. To be honest, it’s impossible to say for certain what caused the perforation. Personally, I’m inclined to believe it was caused by the radiation therapy from my brain tumor treatment, which was followed by a gradual loss of hearing. The hole is in my left eardrum. God knows how many people have struggled trying to clean out that ear; the cerumen was practically like chewing gum. Right toward the end of the cleaning process, they actually sent me off to schedule a CT scan because they spotted something suspicious. By then, the ear was almost clear (though they told me they couldn't get it any cleaner because my auditory canals are incredibly narrow), and that's when they confirmed the perforation. They also gave me the standard warning to make sure no water gets inside the ear. And whenever I blow my nose, there's this hissing sound. Reading through everyone's experiences here, nobody ever mentioned anything about avoiding drafts or wind. My sense of balance was already shot from the tumor treatments, and now, thanks to this, things regarding my equilibrium are even worse. 😢 My exam isn't for another three weeks.
Melissa James70 said:In the end, they might successfully power through their little virus, but they end up spreading it to at least five other people in the process. Or even worse—they push themselves too hard, collapse, and instead of a couple of days off, they’re stuck in bed for two weeks with pneumonia, having infected God knows how many people along the way. Their family, their roommates, even the random commuters on the subway.
I am firmly in favor of raising awareness so people stop showing up to work sick. Don't leave the house unless you absolutely have to, because there are people around you who will catch whatever you have—including those who are particularly vulnerable, like children, the elderly, or people with chronic health conditions. Ultimately, the cost (both personally and financially!) is much higher than if they had just been smart enough to stay home.
I actually know more people who sniffle their way through the workday than I do people who bother to take vacation days or call in sick. 😢 When I was younger, it didn't bother me as much since I could usually dodge every virus all year long. Right now, though, I'm out on medical leave, and it looks like it'll be two weeks, thanks to some bug I likely picked up at the office. 🙂
I have a friend I used to work with who lives alone; she has no one else around, and I suppose she just gets bored staying home, so she drags herself to work even when she's clearly ill. Naturally, a huge chunk of the staff catches her virus, and yet, hardly anyone ever takes time off. It’s true that some people genuinely enjoy the feeling of being "indispensable."☕
wanderingcobra76 said:Don't sweat it—the warnings you heard about radiation were specifically regarding radiotherapy. The radiation levels in a CIA scan are on a completely different scale; in your case, it’s negligible. Honestly, the benefits far outweigh any potential risks.
If that MRI from May was accurate, there really isn't a need to pay for a whole new scan just yet. However, you should definitely go ahead with the CIA scan because it provides a much clearer view of the temporal bones.
Thanks for clearing that up. Now I just have to wait until my appointment actually rolls around. I have to admit, I'm not even stressing about it. I mean, what could possibly be worse than a brain tumor? 🤷
wanderingcobra76 said:Do you mind if I weigh in here?
When dealing with ear issues, the standard protocol should always be to start with a CT scan of the temporal bones. A CT offers far superior spatial resolution, particularly when it comes to visualizing bone structures, making it undeniably better for analyzing the temporal bones and the vestibulocochlear apparatus.
I would strongly advise you to get that done first. You should only move on to an MRI if the CT comes back negative and you need to check the brain or brainstem, or if the CT reveals some pathology that requires further clarification. In that scenario, they’ll likely refer you to a hospital appointment for the MRI anyway.
To be honest, the radiation part scares me. I’ve actually suffered some permanent consequences from previous brain radiation, and I really don't want to add more damage to the mix. 😢 Thanks for explaining everything. 🙂 My CT is scheduled for late August, so we'll just have to see how it goes. Actually, back in May, I had my routine checkup and the MRI showed no tumors—I must have scared it off pretty good when it didn't show up! 😍So, I had relatively recent imaging, went to a private clinic, and asked them to check if there was anything going on in my ear. The radiologist said she didn't see anything unusual on the scans, but noted that those images were taken before my ear was cleaned out. My ear was completely blocked by this sticky mass, and they barely managed to clear it; once they finally did, it turned out there actually *is* something in there. It sounds like the doctor also mentioned that a CT would be the better way to go. Thanks again; at this point, all I can do is wait for my appointment. 🙄
Angela Wright, I’d love to get your take on this. My brain was irradiated almost exactly four years ago. If my memory serves me right, one of those doctors mentioned I should avoid any radiation exposure for at least five years following the procedure. Right now, I'm dealing with some ear issues, and my ENT is referring me for a CT scan of both ears. I actually asked if he could just order an MRI instead, but he told me their standard practice is to reserve MRIs for inpatient cases only. So, now I'm seriously considering just paying out of pocket for the MRI.🤷 It shouldn't cost more than a brain MRI with spectroscopy, and honestly, after everything I've spent over the last four years—thousands upon thousands of dollars—this extra expense feels pretty negligible. 🙄
The issue is specifically with my left ear; I can barely hear anything out of it (I already use a hearing aid in my right ear). After nearly a month of endless cleaning procedures, the doctor concluded there is "something" stuck in there. 🙂 Keep in mind, the tumor was located on that same left side of my head.
