A place for people affected by brain tumours or brain cancer to support one another...
My husband was finally diagnosed with glioblastoma 4 months after initially being treated a) for a stroke then b) for a viral infection.
He was referred to Salford Royal & after seeing a neurologist was fast tracked to a neurosurgeon. He had his operation last Thursday & we now follow on with radiotherapy & chemotherapy in about 2 weeks.
It's all been a rollar coaster we are trying to be strong & positive but not always easy.
I have joined Macmillan as the sister at the hospital recommended it.
Any other people or relatives going through the same experience I would welcome advice.
So sorry that you find yourselves on this cruel journey in your lives.
You say your husband finally diagnosed after months of going to the doctors. My son was treated the same after 5 months of trying to convince the gp that he didn't have migraines as they repeatedly kept assuring him of. He begged them to listen even after 2 eye tests were normal and send him for a scan but in the end he went private and even then the neurologist almost agreed that yes indeed he was experiencing migraines with auras.
With what I have read and understand for your husband it is most hopeful if he had most or all the tumour removed and if generally he is in good health it is more positive. It GBM is the most horrible of all brain tumours to have. The radiotherapy was tolerated well by my son albeit he got tired and lost his appetite. He only spent a couple of days in bed. The steroids really do make a difference in picking him up and increased his appetite. But made him so alert at times he couldn't sleep at night. So we gave him the daily dose of steroids only at breakfast and not twice a day as prescribed. That helped him sleep at night. He lost his hair at the sight of therapy contact but it has grown back after 4/ 5 months.
The chemo my son had was PCV. Nasty stuff made him feel weak and sickly lost his appetite again. But again everyone is different and your husband based on the methylation status he has may have the TMZ drug together with radiotherapy and what I hear is it is tolerated well by most persons. He will probably have a MRI after the 3 months since treatment ends or month intervals. At the very best outcome it will shrink. Or the treatment may keep the tumour stable for hopefully a long time. It does take it out of you but it is possible to get back to a normal life. .. but a different kind of normal.
You may find it irritates your husband to be in a crowd with lots of people talking at once or noisy places etc. The brain has suffered an injury and can no longer cope with mulit tasking. This is our experience but yours may be different.
You have found this amazing support group and there is always someone here to answer your questions no matter how trivial you may think it is. ...someone somewhere may have been through exactly the same at some point.
I wish you and your family many good wishes.
Stay strong....! my partner was diagnosed in August 2018 and at 45 and with two children under 10 it wasn’t easy but things have got better. She has undergone radiotherapy and chemotherapy and the results are looking very positive first with BB the tumour shrinking and now we the treatment has stoped she has scans every 3 months and the the tumour has reported as stable ever since. In fact we even got away to Turkey in August for are holidays.
To me the oncologists/consultants will always tell you the worst case senecio, as they have told me about my partners prognosis - which is part of there job I guess but you just need a bit of hope and faith. I have first hand experience of this as I had a brain haemorrhage when I was 11 (42 now) and they didn’t have much hope for me at the time but I’m still here... when my partners hair fell out we made a right pair with matching scars....!!!
I would say know that my partner is 95% back to the way she was before the diagnosis, she was never that active and is a pint half empty type.... anyway stay strong and I’m thinking of you..
My mom was diagnosed two months ago. I watched Surving "terminal" cancer, the documentary, and I´m very positive now. In the web page Radical remissions you can find stories and some advice.
My mom takes a lot of supplements, some approved by the doctor some not: Propoleum, selenium, CBD, vitamin C, passiflora, resveratrol, Co Q10, melatonin and vitamin D, as a plant called Kalanchoe. I don´t feel comfortable telling you about the drugs I give to her because I still don´t know the results and it is a sensitive matter. An integrative doctor prescribed her glutatione (gsh, reishi) which I´m not sure about because of the metabolism of glioblastomas.
I hope the best to you and your family.
so sorry to hear you have recently started this journey. My husband was diagnosed at Salford royal just over 2 years ago. He had just turned 55. It’s an awful shock for the first few months, but you don’t realise as you are basically kept so busy with radiotherapy trips and oncologist appointments. They give you so much information too that you can’t digest it all. But it’s all good information. Have you been to maggies across from Christie’s? Great place to sit, have a cuppa and chat or not. They help with financial stuff too.
anthony started on TMZ, but after 5 out of 6 cycles his tumour started to return. So he switched to PCV. Managed the full 6 cycles, though it was tough. He is now on 3 monthly scans.
he didn’t return to work, and I was lucky enough to finish work too at the time. He’s had a few problems with speech(tumour was on his left frontal lobe), but the speech therapists via Salford royal neurological team are brilliant.
ill friend request you and we can exchange private messages re: Salford royal and Christie’s , and any other advice I can pass on.
I'm getting used to using the forum but I've private messaged you. So heartened by you telling me you hubby is there with you.
Bill is retired but I still work but everyone at work is rallying around & covering some of my shifts. I take him 3 days a week & Anne his sister us doing Tues & Thurs. It takes the worry about work cover away & one has to look after oneself too.
I live in Bury so it's 40 miles to Christies Like you say it's all travelling now until the new year.
I've been told about Maggie's I will likely visit while Bill is having treatment. They rang to sort out his attendance allowance we had only been back from the hospital less than an hour.
It has really helped chatting to you we have much in common.
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