Author Topic: 2 years and the tumor has calmed down  (Read 728 times)

UkulelesAreAwesome

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2 years and the tumor has calmed down
« on: October 22, 2024, 05:06:44 pm »
I had my 2 year MRI last week. I met with my doctors today. They told me they are unsure if it will grow or not. There was a period of swelling or potential growth earlier. I am relieved to be told I don't need surgery at this time. I have another MRI in 6 months. I have headaches which may be tension headaches. Other than that, I just have hearing loss, tinnitus, and a bit of pressure in the left side of my head. I'm feeling grateful that the tumor is looking more stable. I feel like I've been given my life back but I understand that can change with any future MRI. The ventricles are looking good. No hydrocephalus. Feeling thankful.

mwatto

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Re: 2 years and the tumor has calmed down
« Reply #1 on: October 22, 2024, 07:48:48 pm »
I am so very glad to hear that! I have also found that symptoms come and go (first 3 years were hard especially re nerve pain).
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

UkulelesAreAwesome

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Re: 2 years and the tumor has calmed down
« Reply #2 on: October 22, 2024, 08:18:56 pm »
Thank you, mwatto. I think you've mentioned your tumor had cystic components. Mine also has that now. They said there is facial nerve involvement. They also said they don't usually do GK a second time in a case like mine. I feel a sense of relief for now. It's been just 2 years for me so maybe after one more year things will stabilize and my new normal could improve a bit. I'm just glad to avoid surgery for now. I'm very thankful for that. You've said this was probably pseudoprogression and it sure looks like that may be the case.

mwatto

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Re: 2 years and the tumor has calmed down
« Reply #3 on: October 23, 2024, 10:35:23 pm »
Yes I had two cystic components- which totally disappeared after treatment and still gone year 5.  I think I also have some facial nerve aspect though re this stabbing ear pain I get on an almost daily basis. Super annoying as it wakes me up. Unfortunately, the AN releases toxic proteins so I guess we will have symptoms on and off as it causes inflammation and irritates nerves. I try and work on inflammation on a daily basis and stay healthy through diet, sleep, walking and swimming, low stress, some supplements .
« Last Edit: October 25, 2024, 01:18:37 am by mwatto »
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

DanFouratt

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Re: 2 years and the tumor has calmed down
« Reply #4 on: October 24, 2024, 08:16:21 am »
Congrats on your status. My is stay that way.
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

UkulelesAreAwesome

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Re: 2 years and the tumor has calmed down
« Reply #5 on: October 24, 2024, 06:35:48 pm »
Thank you, Dan. I'm ok with all the side effects of GK and the tumor. The one thing I'm hoping to avoid is surgery. I can handle the rest but am scared of surgery.  I'm feeling hopeful now. Depression is lifting.

DanFouratt

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Re: 2 years and the tumor has calmed down
« Reply #6 on: October 25, 2024, 03:43:36 pm »
UAA,  I agree with you on surgery. I am glad I went radiation. Living with SSD and Tinnitus is something I can mange.

Take Care,

Dan
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm

Derby

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Re: 2 years and the tumor has calmed down
« Reply #7 on: October 29, 2024, 12:39:20 am »
Thank you, Dan. I'm ok with all the side effects of GK and the tumor. The one thing I'm hoping to avoid is surgery. I can handle the rest but am scared of surgery.  I'm feeling hopeful now. Depression is lifting.
That's good news. I'm about a year out from my dx, and I'm glad I chose SRS over surgery as well.
May 2014  Sudden onset R sided Tinnitus, gradual R hearing loss
Nov 2023  MRI Dx 1.9 x 2.0 x 1.4 cm R vestibular schwannoma
May 2024  Hypofractionated SRS (3 x 6 Gy) Varian TruBeam
Aug 2024  Repeat MRI -- no change in size

DanFouratt

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Re: 2 years and the tumor has calmed down
« Reply #8 on: October 29, 2024, 03:44:05 pm »
Derby,

I am glad it is stable after a year. 

Dan
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23            
MRI 6/14/24            7mm x 12 mm