Angela Wright said:You truly made my day!🙂 You really are an incredible woman; I truly tip my hat to you!😍
😍 That’s how it looks on the surface, but that isn't exactly the reality of it. I mean, yes, I have decided to leave all that bitterness behind—and I truly hope it stays that way forever—but I have to be honest: trying to reintegrate into normal life is painful. It is frustrating, and honestly, it’s filled with this constant, gnawing fear of a relapse because of everything that happened. 🙂 It’s been weighing on me for three and a half years now. I know, I know—I shouldn't dwell on it, and logically, there's no point in ruminating. But sometimes, that subconscious stream of thought just hits you with such intensity that it's almost impossible to ignore. 😠 That is precisely why I steer clear of discussions like this.
fadedtrucker5 said:I
It’s the exact same diagnosis. I just managed to get through my first recurrence, and I am praying that I can maintain this stretch without facing the same thing again for a while. Honestly, I had such a beautiful year of life during that gap between tumors, and I am holding onto the hope that I can extend that peace just a little longer so I can keep fighting. Thank you so much for reaching out... Sending a huge kiss to everyone here and thank you all for standing by me. I’ll likely be heading home this Friday, and I fully intend to meet every single morning with a smile on my face, just as I have been doing up until now! 🙂
🙂 What can I even say to you? Just hang in there. Don't let them get to you. Every single day is worth fighting for. I find myself saying quite often now that this tumor was actually a blessing in disguise. It’s been a harsh wake-up call, certainly, but it finally forced me to get my act together. Some things in my life have finally moved from being total nonsense to actually making sense, or rather, I've finally stopped being so clueless and started using my head. 😍
Greetings to everyone! I don't usually follow this specific thread because I find "heavy" topics a bit overwhelming to process, but amidst this endless sea of bad news, I decided to share a little bit of my own good news. 🙂 After being on medical leave for 3 years, 7 months, and 6 days, I have finally returned to work with an NG tube (for those who don't recall my history, it was a malignant brain tumor—one recurrence, and a second one that was caught right at the start). In terms of my capabilities, I am certainly not the person I used to be; my optic nerve was damaged and I’ve partially lost my hearing, but I refuse to give up just yet. I'm simply taking things one day at a time and pushing through as far as I can. 🙂The specialists here in the States have told me that, all things considered, I've done remarkably well. ☕ For me, the most important thing is that I am working and that I am not dependent on anyone else, whether physically or financially. 🙂 I wish you all—and your loved ones—nothing but success in your fight against the darkness.🙂
Angela Wright said:You never even had them; any random amateur can interpret these scans😳. I guarantee you that if you send old images to someone else for interpretation, you’ll get a completely different result. I still vividly remember a presentation at an oncology conference where a neurosurgeon warned oncologists that radiation-induced tissue damage often mimics tumor lesions, leading people to undergo unnecessary treatments.
