r/braincancer • u/Skelux • 7d ago
Leaning Toward No Further Treatment
So the quick followup: basically everything I figured out by looking at my own scans was correct. It is speading along my insula, and is right up against the putaman - not real good.
I am faced with a tricky decision with no good answer. The surgeons want to book me in within a couple of weeks and scoop out what they can safely do - but considering the location in the insula, I might end up losing part of what makes me who I am. After that, they want to put me on TMZ+Radio. There is no way a scrawny underweight dude like me is going to tolerate that, I'll have to bail on it early for sure. And even if I somehow got through it all, my quality of life is ruined by stress and side effects, all for the sake of a few extra years overall survival.
I wanted to go on Vorasidenib, but they told me it still costs some kind of insane price (like 60k a month or something). I had been pretty sure Vora was already available under healthcare at a much more affordable price, but apparently not - unless the surgeon was wrong, and the oncologist says something different next week.
Overall, I am leaning toward the side that I never expected I would. Do nothing - no surgery, no meds, no radiation, no scans even. I want to feel like myself as long as possible, and treatment doesn't allow for that. It sacrifices my time and comfort just to buy slightly more time. It feels like I should instead just lull myself back into a state of denial and try to live whimsically as I have been for the past 4.5 years since my first surgery.
9
u/drinkinsweettea 6d ago
I can't speak on the rest I am not completely sure where my tumor was in detail & my grade was probably a tad bit higher at 3 full blown GBM. I was a scrawny 23yr old doing a year of temzolomide & 6 weeks radiation. My only personal side effects was I could practically smell anything within a miles radius & tomatoes tasted like metal. Didn't stop me from eating salsa at every chance, however. I fully understand the apprehensive feelings with taking any chemotherapy, & my experiences are my own, but I hope reading personal accounts will help you feel comfortable, no matter your decision. Any & all treatment choices are yours alone that's the beauty of bodily autonomy.
3
u/TheShakyHandsMan 6d ago
Definitely agree here. OP, I’m also not the biggest built guy and 5 weeks into Radio/TMZ. I’m handling the side effects fine. Had a few days of vomiting early on and a med change stopped that.
2
u/drinkinsweettea 6d ago
I'm a 5'4" girl lol I threw up once immediately after I drank a fruity V8 mix & again when I smelled my husband's laundry soap. Those are really the only two instances I remember throwing up. I was on kytril the entire time I took chemo so it seems it did a great job of quelling any nausea. They gave me phengren as a back up, tho.
8
u/seanclmn1 7d ago
I would not recommend that. Though it’s ultimately up to you, giving up this early feels premature to me.
1
7
u/MusclesNuclear 6d ago
With OLIGO 2 I disagree with your assessment of no further treatment. You have DECADES ahead of you. Dont just give up.
3
u/slimwizzle420 7d ago
I second the above. I wouldn’t recommend that at all but it’s definitely up to you. They usually don’t recommend surgery if they can’t safely remove it. Removal isn’t going to give you just a few more years probably more like 10 or so? Though I don’t know What type of tumor you have so can’t say for sure
1
u/Skelux 7d ago
its an O2 in the insula, probably not up to O3 yet, just got really unlucky with the trajectory. My tumor was labelled as "right frontal", but by the time it was discovered was actually also within my anterior insula. Cutting it out will not change the trajectory, and will waste a whole bunch of my precious little time recovering - also possibly causing deficit earlier than otherwise. Even when invaded by glioma cells, the areas of the brain remain active until congestion becomes overwhelming. The part of my insula they would remove is pretty whispy for now, and would have more time to slowly adjust if I just leave it alone. That said, I might have weeks of quality time left or even many years. I do see the occasional anecdote of an untreated LGG behaving itself for a weirdly long time without causing issues.
3
u/seanclmn1 7d ago
Did the neurosurgeon/neuro-oncologist say cutting it out won't change the trajectory? I feel like you can get the surgery, and then wait for Vorasidenib to become approved/covered which I imagine will be fairly soon (in the UK?).
1
u/Skelux 7d ago
I'll stay in touch with the onc for now and probably go on it when it no longer costs an impossible amount. Pretty much the only treatment I am willing to do at this point. If I start getting seizures that seem like they could be controlled by removing overwhelmed cortical matter, I will consider it. Right now at least, I am totally symptom free.
2
u/aschaberg9 6d ago
Id ask about laser ablation as an alternative to open craniotomy for the portion that has spread to your insula. I (30M) had a successful laser ablation of that portion (anterior insula) in June after a surgery in January couldn’t get all of it. G3/4 astro, did radiation with little to no side effects and now onto tmz… so far so good, NED on MRIs
1
u/Snoo82568 5d ago
I hsd a brain tumor removed and then was put on voranigo to help if frim re occurring ill know Sept 20th the results of ny one yr MRI
3
u/Accurate_Reality_618 7d ago
I am not the patient, I am here for my mother, but reading this scared me a lot. I wish you good luck in facing this damned disease. There is a new vaccine based on the Corona vaccine technology and it is supposed to treat all tumors, and I hope it comes out quickly.
I would also advise you to apply for clinical research.
4
u/GuardMost8477 6d ago
I can’t make your decision obviously, but up to the outrageous cost of that drug you are doing some serious projecting. You are assuming. ALL these bad things not may happen, that that WILL happen.
