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.
So sorry to hear all this. I have taken gabapentin off and on for a few years. I get headaches on the right ride of my head which is where my tumor was. They are sure ut is related but hard to not think so. I take Imatrx and Zopran when my hit. Then I put a heating pad on my head and neck—this does help ut can take 30-60 minutes which is frustrating. Ginger beer has also been helpful for some reason.
I have also worked with pain management doctors and had some never blocks done.
If you trust you surgeon never hurts to consult. Hope you start feeling better.
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.
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 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.
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.
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?
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!
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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@taylorstrona, how are you doing? Did you and your team decide on next steps for treatment?
So sorry to hear all this. I have taken gabapentin off and on for a few years. I get headaches on the right ride of my head which is where my tumor was. They are sure ut is related but hard to not think so. I take Imatrx and Zopran when my hit. Then I put a heating pad on my head and neck—this does help ut can take 30-60 minutes which is frustrating. Ginger beer has also been helpful for some reason.
I have also worked with pain management doctors and had some never blocks done.
If you trust you surgeon never hurts to consult. Hope you start feeling better.
-
Like -
Helpful -
Hug
2 ReactionsHi 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.
-
Like -
Helpful -
Hug
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.
-
Like -
Helpful -
Hug
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?
-
Like -
Helpful -
Hug
1 ReactionThe 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 ReactionI 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.
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 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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Like -
Helpful -
Hug
4 ReactionsI haven’t started Tibsovo yet, also worried. Have you started it yet. How are you doing?