In any case, this is wonderful news. Enjoy your day. 🙂😍
My results weren't interpreted by some "random amateur"🙂 It's true—they can absolutely mess up and misread a tumor as scar tissue, which is exactly what happened to me during my first recurrence at the Mayo Clinic. These last two MRIs were done in Chicago, and since the neurosurgeon who operated on me basically runs the family business there, I am certain there is no mistake. By the way, just as a side note, they offer a discount on MRIs with spectroscopy; I only paid about two thousand dollars. 🙂
What's actually bothering me right now—aside from the fact that I have to buy all new clothes at least two sizes smaller than what I currently wear 😍—is the panic attacks and my vision. The right side of my right eye looks distorted. In the last eight days, I've ended up in the ER twice due to temporary vision loss. The worst part is that they honestly don't know why it's happening; they assume it's nerve damage (since the tumor was near the optic center), and they tell me there isn't a single test available that could pinpoint the exact cause. 😢
Folks, I have to admit, I was a skeptic, but here we are. 😉 If you don't recall, back in May, I underwent a brain MRI, and the results suggested a recurrence was imminent. Because of that, they prescribed chemotherapy. Well, this past Friday, I went in for a follow-up scan, and my metabolite levels had stabilized—it’s all there in black and white: there is no sign of a recurrence. Honestly, people, I am at a total loss for words trying to describe the pure euphoria I felt when they told me those malignant cells had retreated. 🙂🙂
Kate James38 said:I realize it’s an enormous expense, but I’m just grasping at straws here... The real issue is trying to distinguish what actually works from what doesn't... In one hospital stay, they were considered for... and they weren't even considered in three others... I am truly torn on which path to take... My current oncologist won't even entertain the idea of T. Now I'm looking through some international studies that were recommended to me, and apparently, for this specific diagnosis, Temodar should be administered here in the States as well... (though neither I nor the friend who sent me these studies—who happens to be a molecular biologist and reviewed the cytogenetic results—claimed to be an expert in this particular field).... 😢 I honestly don't know... what should I do?
How do you mean he didn't help you? / 😢
It didn't help because I'm right on the verge of a second recurrence.
Kate James38 said:SC—if you don't mind me asking, what exactly was your diagnosis? So they recommended Temodar to you? We had a similar experience, but since we live down South, they won't even entertain the idea of using it here ( I wouldn't hesitate to pay for it myself, honestly ). Also, I’m a bit confused regarding the treatment plan—was it a combination of radiation and chemo? How does that work exactly? Please clarify if you don't mind. - Around here, they told us it would be one followed by the other...
It definitely isn't cheap. For me, this whole ordeal cost just under fifteen thousand dollars... and let me be blunt—it didn't help at all. 😢
fadedtrucker5 said:I’m not comfortable posting a specific diagnosis on a public forum, but my oncologist did suggest Temozol... Radiation therapy and Temozol chemo really need to be done in tandem; otherwise, the whole thing feels pointless. Basically, you take the Temozol on an empty stomach, and then you get the radiation done within an hour of that. You usually get a corticosteroid injection during the process too, though that's secondary to what we're discussing. In any case, I don't see the logic in doing radiation first and then starting Temozol later, but hey, I’m certainly no doctor, let alone an oncologist.. Regardless, my advice is to move the treatment process over to Washington, D.C., as soon as possible and just be a constant nuisance until they finally admit you. From what I can tell, being incredibly persistent is the only way to actually receive decent healthcare in this miserable country of ours.. 👎 To give you some perspective, while I was undergoing radiation at Mayo Clinic, there were easily twenty other people sitting in the waiting room every single day, and I was the only one from the D.C. area. There were people there from all over the United States, even from major cities like Seattle and San Diego.. What I'm trying to say is, the entire country seems to converge on Washington, D.C., where there are only two head radiation machines available—one at Mayo Clinic and the other at the Institute.. It's absolutely disgraceful..
That's interesting. ☕ Where are you getting that information? In my experience, I didn't receive Temozol and radiation as a combined treatment plan, because I underwent radiation a full year after the tumor was first discovered, and I had the "pleasure" of taking the medication only when the first recurrence happened. If I recall correctly, my oncologist told me that once I finished that initial round of radiation, I wasn't allowed to undergo it again for another five years.
Angela Wright said:We actually discussed this ages ago back on the association's private board, though you seem to have let it slip your mind. I think the crux of the issue was that back then, you weren't fully grasping the gravity of your diagnosis, and things took a turn for the worse while you were still hesitating to seek out professional help. I am truly sorry if my words came across as harsh; that was never my intention. I honestly believed—just as wanderingcobra76 did—that you had already become all too acquainted with your own worst enemy. Hang in there, stay brave, and keep fighting for that victory.
Yeah, forgetfulness? That’s definitely my specialty. 😢 But I do remember our conversation about this. It took me a long time to really face the reality of what I'm dealing with, and according to my psychiatrist, I still haven't truly come to terms with this illness.
The mere fact that a relapse is looming is absolutely crushing me mentally. 😢 I try my hardest to push away the dark thoughts by staying busy from sunrise to sunset, which is made much easier by the dog I adopted nine months ago; she keeps me occupied so I don't spiral into thinking about what's coming next. I try to force myself to just take it one day at a time and make the most of every moment, rather than obsessing over some distant, uncertain future filled with "what ifs."
