Recent MRI shows inflammation of hypothalamus: Oncologist away

Posted by zachary777 @zachary777, Jul 12 10:19pm

Hi! I am a 20 y.o. Who was diagnosed with Langerhans’ Cell Histiocytosis when I was 2. I’ve gone through chemo and remission and my most recent remission was a couple of years ago when I stopped treatment. My recent MRI was mainly the same but they found increased thickening/inflammation of the hypothalamus. My lesions were here and in the pituitary before. I have panhypopit. The lesions abuts the optic chiasm. My oncologist is on vacation so I don’t know when I’ll hear back. I have been having increased dizziness and am always hot and gaining weight. Should I be worried about this?

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mcharlesfrancis | @mcharlesfrancis | Jul 13 7:30am

Since your oncologist is away, I would not wait indefinitely. I would call the office and ask to speak with the covering oncologist or nurse practitioner. Explain that:

Your MRI shows increased hypothalamic thickening/inflammation.
You have a history of LCH involving the hypothalamus and pituitary.
You have panhypopituitarism.
You're experiencing increasing dizziness, feeling unusually hot, and weight gain.

If you develop vision changes, severe headache, vomiting, confusion, extreme sleepiness, fainting, or worsening dizziness, I would seek urgent medical evaluation rather than waiting for your scheduled appointment.

I hope you're able to speak with someone from your oncology team soon. Please keep us updated, and I'm wishing you the very best.

Colleen Young, Connect Director | @colleenyoung | Jul 25 2:43pm

@zachary777, were you able to discuss the recent MRI with your oncologist?

zacharycat | @zacharycat | Jul 26 9:22am

Trying to contact your doctor in July or August is often difficult. I’ve sent messages that are usually answered by a nurse saying they will get back to me later. Then they contact the doctor, who replies with information that you probably already knew. Speaking at least of my hospital they often treat emergencies in summer and schedule more complicated treatments for September.

zachary777 | @zachary777 | Jul 26 10:53am

In reply to @colleenyoung "@zachary777, were you able to discuss the recent MRI with your oncologist?" + (show)

@colleenyoung I did but they didn’t say much as @zacharycat predicted. They said to keep everything the same and monitor and do repeat MRI in 6 months.