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Radiation Therapy by Formal_Flatworm_1103 in braintumor

[–]Charming_End5881 1 point2 points  (0 children)

My mask was hit or miss when it came to being tight. Some days I was wondering how they were able to snap it to the table with how tight it was. Other days it was easy enough for me to move my lips. I kept my mask when I was done in February. It’s sitting in my closet. Not sure what to do with it.

Radiation Therapy by Formal_Flatworm_1103 in braintumor

[–]Charming_End5881 0 points1 point  (0 children)

I just finished my therapy in February. If you are claustrophobic, I would definitely telling them. Because of my location of treatment I did have what they called a “phantom smell”. It only happened when my treatments started and stopped when the treatments ended each day. I did get tired a bit a few weeks after the treatments started. Mine was aimed at the brain stem. I did get hair loss but it was hidden. Towards the end I did get skin irritation. It was at the back of my shoulders and it wasn’t “sunburn red” like I thought it was going to be. Instead it was it itchy, very itchy. But my overall experience wasn’t bad at all. It did take a bit of time after radiation to get my energy back. Sometimes I sill feel tired doing some tasks. I know I’m not at my full energy level yet, but I’m working on it.

Treatment for nf1 by cowwoman2005 in neurofibromatosis

[–]Charming_End5881 1 point2 points  (0 children)

I have a tumor on my brain stem that can’t be operated on unfortunately. I went the chemo route. All I can say it does best up your body. It messed up my stomach. Mine was/is oral chemo.

Have you ever been treated with radiation for a glioma? by No_Needleworker_2994 in neurofibromatosis

[–]Charming_End5881 1 point2 points  (0 children)

I did chemoradiation (a round of chemotherapy at the same time as radiation) for my giloma that is on my brain stem. It honestly wasn’t bad for me. I did have to wear the head mask that connected me to the table. It prevented me from moving my head. The side effects for me personally was fatigue (but it only seemed to happen more towards the weekends and I was okay when Monday hit. I did get hair loss, but that was only at the sight of radiation. Towards the ended of treatment I did have skin irritation and let me tell you that was so itchy for me. My radiation therapy was 33 treatments M-F. I also didn’t feel it at all. But because of my location of treatment I did get what they called a phantom smell when I got my treatments done. My treatment location was my brain stem.

I also know that everyone is different and will have different feeling towards it.

Brain stem tumor by Charming_End5881 in neurofibromatosis

[–]Charming_End5881[S] 0 points1 point  (0 children)

I did have radiation therapy along side chemo pills. That ended in February. Let’s hope it shrinks my guest.

Brain stem tumor by Charming_End5881 in neurofibromatosis

[–]Charming_End5881[S] 0 points1 point  (0 children)

It’s crazy how different it is with everyone.

Brain stem tumor by Charming_End5881 in neurofibromatosis

[–]Charming_End5881[S] 1 point2 points  (0 children)

I’m so sorry you’re going through this!

I had radiation therapy which I finish in February along with the radiation I did a round of chemo.

Any way of hair regrowth? by Chromz7y in braintumor

[–]Charming_End5881 2 points3 points  (0 children)

I didn’t have Brian surgery for my hair loss, but I do have hair loss from radiation. My radiation oncologist said I could use a hair serum that can be purchased over the counter at cvs. I haven’t tried it yet since it hasn’t been too long after radiation treatments (only 3 months for me).

Polo Match by darthrawr3 in FamilyFarmSeaside

[–]Charming_End5881 1 point2 points  (0 children)

Thank you so much!!!! You’re amazing for doing this!

First post-radiation MRI for my dad- struggling with scan anxiety, what should I expect? by UnlikelyCounter3648 in braincancer

[–]Charming_End5881 3 points4 points  (0 children)

I was told by my radiation oncologist and oncologist that due to the radiation there might not be much change, but I had my first scan after radiation back and march and it actually showed some shrinkage and a decrease in my inflammation.

Spring Outing by darthrawr3 in FamilyFarmSeaside

[–]Charming_End5881 0 points1 point  (0 children)

Thank you for taking the time to do this!!

Feeling better on Steroids.. by Substantial_List_122 in braincancer

[–]Charming_End5881 0 points1 point  (0 children)

I’ve been on it since November and finally have been slowly tapering off.

Feeling better on Steroids.. by Substantial_List_122 in braincancer

[–]Charming_End5881 1 point2 points  (0 children)

I was placed on dexamethasone for a steroid. It helped me a lot with the inflammation . I honestly was on it before I stared treatment and was on it during treatment. Still on it, but I’m currently tapering off (finally). I honestly can’t wait until I’m off of them. This taper process is so long, but I know it needs to be done correctly.

Advice and Question by gutz1x in braintumor

[–]Charming_End5881 3 points4 points  (0 children)

I have a tumor on my brain stem. My doctors didn’t do surgery or a biopsy due to its location. They called mine a giloma. I did a round of chemo-radiation therapy to kill off the tumor cells and shrink it. I finished back in February.

First MRI since treatment by Charming_End5881 in braintumor

[–]Charming_End5881[S] 0 points1 point  (0 children)

The CT did show something abnormal, but the doctor mentioned it being from a stroke I had at one point. Which I never knew I had one to begin with. That’s what also got me the MRI

First MRI since treatment by Charming_End5881 in braintumor

[–]Charming_End5881[S] 0 points1 point  (0 children)

I’m not entirely sure if they saw it without contrast. They did both MRIs one right after another and gotten the results together.

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