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

Posted by jessetimmer @jessetimmer, Jan 14, 2022

Has anyone else had a grade 2 Astrocytoma IDH Mutant

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Hi @jessetimmer, welcome. I'll be interested to learn more about your brain tumor story. @dgruk @leri @ginette55 all have experience with an astrocytoma, although I'm not sure about the isocitrate dehydrogenase (IDH) mutation being involved in their situations. Hopefully they'll share more.

Jesse, is this a recent diagnosis for you? Have you had surgery?

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Yes it will be 3 years this March 12th!! Thank God after surgery rehab I was able to go back to work with my employer.. I had a grade 2 Astrocytoma that was IDH Mutant which means really slow growing I could have been born with it!! It had finally got to golf ball size that's when I had seizures and the MRI revealed the tumor Thank God for Mayo Clinic and all their amazing staff of Drs nurse's and surgeons!! My surgery was 12hrs long and my surgeon Dr. Terrance Burns got 90percent of it!!! it was a bloody surgery and one of my nerves got cut during surgery so I lost my left side function since my tumor was on the right.. I went threw proton beam radiation to kill what was left and 9 months of chemotherapy pill form after that!! might I tell you still went to work everyday!! The tumor keeps shrinking to our surprise and no signs of regrowth..The only thing I still have but it keeps getting better is neuropathy on my left side and there is some cognitive side effects with how i use my body from surgery but nothing major!! Also might I tell you my amazing wife Abbie Timmer was pregnant with our girl Delaney Mae Timmer who we delivered a week after I got home on May 9th of 2019 which I thank God everyday too have such blessings!!

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@jessetimmer

Yes it will be 3 years this March 12th!! Thank God after surgery rehab I was able to go back to work with my employer.. I had a grade 2 Astrocytoma that was IDH Mutant which means really slow growing I could have been born with it!! It had finally got to golf ball size that's when I had seizures and the MRI revealed the tumor Thank God for Mayo Clinic and all their amazing staff of Drs nurse's and surgeons!! My surgery was 12hrs long and my surgeon Dr. Terrance Burns got 90percent of it!!! it was a bloody surgery and one of my nerves got cut during surgery so I lost my left side function since my tumor was on the right.. I went threw proton beam radiation to kill what was left and 9 months of chemotherapy pill form after that!! might I tell you still went to work everyday!! The tumor keeps shrinking to our surprise and no signs of regrowth..The only thing I still have but it keeps getting better is neuropathy on my left side and there is some cognitive side effects with how i use my body from surgery but nothing major!! Also might I tell you my amazing wife Abbie Timmer was pregnant with our girl Delaney Mae Timmer who we delivered a week after I got home on May 9th of 2019 which I thank God everyday too have such blessings!!

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What a story, Jesse. And a new baby girl is such a blessing to live for and inspire you to keep going. She is almost 3 now. Your wife is nothing short of amazing. I simply cannot imagine the depths of inner-strength she must've had to tap into to get her family (and herself) through this with you.

It's not everyone who can work through all those treatments. Did you experience fatigue that required your employer to make accommodations for you? You may wish to add to this discussion:
– Going back to work after cancer: Is this exhaustion normal? https://connect.mayoclinic.org/discussion/going-back-to-work/

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@colleenyoung

What a story, Jesse. And a new baby girl is such a blessing to live for and inspire you to keep going. She is almost 3 now. Your wife is nothing short of amazing. I simply cannot imagine the depths of inner-strength she must've had to tap into to get her family (and herself) through this with you.

It's not everyone who can work through all those treatments. Did you experience fatigue that required your employer to make accommodations for you? You may wish to add to this discussion:
– Going back to work after cancer: Is this exhaustion normal? https://connect.mayoclinic.org/discussion/going-back-to-work/

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I am just diagnosed with this myself, I would love to talk with anyone going through any part of the process?

I am weighing going with any removal as the tumor is located in the left side motor control. I would most likely lose all function of the dominant hand and possible arm. The F-MRI show it there and the biopsy caused a temporary loss of function in the hand and fingers. 12 days post biopsy I have regained most of the strength and coordination in the hand.

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@andlin

I am just diagnosed with this myself, I would love to talk with anyone going through any part of the process?

I am weighing going with any removal as the tumor is located in the left side motor control. I would most likely lose all function of the dominant hand and possible arm. The F-MRI show it there and the biopsy caused a temporary loss of function in the hand and fingers. 12 days post biopsy I have regained most of the strength and coordination in the hand.

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Welcome @andlin. Fellow members @jessetimmer @dgruk @leri @ginette55 know what you're going through and will hopeful return to give support and share their experiences.

Andi, is surgery the only option or might radiation or chemo be options to consider? Are you a Mayo patient, if you don't mind my asking?

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@colleenyoung

Hi @jessetimmer, welcome. I'll be interested to learn more about your brain tumor story. @dgruk @leri @ginette55 all have experience with an astrocytoma, although I'm not sure about the isocitrate dehydrogenase (IDH) mutation being involved in their situations. Hopefully they'll share more.

Jesse, is this a recent diagnosis for you? Have you had surgery?

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So the genome analysis has been completed at the university and it is now identified as an Oligodendrogliomas IDH Mutant type WHO grade 2.

I have had a biopsy done for the analysis and identification. But any further resection will remove portions that control the motor pathway for the right (dominate) hand so quality of life would significantly be diminished.

Radiation will start on August 24 and followed with chemo after 30 treatments.

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@andlin

So the genome analysis has been completed at the university and it is now identified as an Oligodendrogliomas IDH Mutant type WHO grade 2.

I have had a biopsy done for the analysis and identification. But any further resection will remove portions that control the motor pathway for the right (dominate) hand so quality of life would significantly be diminished.

Radiation will start on August 24 and followed with chemo after 30 treatments.

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Andlin, fellow member @barb789123 posted a while ago about having a very similar diagnosis in this discussion about oligodendrogliomas.
– Brain cancer: Anyone have an Oligodendroglioma? https://connect.mayoclinic.org/comment/102688/

Do you have far to travel for radiation or will you have to stay on location temporarily for daily treatments?

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@andlin

So the genome analysis has been completed at the university and it is now identified as an Oligodendrogliomas IDH Mutant type WHO grade 2.

I have had a biopsy done for the analysis and identification. But any further resection will remove portions that control the motor pathway for the right (dominate) hand so quality of life would significantly be diminished.

Radiation will start on August 24 and followed with chemo after 30 treatments.

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same diagnosis, same grade. radiation next week

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