Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.


Posted by

Does anyone have any experience of immunotherapy for a GBM4? My husband's tumour came back at the end of last year and he started Avastin and Lomustine but after 2 cycles his symptoms were worse. We waited 4 weeks and started a trial at Bart's but he has not stabilised so we are considering immunotherapy (at our expense). It will probably be Nivolumab together with Avastin and if no response we will consider Ipilimumab but this has pretty severe potential side effects so we will have to make a decision at that point in time. His oncologist is also recommending some more radiotherapy to help the immunotherapy.

Jazmine - Admin
Posted by

Hi ,

I'm sorry to hear about your husband's diagnosis, and I apologise that you have had to wait for an answer. Other members may not reply if they feel they can't relate to a situation.

I would suggest posting your queries into our Ask a nurse discussion and see if they can give you any further information about the different treatments you've spoken about. 

To post a question click into the discussion, then click any of the 'Reply' buttons. Type in your message and click 'Post'. A Macmillan nurse will get back in touch with you shortly.

I hope this helps.

Best wishes,


Posted by


Sorry to hear about your news, hope all goes as well as it  can

I was diagnosed with metastatic  brain, lymph and lung cancers last Aug.....I'm still fighting and do have a little experience of immunotherapy.

  • Original Brain Tumour - lots of steroids (horrible) then awake surgery at Queens, Romford to take a 4.5cm egg out
  • Original Lymph&Lung - 4 sessions of Ipilimumab Oct-Jan. Not too bad but neouropathy very difficult to cope with and rash/itching very unpleasant. Good news is that quantity of particularly lung tumours has reduced and no sign of original brain tumour
  • Currently - Lots of physio and yoga have helped me write, balance and walk properly again and neouropathy and rash is easing slowly. 3 more brain tumours (sub cm) were treated by cyberknife at Barts on Friday (sounds more scary than it is) and I have more scans next week to look at (possible) regrowth of lymph tumours.
  • My Position - Have had all 4 Ippi treatments now and can't afford private Novilumab so not a lot more to be done for lymphs/lungs so we're in  wait and see at the moment. Will consider Novilumab/conventional chemo if offfered but not another round of Ippi. My choice, don't let it affect  yours. I may be reaching the end of my road but I think I've given a reasonable fight and it's not over yet, got tickets for Lords in August!!!!!

Take care, hope you fair well but most importantly keep fighting. .........Alan

Posted by

There is a lot of promise for immunotherapy but it may be too early to provide a cure.

Nivolumab is also my hope but the doctors require some solid evidence/research/documentation in order to prescribe it as it has not been approved/licensed for gliomas in the UK (or in the US). It is being trialed in the US for almost everything, including gliomas. I believe it is 3mg/kg every 3 weeks. It has very few side effects (stage 1 and 2) compared to its predecessor ipilimumab (stage 3 and 4).

I was told that it's being given in the UK to one patient with ovarian cancer, off label of course, and the insurance company pays for it. Else it is £5500 every 3 weeks.

There is also another approach a combination of ipilimumab and nivolumab but at much lower doses, less side effects too, the theory is they are meant to take the brakes off the immune system and not to fight any disease directly, so the lower dose works just as well and cheaper. I am not sure if I could persuade my doctors to prescribe a lesser dose but they do it in Germany privately (Nesselhut).

I would be glad to discuss it more with you maybe you can email me/call me directly

Posted by

Thank you for your reply. My husband has taken a major turn for the worse over the last few days. On Sunday I took him to A&E with a suspected clot in his leg. This was confirmed on Monday following an ultrasound and he was prescribed tinzaparin injections. The next day he had a severe headache, was drowsy and sick. By the time he was seen in A&E he was unconscious. Initially they wanted to do an emergency debulking op but his oncologist thought this was a bad idea. He responded to steroids briefly so they put in an external ventricular drain instead. He had a small bleed probably due to the tinzaparin. He is at least conscious and awake now. We have the choice of no new treatment or Nivolumab. We are going for Nivolumab as a last resort and start on Friday before he is too unwell. Nothing else has worked so we will have to see.

Posted by

Hi - April 2016 diagnosed with Stage 4 Metastatic Melanoma of brain and in lymph. Having been given short life prognosis by Dr. James Larkin at Royal Marsden Chelsea  (only seen once in 14 months on diagnosis despite attending Marsden regularly from Cornwall for 14 months ! See various registrars and cancer nurses who are lovely but no continuity of doctors !)) I had the 4 infusions of joint Ipi and Nivo (selling home to cover cost) and then I developed kidney problems and been on steroids for that for months. Also had hepatitis and colonitis along the way. Now awaiting next scan and monitoring date - probably August 2017.  I have chronic fatigue - overwhelming at times even though last infusion was July 2016.Am told the extreme fatigue could be as I am coming off steroids (for kidney problems) and have thyroid problems too and that the stong drugs Ipi and Nivo I am told could still be working within. But the fatigue is so bad that often I cannot get legs off bed (like lead weights ! and sooo tired !!)  Am told to pace myself in life as no treatment for this fatigue  although thyroid and other problems addressed with the steroids etc..). Wondering how your life is going and if anything resembles my so-called "journey" (condensed !)  as above

Posted by

We should all be feeling sorry for your crap experience at the NHS !

About your fatigue, do you have anyone to help you at home?

But why did you have to pay for the nivo, why is that not on the NHS? It is approved for melanoma, no?

Anyway if you read up on it you will see there are another two known pathways for the cancer to escape the nivo, TIM-3 and IDO. You could try to get on the TIM-3 trial in the US if you can, you will then get nivo (anti PD-1) plus the anti Tim-3. And secretly you can augment with acyclovir which is your IDO inhibitor.

Failing that you could try pembrolizumab at a reduced dose, so cheaper, and anti-IDO (acyclovir) which is dirt cheap.

ipilimumab is very bad, very strong and very old. Nowdays you get the modern versions of the anti PD-1, ie nivolumab or pembrolizumab  or dozens of others.

If you read the research on nivolumab the dosing is a bit random, they got good results with 0.1mg/kg just as they got with 3mg/kg in some cases. If I were doing anti PD-1 I'd be asking for a 1mg/kg dose and spread out over months not weeks as the half life is 3 weeks anyhow.

If you are not too fatigued you could do some research although what I have written above is the crux of it.

Posted by


I've been reading your posts with keen and I have to admit a v selfish eye! 

I've just had an operation (may 2017) to remove  90% of a stage 4 primary brain tumour, & am currently having chemoradiation for 6 weeks. It's been an easy ride thankfully. 

The normal standard of care of chemo planned going forward which is 6 cycles. I asked what else could I have and have been offered ipilimunab, IF my health insurance pays, which remains to be seen. This would be alongside chemo, and Avastin which would be used to moderate the toxicity of the ipi. There is nothing avail at the mo which kills grade 4 brain tumours so this is the great new hope but your comments re: it being old intrigue me. I wonder why nivomulab isn't being suggested instead. 

Would you say that the side effects have been worth it? I'm terribly sorry for the crap NHS experience you've had too, it really makes a bad time worse! 

Posted by


bizarre question, but did you enjoy Lords?