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! 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.
I am currently on seizure . medication, I have taken CBD in tincture form under my tounge. My oncologist put me on vitamin B12 and vitamin D all good for the brain. I like broccoli and eat that quite frequently. I have bean off chemo for7 years with all clear scans. They still can't tell me that it won't come back again so I have scans every six months to stay on top and. E proactive.
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.
@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?
@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 completed my proton radiation on 8 Feb 2023. Tibsovo is being used instead of chemotherapy. Tibsovo is to stop the growth of the tumor and possibility of shrinking the tumor. I hope this is helpful. Thanks, Trish
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.
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.
Congrats on getting married and gaining a new family in the process :-). It is exciting that Tivsovo is a new option for you. When do you start treatment or have you already?
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.
Thank you for sharing your story. Today I started tibsovo. My MRI scan which was 3 months after my craniotomy showed that 67 percent of my tumor was removed and there is no new growth. I am glad to have the option of tibsovo but am a little worried about side effects. Focusing on taking 1 day at a time and trying to be proactive with my treatment.
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.
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.
I've been in remission from the same exact tumor since March of 2019 all has been going good have a scan ever 6 months now and I'm just on 5 mg aloquist twice daily and lomitrigene low dose because it's seizures which I haven't had one since March of 2019 and is pretty much a safety factor for me because I don't want to have a seizure and hurt or kill someone because I run heavy equipment that medication also helps with bipolar/mood and anxiety which has been great im glad it's all working awesome! But before when I was on keppra it was terrible I would get in bad moods and it was making me almost too unrelaxed but I had to stay on it for soo long seizure free before they would let me go off it.
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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.
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Helpful -
Hug
1 ReactionI 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 ReactionsI am currently on seizure . medication, I have taken CBD in tincture form under my tounge. My oncologist put me on vitamin B12 and vitamin D all good for the brain. I like broccoli and eat that quite frequently. I have bean off chemo for7 years with all clear scans. They still can't tell me that it won't come back again so I have scans every six months to stay on top and. E proactive.
-
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Helpful -
Hug
2 Reactions@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 completed my proton radiation on 8 Feb 2023. Tibsovo is being used instead of chemotherapy. Tibsovo is to stop the growth of the tumor and possibility of shrinking the tumor. I hope this is helpful. Thanks, Trish
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Helpful -
Hug
2 ReactionsHello,
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.
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2 Reactions@workinprogress, to help connect you with other members, I moved your message to this existing discussion:
- Has anyone else with IDH-mutant diffuse astrocytoma, grade 2? https://connect.mayoclinic.org/discussion/astrocyto-grade-2-idh-mutant/
Click the link to read posts from members like @jessetimmer @andlin @dkubacki @wwooden @joesimmons @tumors and @alhayes1976 @trishaitheisen experiences with Tibsovo (ivosidenib tablets).
Congrats on getting married and gaining a new family in the process :-). It is exciting that Tivsovo is a new option for you. When do you start treatment or have you already?
Thank you for sharing your story. Today I started tibsovo. My MRI scan which was 3 months after my craniotomy showed that 67 percent of my tumor was removed and there is no new growth. I am glad to have the option of tibsovo but am a little worried about side effects. Focusing on taking 1 day at a time and trying to be proactive with my treatment.
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1 ReactionI haven't been on here in awhile but I'm an astrocytoma survivor. How are you doing?
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1 ReactionI've been in remission from the same exact tumor since March of 2019 all has been going good have a scan ever 6 months now and I'm just on 5 mg aloquist twice daily and lomitrigene low dose because it's seizures which I haven't had one since March of 2019 and is pretty much a safety factor for me because I don't want to have a seizure and hurt or kill someone because I run heavy equipment that medication also helps with bipolar/mood and anxiety which has been great im glad it's all working awesome! But before when I was on keppra it was terrible I would get in bad moods and it was making me almost too unrelaxed but I had to stay on it for soo long seizure free before they would let me go off it.
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3 Reactions