Has anyone else with IDH-mutant diffuse astrocytoma, grade 2?

I haven't been on here in awhile but I'm an astrocytoma survivor. How are you doing?

My wife had a 4cm Astrocytoma Grade 2 IDH mutant on the right temporal lobe removed 3 years ago in 2020. It looked like it was totally removed.

She had another seizure last week and a CT scan at the hospital. They want do do another MRI to double check.

The area in question is adjacent to the removal site and looks more like a flowing milky area or edema. The oncologist reviewed her every 3 month MRI 3 weeks ago and said there were no issues and it looked clean. But last week she had a seizure and they did a CT scan and the oncologist thought there was enough reason to do another MRI right away.

I guess cancer could show up again in 3 weeks after a clean scan but it seems a bit unlikely after 3 years of clean scans.

Either the anti seizure medication is loosing its effectiveness or more cancer has returned in the last 3 weeks to cause another seizure.

Does anyone have any advice for a scared husband?

I am very afraid of what comes next and wanted to talk to someone that has been through this.

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.

Hello,

Some background for me. I was diagnosed with a grade II Astrocytoma in 2011. Had surgery to remove the tumor. The surgeon reported he got all of the cells he could see--very successful surgery. Since the surgery I have been followed by MRI's and participated in a study to track the oncogene 2HG. No significant changes have been noted aside from what the neuron-oncologist early on thinks was scar tissue. For years there hasn't been any changes in the images. This is great. Also in 2011 I lost my dad to GBM--early 60's. He went from being well to gone in three months. I have seen the other side of this cancer and realize how different my situation is. It is amazing to be considered a long term surviver of brain cancer as there aren't many.

Since my diagnosis I have gotten married and am mom to my husband's kids. It is amazing because I never thought I would have that being diagnosed at 29. When I turned 40 I was so excited because I never thought that would happen. But then I wake up with the aches and remember the downsides of 40 :).

Well since the new medication has been in trials and now is fast- tracked for FDA approval I am eligible to take Tipsovo. This is amazing and what many have been waiting for. I have seen my oncologist personally over the last 12 years working on this. I am having such a hard time making the decision to take it or not. If it had been available 10 years ago I would not hesitant at all. I guess since I have (thankfully) been able to start living a normal life again it is hard to introduce a very new medication with no longterm studies on side-effects. However, we know the nature of these tumors and when they do start growing again it is often more aggressively. We would have tried anything to save my dad's life because we know how deadly this disease is. I am so grateful research is going forward and that is medication is giving new hope to those who have to deal with this terrible disease.

My hope is to talk to those who may be taking Tibsovo and find out your experiences and to also have others to talk to about this in general because not very many people understand. Thanks for taking the time to read.

Hello,

Some background for me. I was diagnosed with a grade II Astrocytoma in 2011. Had surgery to remove the tumor. The surgeon reported he got all of the cells he could see--very successful surgery. Since the surgery I have been followed by MRI's and participated in a study to track the oncogene 2HG. No significant changes have been noted aside from what the neuron-oncologist early on thinks was scar tissue. For years there hasn't been any changes in the images. This is great. Also in 2011 I lost my dad to GBM--early 60's. He went from being well to gone in three months. I have seen the other side of this cancer and realize how different my situation is. It is amazing to be considered a long term surviver of brain cancer as there aren't many.

Since my diagnosis I have gotten married and am mom to my husband's kids. It is amazing because I never thought I would have that being diagnosed at 29. When I turned 40 I was so excited because I never thought that would happen. But then I wake up with the aches and remember the downsides of 40 :).

Well since the new medication has been in trials and now is fast- tracked for FDA approval I am eligible to take Tipsovo. This is amazing and what many have been waiting for. I have seen my oncologist personally over the last 12 years working on this. I am having such a hard time making the decision to take it or not. If it had been available 10 years ago I would not hesitant at all. I guess since I have (thankfully) been able to start living a normal life again it is hard to introduce a very new medication with no longterm studies on side-effects. However, we know the nature of these tumors and when they do start growing again it is often more aggressively. We would have tried anything to save my dad's life because we know how deadly this disease is. I am so grateful research is going forward and that is medication is giving new hope to those who have to deal with this terrible disease.

My hope is to talk to those who may be taking Tibsovo and find out your experiences and to also have others to talk to about this in general because not very many people understand. Thanks for taking the time to read.

@trishaitheisen, great news that the tumor has stopped growing. When did you complete proton beam radiation? Is Tibsovo (ivosidenib tablets) being used as a maintenance therapy?

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.