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I was diagnosed with a right frontal lobe oligoastrocytoma (grade II) back in 2013, when I was 26. This was treated through surgery alone. I then had regular MRI scans and unfortunately a recurrence was spotted in the same place in March 2015. After another six weeks of watching and waiting, a further scan showed that the recurrence was actively growing, so my surgeon removed all visible tumour again in May 2015. The biopsy showed that it had transformed into an anaplastic astrocytoma (mixed grade 3 and 4) and would need immediate 6 weeks of radiotherapy with combined chemotherapy (oral temozolomide) and then six further cycles of temozolomide - I currently have one left to do. So far, all MRI scans have very thankfully shown no residual or visible tumour, so it is all under control in there at the moment.
I did lose quite a lot of hair from the radiotherapy (I didn't choose to shave it off though, it's growing back nicely now), and it made me feel tired and sick for a couple of weeks after the actual treatment sessions had finished - my oncologist readjusted my steroid medication and that sorted it out. Otherwise, I've found the temozolomide bearable - I take it just before bed time on an empty stomach, and I only threw up once (and that was more down to the radiotherapy, I think.)
Keep using this site, it's brilliant, but also check out www.brainstrust.org.uk, a small charity specifically aimed at people affected by brain tumours.
Remember to look after yourself in the position of carer and ask for help when YOU need it too x
Feel free to send a personal message to me as well.
Hope things are moving in the right direction. This too, shall pass. x
Hi all I to have an anaplastic oligoastrocytoma grade 3 , I was diagnosed sept 10th 2015 after craniotomy results,
Both me and my surgeon were surprised by this we was expecting a low grade, but hey ho you get what you get I have finished my 33 fractions of radiotherapy 5.5 weeks ago and still get quite tired but on the whole didn't find the experience to bad and had no side effects except hair loss on the one side , I have not had any major seizures and got through without any steroids , I am seeing my oncologist next week to discuss chemotherapy , This I am not looking forward to but like everything they through at us I will suck it up and get on with it because this thing is not changing who I am xx please feel free to message me if any of you would like to chat x
Thank you for your reply! Great news on the MRI scans :)
Were you on steriods since the op or was it during the radiation? My partner is due to start his radiotherapy next month!
Thank you so much for your help and advice, it is really helping me cope speaking to people who have been there, so I genuinely appreciate your reply.
All the best and keep me updated! :) x
Thank you for your reply :) and all your help!
My partner had been told they thought his way low grade! So bit of a shock when they said actually it is grade 3 haha - but like you say they're the cards we have been dealt!
Yes I am a bit concerned about seizures for him - he hasn't had any since a couple of days after his op. But see how it goes.
In all honesty a few people have said the radiotherapy was worse than the chemo!
Keep me updated :) Best of luck with everything x
I was just weaning off the steroids when they started my radiotherapy but it quickly became apparent that I needed to get back on them by Week Three (I was so exhausted, I could barely get out of bed, let alone leave my flat - even for treatment/appointments!), but once they sorted the steroid dose, I was practically a new woman within a couple of days. I think the radiotherapy is the worst bit - particularly if you have to travel quite a distance to your radiotherapy centre. It's really important to keep an eye on your symptoms and keep in touch with your specialist nurse and oncology team so they can minimise the side effects. They know what they're doing.
I didn't have any seizures during radiotherapy, I really thought I might but I was OK. Just very tired and sometimes a bit nauseated.
Hi my daughter had surgery June 2015 and like you was stunned to be told the same result as you When her surgeon was expecting a low grade tumour. She has also had 30 sessions of radiotherapy and is now having 6 rounds of PCv chemo.She is coping very well and is very positive. She has her first MRI scan in February,hoping for good news.hope all goes well when you see oncologist
good to hear she's coping well with the pcv keep us updated on her progress , sending healing hugs xx
Hi all just popped in for a catch up , please reply and let me know how things are for you , I managed four rounds of Pcv and so far so good latest scan results on Monday, that will be almost four months after finishing chemo , keeping fingers crossed
But in fairness I don't worry about it whatever happens, I will as always crack on x
The one thing that does bother me though is my hair twelve months after radiotherapy it's still very patch and fine on the tumour side x
Hi nice to hear from you again. Glad to hear you are well. My daughter also stopped after 4 rounds of PCv..she finished her chemo in June. She is generally very well although her mobility is still not so good due to having a stroke during surgery. She has just had results last Monday of her latest scan, everything stable thank goodness. Her hair is also very patchy on sight of tumour. She now wears a false fringe which works well for her. We have been away to Spain for a week with her boys it did her the world of good. She is looking forward to Xmas I wish you well and hope you have a good Xmas xx
Hi all just popped in to see how everyone is doing, can't believe it's been almost a year since I finished treatment, still no regrowth so all good, I am having late effects from radiotherapy, memory problems balance issues , but will plod on one day at a time sending love and best wishes to all x keep fighting x
Hi lovely to here from you again. Glad all is well. My daughter who had same as you is well too . It is now 2 years post op and like you a year since end of treatment. Most of her problems are her poor mobility as she suffered a stroke during surgery. She also has memory problems but is improving. Just had another stable scan. Hope things continue to be good. Live life to the full each day you can. Xx
So good to hear your daughter is also doing well , xx
Hello, I havent been on here in ages but lovely to see how everyone is doing. My husband is now 4.5 years post op. He hasnt had a full seizure in 6 months the longest since I have known him. And longer than we ever thought possible to be honest. While he still has plenty of other things to contend with things are still stabe and really very good!!! Lots of love and best wishes to all
I have just been diagnosed with a brain tumour at grade 3 and I just wanted some advice on the best way to deal with it.
I've just read through these messages and it's cheered me up seeing how well you all are doing.
At the moment I'm starting to feel quite low with it all as it's been such a shock to me, my family and friends. I'm 23 and have had no Heath problems at all previously and have been fit and healthy all my life.
I've had an operation and the surgeon had taken most of the tumour out but there are small bits left on the right side. It was surprising when they said on Friday that it's now grade three as they had always said it was low grade. They mentioned that was a small bit on the MRI that was lighter than the rest, and now I have to do 6 weeks of radiotherapy and chemo.
Generally I am feeling strong and positive, and strangely feel that I can get through this. I've been out and about with friends and family which has lifted my mood. But now I'm feeling scared and stress after finding out about the stats.
Any suggestions would be so greatful.
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