Have you ever considered that NONE of the bad stuff or just a little bit of it may POSSIBLY happen?
You’re jumping to the worst case scenario, when it’s possible you could respond well!
Just food for thought hun. Hoping things take a positive turn for you. ♥️
2
u/acets 6d ago
Vorasidenib manufacturer may give you a very, very reasonable discount. Ask about that program.
3
u/aitchteeok 6d ago
i came here to say the same thing. i pay almost nothing for Voranigo through the Servier patient assistance program since i’m on disability and have limited income. i’m surprised this wasn’t suggested by your oncology team.
2
u/Legocake2 6d ago
Idk about other countries. But you can definitely get a discount on Vora in the US. I would reach out to the manufacturer about it regardless of country just in case.
Definitely go to your oncology appointment and look at your options. If it’s a small recurrence, is gamma knife an option?
I have found that some neurosurgeons will say whatever to get inside your head. It might not be 60k if you have insurance and you get the manufacturer discount.
2
2
u/RaggedClownBehind 6d ago
My tumour is on my insular, temporal and frontal lobes. I assumed I would die quickly and had the same fears as you about the tumour on my insular. I declined all treatment initially but after two years my tumour started growing and I decided to have six months of TMZ. I had barely any side effects from TMZ, the growth stopped and I am still doing great a year later.
2
u/Calihoya 6d ago
Just letting you know Vorasidenib has a copay card where you pay $25.
2
u/Skelux 6d ago
I'm in Victoria Australia, not sure if the same approach applies here. I don't think Vora is PBS-listed yet, which is why full price has to be paid. If that changes while I am still alive, maybe I'll still get the chance.
1
u/isitwheremybitsfits 5d ago
Have you spoken to your oncologist about this? I’m in NZ and my oncologist told me that vorasidenib is available for patients in Australia, but they’re no longer accepting NZ patients so we now have to pay (60k a year which is still insanely expensive but not 60k a month).
2
u/Successful-Habitual 6d ago
Thanks for your input. You managed to get everything down. I'm totally with you on this. I'm struggling. 1.8 years post op with the same reasoning. I've been angry at the system for cancer so my new favorite saying is " I'm Done!" I've been angry that I have to accept myself at 22.5%. At first for a whole year I thought this is how everyone recovers, working, walking, and just being normal again. That didn't happen with me due to the seizures being abnormally strong. Everything in my cranium and skeletal system is still in shock. With that I scream "I'm Done" The Mayo clinic doesn't pay me enough to be a science experiment. Peace 🕊️.
1
u/Skelux 6d ago
I'm so sorry it turned out that way for you. Did the seizures become worse due to the surgery? After my first surgery, I was having minor conscious seizures for the first ~2 years, and then nothing since. At least with the tumor, your brain has time to adjust - that's the whole reason I didn't notice any change despite having a large egg-sized chunk of my brain scooped, which contained mostly frontal lobe, but also a good chunk of insula. With any luck, my brain can rewire slowly and not be bothered too much by the gradual insula destruction. If they were to just cut it out right now on the other hand, I might never be the same. It's not just the deficits and all that, but the scheduling and precious time lost on the appointments too.
1
1
u/No_Confidence3700 6d ago
if you are seriously worried about surgery+chemo+radiation, you can try adjv TMZ to halt the arrest of growth and reverse it, in the process buying more time and by that time vora should be an option for you in UK if/when you need it. I would seriously consider at least this option if I were in your shoes. You can do 6 months of chemo to begin with and that itself should be good enough to buy decent of amount of time given your's is a O2. You can then make a call to see if you would like to 9 vs 12.
You can work with your oncologist on your TMZ dosage. You need not go on the max dosage that they put you on. As you know the more the better is not true all the time. You can find an effective dosage that is quite lower than the max, but also offers effective cytotoxicity to kill tumor thereby also reducing any long term TMZ damage (that's mostly caused due to very long duration of TMZ usage beyond a year at very high strengths).
Did you do spectroscopy and do you know Cho/CR, Cho/NAA values? Again doing treatment or not is your decision to take. My personal take is you have a good shot since it's still a O2 and you do have some reasonable options to halt your growth w/o sacrificing too much of Quality of life.
Take as much time as you need and re-look at your options, once you are in a better state of mind, you might look at things differently, right now it looks bleak, it may not be couple months from now. Wish you the very best
1
u/Future-Chapter-9502 6d ago
No no no, yours originally was Oligo 2, those are slow growing and respond to treatments well. You also had a supratotal resection, if I remember correctly. This might not be a new growth. Just monitor closely with scans. Meanwhile talk to radiologist, discuss LITT oblation, proton. Start Tibsovo now, if Vora is still not covered by insurance. Tibsovo works similarly, some say even better than Vora. Even if new growth get’s confirmed, which is still highly doubtful, it will be very slow. You will put together a plan that will work best in given situation.
1
u/Easy-Medicine-3775 6d ago
The maker of vora, Servier, have access programs for most of us who can’t pay out-of-pocket. Good luck. I’d like to second what the other poster said about you handling this incredibly well. I’ve never had a recurrence and I’m still a basket case most of the time.
14
u/PerceptionMotor7173 7d ago
I can’t give any advice myself here, but well done to you, this is beyond difficult on all levels and all this is such an energy-drainer, but kudos for the bravery, for looking at options, for trying to stay yourself and get a better quality of life, this takes bravery beyond known to many people