I was diagnosed with an Oligodendroglioma IDH-mutant, 1p/19q-codeleted (grade 2) tumor. I had some seizures and I was found out I had a tumor in the ER. I underwent awake brain surgery And I am just finishing proton beam radiation therapy. Next, I will start my chemotherapy. I'm not looking forward to it. When I first woke up from my surgery I needed a lot of help with pretty much everything. Now, aside from driving, my brain has basically rewired itself and I'm pretty much able to care for myself again. I'm in my 40's so the loss of independence was a pretty big deal. Thank god for my wonderful caregivers, I appreciate them so much! They never made me feel like a burden and I'm so thankful for that.
I’m now also in my 40s, but I was diagnosed with my RFL oligo at 30yo. I kept having headaches, but my docs kept telling me it was poor eyesight, migraines, and even when I got pregnant at 30. Yet, it was actually my OBGYN, who I’d worked with for yrs since I had been a nurse, who finally realized “hey, this isn’t right for her, something’s up here” and he was the one who sent me to a local neuro. He saved my life. I’d been to the ER a few times, so sick and with such bad headaches that I couldn’t hardly lift my head. But the ER docs said bc I’d had an MRI 11yr prior, I couldn’t possibly have anything wrong, and they marked me as “pain med seeking”. I ended up having a craniotomy 2d after my daughter’s 1 bday. They got it all, 100% clear margins, but it returned within a yr. My NS told me I could come off Keppra if I remained seizure free for 6m post op. I had, so I didn’t take the last Keppra dose-idk I was supposed to call him for a proper plan to taper off. So, I had my 1 seizure that day driving with my then 1yo. I didn’t have any more for yrs, but I know it was triggered by trauma, no sleep, not eating, extreme stress. I gave myself a bit more brain damage, broke half my face, did all sorts of damage. I still didn’t have any more episodes for yrs until AFTER I got the big jab. I had a few within hrs, then what I thought were febrile seizures hit a few hrs later. Several mon later, I got the big C as a Christmas gift in 2021. But that’s also when my life became extremely miserable and chaotic. I began having changes in the tumor bed, plus uncontrollable seizures and the headaches were horrible again. I was in decent shape still post op, but the C left me physically, mentally, emotionally weak and broken-literally. Idk how many bones I’ve broken in seizures. My mental acuity, clarity, and cognitive ability which had been diminished, but decent given the circumstances were all but gone. I get so tired and easily overwhelmed. Emotional and mental stress has an enormous effect on me now that used to never be an issue before. My neuro team had, prior to 2021/ 22, always planned that when the oligo returns and grows more rapidly, they would be able to do another crani. My NS had done a fantastic job of getting out the 1 tumor to where I’d be a good candidate for a 2 crani, but not any more. I’ve had too much damage to my brain at this point. My NO has told me for the past few yrs there’s a new biologic about to gain approval he thinks I’ll be a good candidate for, but I’m really hesitant. My only treatment has been the crani so they could possibly use a treatment other than chemo or radiation in the future. Really, I don’t think my oligo will be the way God takes me Home, unless I go to Heaven by way of a seizure. Which, I’ve almost un-alived myself more than once that way. Brain cancer has ruined my life-I’m not the same woman I was. I haven’t been the wife I’d hoped. My daughter never got to know me, not really, and it’s robbed me of more than I can say. But, God! Were it not for His grace and mercy. I know He is using me and all things for His glory!
