Hello! I am two weeks out from a surgery to remove a brain tumor that was the size of a golf ball. 80 percent of my tumor was removed and I haven’t had any neurological or physical issues. I had 2 seizures which lead to my diagnosis. After looking at the biopsy I have a grade 2 astrocytoma that has the IDH1 mutation. Is there anyone that is on the new medicine that is specifically for tumors with the IDH1 positive mutation?
I am not sure if this would be a possibility for you, I have the same cancer. I completed 34 days of proton beam radiation at Mayo in Rochester and now I am taking Tibsovo instead of Chemotherapy (I did not have surgery). I have minimal side effects and the tumor has stopped growing. The drug is not FDA approved however works much better (as far as side effects go) than chemo. I am not sure if this right for you, but it seems like it might be something you can check into or ask your Doctor. Take care.
So far for me, with my Grade 2 Astrocytoma, I'm on my 5th week of radiation. Then a month off while the oncologist lets things settle and gets another MRI, then we're supposed to discuss 12 months of chemotherapy.
No one has discussed any other medicine, but my tumor has filled my entire left brain and some of the right before they accidentally found it. None of it can be removed or stopped, only slowed down. Don't know how that affects any other treatment possibilities.
There are members talking about Tibsovo, albeit for bile duct cancer, in this discussion:
- Anyone taking tibsovo for bile duct cancer? https://connect.mayoclinic.org/discussion/anyone-taking-tibsovo-for-bile-duct-cancer/
Tibsovo (ivosidenib tablets) is an IDH1 inhibitor and I understand it is showing to be effective for some brain tumors. I'm glad you have access to it. I'll be interested to hear how you're doing as you start treatment.
Hello! I am two weeks out from a surgery to remove a brain tumor that was the size of a golf ball. 80 percent of my tumor was removed and I haven’t had any neurological or physical issues. I had 2 seizures which lead to my diagnosis. After looking at the biopsy I have a grade 2 astrocytoma that has the IDH1 mutation. Is there anyone that is on the new medicine that is specifically for tumors with the IDH1 positive mutation?
Hello! I am two weeks out from a surgery to remove a brain tumor that was the size of a golf ball. 80 percent of my tumor was removed and I haven’t had any neurological or physical issues. I had 2 seizures which lead to my diagnosis. After looking at the biopsy I have a grade 2 astrocytoma that has the IDH1 mutation. Is there anyone that is on the new medicine that is specifically for tumors with the IDH1 positive mutation?
I have had the same problem. It’s seven years since September and I have a walker and a heme at home and a wheelchair too. I hate it some days but realize that there is always a new cure with medications and new treatments. You are not alone in your journey. Hope that helps 😀
I've been recently diagnosed with Astrocytoma Grade 2 IDH mutant.
It can't be removed. Starting radiation 8n July then chemotherapy for a year to stop it from growing. Takes up the entire left side of my head.
Been having a lot of trouble walking lately and always tired. And bumping into everything on my right side and dropping things.
I have had the same problem. It’s seven years since September and I have a walker and a heme at home and a wheelchair too. I hate it some days but realize that there is always a new cure with medications and new treatments. You are not alone in your journey. Hope that helps 😀
I've been recently diagnosed with Astrocytoma Grade 2 IDH mutant.
It can't be removed. Starting radiation 8n July then chemotherapy for a year to stop it from growing. Takes up the entire left side of my head.
Been having a lot of trouble walking lately and always tired. And bumping into everything on my right side and dropping things.
This is a follow up from my last post. It took 7 weeks to get a new MRI and the scan was good. No growth. They were concerned that because she had a seizure, that could be a sign of cancer growth. Her neurologist said that anti seizure meds can stop seizures only 70% of the time and two medications together can stop them 80% of the time but you can't get 100% with medication. She mostly has auras once every couple of weeks and the auras and the one seizure are usually at night. Good news all together.