Everything negative surrounding my diagnosis terrifies me, so I find myself avoiding any new information. Looking around here, it seems like almost everyone is searching for answers on behalf of a family member. Unfortunately, I am facing this entirely alone, and quite frankly, I have no desire to look up whether the statistics say I have one year left or five. 😲
wanderingcobra76 said:I’m sorry, I really didn't mean anything by it... you know as well as I do that dealing with a malignant brain tumor isn't quite the same thing as having a simple cyst on your kidney. My starting point was simply assuming that if someone is online trying to decipher their own MR spectroscopy results, they've likely already spent a significant amount of time researching anaplastic ganglioglioma.🤷
I wasn't implying you had bad intentions. 😉 I've just been doing some scattered searching online regarding the gap between discovering a tumor and a recurrence—that's pretty much the extent of my research into my own situation. I'm not on the internet all that much because I struggle with reading, writing, and short-term memory, so I usually just end up making a mess of things.🙄
Angela Wright said:I think your CCNU was in capsule form.
I actually went back and rewatched my records. My first round of chemo was indeed CCNU, and then something else—honestly, the details are a bit fuzzy. It’s strange. 😁 It was six cycles, administered every fifth Friday, and it didn't drag on forever. As for capsules? If I recall correctly, they were... some kind of brownish color. And frankly, I had a real issue with the Pfizer. My dose was 375mg, which meant four capsules, but there were two cycles where the pharmacy didn't have the 250mg ones in stock, so I ended up taking nine capsules in the morning on an empty stomach. 🤮
Angela Wright said:Are you sure? I thought I was the one who originally knocked the wind out of you.🙂 Look, once it's malignant, the diagnosis is inherently grim. But that's precisely why therapy exists. Everything else in life comes without any guarantees anyway. Now, you'll first find out whether it is or isn't. If it is, you'll fight again and find a new path toward remission.
In these past three years, I haven't once considered my diagnosis to be "grim." 🙄 I haven't given the severity of my condition a second thought, even though a brain tumor can technically be viewed as a heavy diagnosis. Yet, here you are, trying to lead me down those paths by calling it grim. 🙂
Angela Wright said:Look, even if things look grim right now, you absolutely have to ask about the Pfizer again. You had a response the first time around, so there's a chance they could run the treatment again. Besides, you were paying for it then, too. If I recall correctly, you already dealt with a recurrence while you were still undergoing the initial round of treatment based on what they’ve been telling you. Hang in there. This doesn't necessarily mean the end of the road.
Listen, honey, 😉 it just occurred to me 🤔—well, my brain is currently trying to organize all this scattered information so it can actually form a coherent thought. 😁 The paperwork specifically mentions chemo, but during our actual conversation, we were talking about capsules, 🙄, I remember it clearly because I mentioned how I can't even stand the sight of capsules anymore, let alone swallow them... but yeah, you know how it goes. 🙄
wanderingcobra76 said:I’m sorry if I had to bring you down 😢, but looking at those spectroscopy results, it isn't actually convincing that there's a recurrence—especially considering that area has already undergone surgery, revision surgery, and radiation...—and I'm not saying this just to comfort you, but because it's genuinely true (MR spectroscopy is useful, but the results are often far from specific enough).
Unfortunately, you know as well as I do that your diagnosis is pretty grim, but that doesn't mean it's unbeatable. Keep your chin up and stay strong 🙂
Oh, please. No one has actually had the courtesy to tell me my diagnosis was "grim" yet. 🙄 I am not sitting here trembling at the possibility of malignant cells reappearing; what I am doing is being furious with myself because I let my diet slide completely over the last few months. I couldn't control myself, so honestly, I can't even act surprised that my immune system has taken such a hit. 😠
wanderingcobra76 said:That choline level isn't the same thing as the actual concentration of choline measured within specific brain regions—I laid out that distinction in my previous post. Rest assured, these scans aren't just glanced at; they are typically reviewed by several radiologists specializing in this field at a major medical center who reach a consensus before finalizing the report. Furthermore, the conclusion is derived from spectroscopic measurements, which aren't just your standard "pictures," but rather a series of color-coded intensity maps combined with a multitude of data curves.
Thank you for such a thorough explanation; everything is perfectly clear now. 😢 Oh, for heaven's sake, here we go again. 🙂
We are dealing with an anaplastic ganglioglioma. The tumor was completely resected three years ago. Then, nine months later, a recurrence occurred, which was also fully removed. Since finishing Temozolomide chemotherapy back in November 2009, I have been in recovery. Things were steadily improving, so why this sudden setback?
I should also mention that I am sent in for follow-up MRI scans every six months.