We Talk Brain Tumours

Hi Peabs

If I have understood the reply, then in my opinion, it all boils down to the quality of research that is taking place throughout the Country and how the researchers actually apply for the funding from CRUK.

It is not the other way round i.e. here is a pot of money go and do the research to improve treatment for this type of cancer.

It seems ludicrous to me that there is already a high percentage of women surviving breast cancer with treatments that are known and clearly work but they are still funding all types of research - perhaps they are trying to achieve a 99% survival rate and that is why they continue with this research.

We are not saying that breast cancer is not important, clearly all types of cancer are important, but they don't seem to grasp that Brain Tumours are affecting many lives with not much hope of survival and that time is not on our side.

Hopefully, the research that is currently being carried out will be the breakthrough that we all need.  There is a new centre in Wolverhampton so hopefully this research will be seen as quality research by CRUK.

Many thanks for keep hounding them.  All you feel like doing is getting hold of them by the scruff of their necks and saying please help us but we need the help now!

It's at times like this you feel that you are hitting your head against a brick wall and brings home how desperate and helpless we all feel.

Take care - I am waving the banner from afar!

Ann x

Hi Peabs,

A lot to digest indeed. I know little about this compared to you but I have always felt uneasy with the idea that pharmaceutical companies are involved in deciding with which research  to fund. And of course there are more clinicians involved in the more common cancers.
Companies and clinicians will want to fund the research that will lead to the greatest publishing profile / profit. Or am I just too cynical?
I do understand that good research is expensive and you never know what general good will come out of any research but having profile / profit in the equation will always favour the most common cancers I think.

Shame that, to achieve some balance, there isn't something function that would tie proposed research into a common cancer to an equivalently rare cancer somehow linked to how much progress has been made in the previous 10 years. Have to be a worldwide function of course.
Just some thoughts.
Best wishes,
CHxx

Hi LDW

The medication that your Dad is on (as confirmed by others) is as follows:

            Temozolide is the Chemotherapy (Tablet Form)

            Metoclopramide is the Anti Sickness (Tablet Form)

            Co-trimoxazole is the Antibiotic (Usually Tablet Form)

The reason for the antibiotic is because the chemo/radio affects the immune system and this is given as a preventative.

When my husband was on this treatment he had to take the chemo tablets half an hour before having the radiotherapy and the radiotherapy then has to be done within the next hour.

The chemo tablets are issued every week when you see the Oncologist.

Has your Dad been for a chemo talk at City - we went as a group and then had a private session with a nurse to speak about our individual concerns and we were given info about the chemo and emergency contact numbers if you need to talk to someone about your chemo.

I am surprised you didn't find the consultant very helpful(assuming you spoke to Dr Matt Griffin) as we see him and have found him to be very informative/helpful.  He has even telephoned us when requested.

Hope this helps a bit

Take care

Ann x

Martyn - sending you love and loads of strength at this difficult time.

Sally xx

Thank you all for your very kind and caring messages and posts. I will answer all the pm's when time is on our side, your support is invaluable. The support services could not be performing to any higher standard, they are being marvellous.

Robin, our thoughts are with you Jan and the children. Have a try of scotch and oramorth, it certainly does the job!

Thank you and best wishes to you all on this dreadful journey. From my Doreen and me. XXXX

Martyn Thank you for your kind thoughts.  Ours have been with you and Doreen especially over the past week or so too. Interesting cocktails you appear to be mixing these days ! Fortunately not in need here as ten rings on the bell is pretty much guaranteed to see me drop off, although this does rather hamper progress when there are still things to be done.  I am so pleased for you that  the support you are getting has turned up trumps.  Jan is comfortable in our local hospice St Catherines in Crawley. She does very well for visitors although it would be a better sign if she could remember being visited. The three preceedimg ones yesterday were a lost memory when I asked as I suspect I was by the time I left the building.  Keep strong my friend (and everyone else for that matter).  Best wishes - Robin.

Robin,  sending your family much support and many, many hugs - sorry you are on this part of the journey.  Take care  xx

Glad to hear things are going to plan with regard the services Martyn - love to Doreen xx

Robin, also sending  you lots of strength and love. I know it's very hard at this stage but  good that Jan is in an excellent place. Take care of yourself a little too eh?

Also thinking of you Martyn, and you Suetoy and so many others from this site going through very, very hard times now.

CHxx

mandyr - hv bn following yr posts on here and yu are always an inspiration. My sister had op for BT surgery Grade IV Glioma which did not go well, and I dont know now what to expect.  ?          2 months on after the surgery, she remains incontinent,no speech,diminished sight,paralysis on right side,childlike at times, sleeps alot but continues to eat and appears in no pain. 

Robin-sending you any strength I have left to get you through this difficult time for you all x