Her oncologist was very up front this time for some reason. She said it is not if the cancer will come back but when. But... it will be caught early and there are many things that can be done to shrink or remove the regrowth. She has a very short scan schedule set up for her. Every 2 to 3 months. I suppose 3 years is an average time for recurrence after surgery but I don't know.
I know if you had 1000 people with the same tumor characteristics you will have 1000 different outcomes. This type of cancer is very individual and it depends on where it is and how old you are and how much was removed on the first surgery.
There are new treatments since 2020 that are very promising and the survival rate is going up all the time.
There are many encouraging things happening these days. Over all I am learning not to worry but to trust God has a plan for all of this that is way more than I will ever understand.
My wife has a much better attitude than I do and I need to learn from her.
@wwooden, I appreciate your recent update. It sounds like your oncologist works well with you and your wife. There are many stages to acceptance. Your wife sounds like a good teacher. 🙂
Connect
Connect
Like
Helpful
Hug
I am not sure if this would be a possibility for you, I have the same cancer. I completed 34 days of proton beam radiation at Mayo in Rochester and now I am taking Tibsovo instead of Chemotherapy (I did not have surgery). I have minimal side effects and the tumor has stopped growing. The drug is not FDA approved however works much better (as far as side effects go) than chemo. I am not sure if this right for you, but it seems like it might be something you can check into or ask your Doctor. Take care.
-
Like -
Helpful -
Hug
4 ReactionsSo far for me, with my Grade 2 Astrocytoma, I'm on my 5th week of radiation. Then a month off while the oncologist lets things settle and gets another MRI, then we're supposed to discuss 12 months of chemotherapy.
No one has discussed any other medicine, but my tumor has filled my entire left brain and some of the right before they accidentally found it. None of it can be removed or stopped, only slowed down. Don't know how that affects any other treatment possibilities.
-
Like -
Helpful -
Hug
1 ReactionThere are members talking about Tibsovo, albeit for bile duct cancer, in this discussion:
- Anyone taking tibsovo for bile duct cancer?
https://connect.mayoclinic.org/discussion/anyone-taking-tibsovo-for-bile-duct-cancer/
Tibsovo (ivosidenib tablets) is an IDH1 inhibitor and I understand it is showing to be effective for some brain tumors. I'm glad you have access to it. I'll be interested to hear how you're doing as you start treatment.
I am going to be put on a prescription called Tibsovo. It has shown results to shrink tumors like mine.
Hi@alhayes1976, I'm tagging fellow members @aworriedmom @shell68 @taysuz @aa3 @joesimmons who also have experience with an astrocytoma and IDH1 mutation.
Al, what treatment beyond surgery is being suggested for you?
-
Like -
Helpful -
Hug
1 ReactionHello! I am two weeks out from a surgery to remove a brain tumor that was the size of a golf ball. 80 percent of my tumor was removed and I haven’t had any neurological or physical issues. I had 2 seizures which lead to my diagnosis. After looking at the biopsy I have a grade 2 astrocytoma that has the IDH1 mutation. Is there anyone that is on the new medicine that is specifically for tumors with the IDH1 positive mutation?
-
Like -
Helpful -
Hug
1 ReactionThanks for the reply!
Curious to see how it all plays out and how things will change. Hoping to be able to work for a long enough time.
I have had the same problem. It’s seven years since September and I have a walker and a heme at home and a wheelchair too. I hate it some days but realize that there is always a new cure with medications and new treatments. You are not alone in your journey. Hope that helps 😀
-
Like -
Helpful -
Hug
1 ReactionI've been recently diagnosed with Astrocytoma Grade 2 IDH mutant.
It can't be removed. Starting radiation 8n July then chemotherapy for a year to stop it from growing. Takes up the entire left side of my head.
Been having a lot of trouble walking lately and always tired. And bumping into everything on my right side and dropping things.
-
Like -
Helpful -
Hug
3 Reactions@wwooden, I appreciate your recent update. It sounds like your oncologist works well with you and your wife. There are many stages to acceptance. Your wife sounds like a good teacher. 🙂
-
Like -
Helpful -
Hug
2 Reactions