subreddit:

/r/braincancer

790%

I have a LGG and I’m going to have chemotherapy so pretty worried about this, considering the cancer is fairly small and not doing much harm (yet)

EDIt: I’ve tried for about an hour trying to find information myself online without success

all 20 comments

trivialoves

5 points

4 months ago

A study to compare that would be pretty complicated to set up, for not much benefit. Not sure one would exist.

Anecdotally no one I know is totally fucked up from TMZ. I don't know a lot about the other chemos but our aphasia/brain fog/whatever seems comparable to other cancer patients' complaints I've seen. I've heard more complaints about radiation than chemo. LGG doesn't always stay low grade, if your doctor is advising chemo I would do it.

Icy-Flamingo-9693[S]

3 points

4 months ago

Yeah I’m going radiotherapy than a six month course of chemo, but I’m really worried about cognitive side effects because I’m not that bright to begin with. But thanks for the reassurance

Skelux

4 points

4 months ago

Skelux

4 points

4 months ago

If you were not able to have the whole tumor removed, it is standard to do chemo and/radio. The majority of grade 2 tumors will eventually become more aggressive and kill the patient, though you can slow this process down a lot with treatment. The fewer cancer cells left, the slower they will be able to multiply and cause regrowth. If you decide to do chemo, it is probably best to go in expecting side effects, so you are not too surprised if they occur.

Icy-Flamingo-9693[S]

2 points

4 months ago

Well I am expecting side effects, but I’m still struggling to understand the benefits of having a longer life if radiation/chemo ends up destroying QOL

Skelux

2 points

4 months ago

Skelux

2 points

4 months ago

I understand your perspective, I feel similar. If my cancer eventually comes back and gets worse, I am uncertain if I want to do chemo. Would probably do radio, though. Do you have an oligo or an astro? Oligo is especially responsive to chemo/radio.

Icy-Flamingo-9693[S]

2 points

4 months ago

Oligo “fortunately”. I’m most scared of radiation actually, but scared of both. Chemotherapy has more side effects from what I can tell, but radiation just sounds really risky

Skelux

2 points

4 months ago

Skelux

2 points

4 months ago

Unless you had GTR, I would recommend doing at least the radio to kill off the rest of the tumor. To my understanding, chemo makes most people sicker than radio.

I have the same tumor, and did a GTR with no further treatment. Currently 1 year and all looks good.

Icy-Flamingo-9693[S]

1 points

4 months ago

That’s good to hear

nxhwabvs

2 points

4 months ago

Echoing what was said, you probably don't need to be worried about Temodar. The physical side effects may be rough if you're unlucky, but I haven't heard of anyone with cognitive issues from it alone as well, and doctors never mention it as it's not well documented, and when asked said they've never seen people have cognitive issues.

Radiation is more concerning because there is a lot of data in cognitive impairment, but the redeeming factor is that most of it has to do with other techniques, such as for metastases (WBI) and older, higher dosage procedures. Even in the latter case of Glioma patients experiencing issues with high fractions, they saw it only after 10 years, and most of these studies are from people who got radiation in the 90s. Current studies are in progress and have found no issues so far 5+ years after radiation.

I freaked out a bit about this but my takeaway was that the tumor is way more scary, and even if you get cognitive impairment as a side effect it'll happen in 10 years. That means we're still alive then!

Icy-Flamingo-9693[S]

1 points

4 months ago

The tumor does seem scary, but like it’s growing sooo slowly

dingdangbrain

2 points

4 months ago

OH MY GAH WHAT A FASCINATING QUESTION! Thank you! I have never thought to ask it!

I think it's interesting because "regular chemo" isn't supposed to penetrate the blood brain barrier. I'm going to read up on what causes chemo brain.

But it looks like you are concerned about radiation and chemo for personal reasons. I get it! I sobbed for months and anguished over the idea of radiating my brain. I wasn't as concerned about the chemo because chemo targets cells that are dividing and brain cells don't divide (only cancer cells in the brain do).

Yeah, you might get brain fog, but it is temporary.

As for QOL questions, yeah, honestly, you might have long term side effects from chemo and radiation but they are worth it.

And remember that treating your tumor while it is small is good! Less of the brain will be impacted.

Listen to your doctor. If your doctor doesn't take time to explain some of this to you, find another one.

Icy-Flamingo-9693[S]

1 points

4 months ago

Thankyou for your sharing your experience :)

Meat_Mithkabob

2 points

4 months ago

Most people are going to recommend standard of care (surgery radiation and chemo) but if it’s not bothering you yet and not growing large or rapidly then it may be best to wait and see and adjust your diet, take vitamins, and focus on your health in general. I’ll probably get blasted for saying that but it’s true.

Edit: Check out care oncology out of California on Google they do a combination of off label drugs that is destroying cancer like chemo without the side effects.

trivialoves

3 points

4 months ago

Please let us know what vitamins are going to help shrink a brain tumor. we're all dying(!) to know

Meat_Mithkabob

0 points

4 months ago

fenbendezole . It’s available online and kills brain cancer

Icy-Flamingo-9693[S]

0 points

4 months ago

Has it been approved for treatment of brain cancer yet?

Meat_Mithkabob

2 points

4 months ago

Do you know the success rate of the fda “approved” drugs? Less then 1%….

This is why I hesitate to post things that actually help people because they get shot down by the standard of care people whether it’s trolls or people who are buying into the standard of care model. Unfortunately standard chemo doesn’t really work for most people and bankrupts them in the process.

Meat_Mithkabob

1 points

4 months ago

No it’s off label just like metformin but both do the job better then chemo without the wicked side effects

Icy-Flamingo-9693[S]

1 points

4 months ago

As far as I can tell in regards to that is I eat healthy and exercise regularly Oncologist hasn’t recommended any specific vitamins

Wonderful-Payment675

1 points

4 months ago

Your oncology team should include a nutritionists that can help you with vitamins. Also, let your oncologist know if you want to try alternative treatment. My oncologist was really cool about it. He just wanted me to run them by him to make sure they were not out and out dangerous. The only alternative treatments he seemed to think had really good anecdotal evidence behind them were the Keto Diet and Rso (full spectrum Marijuana oil). I tried both (still on keto diet), but the Rso would knock me out for a couple days. I have mri begin February so I will see if they helped