Hi Bodger I have joined a phase 3 trial called REFINE and my mono treatment of Nivo is every 8 weeks from the start. It seems to be the thought that maybe RCC and melanoma had been over treated. I am currently like your wife stable. there is a website for the trial worth looking at.

Hi DC1

thank you for your response - I'll try googling it, and see where it leads me. My wife has an appointment with her oncologist on the 26th June, so all will be clear and I will update everyone. 

Regards, Bodger

How can you join a trial?

Can one ask for it?

Marigold

I think the first step is to ask your oncologist about immunotherapy, be aware it doesn't work for everyone but it is available on the NHS. Your Oncologist will know and understand your situation far better than anyone and don't be afraid to ask for a second opinion from a RCC oncology specialist. You would have to embark on dual treatment immunotherapy and have a positive response to be considered for the above trial and even then it would be random which leg of the trial you would be in i.e. standard or reduced frequency. but worth the question I think.

If you have access to podcasts I would recommend listening to my oncologists podcast. It is called The Immunobuddies and episodes 56-61 are very good to understand everything immunotherapy wise.

Thank you. I still don't have an oncologist, the hospital will transfer my case to an other hospital.

I may ask them if I  finally have a dedicated oncologist.

My case is very similar, so thank you for your response.

Bodger23 said:

No longer a four-week cycle, but now an interval which looks to be every two months with no pre-treatments and simply put down on her schedule as "Monoclonal Treatment"

Oh how interesting.  First time I've heard of 8 week nivo. 

I found this link on the cancer research web page: 

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-how-often-to-give-immunotherapy-for-cancer-that-has-spread-refine

This trial is looking at whether it is possible to give immunotherapy less often for cancer that has spread.                     

The trial is open to people who have: 

• renal cell kidney cancer or
• melanoma

Doctors treat some types of cancer with an immunotherapy. This is the standard treatment  for advanced kidney cancer, melanoma and some bowel cancers. The immunotherapy drugs you might have include ipilimumab and nivolumab or pembrolizumab.

Immunotherapy works by helping the body’s immune system  to kill cancer cells. How often you have this depends on the specific drug you are having. Research suggests that this may be too often. You might be able to have treatment less often without affecting how well it works. The benefits of this could be:

• fewer side effects
• fewer hospital visits
• improved quality of life 

Everyone joining this trial will have had or be having 12 weeks of immunotherapy. As part of this trial you then have more immunotherapy: 

• on the usual schedule or
• less often than usual on the newer schedule

The main aims of this trial are to find out:

• whether giving immunotherapy less often is as good as the standard schedule
• what the side effects are when you have immunotherapy less often
• how having immunotherapy less often affects quality of life

Hello Mumm

I'd hoped that you would have picked this up. Having followed the link, we have learned that IT IS a trial - no one has asked my wife if she wants to join in, so we weren't sure. She has a further treatment tomorrow and hoping to get some more 'info, so will post then. We have an appointment with her oncologist on 26th, so not expecting to learn much tomorrow, but will keep everyone up to date after speaking with her Onco. Less frequent treatments is attractive on many levels, but we're a little nervous about changing her treatment, which is natural.

All best wishes, Bodger

Change of treatment for my wife on Immunotherapy - Monoclonal Treatment - follow up

Sorry Guys for not following up my earlier posts regarding a proposed change to my wife's treatment. She has stage 4 RCC with extensive mets. Her general condition was 'stable', and had been for three years, which was good news, but around October last year, she discovered a lot of discomfort walking and a large tumour was found just above her right knee. It was embolized to cut off the supply of blood and nutrient to the tumour plus Radiotherapy, but there was the added complication of her having to have a pin inserted to strengthen her femur. She was bedridden for around 6 weeks, but came through it and is gradually recovering with increasing mobility. The tumour in her femur has disappeared but they will keep an eye on it. There was some discussion about putting her on a trial for her RCC, but this now has been shelved. The reason being that a new tumour has appeared on a lymph gland at the back of her neck. This has now gone through the necessary scans and it is planned to start Radiotherapy in the next week or so. 

Her Onco feels that whilst her Nivo regime is keeping her main cancer at bay, she should continue, and he will deal with any immerging tumours that might arise. He has mentioned Cabozantinib as a possible way forward since he feels that the Nivolumab may be losing its efficacy but wants to see how she gets on. 

Best wishes, all

Bodger

Thanks for the update. Wishing you both the best.