I’m now also in my 40s, but I was diagnosed with my RFL oligo at 30yo. I kept having headaches, but my docs kept telling me it was poor eyesight, migraines, and even when I got pregnant at 30. Yet, it was actually my OBGYN, who I’d worked with for yrs since I had been a nurse, who finally realized “hey, this isn’t right for her, something’s up here” and he was the one who sent me to a local neuro. He saved my life. I’d been to the ER a few times, so sick and with such bad headaches that I couldn’t hardly lift my head. But the ER docs said bc I’d had an MRI 11yr prior, I couldn’t possibly have anything wrong, and they marked me as “pain med seeking”. I ended up having a craniotomy 2d after my daughter’s 1 bday. They got it all, 100% clear margins, but it returned within a yr. My NS told me I could come off Keppra if I remained seizure free for 6m post op. I had, so I didn’t take the last Keppra dose-idk I was supposed to call him for a proper plan to taper off. So, I had my 1 seizure that day driving with my then 1yo. I didn’t have any more for yrs, but I know it was triggered by trauma, no sleep, not eating, extreme stress. I gave myself a bit more brain damage, broke half my face, did all sorts of damage. I still didn’t have any more episodes for yrs until AFTER I got the big jab. I had a few within hrs, then what I thought were febrile seizures hit a few hrs later. Several mon later, I got the big C as a Christmas gift in 2021. But that’s also when my life became extremely miserable and chaotic. I began having changes in the tumor bed, plus uncontrollable seizures and the headaches were horrible again. I was in decent shape still post op, but the C left me physically, mentally, emotionally weak and broken-literally. Idk how many bones I’ve broken in seizures. My mental acuity, clarity, and cognitive ability which had been diminished, but decent given the circumstances were all but gone. I get so tired and easily overwhelmed. Emotional and mental stress has an enormous effect on me now that used to never be an issue before. My neuro team had, prior to 2021/ 22, always planned that when the oligo returns and grows more rapidly, they would be able to do another crani. My NS had done a fantastic job of getting out the 1 tumor to where I’d be a good candidate for a 2 crani, but not any more. I’ve had too much damage to my brain at this point. My NO has told me for the past few yrs there’s a new biologic about to gain approval he thinks I’ll be a good candidate for, but I’m really hesitant. My only treatment has been the crani so they could possibly use a treatment other than chemo or radiation in the future. Really, I don’t think my oligo will be the way God takes me Home, unless I go to Heaven by way of a seizure. Which, I’ve almost un-alived myself more than once that way. Brain cancer has ruined my life-I’m not the same woman I was. I haven’t been the wife I’d hoped. My daughter never got to know me, not really, and it’s robbed me of more than I can say. But, God! Were it not for His grace and mercy. I know He is using me and all things for His glory!
I’m now also in my 40s, but I was diagnosed with my RFL oligo at 30yo. I kept having headaches, but my docs kept telling me it was poor eyesight, migraines, and even when I got pregnant at 30. Yet, it was actually my OBGYN, who I’d worked with for yrs since I had been a nurse, who finally realized “hey, this isn’t right for her, something’s up here” and he was the one who sent me to a local neuro. He saved my life. I’d been to the ER a few times, so sick and with such bad headaches that I couldn’t hardly lift my head. But the ER docs said bc I’d had an MRI 11yr prior, I couldn’t possibly have anything wrong, and they marked me as “pain med seeking”. I ended up having a craniotomy 2d after my daughter’s 1 bday. They got it all, 100% clear margins, but it returned within a yr. My NS told me I could come off Keppra if I remained seizure free for 6m post op. I had, so I didn’t take the last Keppra dose-idk I was supposed to call him for a proper plan to taper off. So, I had my 1 seizure that day driving with my then 1yo. I didn’t have any more for yrs, but I know it was triggered by trauma, no sleep, not eating, extreme stress. I gave myself a bit more brain damage, broke half my face, did all sorts of damage. I still didn’t have any more episodes for yrs until AFTER I got the big jab. I had a few within hrs, then what I thought were febrile seizures hit a few hrs later. Several mon later, I got the big C as a Christmas gift in 2021. But that’s also when my life became extremely miserable and chaotic. I began having changes in the tumor bed, plus uncontrollable seizures and the headaches were horrible again. I was in decent shape still post op, but the C left me physically, mentally, emotionally weak and broken-literally. Idk how many bones I’ve broken in seizures. My mental acuity, clarity, and cognitive ability which had been diminished, but decent given the circumstances were all but gone. I get so tired and easily overwhelmed. Emotional and mental stress has an enormous effect on me now that used to never be an issue before. My neuro team had, prior to 2021/ 22, always planned that when the oligo returns and grows more rapidly, they would be able to do another crani. My NS had done a fantastic job of getting out the 1 tumor to where I’d be a good candidate for a 2 crani, but not any more. I’ve had too much damage to my brain at this point. My NO has told me for the past few yrs there’s a new biologic about to gain approval he thinks I’ll be a good candidate for, but I’m really hesitant. My only treatment has been the crani so they could possibly use a treatment other than chemo or radiation in the future. Really, I don’t think my oligo will be the way God takes me Home, unless I go to Heaven by way of a seizure. Which, I’ve almost un-alived myself more than once that way. Brain cancer has ruined my life-I’m not the same woman I was. I haven’t been the wife I’d hoped. My daughter never got to know me, not really, and it’s robbed me of more than I can say. But, God! Were it not for His grace and mercy. I know He is using me and all things for His glory!
I was diagnosed with a Oligodendroglioma in December of 2022 and had a resection in February 2023. I have had 4 seizures since then and am paranoid to drive on long trips. I feel fairly safe in town but not being on the highway. My NO actually has said the biologic is now approved. I would much rather do that if mine comes back that chemo or radiation. Those really scare me. I had several CT's and MRI's prior to the one they found mine on. They said now that they know what to look for they can see it had been there for at least 5 years.
