Support resources for families dealing with cancer and other serious illnesses

Angela Wright said:Look at the big picture. I'm worried it won't work.

Thanks!
That’s what I was thinking too. He looks okay, but I don't have the actual labs because my mother-in-law keeps them under wraps. He claims his blood vessels and everything else look fine, and the CT scan shows where the stroke happened even though they didn't find a clot. He's already dealing with heart disease and high blood pressure, so who knows how he'll handle chemo?

feralridge3 said:Should I be worried? 🤔

The MRI looks okay—I've already seen the neurosurgeon, the neurologist, and today an oncologist who confirmed there aren't any signs the tumor is coming back, but...

There are elevated choline levels compared to NAA on the spectroscopy. I’m recommending a follow-up brain MRI with spectroscopy. If the spectroscopic findings come back positive, I would recommend chemotherapy following the VCR/CCNU protocol.

😕

I don't see what choline has to do with the brain. 😕

Angela Wright said:I honestly fail to see the connection between choline and brain function 😕
.

🤷
I've been doing some digging online lately. My long-term memory seems to be improving, but my short-term recall is still a mess—so, forgive me if I’ve misconnected the dots here; I can barely remember where I read half this stuff. However, based on what I've gathered, I'm starting to suspect that elevated choline levels might actually suppress the immune system, which could potentially trigger a relapse. 🤷
To me, the bigger mystery is how anyone could possibly reach such a conclusion in the first place. 😕 No one has even reviewed the scans, and none of my previous doctors have offered any insight or documentation; the only thing my neurologist has done is schedule an EEG for three months from now.
😕

feralridge3 said:should I be worried? 🤔

The MRI results look fine—she’s already seen the neurosurgeon, the neurologist, and most recently an oncologist who confirmed there are no signs of tumor recurrence—but...

spectroscopy shows elevated choline levels relative to NAA. They’re requesting a follow-up brain MRI with spectroscopy. If the spectroscopic findings come back positive, they would recommend chemotherapy following a VCR/CCNU regimen.

😕

The real challenge when performing MRIs on patients who have undergone brain tumor surgery—especially if that area was subsequently treated with radiation—is distinguishing between post-operative changes, radiation-induced effects, and an actual recurrence (a new tumor forming in the same spot) or residual tumor tissue.
When things are unclear, doctors turn to MR spectroscopy. It isn't just a standard scan; instead, it focuses on a specific target area—like a suspicious zone—to measure certain metabolites and compare them against healthy tissue.
In fact, MR spectroscopy has evolved specifically to evaluate these types of brain changes. There are several standard metabolites measured, and while their concentrations matter, the ratios between them are often even more critical in determining whether we are looking at healthy tissue or tumor cells.

One such metabolite is NAA, which serves as a marker for healthy neurons. A drop in NAA can signal neuron loss due to a tumor, though it can also decrease as a result of radiation therapy.
Choline, on the other hand, is a marker for cell membranes. Its concentration spikes when cells are multiplying rapidly—as is the case with fast-growing tumors—so an increase often points toward a recurrence.
Another important metabolite typically measured is creatine, which acts as an indicator of cellular metabolism levels.
There are others, of course, but they are generally less significant in tumor cases.
Ultimately, specialists examine the ratios of these various concentrations to try and draw a meaningful conclusion.

To make matters more complicated—and it certainly isn't simple—this type of imaging is technically demanding and can be influenced by many different variables. Furthermore, there aren't "absolute" values to use as a universal benchmark, so even after spectroscopy, the results can sometimes remain ambiguous.

In this particular case, I suspect the findings unfortunately point toward a probable recurrence—though, I should note, the rise in choline and the dip in NAA aren't quite extreme enough yet to be stated with absolute certainty.
That is likely why they are requesting a repeat brain MRI and spectroscopy after a set period; if the choline continues to climb, it would confirm a recurrence, at which point the VCR/CCNU chemotherapy protocol would be initiated.

Angela Wright said:I’m having a bit of trouble following—how exactly does that connect to what we were discussing? I wonder if anyone else has been following the recent developments regarding Colin? It seems like quite a situation—though, perhaps I am being too dramatic—but one does have to ask: where does this leave everything moving forward? With some common sense—if we can call it that? 😕

feralridge3 said:🤷
I’ve been doing some digging online lately—and while my long-term memory seems to be improving, my short-term recall is still a bit hit-or-miss. Honestly, I sometimes lose my train of thought mid-sentence and can't quite remember where I even saw certain information! However, based on everything I've managed to gather, I’ve started wondering if increased choline intake might actually suppress the immune system—which, in turn, could potentially trigger a relapse? What do you all think? 🤷
I find myself quite puzzled—how on earth did one arrive at such a conclusion? 😕 The images haven't even been reviewed yet—and honestly, none of the previous specialists have offered a single word of insight or written a solitary note! At this point, all I've been given is for my neurologist to send me in for an EEG in three months. Is anyone else dealing with this kind of standstill?
😕

That particular type of choline isn't actually related to the specific concentration of choline measured within the brain at its exact target site—if you catch my drift—and I really think the explanation provided in the previous post clarifies that distinction quite nicely. Wouldn't you agree?
There is really no need for concern—the scans have been thoroughly reviewed. Typically, at an institution like the Mayo Clinic, several specialized radiologists examine the data to ensure they are all in agreement before finalizing the report. It’s important to remember that the final conclusion isn't just based on "standard" images; rather, it relies heavily on spectroscopic measurements—which, if you're wondering, aren't your typical X-rays, but rather a series of color-coded intensity maps paired with a complex array of curves.

