And good news is good news too.
I haven't had a whole lot to report lately. Things have been pretty quiet and I rather hope they stay that way. I guess that's just how this stage of treatment works; things are either boring or bad. Given the choices, I'd prefer boring. It'd be nice if I could try out one of those new treatments even if only for something to write about.
I did get a call from my neuro-oncologist in Manhattan with a bit of good news. He and his fellow took it upon themselves to go over my MRIs since the end of my radiation treatment, pixel by pixel. They're in agreement that my cancer has not merely been stable, but has not changed in the slightest. They are increasingly of the opinion that the two dots of enhancement that show up on my MRI are actually just scar tissue, which I've got to say would be pretty awesome. So far that doesn't equate to any sort of change in my ongoing treatment, but they say if there hasn't been any change by October we can discuss ending my chemotherapy early. That wouldn't quite be a confirmation that I'm cured, but it's about as close as I can get. I'll take it.
In other news, the good people over at Cancer Forums have offered me a position as a moderator in their Brain Cancer section, and I have accepted. To anyone who hasn't taken a look yet, it's a great community that offers support, advice, networking, and even just a sounding board for all patients of all kinds of cancer, as well as their friends, families and caretakers. The stories told on those boards are honest, sometimes sad, sometimes inspiring, and I am honored for the opportunity to help maintain the level of quality that brought me there in the first place. I've made many friends through my participation in the forum, including regular posters, other moderators, and the occasional individual who has contacted me privately for advice. I like to think that maybe I've helped a few people along the way. It's a great resource and I would recommend it to anyone.
Happy Leap Day, everyone.
Your oncologist is thinking of ending your chemo early - does that mean you will stop taking the temodar after 12 months instead of the 24 that they suggested before? Curious because my husband's tumor has been stable and he has never had enhancement but he wants my husband to stay on it for another year.
ReplyDeleteThat would mean stopping at 12 months, yes, but it's important to remember two things: first that every patient is different, and second that no doctor knows the exact right treatment to prescribe. It could be that your husband's condition is different from mine, or it could be that your NO would want me to stay on the chemo too, were I his patient. So even if my doctors take me off the chemo and I do well without it, that doesn't necessarily mean it would be the right move for your husband.
DeleteI am glad to hear he's stable and certainly there's no harm in discussing future courses of action with his NO. It's ultimately your husband's decision whether to continue chemo or not. A doctor's recommendation is just that: a recommendation. Not that I'd advocate going against your NO's advice.
From what I have been reading, there is no scientific evidence that temodar works after 6 months. Most of the time it is a judgement call on the part of the physician and past experience that person has had with other patients. But I think that principally, scientific evidence and not judgement calls should be the determinant for recommendations. I think that a second and third opinion would be the best next step.
ReplyDeleteYou are correct, there's no scientific evidence. That's not to say there's no scientific data. There simply isn't enough of it for the medical community to reach a consensus one way or another. My doctor told me that before he told me his recommended course of action, and I have already heard four opinions. Three of them were from two of the leading cancer research centers in America, some might say in the world. The fourth has been a neuro-oncologist for longer than I've been alive. Could they be wrong? Sure. They've given me their opinions and recommendations, not facts. That said, they wouldn't be were they are today if they didn't have a very, very good track record.
DeleteI agree with you, scientific evidence should supersede judgment calls. These treatments are so new, that evidence does not yet exist. Educated guesses are all we have. I also agree with you that second and third opinions are invaluable, and I haven't made any decisions in my treatment without getting at least two reputable doctors to weigh in.
This might be an interesting topic for discussion. Is it better to take a treatment that could harm me but may not benefit me, or to take no treatment at all until I know its exact effect with greater certainty?
I have been diagnosed with a low grade glioma (neurosurgeon thinks it is a stage 2) that is roughly 4.2 cm x 2.9cm x 2.1 cm. The tumor is in my left frontal lobe, and the NS has recommended that when he takes out the tumor he will also be taking out the entire left frontal lobe. I am trying to read your blog - i just found it and reading is hard for me because I can not concentrate well.
ReplyDeleteAm I correct that you have had the left lobe removed? and you felt 'better' afterwards (less depressed?). What else have you noticed? I will try hard to keep reading. GLAD you have this blog. It is the only one I have found.
Glad you found me. I understand how hard it can be to focus on a screen, as that was one of the symptoms that put me on my own path.
DeleteRemoval of the entire left frontal lobe seems rather drastic, especially given the size of the tumor. Your NS would be removing a lot of healthy tissue. I can see why an NS might want to do that - glioma cells tend to drift away from the central mass so the more he removes the better the chance he has of getting it all - but usually surgeons try to do as little unnecessary damage as possible. Were I you, I'd seek a second, possibly a third opinion before letting that guy take a knife anywhere near me. It could be he has some good, valid reasons to want to remove so much tissue. It just strikes me as unusual.
As for my own resection, I did not have my entire left frontal removed but they did have to remove a significant piece of it. The majority, I'd say. After the surgery I did feel surprisingly good and that trend has continued through my recovery. I met up with my old therapist the other day and he was shocked by how much my mood had improved. Even so, I still have some minor short-term memory problems and on some days I don't feel that I'm as quick in conversation as I once was. Which, all things considered, are small prices to pay given how much they took out of me.
The brain is a tricky thing. I can't make any predictions about how well you might tolerate a partial or complete resection of your left frontal lobe. Right after my surgery my own neurosurgeon cautioned my parents that he wasn't sure how impaired I'd be after I woke up. He didn't know if I'd be able to speak, or if I'd know who my parents were, or what. It turns out I got very lucky and had no major deficiencies, but nobody had any idea that's how things would turn out until I opened my eyes again.
Sorry to make you read so much. :) Short version: second opinion.