Hello @robinjenkins70! I was diagnosed with a grade 2 Oliodendroglioma in 2009 after a full resection. I've since had 2 recurrences with were both grade 3 Astrocytomas. How are you now?
Hello @robinjenkins70! I was diagnosed with a grade 2 Oliodendroglioma in 2009 after a full resection. I've since had 2 recurrences with were both grade 3 Astrocytomas. How are you now?
@azginny, I'm sorry to hear that you've experienced 2 recurrences with a grade 3 astrocytoma. What treatments did you have for the recurrences? Are you in treatment now? How are you doing?
I did surgery only for the first 2 tumors. I did surgery, proton beam radiation, and Temozolomide for the 3rd tumor. The last one was in 2023 and I am doing great!
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I’m now also in my 40s, but I was diagnosed with my RFL oligo at 30yo. I kept having headaches, but my docs kept telling me it was poor eyesight, migraines, and even when I got pregnant at 30. Yet, it was actually my OBGYN, who I’d worked with for yrs since I had been a nurse, who finally realized “hey, this isn’t right for her, something’s up here” and he was the one who sent me to a local neuro. He saved my life. I’d been to the ER a few times, so sick and with such bad headaches that I couldn’t hardly lift my head. But the ER docs said bc I’d had an MRI 11yr prior, I couldn’t possibly have anything wrong, and they marked me as “pain med seeking”. I ended up having a craniotomy 2d after my daughter’s 1 bday. They got it all, 100% clear margins, but it returned within a yr. My NS told me I could come off Keppra if I remained seizure free for 6m post op. I had, so I didn’t take the last Keppra dose-idk I was supposed to call him for a proper plan to taper off. So, I had my 1 seizure that day driving with my then 1yo. I didn’t have any more for yrs, but I know it was triggered by trauma, no sleep, not eating, extreme stress. I gave myself a bit more brain damage, broke half my face, did all sorts of damage. I still didn’t have any more episodes for yrs until AFTER I got the big jab. I had a few within hrs, then what I thought were febrile seizures hit a few hrs later. Several mon later, I got the big C as a Christmas gift in 2021. But that’s also when my life became extremely miserable and chaotic. I began having changes in the tumor bed, plus uncontrollable seizures and the headaches were horrible again. I was in decent shape still post op, but the C left me physically, mentally, emotionally weak and broken-literally. Idk how many bones I’ve broken in seizures. My mental acuity, clarity, and cognitive ability which had been diminished, but decent given the circumstances were all but gone. I get so tired and easily overwhelmed. Emotional and mental stress has an enormous effect on me now that used to never be an issue before. My neuro team had, prior to 2021/ 22, always planned that when the oligo returns and grows more rapidly, they would be able to do another crani. My NS had done a fantastic job of getting out the 1 tumor to where I’d be a good candidate for a 2 crani, but not any more. I’ve had too much damage to my brain at this point. My NO has told me for the past few yrs there’s a new biologic about to gain approval he thinks I’ll be a good candidate for, but I’m really hesitant. My only treatment has been the crani so they could possibly use a treatment other than chemo or radiation in the future. Really, I don’t think my oligo will be the way God takes me Home, unless I go to Heaven by way of a seizure. Which, I’ve almost un-alived myself more than once that way. Brain cancer has ruined my life-I’m not the same woman I was. I haven’t been the wife I’d hoped. My daughter never got to know me, not really, and it’s robbed me of more than I can say. But, God! Were it not for His grace and mercy. I know He is using me and all things for His glory!
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1 Reaction@brainymom83, you have been through so much. Have you and your team decided on the next treatment? What is next?
I was diagnosed with a Oligodendroglioma in December of 2022 and had a resection in February 2023. I have had 4 seizures since then and am paranoid to drive on long trips. I feel fairly safe in town but not being on the highway. My NO actually has said the biologic is now approved. I would much rather do that if mine comes back that chemo or radiation. Those really scare me. I had several CT's and MRI's prior to the one they found mine on. They said now that they know what to look for they can see it had been there for at least 5 years.
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1 ReactionHello @robinjenkins70! I was diagnosed with a grade 2 Oliodendroglioma in 2009 after a full resection. I've since had 2 recurrences with were both grade 3 Astrocytomas. How are you now?
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1 Reaction@azginny, I'm sorry to hear that you've experienced 2 recurrences with a grade 3 astrocytoma. What treatments did you have for the recurrences? Are you in treatment now? How are you doing?
I did surgery only for the first 2 tumors. I did surgery, proton beam radiation, and Temozolomide for the 3rd tumor. The last one was in 2023 and I am doing great!