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.

feralridge3 said:Thanks for such a detailed response—everything is much clearer now. 😢
not again. 🙂

The diagnosis is an anaplastic ganglioglioma. The tumor was completely removed three years ago—that was the first time. Then, nine months later, there was a recurrence which was also fully excised. Since finishing Temozolomide chemotherapy back in November 2009, I have been in recovery. Things were steadily moving in the right direction... so where does that leave me now?

I forgot to mention—I am sent for follow-up MRIs every six months.

I am so sorry if I had to dampen your spirits 😢, but looking at those spectroscopy results—it isn't actually convincing that a recurrence is present, especially considering that area has undergone surgery, re-operation, and radiation...—and I say this not just to comfort you, but because it is truly the case (while MR spectroscopy is important, its results can often be quite non-specific).

Unfortunately, we both know that the diagnosis is quite daunting, but it is certainly not unbeatable. Keep your chin up and stay strong 🙂

feralridge3 said:Thanks for such a thorough answer; everything is crystal clear now. 😢
Not again. 🙂

We're talking about an anaplastic ganglioglioma. The tumor was completely removed three years ago. Then, nine months later, there was a recurrence, which was also fully excised. Since finishing Pfizer chemo back in November 2009, I've been in recovery. Everything was finally trending upward—so what happens now?

I forgot to mention, they send me in for follow-up MRIs every six months.

Look, even if it feels awkward or heavy, you absolutely have to ask about Pfizer again. You responded to it the first time, so there is a real possibility that repeating the treatment could work. Besides, you managed to cover the costs last time too. From what I recall, you dealt with a recurrence while still undergoing the initial treatment.
Hang in there; this doesn't mean it's over.

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. 😠

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. 🙄

feralridge3 said:Look, honey, 😉
it just clicked for me now 🤔 once all the pieces finally settled in my head at the right moment and formed a coherent thought. 😁
The paperwork mentioned chemo, but during our talk, they were definitely talking about capsules, 🙄, I remember it clearly because I explicitly said I can't even look at capsules anymore, let alone swallow them... so, yeah, you get the idea. 🙄

I'm pretty sure the CCNU comes in capsule form.

feralridge3 said:Geez, nobody told me my diagnosis was supposed to be this ugly. 🙄

Are you sure about that? I honestly thought I was the one who had already broken the news to you.🙂
Listen, if it’s malignant, the diagnosis is always going to be ugly. But that’s why there’s treatment. Everything else in life is basically a gamble anyway. Now you’ll find out if it actually is what we think. If it is, you fight, and you find a new path toward remission.

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. 🙂

feralridge3 said:Oh goodness—it seems nobody thought to mention that my diagnosis wasn't exactly "pleasant" news. 🙄

I am so sorry—I truly didn't mean anything by it... but surely you understand that dealing with a malignant brain tumor is a different world than managing a simple kidney cyst?
I simply operated under the assumption that someone online trying to decipher MR spectroscopy results would have already done quite a bit of digging into anaplastic ganglioglioma.🤷

feralridge3 said:w

For these past three years, I never once looked at my diagnosis and thought of it as something "ugly." 🙄
I haven't given much thought to how heavy this diagnosis actually is—even though a brain tumor is objectively a massive weight to carry—so you bringing it up in such a gross way really caught me off guard. 🙂

We went over this ages ago, specifically back on the association's forum, but it looks like you’ve wiped that from your memory. Your issue was exactly that: in the moment, you weren't truly grasping the gravity of what you were facing, and as things took a turn for the worse, you resisted reaching out for help.
Look, if I made you feel "gross," that wasn't my intention. I honestly believed—just like wanderingcobra76 did—that you had become far too comfortable with your own worst enemy.
Hang in there; stay just as gutsy as you are and keep fighting for that win.

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: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. 😲

My mother passed away yesterday

Kimberly Wright said:my mom passed away yesterday

I'm so sorry. Truly.

Kimberly Wright, please accept my deepest condolences. I truly cannot begin to imagine what you are going through right now. All I can say is, hang in there; stay strong for your mother's sake. Just know that we are all standing right here by your side.

My father was finally discharged today, but they decided against administering his chemotherapy because his white blood cell and hemoglobin counts were off. Could someone please explain what kind of results typically lead to that decision? Once he gets home, I will post the exact numbers, but he isn't back yet and the lab reports are still with him.

Because of his low white blood cell count and anemia, they couldn't proceed with chemotherapy. The doctor told him to come back in a week once he's retested...
I am incredibly anxious right now. Not long ago, when his ulcer ruptured, they had to push his chemo back by two weeks, and honestly, he was a total wreck. I truly feared we were losing him.😲😲He was becoming so disoriented—it was like he wasn't even processing reality—but as soon as he finished that round of chemo, he improved significantly. Now, I’m spiraling again, worrying about what this setback means. This is actually the first time they've turned down his treatment due to his lab results; up until now, everything has been fine, with the exception of his tumor markers. Those have started to climb, too. They were at 5,400, and now they've hit 5,900... it feels like far too much.😲