Immunotherapy

Thanks. I want rid of the manky kidney as soon as possible!  6cm tumour on one kidney not likely to shrink to nothing!

Hi,

My journey:

Jan 21 was diagnosed with metastatic Renal Cell on my left kidney with 8.5cm tumour and spread to my bones, primarily the hip and pelvic area and spine, and also spots in other various places, lymph, lung etc.  March 21 started on targeted immunotherapy (avelumab, four weekly) and daily chemo meds (axitinib).  Have not had any problems/issues with the immunotherapy, but the axitinib was started on a high does that I had to have it reduced after a few months because I couldn't tolerate the affect it had on my mouth (Mucositis).  Still have one or two issues with hot and spicy foods but not anywhere near as bad as it was.

Dec 22 scan showed the tumour had shrunk to 2.5cm and no signs of the cancer in the bones, which are still compromised but thankfully clear. Still have one or two shadows and small spots but they are too small to tell what they are.

March 23 had the left kidney and tumour removed by robotic surgery.  All done, in and out within 36 hours. At 73yo I guess one kidney will see me through. 

April 23, restarted the immunotherapy and meds, which will continue for the foreseeable future

Had my 29th session of immunotherapy yesterday.  

As other's have said here, everyone is different and everyone's experience is different , but all I can tell you is be positive and try not to worry.  It worked for me and there is no reason it won't work for you too

All the best and take care.

Thanks for the update on your Journey. So glad it's working for you.

All the best

Thank you.  And I'm sure it will work for you too.

Be positive

I started on the same immunotherapy  drugs in May. Have tumour on left kidney and spread to lungs and ribs. After two treatments I had another CT scan and they were very pleased to see reduction of size everywhere. Was due to have my 4th treatment on 24 July, but blood showed that I had the side effect where the immunotherapy had attacked the kidney and liver so I'm in hospital having steroids which has resolved the problem. Unsure where I go from here regarding immunotherapy as everyone needs to be tailored to themselves. In myself I feel really well as the treatment was working well. The fact that I managed to get 3 in before this happened was good. Being in hospital and seeing everyone else at various stages brings it home to you that this is an ongoing battle and you have to go from one blip to the next. Sieze the day as they say, a smile goes a long way.

Thanks for your message. I know a lot of people end up on steroids. But it seems at least like your journey is working for you for the time being. Best of luck with everything I hope you have a successful outcome

Hi Theo

Having read lots of posts on here about different treatments, I'm glad I'm on immunotherapy and not on chemo! It seems to cause more side effects. I've been on immunotherapy for a year now, and it's been ok apart from one 'blip'.

Hope everything goes well!

Thanks for your message. My first course is now on 15th August nivolumab / ipilimumab. Looking forward to starting and equally dreading! time to roll the dice i guess !

That's the same combination I started on, and seems to be one used a lot for renal cancer patients. I understand that you are apprehensive about it, but you really needn't worry about the procedure! The nurses at the treatment clinic I attend are absolutely fantastic, so calm and reassuring. You will be gently talked through the procedure, and they are very good at spotting if you are needing reassurance or are nervous. If they are not too busy attending to other patients, they will chat with you, and at least at my clinic, they supply you with tea, coffee, biscuits, lunch etc. The procedure itself isn't painful.

One thing to be aware of is how long the whole thing takes. The two drugs are not administered at the same time, but separately. This takes AGES and can be very boring! You will be sitting in a chair and not able to wander about, so take with you anything that will occupy you, such as your mobile for texting, a book, Kindle or audio book, headphones etc.

After my very first treatment, I went to bed that evening expecting to feel like sh-t the next morning. Actually, I felt really good! No signs of any side effects at all. So I went out for a walk in the forest with my dog, absolutely over the moon that I felt OK. This has continued to be the case, and I have been on the treatment for a year.

I wish you all the best, and that your treatment does its job!

Thanks so much for this information .  Very helpful. I hope I have the same experience as you. I read your story and I hope you, as with everyone else on this forum. Gets to have many more years ahead. 

Best Wishes