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spammy
@spammy

Posts: 4
Joined: Dec 16, 2016

Inoperable Brain Tumor

Posted by @spammy, Dec 16, 2016

My sister was just diagnosed with Stage 3 Anaphlastic Astrocytoma (sp?) Looking for support as she goes through radiation and chemo medication. Is there a site or a link here on Mayo, such as do’s and don’ts with diet, etc.? Any and all tips would be greatly appreciated. Be blessed!!

REPLY

Hi @spammy, welcome to Connect.
I’m sorry to hear about your sister, but glad that you found us here on Mayo Clinic Connect. I’d like to introduce you to other Connect members who have been in your shoes, either caring for a family who has an anaplastic astrocytoma or they themselves do. They can help you learn from their experiences what you might expect. You can read more about each of them in this discussion:

– Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? http://mayocl.in/2e0InOQ

Spammy, do you live with or near your sister? How old is she if I may ask?

I forgot to tag the other members in the message above. Please meet @parker80138 @trivon @121861 @kansastumor and @egee202 who also have experience with anaplastic astrocytoma.

@colleenyoung

Hi @spammy, welcome to Connect.
I’m sorry to hear about your sister, but glad that you found us here on Mayo Clinic Connect. I’d like to introduce you to other Connect members who have been in your shoes, either caring for a family who has an anaplastic astrocytoma or they themselves do. They can help you learn from their experiences what you might expect. You can read more about each of them in this discussion:

– Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? http://mayocl.in/2e0InOQ

Spammy, do you live with or near your sister? How old is she if I may ask?

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Hi Colleen. Thank you for responding. My 4 other siblings and I all live in the same city. My sister, Pati just turned 65 a month ago.

@colleenyoung

Hi @spammy, welcome to Connect.
I’m sorry to hear about your sister, but glad that you found us here on Mayo Clinic Connect. I’d like to introduce you to other Connect members who have been in your shoes, either caring for a family who has an anaplastic astrocytoma or they themselves do. They can help you learn from their experiences what you might expect. You can read more about each of them in this discussion:

– Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? http://mayocl.in/2e0InOQ

Spammy, do you live with or near your sister? How old is she if I may ask?

Jump to this post

Hello @spammy – I am also sorry to hear about your sister. My daughter was also diagnosed was AA about 6 months ago. We live in Denver and can recommend a very good neurosurgeon at University of Colorado Anschutz Medical Center but I am not sure where you are living? I also noticed that you stated the tumor was inoperable? Have you got a second opinion on the original diagnosis?

@colleenyoung

Hi @spammy, welcome to Connect.
I’m sorry to hear about your sister, but glad that you found us here on Mayo Clinic Connect. I’d like to introduce you to other Connect members who have been in your shoes, either caring for a family who has an anaplastic astrocytoma or they themselves do. They can help you learn from their experiences what you might expect. You can read more about each of them in this discussion:

– Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? http://mayocl.in/2e0InOQ

Spammy, do you live with or near your sister? How old is she if I may ask?

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Hello @parker80138. Thank you for writing. I live in Illinois. She did not get a second opinion which I believe was a mistake. Siteman Cancer Center, which is associated with Barnes Hospital in St. Louis and about 90 minutes from our hometown, was mentioned for a second opinion, but was not pursued.
Did your daughter have surgery? I hope she is doing well. Is she going through radiation and/or chemo treatments? My sister had her 4th treatment yesterday. I guess this tumor has feelers (?) which is why operating is not an option. Without any treatments the DR said she could live weeks to months, with could be months to year(s). I’m discovering that so many important facts are not discussed with the patient or family. The handling of the chemo drug was mentioned by a visiting nurse. This same nurse told us certain fruits and veggies were a no no. I was hoping to receive some tips from this group. People who have already been down the road we are just beginning.
Have a beautiful day!!

@colleenyoung

I forgot to tag the other members in the message above. Please meet @parker80138 @trivon @121861 @kansastumor and @egee202 who also have experience with anaplastic astrocytoma.

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Look into research at Rush Medical Center of Chicaga. There is effort to zap tumor exclusively with shooting electrons into tumor reducing only to white dust. This is the only alternative to the 2 efforts open to your sister. Call them, why have you got to lose.@

@colleenyoung

Hi @spammy, welcome to Connect.
I’m sorry to hear about your sister, but glad that you found us here on Mayo Clinic Connect. I’d like to introduce you to other Connect members who have been in your shoes, either caring for a family who has an anaplastic astrocytoma or they themselves do. They can help you learn from their experiences what you might expect. You can read more about each of them in this discussion:

– Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? http://mayocl.in/2e0InOQ

Spammy, do you live with or near your sister? How old is she if I may ask?

Jump to this post

I think a second opinion is the smart and safe way to proceed. Depending on the location and the size of the mass there may be no safe way to resect the tumor but finding a good neurosurgeon and arranging to send him/her the MRI would provide you peace of mind that two specialists concur on the diagnosis.

My daughter is 34 years old and has had two surgeries to remove a 5.5cm mass from the left frontal lobe region. She had the initial chemo and radiation regimen and is about to start her 3rd monthly chemo treatment at 3x the dose she had during the post surgical treatments. This will last for 12-18 months. I hope your sister agrees to that second opinion soon but she will ultimately need to make that decision and everyone will need to accept her wishes and move forward. Best of luck!

@colleenyoung

Hi @spammy, welcome to Connect.
I’m sorry to hear about your sister, but glad that you found us here on Mayo Clinic Connect. I’d like to introduce you to other Connect members who have been in your shoes, either caring for a family who has an anaplastic astrocytoma or they themselves do. They can help you learn from their experiences what you might expect. You can read more about each of them in this discussion:

– Anaplastic astrocytoma: Can anyone recommend a great neurosurgeon? http://mayocl.in/2e0InOQ

Spammy, do you live with or near your sister? How old is she if I may ask?

Jump to this post

@spammy Should your sister wish to consider a second opinion from experts at Mayo Clinic, please call any of our 3 campuses, http://mayocl.in/1mtmR63. She will be offered an appointment within 48 hours. Be sure to tell her to mention the Brain Tumor 48-access program. They can help her navigate her healthcare journey and answer your family’s questions about treatment options.

I’m not aware of particular do’s and don’ts with regards to certain vegetables and fruits. Anyone else heard of this?

Hi Spammy, I was diagnosed with Stage 2 Anaphlastic Astrocytoma in 2002. I was not a candidate for surgery or radiation because of the extent of it and the location. I was in a clinical trial of Temodar. They told me it is not a matter of if it grows but when because this type of tumor always evolves into higher grade tumor. That has been 15 years ago now and it is stable. It has become less dense and smaller. I have some side effects of the chemo like headaches etc but otherwise doing well and working full time. You can do well too! Just keep a positive attitude! Good luck!

@myminnie

Hi Spammy, I was diagnosed with Stage 2 Anaphlastic Astrocytoma in 2002. I was not a candidate for surgery or radiation because of the extent of it and the location. I was in a clinical trial of Temodar. They told me it is not a matter of if it grows but when because this type of tumor always evolves into higher grade tumor. That has been 15 years ago now and it is stable. It has become less dense and smaller. I have some side effects of the chemo like headaches etc but otherwise doing well and working full time. You can do well too! Just keep a positive attitude! Good luck!

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Hi Minnie. Thank you for your note. My sister will get an MRI tomorrow to see if the radiation treatments and chemo has shrunk the tumor. We are hopeful 🙂

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