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My husband was diagnosed with rcc in December last year and the kidney was removed in January which he has recovered fairly well from.
We were told at the time that it had spread to his lungs, but treatment was delayed as the histology report took 5 weeks to come in. The oncologist has now told us that he will have immunotherapy as the first line of treatment. What I would like to know is how frequently treatment to start with, as this is such a new treatment there is no information available.
I have the added complication of a disabled child so planning is very important for me. All information gratefully received.
Thanks for getting in touch and welcome to the online community. It’s understandable to have lots of questions about treatment.
There are different types of immunotherapy available to treat RCC. One of the most commonly offered is nivolumab.
NICE guidelines which govern the use of immunotherapy are currently reviewing a combination of nivolumab and ipilimumab for treating RCC that has spread for some people.
Knowing the name of the drug being offered would be helpful to make sure you are getting the best possible information.
We’d encourage your husband to get back in touch with his consultant or named specialist nurse. They will be able to let you know the name of the immunotherapy being offered.
It’s important to look after yourself too. Some people find the support offered by our kidney cancer group can be invaluable.
I hope this helps. Please don’t hesitate to get back in touch if you have any further questions. Best wishes, Kelly (Macmillan Information Nurse Specialist).
My husband was diagnosed in Nov 2010 and had his kidney removed in December. There was a little confusion about the follow up scan which didn’t take place until August 2011 and in September we were told that R now had lung metastasis and was referred form our district hospial to The Christie in Manchester. Professor Hawkins team saw us many weeks later, it was a long wait for the appointment. Here they told us that they were very surprised that the mets had been spotted since they were so small. Lots of treatment options were discussed and a 3 month watch and wait decision was made. Interleukin Two (IL2) treatment was discussed at our next appointment as the mets were growing and the team felt that this would be a wise first choice. The treatment was scheduled for August 2012 as I am a teaching assistant and August is Rs quietest month of his self employed working year.
The treatment is aggressive, there’s no getting away from that.
It took R two years to get over the exhaustion but it put a halt to the disease until Dec 2017. So it was worth it. Then life began again and we said yes to every invitation, R did a skydive raising £5k and we did as much travelling as money and work allowed
Currently we’ve hit a rough patch but we’re still smiling and will carry on.
Stay positive.... it really does make a difference.
I understand it is going to be the combination of nivolumab and ipililimumab I think. Hope that helps.
My thanks for your thoughts and information. My thoughts are with you.
Thanks for getting back in touch. I hope you found my colleague, Kelly’s reply helpful.
Until recently, nivolumab and ipilimumab were only available to patients taking part in a clinical trial. This means it’s difficult to say exactly how these drugs will be given.
However, patients in the Checkmate 214 trial were given nivolumab and ipilimumab through a vein every 3 weeks for four cycles. Then patients switched to a single drug, nivolumab. This was given every two weeks. It might be worth having a look at our information on this combination of drugs.
I hope this is helpful. And it’s great to see such support from Olympics 2012. Our online kidney cancer group can be a good source of support too, a place to ask questions and share experiences.
Please get back in touch if you have further questions. Or you can give us a call if you’d prefer to talk things through with one of the nurses.
Carole (Macmillan Information Nurse Specialist)
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