Grade 3 astrocytoma

Hi Tango Boy, Alex here - you’re among friends, and we’re here to help or just chat

I also have an astrocytoma (stage 4), and after a craniotomy, chemo and radiotherapy in 2022, I’m stable for now, and happy living day to day. How are you doing with the chemo? Hope you can hang in there. Let us know if you have any questions about it (I’m not medically trained, so I only have lived experience)

‘A bit lost’ sounds about right - I feel for you x. Not working sounds good, if you can. But it’s hard to find a balance between resting and doing things you enjoy. You’ll work it out but don’t push yourself. Don’t see friends if you don’t have the energy - they can wait, just find what works for you and honestly, put yourself first. I did, and its been really helpful

MacMillan is a good idea - whether you need medical questions, advice, or just someone who understands, this place has been great. I hope you find what you need,

sending a hug and my best wishes, Alex xxx

Hi Alex thank you very much for your reply it really means a lot to hear from other people that have sadly been through this experience I'm glad your stable with the grade 4 and hope it stays that way for you 

I have not started chemo yet I have nearly finished my 6 and a half weeks of chemo which on its takes it out of you then I'll be getting a MRI to check how the treatment has gone

Thank you Alex hope you enjoy your evening 

Regards

Kalliff

HI Tango boy

a warm welcome to the online community. Sorry to hear about all that you're going through.

Feeling a bit lost is perfectly normal. You've gone through a lot in a short space of time and it takes time to process it all. Plus the craniotomy is major surgery and that too takes time to recover from. I supported my late husband through the 3 years of his Glioblastoma journey and he too had a craniotomy followed by radiotherapy. Fatigue was the main side effect of the radiotherapy for him and it kicked in about week 4 of a 6 week treatment regime. The fatigue lasted for about a month after the treatment finished. I'm not trying to scare you by saying all of this. I'm trying to highlight that its ok not to be back to your A game here.

As Leeluu says, you'll work it out and please don't push yourself too hard here. Listen to your body.

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen as you've already seen, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

For now I'm sending you a huge virtual hug and lots of positive energy

love n hugs

Wee Me xx

Hi Tangoboy.

I also have an Astrocytoma which was diagnosed and treated in 2017/18 with surgery/radio and chemo. It’s pretty gruelling and you feel like nothing will ever be normal again but it will - it’ll be different but you’ll find a new normal. I took time off with my infant children whilst I recovered and eventually went back to work part time. I worked for about 3 years part time and then retrained as a dog groomer and set up my own business early this year. Unfortunately, during my six monthly scan in July, it has shown some inoperable recurrence in the original cavity plus another small growth in another area so I’ve been back on TMZ since then. Mid treatment scan has shown it hasn’t stabilised so I’m going into a different type of chemo and researching immunotherapy to see if there’s anything else we can do to stop it. Scary times but if I can get through this then I know there’ll be another “new normal” on the other side. I have no physical symptoms, I did a body pump class last week and I’m still dog grooming 3-4 days a week when I’m not on chemo. I promise life goes on but for now, take it one day at a time…the first step, not the whole staircase xxx

Hi Alex,

Can I ask what chemo you had - were you grade 4 from diagnosis? 

Thanks

Claire x

Hi Claire, I’m sorry to hear things have gone back to scary times, and I’m really hoping the new normal is waiting for you at the end. 

I took TMZ too, during the radiotherapy and for a series of adjuvant chemo for the next 6 months. I was diagnosed with grade 4 from the start, and originally my tumour was originally termed a GBM, but has since been reclassified because of an IDH mutation. 

The immunotherapy sounds really interesting - it seems like there’s a lot happening in the field right now, and clearly you’re young which helps. Keep us posted,

Alex xx