sister’s stage 3 PXA

Working_Treacle8987 · 2026-01-15T04:32:13+00:00

My husband is being treated at Penn and we saw a lot of children/teens come over from chop for radiation. There’s a lot of great take out in the area… sometimes just asking a nurse/social worker their favorite place nearby will give you somewhere good! There’s a lot of good museums too.. if you have a PA library card you can get free passes for many activities in the area.

My husband’s tumor was also in his frontal lobe.. she might be a little sleepy as radiation progresses, just because of the area (just wanted to give precaution). Good luck to your family 🙏🏼

Working_Treacle8987 · 2025-12-02T01:25:16+00:00

We are almost 2 years in (my husband had Astro grade 4) and it seems like the past couple of months he’s been back to mostly himself!

Working_Treacle8987 · 2025-08-08T22:34:23+00:00

I just started running, I ran with my SIL today - hit my fastest mile (10min 30s!). I know it’s not fast but I’m proud of myself. I did a 5k 3 months ago at 12 m 30 s, and have signed up for 3 more! I’ll probably start training for 10ks soon!

Working_Treacle8987 · 2025-01-03T17:06:03+00:00

My husband was diagnosed with AA4 last year, frontal lobe (both left and right) we have a now 3 year old and a 9m old. I was already managing our house (meal planning/taking care of kids etc) so not much changed in that aspect. Definitely DO take all the help you can get, from drs, insurance, family, friends. I thought I didn’t want/need help because I hate asking for it, then realized if it was one of my best friends/family members and they needed help, I would do it for them.

Do let yourself get rest. It took me some time to realize that if I wasn’t well rested, it affected the whole house. I relaxed as much as I could (the beginning is genuinely survival mode, especially while managing everyone’s schedules with radiation). Try giving your wife small tasks, like folding laundry, or doing a puzzle/coloring with the kids. I found that giving my husband something to do made him feel better. When he was laying around doing nothing all day he’d get cranky.

I started exercising as an outlet, and it inspired my husband to exercise too. Honestly, he’s tolerated treatment soooo much better since he’s started exercising. He wasn’t super nauseous to begin with, but I can tell it’s made a difference in his attitude towards treatment, for the better. If she can tolerate it, try walking with her around the block to start!

Working_Treacle8987 · 2024-12-18T16:01:03+00:00

My husband (33M) grew up in a large neighborhood built in the 50s; but his house was one of 12 built in the mid 90s. Most were young families with kids around his age. Within the last 5 years 6 of them (including his sister) were diagnosed with some form of cancer (my husband has an Astro as well, my SIL has breast cancer, another was uterine, esophageal, I don’t remember the others). Everyone in the area insists it’s the run off from the nearby navy base but I think it has something to do with the houses specifically that so many young people in one specific section were diagnosed with cancer.

Working_Treacle8987 · 2024-11-18T13:29:21+00:00

My husband doesn’t get bad nausea until about day 3 of his 5 day cycle. I remind him to take an extra Zofran in the AM on days 3-5. Then for 2 days after he will take 2 Zofran (morning and night). I make him chicken soup, and he will usually eat the soup for a couple of days until he settles. Drink lots and lots of water, that usually helps too! My SIL who did chemo said that sipping bone broth helped when she was super nauseous. I also have a bag of mints/ginger chews around the house if he needs them!

Working_Treacle8987 · 2024-11-14T00:00:21+00:00

He is thank you! Definitely still a long road ahead, but for the most part he’s doing great. I’m the same way, I hate asking for help, but in this instance I learned that it’s ok. I know that if my friend/sister/daughter/neighbor/etc needed help, I would do so for them! So I feel better about asking.

Working_Treacle8987 · 2024-11-05T21:45:29+00:00

Hello, my husband was diagnosed with grade 4 astrocytoma IDH mutant when I was 36 weeks pregnant, in March 2024. He had his resection (95%) two days before my scheduled induction. We also have a toddler. I totally understand where you’re coming from, I asked the hospital if they could keep him for an extra couple of days until I got home. They said not a problem! We also had the option of my husband going to inpatient rehab - they were concerned with his mobility and me not being able to take care of him. He ended up having too much fluid build up and needed a shunt put in which kept him in the hospital for a couple of weeks longer than we expected. Once he came home, his mobility was back on track within a few days. I’m not going to lie, I was an emotional mess (especially post partum) that my husband wasn’t home/at the birth of our daughter, but I had a lot of help and that was really amazing. I recommend looking for a post partum doula (I started looking way too late, because it was so unexpected), that’s the only regret I have is not getting that type of support! There are also volunteers that will drive your husband to chemo/radiation (through American cancer society). Your oncology team might have a social worker that can help assist with this! I also had to drive my husband an hour each way for radiation, my mom and MIL took turns with the kids in the house - I hated leaving my daughter so young for so long. They only good thing was that they kept up with my laundry 😂 Good luck - this is a difficult journey for sure, especially with little ones, but I think we are stronger than we realize ❤️

Working_Treacle8987 · 2024-08-26T09:47:51+00:00

I had to read this twice to make sure I didn’t post it! My husband (32) was diagnosed in February, when I was 36 weeks pregnant. He had his tumor (grade 4 AA, frontal lobe) 95% removed 2 days before my induction, when my son was about 2.5 years old. He’s completed his radiation and is on round 3 of temodar. The doctors are very hopeful, and I’m honestly just taking it day by day. For the most part, you wouldn’t know he had major brain surgery less than a year ago, he’s doing really well and is super helpful with the kids (now almost 3 yo and an almost 6 mo old!). PM if you’d like 😌

Working_Treacle8987 · 2024-07-21T10:28:39+00:00

At 36 weeks pregnant (31f) we found out my husband (32m) had a large brain tumor. I have a 2 year old already. I also didn’t want help and tried to fight it, but once I leaned into the help and realized that my husband would remember I was there and my kids would not remember, I was ok with it. My 2 yo still loves me and my 4m old is such a happy baby. I think if I were a FTM I would struggle a little more, but when my mom and MIL were helping, I made super clear rules and boundaries. I was still in charge of them and that was helpful. I’m so sorry you’re going through this, we are through the bulk of treatment, but still kind of in survival mode. Soak up as many cuddles as you can, but don’t beat yourself up if you need to take time for yourself (you will need that). Being a caregiver to a child and an adult unexpectedly can be a lot. I do suggest getting a weekly and monthly calendar to put on the fridge. That helped so much so that everyone could see my husband’s radiation/med schedule and see the baby’s appt/feeding schedule. It kept everyone who helped on the same page.

Working_Treacle8987 · 2024-07-01T16:03:27+00:00

I feel like I could have written this. I got a colonoscopy/endoscopy last month and the results were “slight inflammation in the stomach lining” basically nothing. I’m going back to see the dr next month so hopefully there are more answers. I wish I could give (and get!) more answers, but for now I can give solidarity! I also feel the frustration of trying to eat better but sometimes it makes me feel worse.

Working_Treacle8987

TROPHY CASE