We Talk Brain Tumours

Hey Guys

Husband diagnosed with Grade IV Glioblastoma Multiforme Brain Tumour in May of this year. He's doing very well at the moment so, for now, the whole family are in a good place. Long may it last.

I wondered did anybody hear the Radio 4 show about the anti-depressant Clomipramine and its potential use as a brain tumour treatment? And, if so, have you been using it? What is your experience of it?

I think it's still on Radio Four iPlayer if anyone wants to listen in. I think it was called 'Old Drug, New Ticks'. I found it fascinating.

Pam

Hi Pam, 

Thanks for the link - there's also further information about it here...

http://www.canceractive.com/cancer-active-page-link.aspx?n=1096

Got to rush out, but hope everyone has a good day today, love to everyone xxx

Welcome Pam.

Yes heard the discussion and as yet know no one using ....but anything is worth a try?

cathi x

Morning all,

Speaking to my hubby's team about Clomipramine, I was told that it's unsuitable for patients who are prone to seizures as it exacerbates them. Debs x

Hi all

Yes I listened to the radio programme and got quite excited - was ready to go and buy the anti depressants - they can't do any harm and really Clive is frequently quite depressed. He however will have none of it which is a bit upsetting. I'm sure our GP would prescribe them if asked.

It would be nice to hear if anyone using them.

Clive started his 6 months chemo today and feeling sick with the temozolomide although had no reaction to the lower dose when combined with the radio. He has gone off to sleep, kids at school. Although I had cut my hours at work fairly dramatically when he was taken ill in June Clive was insistent I give up totally from September (I teach normally) and am now feeling at a complete loose end.............. Kitchen cupboards better look out!

Love to all

Wendy X

Just to say to....

Cathi,

Thank you for that phone number that you gave and thanks to it I have mentally started making plans for next year if all goes well. Its nice to know that any illness is just routine to them even if it costs a fair bit!

Naomi,

I must admit I shed a few tears when I read about your lad acting so grown up and hiding his feelings from his grand dad. I know that when my father died of dementia, I chose not to take my two along- they were 17 and 15 at the time, because it upset them so much and I wanted them to remember the grand dad they knew rather than the stranger he had become to them. Its a personal decision. I can also imagine your youngest getting up to things! I was so chuffed to hear that your dad saw him walk! Thinking of you very much and glad that your mum had a break too.x

Pete,

Again I had a few tears shed when I read that Ali made herself get out of bed to see your mum. Shes still batttling away there.

Wendy,

I know that when Steve was first diagnosied with his tumour, he had the op and then the radio and chemo I stayed off work until he finished that, then I went back to work on stage return for a month then went full time. I even went back to working late shift and weekends but I still haven't gone back to night shifts yet. (I'm a nurse).I just about cope I guess! I am lucky in the fact that I work a four day a week so it means I have three days with Steve each week. Ideal for me would be two days. But thats not possible at the moment. If Steve does get a reaccurance then I will go on a sabatical. I have already talked to work about it. You take care there.

Debs.

You know you said that you have come to terms with the fact you may not see your children marry and have grandchildren etc. Well, in the early days, I resigned myself that I could be a widow in a couple of years. The more time goes by I feel myself in a sort of denial I guess. I guess i am just living one day at a time and just enjoying what we have. Its easy for me to do that though isn't it as I am not the one with it. Steve I knows thinks about it a LOT.But I still hope and pray each day- another month, another year....

Thinking of all of you going through different and difficult pathways.

Julie.

Wendy, I meant to say I would rather work two days, not just have two days off!!! LOL! I think i have had too much chocolate!!

Hi Everyone

I posted earlier asking anyone if they had any experience with clomipramine. Through a very interesting radio progamme on Radio 4 last week I have become aware of this drug as a potential (and I use the word 'potential' very carefully) treatment for GBM Brain Tumours. So i decided to write to each and every one of the experts who took part in the Radio 4 programme and today, we got a response from Professor Garth Cruikshank, one of the professors from the programme. I will cut and paste it here as I think it may be of interest to people on this forum:

"Thank you for your emails and I appreciate your concerns about the lack of consensus over the use of Clomipramine.  I am afraid this is mainly due to the fact that obtaining data about the efficacy of Clomipramine is actually a more complicated issue with a lot of it being due to the fact that its action is likely to be marginal, hence, very difficult to differentiate in anything but very large trials.  There is some evidence in labs that it can have an effect on tumour cells and there is also a little anecdotal evidence that it might have some effect on tumours in patients but to prove its efficacy would require, as I said, a complicated trial as the relationship between dose and effect in individual patients is highly variable. 

In the interim whilst we are trying to work out the best study to do patients are naturally asking about whether the drug may benefit them.  My approach is to first of all establish that a drug such as Clomipramine is unlikely to do any harm and that patients are made well aware of the possible side-effects.  None of us know the best treatment for glioblastoma and it is in natural to consider anything which might help to be tried.  Thus, as along as there are no particular medical contraindications between its use and one is aware of the side-effects, then it is not unreasonable to consider trying it.  Our responsibility is to consider how best to assess the action of Clomipramine in clinical studies and we are currently trying to develop trials which will allow this.  In the meanwhile, of course, patients need answers to their questions.

I am also well aware that patients often take a range of additional products which they believe to help in their disease and sometimes they will tell me about them and sometimes not.  Again, my attitude is to support patients in as many ways as possible in addition to simply clinically and as long as Clomipramine is not doing any harm and patients fully understand that we have no evidence that it is currently clinically effective, then I am  happy to support my patients if they so wish to take it. I think possibly the only major area of concern with Clomipramine is it can enhance or aggravate seizure activity and this would need to be taken onboard by your consultant.  I hope we will be able to offer more definitive approaches to this drug soon and I hope this information is of some supportive help to you.

I hope you find it interesting. Tomorrow my hubby is having his monthly check up and is planning to discuss Clomipramine with his own consultant.  In the name of balance my husband's consultant responded to the above email as follows:

So it doesn't look like we'll be getting a prescription from him any time soon! Would love to hear any opinions on what seems to be a bit of a divide within the brain tumour medical fraternity.

Love and hugs to all on this forum and hope today was a good day for all of you.

Pam

x 

thinking of you all as always.  I read frequently but feel like an outsider now that I have moved to the end carriage!!

Those of you who have read my profile will know where I  am coming from here and whilst we grab at the opportunity and any chance of a new treatment I feel strongly that it should be thoroughly researched and understood before being used as a reputable treatment.  Temazolamide (TMZ) which is the first line treatment for BT took years to get to the market and only did so because it proved itself to be the best in class. PCV is second line treatment again through years of research. Avastin is currently under research for potential treatment but so far hasn't proved itself along with other compounds, there is an exciting trial ongoing in the US taking BT cells from patients and reinjecting them - that has fabulous results so far but remains in early stages.  BT has insufficient funding as its not a "popular " or "common" cancer so doesn't always make it worthwhile for the Pharma companies to invest in but some are and will continue to do so.  Personally, although all avenues need to be explored I felt the need to review all the data before allowing Paul to take drugs for his treatment.  Please be careful, read all the literature listed, read all available data and take lots of advise before starting new unproven treatments.  

Sorry if I sound like a pessimist, I am really a glass half full person.  I wish everyone on this journey all the very best and I hope and pray for a new effective treatment to be found in the very near future.

lots of love to all - OOH and Cathi if you can get Wifi on board hope you are having a great time 

joanna xxx

y has the treatment stopped its like ok go away and ......... 11 days to wedding we are so going go make it and enjoy .  my birthday yesterday such hard work like being in a film, not reality hugs to all xxxxxxxxxxx