Immunotherapy query

It’s a treatment to trigger the bodies response to the cancer via the immune system dr mullholland … there is one very successful case of this but he hadn’t had any surgery. 

also a dr I would recommend is dr Lucy Brazil … all the chemo tmz/ lomustine and carboplatin are essentially the same … trying to alkalise the cancer she has some other treatments that work in a different way if your gbm has certain mutations .. I wish we had known about her sooner xx hope that helps 

Were is dr Lucy Brazil based and background?

Google her thx 

Hi Debz,
Welcome to the group and so sorry to hear the news about your son. I cared for my wife who had a GBM.

I know you've already looked through some of the threads in this forum and I know some of the stories can be a bit scary but I hope it made you realise you're not alone in this.

When it comes to the practical and emotional challenges of supporting family and friends you may also benefit from joining our Carers only support group where you will connect with others navigating the same support challenges.

Have you or your son been offered any counselling at all? Either way it’s always good to talk so please remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing. Or it may be as is the case for me that there are other local charities that can support you.

With regards the question on immunotherapy then I would encourage you to speak with his oncologist about this. It isn't the standard treatment in the UK, there are some trials going on here but as an option it partly depends on your son's condition and what treatment he has received so far. 

Hope some of this is useful and please do use this group to keep asking questions or just vent how you're feeling.

Chris

Hi Debz22 so sorry your son is suffering from this. My wife was diagnosed two years ago and recently had a recurrence.

The 'standard of care' is what your son is doing: surgery, radio/chemo combo, then 6+ months TMZ (Temozolomide chemo). After that, if it comes back, there is no agreed protocol, and it depends on what happens. There is other chemo like Lomustine, surgery if viable, more radio if sufficient time has passed. And then there are various forms of immunotherapy, which means using the body's own immune defence system against the cancer.

There are lots of types of immunotherapy eg drugs like Nivolumab and dendritic vaccines like DCVaxx or the ones offered by various German labs. There are people on here who have tried / are trying these now. There are also early CAR T immunotherapy trials in the US. Probably none of these are available on the NHS but people raise money to try them eg in Germany. The general consensus so far is that immunotherapy is a very promising avenue for GBM research, but it's not at all clear what, if anything, reliably works rn.

Good luck. I really hope your son has a long and successful treatment path. One last thing, if you haven't already, bone up on the pathology of your son's tumour eg IDH, methylation etc, other mutations. You may find something helpful for future targeted treatment. x

We also tried the carnivore diet and keto diet. I think it helped. Dr Lucy Brazil is at guys hospital … mullholland seems to have access  to trials 

not sure who your current oncologist is but I’d say both worth speaking to. 
also Kelsey Parker is involved in a charity for treatments and then use oxygen chambers in would try and explore all of this 

And yes you need the full histology as certain mutations can mean you can try certain more targeted treatments 

Hi Branoc/Chris

Thanks for your reply.

I read about your wifes journey a couple of days ago, it was terribly sad and I could tell how much you both fought to the end, I hope you and the boys are doing as well as can be expected. The fact that you continue to come on here to help others speaks volumes.

I find forums like this quite difficult as I'm not very good with words. I have struggled to reach out for advice but after reading what other people have gone through I realise that we are not alone and have take some comfort from that. I have recently joined the Carers Only support group. I'm also caring for my mum who has dementia, she was also in hospital at the same time as my son was having his radiotherapy treatment. 2 different loved ones in separate hospitals in completely different ends from where we live, Its quite stressful I can tell you.

We were offered counselling on B's diagnosis appointment day, we declined it. Its taken me until now to be able to even speak about it to friends. To begin with its been just our little bubble getting on with what needs to be done, trying to get through. B's Phycologist who was in the operating room with him during the craniotomy has said that if he wants to talk at anytime, she's there for him, he feels comfortable with her so that's reassuring. For me, I can come on here and also talk to friends now, although i don't think they quite understand the severity of the heartbreak I feel, after all how can they.

I will speak to B's Oncologist regarding the Immunotherapy when we next meet. Up until now, at every meeting we've had I've just wanted to get in and out for fear of being told further bad news, it's now time to deal with this and put on my big girl pants so to speak.

Once again thank you.

You may find other charities useful like Brain Tumour Support. Amongst other things they organise peer to peer calls with people in your situation and for patients. I found that really helpful as online forums can feel a little impersonal at times. I am still in touch with people now who I met through those calls

Hi HW66

Thank you for your reply.

You have provided me with lots of information. I hadn't realized that what B is having is the same care as everyone else is offered, I initially believed it to be tailor made for him, quite naive  probably, or maybe just hopeful. So basically to begin with it's a one size fits all ... 

Am I right in saying that Immunotherapy isn't available in this country on the NHS?

Can you explain what you mean by your statement

'bone up on the pathology of your son's tumour eg IDH, methylation etc, other mutations. You may find something helpful for future targeted treatment'

B had a call from his Surgeon a couple of weeks ago, asking for permission to do a whole genome sequencing on his tumour, maybe this is what you mean? As they said it can take up to 4 months for the results, I would have thought it would be something they did earlier.

Sorry I'm coming across as a bit thick, but I've only just started to look into the whole thing. I've been too lost in my emotions of sadness and despair at his diagnosis that I haven't until now had the strength to reach out. 

As a side note, I cant believe how little money is put into research for brain tumor's, I was flabbergasted.