We Talk Brain Tumours

Evening everyone. Hello to Martin - I'm new on here myself. I definitely would go for a second opinion - I got a great doctor for a second opinion through Brainstrust and they will pay for you to have a private consultation if you don't have private healthcare. We went to the National Hospital for Neurology and Neurosurgery in London who were brilliant through a reference from Brainstrust - give them a call if you haven't already. They also give you a really helpful reference book. which I have used stacks.

On marriage and children you two must follow your hearts and that will be the right decision I'm sure.

Clive now better for the 16mg of dex, out of hospital and the radio and chemotherapy all bought forward to Monday which is very exciting. Back on cottage cheese and flax seed oil - not convinced on this but worth a try - has anyone else done the budwig diet?

Good luck  with the op Julie.

I'm told non operable as there are 2 tumours covering 7cm by 5cm by 5cm in the left temporal lobe. We have had quite a few doctors saying the same

Love to all

Wendy XXX

Hi JM7,

Julie, I sent you a pm on 27th June.....it was when there were technical issues with the site so not sure if you received it, if you have replied (as above) I haven't received your message to date.  Speak soon, Debs x

Martin,

Everyone has said welcome but sorry you are here.  I had a grade 3 Oligodendroglioma totally removed in Jan 2009.  Apparently I am nearing my 'best before' date.

Well, I breezed through surgery, radiotherapy and chemotherapy (ok the chemo tablets weren't that easy the constipation was terrible).  I have been having clear scans since and my only side-effects are loss of hair from RT which didn't properly grow back right at the front of my head (yeah great place!) and my memory is now on a par with Dorey from Finding Nemo.

I was shattered when my onc said prognosis was 2.5 to 3 years........well that's just a statistic, I am NOT a statistic, I am me and I now struggle to put that bloody prognosis clock out of my mind......I really wish I hadn't asked and they hadn't told me.  I am pretty healthy (hahaha I hear you laugh) and although I've gained a bit (yeah ok I am underexaggerating here) of weight, I have a great quality of life - although we do really miss my wage, I had no plans to retire at 41. 

It's my 44th Birthday today and I never thought being 44 would feel this good.  I have a wonderful husband and 3 kids, 17, 15 and 13 in 2 weeks time, I am aiming to see them out of school but who knows.

As for second opinions (not sure if people have already offered this but I am tired and can't read all the messages tonight)  what about the Royal Marsden, they also do clinical trials.  I am at Queens in Romford and although I have had brilliant care, they don't do any trials.

There is also this:

The new brain tumour unit has 12 inpatient beds and is based at the National Hospital for Neurology and Neurosurgery, part of University College Hospitals London NHS Foundation Trust.

I hope you get some helpful advice on here, if not we are a friendly bunch and will listen to any of your fears or worries, you can vent without judgement and as a group we have the broadest shoulders which you are welcome to lean on any time you need.

Love & strength to all who want or need it,

Guys, just want to say thanks for the support, messages and advice, it means so much to me. I would like to reply personally to you all, I've read all of the messages and I'm truly saddened to read some of your stories. One thing I've learned very quickly is that being diagnosed with a brain tumour can be a very lonely place, even with lots of friends and family around you.

I will follow up on the Braintrust link and the National Hospital for Neurology, as I said previously, it's not that I do not trust my consultant - I just feel I owe it to myself to check every avenue before settling on a treatment / lack of treatment plan.

I will try to keep everybody updated as I go along, at the moment everything is fine, I feel no different to the years before diagnosis which can only be a good thing and the first scan is in early October - fingers crossed on that one.

Best of luck to you all and I will drop in from time to time to see how everybody is doing.

Keep well.

Hello,

Yesterday I was feeling really down and instead of crying, I used my energy to make a video of the ski trip Jane and I made to Scotland earlier this year. She had an amazing time and having the videos mean so much to me now that she is gone. Putting this one together really helped my focus my emotions on achieving something tangible.

I just wanted to let people know that even with a brain tumour and serious cognitive impairment, you can (sometimes) still do things to enjoy life (obviously I understand there are limits to that, I understand). Jane just needed some help from a ski intructor (she was an advanced-level skiier and normally did not need help) to enjoy herself.

I put the video on the Bunnyfactor10 website, link below.

My love and positive thoughts to everyone going through this. Xxx

Has anybody heard of this guy in the states? Dr. Berzynski?

There's a movie out documenting his story etc and he claims to have found a cure for cancer.

Taking this with a pinch of salt really but just wondered what everybody elses opinions were?

He has a clinic in Houston I think, claims to cure all types of cancer and tumours.  Am waiting for the info to come through, worth looking at I think but don't know what options there are.  Read the information on Wikipedia as I can't work out if all his trials are complete.

I saw that also, stories that I've read are that the FDA blocked the trial stage 3, some conspiracy story with the big pharmaceutical companies etc. How much is true or not I suppose is hard to fathom without speaking directly to a genuine former patient of his.

There's a little girl I read about on the internet who is doing fundraisers to pay for her treatment there so I guess it must have some substance?

Yes - if that was at all possible.  His website doesn't seem to give enough detail but surely he has been treating people for yyears now?

Martin

My better half has, like Debs, had a very different story to the initial prognosis. She had a Grade 3 Astrocytoma and was given the 3-5 outcome. After chemo and RT she has had successive clear scans and is looking forward to getting her driving licence back next month. She is well and active and sees herself as cured. None of us know what tomorrow will bring but everyone's story is different and it is important to remember that the prognoses are built on historical data over many years that involved different treatments and so frequently the actually outcomes can be very different. Bizarrely on this forum in reality you would be considered "lucky" if your tumour is graded better than 4 and it sounds like a second opinion might be worth taking. I am really surprised that craniotomy/RT etc is not considered useful in your case, but again every position is different. In theory the 2 grading should mean that the cells are growing relatively slowly which is obviosuly good news but certainly our oncologist at Charing Cross Hospital says that he would always recommend the earliest and most aggresive treatment possible. Good luck and keep positive. I would never have believed that we could be where we are today three years ago. The treatment is tough, but in our view it has made a real difference.

Charlie