I did my six weeks of radiation. Before my brain was completely swollen and the white flair was everywhere. The post-radiation MRI showed that the swelling was gone and 80% of the flair was gone. They can't tell me if the cancer has been eliminated there or if it's just greatly diminished. I've finished two round of chemo (pills) and just feel run down, loss of and change of appetite and these awful headaches that last 30 seconds that are so bad that they have dropped me to the floor. Basic symptom is being so tired and my legs, esp the right leg, weigh about 50 pounds each. But I'm eating and getting 4,000+ steps a day, so I'm doing what I can to fight this thing.
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.
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.
I am finishing up my second month of being on Tibsovo (Ivosidenib). I am doing well on it. Still able to teach and keep up with all my kids activities. I will get an mri at the end of December. Praying that my tumor will be smaller. Thanks for asking!
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?
My daughter-in-law had the same Grade 2 astrocytoma removed almost 3 years ago. She goes to MD Anderson every 3 months for scan to monitor new growth. Her doctor there has suggested she can take Ivosidenib (FDA approved for other cancers) or wait for Vorasidenib (not FDA approved yet) that is specifically designed for brain tumors and showing promising results. Has anyone tried this drug?
My daughter-in-law had the same Grade 2 astrocytoma removed almost 3 years ago. She goes to MD Anderson every 3 months for scan to monitor new growth. Her doctor there has suggested she can take Ivosidenib (FDA approved for other cancers) or wait for Vorasidenib (not FDA approved yet) that is specifically designed for brain tumors and showing promising results. Has anyone tried this drug?
I am also waiting for the FDA approval of this drug but still on Ivosidenib. How have your daughter’s scans been? My scan in December showed no growth and possibly less dense than after surgery. I will get another scan at the end of March.
I am also waiting for the FDA approval of this drug but still on Ivosidenib. How have your daughter’s scans been? My scan in December showed no growth and possibly less dense than after surgery. I will get another scan at the end of March.
Hi! I am following up with you, as I have same diagnosis and am in turmoil about whether or not to take Tibsovo. Was just hoping maybe we could connect and I could get an update from you on what you decided?
Hi! I am following up with you, as I have same diagnosis and am in turmoil about whether or not to take Tibsovo. Was just hoping maybe we could connect and I could get an update from you on what you decided?
I was on Temozolomide (TMZ) and my symptoms got so bad by the 10th cycle (stabbing headaches, mass-confusion, very hard to walk, light headed, etc) that The Neuro Oncologist suggested we stop chemo. Something else is wrong in my head and nerves and nobody can tell me what it is. So now trying Gabapentin for the head pain but it seems to be "focusing" the symptoms and making them worse. Because why not? Next stop is my original Neurosurgeon and hopefully a new path.
Hi! I am following up with you, as I have same diagnosis and am in turmoil about whether or not to take Tibsovo. Was just hoping maybe we could connect and I could get an update from you on what you decided?
I have decided not to take the Tibsovo at this time due to no changes noted on many 6 month follow-up scans—for a years at this point. I was so stressed tying to make the decision that my neuro-oncologist said not to do for now. Of course if the MRI ever indicates change then will start the medication. Would probably take the Vorasidenib—I believe that is the one studied specifically for the IDH1 mutation.
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I did my six weeks of radiation. Before my brain was completely swollen and the white flair was everywhere. The post-radiation MRI showed that the swelling was gone and 80% of the flair was gone. They can't tell me if the cancer has been eliminated there or if it's just greatly diminished. I've finished two round of chemo (pills) and just feel run down, loss of and change of appetite and these awful headaches that last 30 seconds that are so bad that they have dropped me to the floor. Basic symptom is being so tired and my legs, esp the right leg, weigh about 50 pounds each. But I'm eating and getting 4,000+ steps a day, so I'm doing what I can to fight this thing.
How long have you been a survivor?
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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2 ReactionsI haven’t started Tibsovo yet, also worried. Have you started it yet. How are you doing?
I am finishing up my second month of being on Tibsovo (Ivosidenib). I am doing well on it. Still able to teach and keep up with all my kids activities. I will get an mri at the end of December. Praying that my tumor will be smaller. Thanks for asking!
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4 ReactionsMy daughter-in-law had the same Grade 2 astrocytoma removed almost 3 years ago. She goes to MD Anderson every 3 months for scan to monitor new growth. Her doctor there has suggested she can take Ivosidenib (FDA approved for other cancers) or wait for Vorasidenib (not FDA approved yet) that is specifically designed for brain tumors and showing promising results. Has anyone tried this drug?
I am also waiting for the FDA approval of this drug but still on Ivosidenib. How have your daughter’s scans been? My scan in December showed no growth and possibly less dense than after surgery. I will get another scan at the end of March.
The last scan showed a little bit of growth in one area (they were watching two spots) from her baseline almost 3 years ago.
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1 ReactionHi! I am following up with you, as I have same diagnosis and am in turmoil about whether or not to take Tibsovo. Was just hoping maybe we could connect and I could get an update from you on what you decided?
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1 ReactionI was on Temozolomide (TMZ) and my symptoms got so bad by the 10th cycle (stabbing headaches, mass-confusion, very hard to walk, light headed, etc) that The Neuro Oncologist suggested we stop chemo. Something else is wrong in my head and nerves and nobody can tell me what it is. So now trying Gabapentin for the head pain but it seems to be "focusing" the symptoms and making them worse. Because why not? Next stop is my original Neurosurgeon and hopefully a new path.
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Hug
1 ReactionHi Taylorstrona,
I have decided not to take the Tibsovo at this time due to no changes noted on many 6 month follow-up scans—for a years at this point. I was so stressed tying to make the decision that my neuro-oncologist said not to do for now. Of course if the MRI ever indicates change then will start the medication. Would probably take the Vorasidenib—I believe that is the one studied specifically for the IDH1 mutation.
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Helpful -
Hug
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