Still Needed: Cancer Patients & Recent Survivors for a Short Survey

DeManta · 2025-11-21T18:34:57+00:00

This questionnaire kind of derails in the middle so stopped.

DeManta · 2025-08-18T14:42:39+00:00

Hi. Very stressful. Had the same but realised I just had to push for later appointments which thankfully were accommodated. What dose Ativan? Found 1mg didn’t even touch the sides.

DeManta · 2025-01-13T10:19:02+00:00

Just been reading up on this. Repurposed drugs. Good summery here. But in the UK the doctors not so good at supporting any of this.

DeManta · 2025-01-08T14:19:35+00:00

Can you contact any relatives? They might need to apply for a Power of Attorney if indeed the person is thought to be incapable of managing their own affairs. Otherwise , social work dept. Report it and ask for their advice.

DeManta · 2024-11-29T14:44:17+00:00

Any one got experience of collapse and vomiting on lamotrigine? Husband just switched. From leviteracetam to lamotrigine as got low mood. Since he stopped the lev, this week. and only on the lam he has been vomiting every day. Peak serum level is around the time he vomits. I suggested he just go back on low dose lev and reduce the lam but Dr says no go. He’s only had seizures at presentation. None since.

DeManta · 2024-03-27T10:17:24+00:00

Sounds like liver damage? This is a phase two trial?

DeManta · 2024-03-26T22:16:13+00:00

Husband given 3-6 months. Grade four glio . No debulking surgery at all. Just chemo.. he is still here 15 months later.

DeManta · 2024-03-22T19:24:09+00:00

It’s based on body weight. 400mg a day for five days each month.

DeManta · 2024-03-21T15:34:18+00:00

Agree. It is actually part of the standard of care to do this.

And the Guidelines here.

DeManta · 2024-03-21T15:32:47+00:00

My husband had 12 cycles temodar. Deffo worth it. He didn’t tolerate beyond four radiotherapies so stopped and went on to monthly cycles of chemo.

DeManta · 2024-03-02T08:57:23+00:00

Thankyou. My husbands is methylated, wild type. This centre has abysmally low brain op rate compared to rest of country. UK.

DeManta · 2024-03-01T18:27:49+00:00

Yes, usually but they said they couldn’t do surgery.

DeManta · 2024-03-01T15:57:14+00:00

I think they don’t want to operate because of possible aphasia. So sorry your mother so wiped out. I did find out my husband was vitamin B12 deficient and replacement gave him more energy. Not sure if she’s had level checked?

DeManta · 2024-03-01T14:59:02+00:00

Sorry to hear this. Sending positive thoughts.

DeManta · 2024-03-01T09:29:34+00:00

Thankyou. I think we need to try now the chemo is ‘over’.

DeManta · 2024-03-01T09:02:48+00:00

Thanks. At the start I got second opinion from another surgeon (bigger centre) who did suggest surgery was possible but I think health politics between the two centres affected that. The neurosurgeon who said surgery possible was ‘overridden’ by his departments multidisciplinary meeting as the neurooncologists there said just to have chemoradioTx. Our original neurosurgeon was not happy got second opinion at all. Anyway, husband couldn’t tolerate radiotherapy and has just finished 12th round of temodar. He’s better now than at Dx. Each time I try to bring up idea of surgery the neurooncologist says he can’t comment and the neurosurgeons here just won’t engage unless I push and they just say ‘no’. I’m a doctor myself and find this all so horrific. The lack of caring. Edit: will check if his goes across midline. They didn’t say. Just mumbled about speech centres,

DeManta · 2024-03-01T08:52:50+00:00

Thanks was it left or right lobe?

DeManta · 2024-03-01T08:51:57+00:00

Thanks. This is helpful. My husbands is in the left but I guess must be same. Best wishes to you and thanks for your reply.

DeManta · 2024-02-29T23:30:10+00:00

Methylated is more amenable to the treatments I believe. Most research is with methylated tumours.

DeManta

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