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Optic nerve sheath meningioma, worried about results 3 month checkup

Posted by hamillc2 @hamillc2, Jan 24, 2022

I just returned from Mayo Rochester for my three month checkup. I finished 6 weeks of proton radiation Oct. 4. My MRI last week showed it to be a bit larger and it absorbed a bit more contrast. Told me not to get too worried. I can’t rule out in my head that it is getting larger. At first I thought it might still be swollen, but they told me that would have gone away about 6 weeks after. I have to return in 6 months.

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Colleen Young, Connect Director | @colleenyoung | May 1 9:11pm
In reply to @santaflavia "hello again, if anyone has any input re: making a decision about whether or not to..." + (show)
@santaflavia

hello again, if anyone has any input re: making a decision about whether or not to have about 28 sessions of IMRT at Mayo v. at home (i.e. Froedtert in Milwaukee) I am still open to input. I sent out an email today to friends asking who, if anyone, would be willing to come up and stay with me for a week at a time so that my husband can keep working. (he could adjust his work so that he could come part of the time but not all of it) I was told that
I could not be in Rochester alone during treatment. Thanks.

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@santaflavia, one thing that might help your decision making might be where to stay. See this related discussion:
- Where to stay while having radiation at Mayo Clinic Rochester?https://connect.mayoclinic.org/discussion/lodginghousing/

The American Cancer Society Hope Lodge program provides a free home away from home for cancer patients and their caregivers. It also offers friendship and caring. (My father-in-law brought his guitar when he stayed at Hope Lodge during his treatment and was a hit among the fellow residents.)
https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge/rochester-mn.html
There are also Patient Navigators in Rochester who can help: cecptnavigator@mayo.edu Phone: 1-507-266-9288

I hope a friend can accompany you.

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santaflavia | @santaflavia | May 3 11:31am
In reply to @colleenyoung "@santaflavia, one thing that might help your decision making might be where to stay. See this..." + (show)
@colleenyoung

@santaflavia, one thing that might help your decision making might be where to stay. See this related discussion:
- Where to stay while having radiation at Mayo Clinic Rochester?https://connect.mayoclinic.org/discussion/lodginghousing/

The American Cancer Society Hope Lodge program provides a free home away from home for cancer patients and their caregivers. It also offers friendship and caring. (My father-in-law brought his guitar when he stayed at Hope Lodge during his treatment and was a hit among the fellow residents.)
https://www.cancer.org/support-programs-and-services/patient-lodging/hope-lodge/rochester-mn.html
There are also Patient Navigators in Rochester who can help: cecptnavigator@mayo.edu Phone: 1-507-266-9288

I hope a friend can accompany you.

Jump to this post

Thank you Colleen. Yes, where to stay and who to stay with you as well....
I am quite "COVID" conscious, still, and so a congregate setting like the Hope Lodge with a shared kitchen is a bit scary for me as I also have Chronic Lymphocytic Leukemia and Small Cell Lymphoma which makes me more susceptible to infections.....I am taking two targeted therapies for CLL/SLL at this time and I have been told that I will have to quit those medications during the radiation treatment.....so, being immune compromised, I probably would be more comfortable someplace with an ability to cook in my room although I would miss out on the company and support of the Hope Lodge. Thank you for bringing this up.
My husband would be able to stay with me part of the time and I am trying to line up women friends who would be able to be with me the rest of the time. Thanks.

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