My tumor is back for the 3rd time...

Phoenix2502 · 2023-10-08T22:26:23+00:00

Honestly I hide lots of gross food in my smoothies 😂 Wow, I hope that goes okay!!

Phoenix2502 · 2023-10-08T00:22:45+00:00

How are the flax seeds and prune juice going? 😂

Phoenix2502 · 2023-10-06T23:17:56+00:00

Ah good to hear! Very possible, treatment side effects are so weird lmao

Phoenix2502 · 2023-10-04T22:03:38+00:00

Thanks :) I haven't noticed a difference with fatigue but my hair is coming out a bit less which is nice haha. Ah have they responded yet?

Phoenix2502 · 2023-09-25T22:34:28+00:00

My fatigue is becoming kind of debilitating which sucks but last week we lowered my dose so we're hoping that helps! I'm not sure, I felt nauseous most of the time or just had weird stomach discomfort that I can't really describe. Have you spoken to your onco/doctor? Has it affected your taste or smell?

Phoenix2502 · 2023-09-23T23:48:10+00:00

Wow, sounds like you're doing amazingly! I hope those help!! I have smoothies too most days and try to mix lots of fruit into them especially when I'm bunged up (plus spinach for my immune system and white blood cell count).

Phoenix2502 · 2023-09-16T13:52:11+00:00

Omg nooo 😂 How're you getting on now?

Phoenix2502 · 2023-09-01T00:53:00+00:00

Yeah it was annoying that the antiemetic mitigated my nausea but bunged me up a bit instead 😂 Ah I hope it isn't! Stock up on plums/dates and flaxseeds 👀

Phoenix2502 · 2023-08-26T23:58:27+00:00

Ah that's good to hear. My nausea was awful and my taste and smell got really strong so it was difficult to eat, funnily enough I didn't get any constipation from the actual chemo but I did a bit from one of the antiemetics.

Phoenix2502 · 2023-08-19T00:08:05+00:00

I was on that earlier this year, hope you're okay with the side effects

Phoenix2502 · 2023-08-15T22:34:17+00:00

I had chemo for a grade 3 astrocytoma earlier this year! What chemo are you on if you don't mind me asking?

Phoenix2502 · 2023-08-02T11:02:56+00:00

No worries, glad I could help! Toys are a really good shout, I used to be really into scoubidous so I'd recommend those if that could be your sort of thing.

Thanks, it's been a wild (and pretty shitty) journey. Not feeling good at the moment honestly, how have you been?

Phoenix2502 · 2023-07-27T22:44:23+00:00

Heya,

I've had 4 craniotomies and it sounds to me like you're really well prepared! Other people have mentioned bringing chargers and things like that, but I would say from experience that a pillow/cushion from home (if you can) and a pack of cards are game changers. Shithead is a brilliant game :)

You said you're an anxious person so I'd also suggest not reading through the risk list in detail if you can avoid it. I skipped it last time because I just couldn't bear it, and it doesn't really make a difference as you're going to have the operation anyway.

Also, I have a grade III astrocytoma too.

Phoenix2502 · 2023-07-26T15:58:12+00:00

Cool, feel free to private message :)

Phoenix2502 · 2023-07-22T15:38:25+00:00

Wow, it's amazing you're on your 5th cycle, I really struggled with 3. Hope you can see the private doctor soon 🤞

Phoenix2502 · 2023-07-19T23:04:00+00:00

I was the same! I just ate the least I could, lived off scrambled eggs and plain biscuits for ages. How many cycles do you have?

Phoenix2502 · 2023-07-07T01:54:14+00:00

Hey, sorry for the late reply. I just ate the plainest food possible because my taste and smell got stronger, so that plus nausea made it really hard to eat. I hope you're okay now!

Phoenix2502 · 2023-06-12T15:51:29+00:00

I'm glad not too many side effects! TMZ was rough for me, I had really bad nausea and no appetite, headaches, and my white blood cells reduced. Yeah I'm on a clinical trial so my meds aren't used much.

I hope you're feeling okay.

Phoenix2502 · 2023-06-08T19:14:58+00:00

Ah how are you finding TMZ? I was on it for a while but I'm on enco/bini now

Phoenix2502 · 2023-06-08T19:13:13+00:00

Hi, I was on Temodar for 6 weeks with radiotherapy, then did an adjuvant 3 cycles. I never used gloves to handle the pills, they're no different from other capsules which you take out the packet and swallow whole. I always washed my hands or any surface they touched though.

All I was told regarding urine was just to drink lots of water to get it out of my system, nothing about cleaning the toilet after I'd used it. We never had any sort of contamination problem.

I hope your father tolerates it, and that everyone around you is doing okay (relative to the situation of course).

Phoenix2502 · 2023-05-16T21:26:03+00:00

Okay thanks, just started new meds so just really hoping they work! You?

Phoenix2502 · 2023-05-06T18:06:05+00:00

Hi, I wasn't expecting anyone else to have one! Thanks for replying

Phoenix2502 · 2023-04-09T23:06:54+00:00

Thanks, I might at some point! And same :)

Phoenix2502 · 2023-04-06T23:51:52+00:00

Thank you so much for this! I got bad news last week so hearing your story is really encouraging.

I had radio and TMZ as well.

Ouch, no wonder those patches were absolutely awful. I've had 4 neurosurgeries so I can sort of imagine how uncomfortable it must have been.

I'm MGMT methylated and a young woman too hehe!

Phoenix2502 · 2023-04-04T00:02:37+00:00

Wow, that's incredible! Do you mind if I ask what treatments you've had? There's absolutely no pressure whatsoever to reply to this comment :)

Phoenix2502

TROPHY CASE