Quick question - do you remember if your sister's doctor mentioned how much time would pass by before it would grow if it does grow? My oncologist told me it's so up in the air, but I wish there was some sort of time frame. Could it be six months? Ten years? I really hate feeling like a bomb just waiting to explode.

That's really interesting about not doing chemo. I'm glad she is doing better, though. I think the main reason I was put on chemo was because I was starting to have symptoms. Since my tumor is inoperable, it can't get bigger, so I hope the chemo I was on prevents it from growing. I hope everything stays cool until her next MRI. I can't wait until I'm 6 months in between. I was supposed to be every 3 months starting in December, but stuff just kept coming up, and I was getting them every month and a half. Hopefully now I can stay good for the full three months!

Hi, Thanks for your message. Sounds like a good plan to leave treatment until she needs it, thats what they told me too with mine.

I have been okay but my headaches are quite bad and are now making me vomit, and other times I feel nauseas and dizzy.

My next MRI is on Wednesday.

Glad to hear Tess is doing well. I hope all looks stable at her next MRI in June/July.

x

How are things with your sister? Was she able to start Temodar?

Ignoring is a coping method, but I wouldn't think it to be a good one. I'm currently seeing a psychologist on my college campus. I was also recently prescribed Celexa to treat depression/anxiety. As much is it feels better short-term to hold in feelings or ignore them, in the long run it just leads to a bigger crash, melt down, or panic attack (which I have experienced quite a lot of over the past month). You should see if your sister could see a therapist, or even you and your family. I'm sure it is stressful for everyone. I know my younger brother has had a hard time coping and has been acting out more. It really helps to talk to someone who is objective and tells you what you need to hear rather than what you want to hear.

I really hope your sister can start Temodar, and even better if it could be the continuous low dose to be even more aggressive. Do you know if radiation will be used along with Temodar? It usually is, though I didn't get radiation so that it could be used down the road if need be.

 

Good luck with everything! It's great talking to you. It's nice to be able to help someone when I've been the one being helped for the past year and a half. A good distraction :)

 

Becky

Good thing you weren't badly affected from the flood!

I'm (obviously) not an endocrinologist, but I do see one, and from what I've learned from those appts, I would definitely suggest your sister not have a baby. I'm not sure if pregnancy produces additional growth hormone, but any change in hormones, especially growth, can actually cause a tumor to grow! I have low growth hormone bc of the location of my tumor, but I'm not being given any supplement bc it could cause the tumor to grow. I would rather be safe, but have her talk it over with her docs.

My oncologist told me that chemo for low grade has been used, if not really to shrink but just to stop it from growing any more, which is way better than it growing. As I said before, I did the continuous low dose to be more aggressive to stop any sort of growth from happening. I actually had a scare last week that it had started to grow, but it was just a bad radiologist who did  the report. My oncologist compared the scans and said everything looked fine.

I definitely understand about the seizures. I've never had one that caused me to lose consciousness. I had one "bad" one where I got very disoriented and a rushing sensation. I was started on Keppra that day. I then continued to have mini bouts of disorientation and face/scalp numbness/tingling, and after two additional increases, they seem to have subsided.

 

I hope you can get the Temodar paid for! It is very expensive! Do you know how long they plan to have her on for? Also, because the pills come in different mg, it can cost more to get the right number of pills to make the required dose. I was lucky because I needed 80 mg every night, so that was just 4 of the 20 mg pills, as opposed to have to take, say, 85 mg, which would require a bottle of 20 mg and a bottle of 5 mg, making it way more pricey. 

 

It is very hard to find info about this online. I was on the continuous low-dose regimen, which I can't find info on anywhere, let alone using Temodar for low-grade gliomas. But it did help and shrunk my tumor by about 20%!! I'm not sure how my oncologist came up with the regimen. I'm at Cedars-Sinai, so they are always finding new ways to do things! But it worked for now so I'm happy. It's also difficult for trials about this to be done. Temodar is a fairly new drug, and since low-grade grows slowly, it's hard to do long-term tests on different drugs because low-grade takes forever to become "long-term"!

 

How did your sister find out about her tumor?

I'm glad I was able to help! I am back on a watch and wait. The doctors did what they could for now. Temodar usually doesn't affect blood counts, but after six months, mine were starting to get affected, so I had to stop to not risk any long-term damage. I would say the main side effects were excessive fatigue, weakness, no appetite, slight nausea, and constipation. I could have lasted longer with just those symptoms, but Temodar runs the slight risk of developing leukemia, so since my blood counts were being affected, my oncologist felt it was time to stop. I'm glad to be off now though! Didn't really comprehend how bad I felt until I felt good again! But while I was taking the chemo, I was definitely able to manage.

 

The original goal was just to have the tumor not grow anymore. Mine was found accidentally after getting a CT scan when I got a concussion. Nothing was done in the beginning because I wasn't having symptoms, but a few months later, I developed diabetes insipidus, a hormone problem caused because the tumor was starting to aggravate the hypothalamus. I wasn't able to absorb the water I was drinking, so I would drink around 5-6 liters a say but still be dehydrated. What my point was originally is that the tumor was found very early; it was only about 2 cm. But in its location, it can't grow much more because it is inoperable, so the docs wanted to be aggressive now so that it either won't come back, or that if it does, it will be longer down the road and there will be a better way to treat it.

Hope with Helen's help you can get the chemo at the very least subsidised. I have heard it's mega $$ before. That's exactly right, given the remainder of Tess's tumor is an inoperable area and near such vital areas it's the same as what a malignant tumor could do and like you say, you are not sure what grade is sitting in there as they couldn't get to that part. 

 

Will be thinking of you all,

Sarah x