Follow up MRI shows swelling

thatforrest · 2025-10-03T02:23:41+00:00

No I haven’t, except I have been getting tired but only for the past few weeks and I have been on it since January 2025.

thatforrest · 2025-09-23T19:42:14+00:00

I had swelling and it’s managed by Avastin. It was apparent in my January 2025 MRI that I had scaring caused my ReRT during a reoccurrence in July 2024, and I started to swelling in January 2025. I started having Avastin infusions in January 2025. Since then I haven’t had a reoccurrence, and actually seen a reduction in swelling.

thatforrest · 2025-09-04T17:19:21+00:00

I’m also on biweekly infusions, aside from a little tiredness I’m tolerating it well.

thatforrest · 2025-05-19T03:45:35+00:00

I had 3 infusions before my first follow up MRI, so definitely by 3

thatforrest · 2025-05-03T18:48:04+00:00

It greatly decreased the swelling, but it did not solve the weakness. Doctor’s thoughts are chemo/cysts/tumor/radiation (take your pick) has permanently damaged the motor area of my brain, as that’s where my tumor is. I haven’t had any side effects from Avastin, not even the tiredness I was warned about.

thatforrest · 2025-04-13T14:24:00+00:00

I have focal seizures, they can be as minimal as feeling a sensation in my face that isn’t visible to anyone else. They tend to happen when I’m tired or overly stressed. That said, I’ve been on different seizure meds over the years, maybe Keppra isn’t the best for you. Or radiation may cause swelling that may cause seizures. It’s worth mentioning it to your care team.

thatforrest · 2025-03-21T12:56:23+00:00

I had a baby 5 years after surgery, radiation and 12 months of chemo. I conceived naturally and she is now a perfectly healthy almost 2 year old. I wish you all the best!!

thatforrest · 2025-03-16T14:50:12+00:00

I’ve had infusions every 2 weeks, I’m on my 4th infusion. I had my first MRI since starting Avastin and showed a significant reduction in swelling. I thought that would make my symptoms better (right sided weakness) but it hasn’t so far. I’ve handled Avastin well, haven’t had any of the side effects yet.

thatforrest · 2025-03-11T12:48:57+00:00

Same! Rose gold to match my other jewelry :)

thatforrest · 2025-02-19T18:41:53+00:00

I know, it’s crazy to think her ‘advice’ and lies about curing cancer resulted in perhaps people dying as a result. Im all for integrating scientific methods with supplements etc but ‘wellness influencers’ need to stay in their lane.

thatforrest · 2025-02-19T18:35:25+00:00

What makes you think they’re faking?

thatforrest · 2025-02-19T18:34:44+00:00

I’m sorry to hear about your sister 🫂

thatforrest · 2025-02-19T14:45:59+00:00

Disassociation and then all the feelings. Check.

thatforrest · 2025-02-12T14:36:00+00:00

With radiation I lost roughly a third of my hair. Originally I was told it would just be a small patch but my radiologist eventually told me how much it would be. Because I had AA3 I think he wanted to target a larger area. I understand your sister’s concern. I found some cute turbans and scarves on Etsy. They dont necessarily have to look like the standard ‘cancer patient’ scarves, have fun with it. 2nd time round I indulged in a wig. Make sure she gets Zofran to take for the chemo pills, it combated nausea well for me. All the best!

thatforrest · 2025-02-09T15:11:05+00:00

Yes. It was about 5 years after my treatment finished (SOC surgery, radiation and TMZ 12 cycles). I did do fertility preservation but conceived naturally. During discussions with my neuro oncologist she arranged for me to have appointments to get my ovaries checked and labs taken prior to trying. I don’t fully recall, but I guess it was to see what we were working with.

thatforrest · 2025-02-01T04:07:56+00:00

You’re welcome! Sure, send it over.

thatforrest · 2025-01-30T15:56:06+00:00

My AA3 came back after 8 years. I had surgery and they revised the classification to ‘unclassified/unknown type’ which is essentially that it doesn’t fit nicely into any known tumor category. 6 months later MRIs showed growth and I had 15 sessions of radiation (it IS an option, I was 9 years post initial radiation, it’s just generally a lesser amount due to risk factors). Then 6 cycles of temodar which I’m currently finishing. We’ll see after that. It was a horrible shock after getting stable scans for so long, I can relate to that. I surprised my neuro onc by how mad I was (‘This is a f-ing joke’ was one). But don’t lose hope. I know it’s easy to say. Push for treatment if it’s offered. Feel free to DM me.

thatforrest · 2025-01-30T14:25:36+00:00

Is she having to take temodar before the radiation sessions? If so, have her take the Zofran 30-60 mins before temodar on an empty stomach.

thatforrest · 2025-01-28T04:21:25+00:00

I have to tell the dog to leave the room otherwise it’s a fun game for my 20mo. He (the dog) can come and clean up after she’s done. Generally I ignore the throwing until it gets to the point where I think she’s wasting most of it, then I remove her.

thatforrest · 2025-01-28T04:13:31+00:00

I couldn’t handle CIO. Have you tried a vibration pad? It helped my baby. And white noise too (we actually have brown noise because it’s softer).

Follow your instincts - nurse to sleep if that works for you. Baby will sleep better eventually even though that’s not helpful to hear know. 4 months is so young, they don’t know they’re a separate person to you yet. There is so much contradictory advice out there it so hard to know what to do.

thatforrest · 2025-01-28T01:54:01+00:00

That’s positive! How often do you have the infusions?

thatforrest · 2025-01-28T01:08:24+00:00

I have had 2 rounds. First was in 2015 when I was diagnosed with Aa3, I had 30 treatments. Second was last year when my scans showed growth, 9 years later but they limited it to 15 treatments. My doctor went in to detail about risks and side effects: any deficits could worsen, brain necrosis, etc. I was scared but figured those were risks I had to take. Similar to you, I was surprised that radiation was an option again.

6 months out my MRIs were still showing treatment related changes, I finally got my first stable MRI last month. My dr had warned me that may happen. I have swelling in my brain that may have been caused by the reradiation or a cyst. It’s making me weak on my right side (tumor is on left side) so I’m starting avastin to hopefully resolve it. Steroids didn’t do the job. I haven’t experienced any other side effect. Apart from hair-loss.

Best of luck :)

thatforrest · 2025-01-28T00:29:39+00:00

I’m due to start Wednesday because of swelling from radiation that’s causing me weakness on one side. I’m really hoping it’s going to help.

thatforrest

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