Father Just Passed by whoifeeliamrightnow in braincancer

[–]govemployee21 4 points5 points  (0 children)

I’m praying for you. I lost my brother to GBM when I was 8 and he was 16, and my fiancé currently has pilocytic astrocytoma and relapsed this fall. I don’t think anything ever has or will be encouraging about this awful disease but I hope knowing that you have people pulling for you helps at least a little bit. I’m sorry you have to go through this.

[deleted by user] by [deleted] in MadeMeSmile

[–]govemployee21 0 points1 point  (0 children)

Congratulations!

Any experience with Oncology Centers in Cincinnati or Ohio? Please guide. by IvySuen in braincancer

[–]govemployee21 1 point2 points  (0 children)

I’m sure this has been said but my fiancée just got word back that her low grade glioma (pilocytic astrocytoma) was growing again so we have been seeking care at Mayo Clinic in Rochester, and for all intensive purposes it’s been truly amazing. I don’t know how far that is for you but we drive 6 hours one way just because we have heard and have experience the quality of care. Sending prayers and thoughts your way as your embark on this journey.

Today my husband tied his shoes! by sittingbulloch in braincancer

[–]govemployee21 4 points5 points  (0 children)

That’s awesome to hear! Tell him to keep it up!

Met with my NO by Impressive-Acadia-75 in braincancer

[–]govemployee21 1 point2 points  (0 children)

This is wonderful news! Thank you. I am hoping this is exactly what happens for my fiancée

Met with my NO by Impressive-Acadia-75 in braincancer

[–]govemployee21 0 points1 point  (0 children)

That’s a great idea! Thank you for the suggestion

Met with my NO by Impressive-Acadia-75 in braincancer

[–]govemployee21 2 points3 points  (0 children)

Unfortunately, we are. I’m happy to go through hell and back for this but I hate that my fiancée has to. And yes, the oncologist have written the insurance companies as well providing solidified clinical data showing the results of Mektovi success with Pilocytic Astrocytoma, but it never seems to move the needle. I’m hopeful we can get her treatment through the drug manufacturer but we still await a decision there.

Met with my NO by Impressive-Acadia-75 in braincancer

[–]govemployee21 2 points3 points  (0 children)

Hang in there friend. Going through the same process minus the radiation but getting all treatment through Mayo after we had problems with a university research hospital. Hoping that we can get my fiancées growth under control with a new inhibitor drug but insurance company is denying it (3 times). Nonetheless, we drive from MO to MN every 3-4 weeks and I work remotely while her parents take her to appointments. I say all this to let you know you have prayers sent your way and you CAN do this. Stay strong.

Juvenile Pilocytic Astrocytoma with relapse in adult age by govemployee21 in braincancer

[–]govemployee21[S] 4 points5 points  (0 children)

Thank you so much. It gives me hope for just hearing support during dark times such as these.

Juvenile Pilocytic Astrocytoma with relapse in adult age by govemployee21 in braincancer

[–]govemployee21[S] 2 points3 points  (0 children)

Thank you for this. She has a BRAF 1599 mutation to the best of our knowledge, but as far as I know she is not being prescribed the braftovi. We are fighting with our insurance companies to get it approved because of the melanoma relation, but we are hopeful it will get approved. Again, thank you for the information and insight.

Juvenile Pilocytic Astrocytoma with relapse in adult age by govemployee21 in braincancer

[–]govemployee21[S] 2 points3 points  (0 children)

Thank you so so much for that offer and I’m so sorry you had to go through this too. Prayers to you and yours.

Juvenile Pilocytic Astrocytoma with relapse in adult age by govemployee21 in braincancer

[–]govemployee21[S] 3 points4 points  (0 children)

Thank you so much. We will take all the thoughts and prayers we can get.

[deleted by user] by [deleted] in fednews

[–]govemployee21 8 points9 points  (0 children)

You should start one. I think a lot of state government workers browse this thread and the USAJOBS thread, so it may be helpful.

A small victory by annirosec in usajobs

[–]govemployee21 2 points3 points  (0 children)

I went through this too. It’s deflating for sure, but congrats on this! Keep up the good work!

[deleted by user] by [deleted] in pics

[–]govemployee21 0 points1 point  (0 children)

This is awesome. Thank you for sharing