So, two and a half years into my life with renal (kidney) cancer, immunotherapy is underway. Nivolumab and Ipilimumab have been used to treat melanoma in recent years and is now being made available for renal cancer patients. It was only introduced to the PDS four months ago. There seems to be quite a lot of information about the drugs, how they work and potential side effects, but I have found little in the way of patients personal experience with this treatment. That in mind I would like to share my experience over the next few months while these drugs flow through my system. As a base line i'm 54, a bloke who is resonably fit, non smoker, previously a social drinker. Happy to eat my vegies and fruit and enjoy activites that involve some exercise. My left kidney was removed soon after diagnosis, six months later I had radiotherapy to Lymph nodes in my chest, six months after that further radiotherapy was given to the same area. After a year of just surveillance, my recent CT showed spots on my right lung which are now being treated with Immunotherapy. (22.07.2019) First treatment was just over week ago, if all goes to plan it will continue every 21 days for a total of 4 cycles. After that the Nivolumab will continue every 2 weeks. Like traditional chemotherapy drugs Nivolumab and Ipilimumad are given via an intravenous drip. The process took about two hours with saline flushes in between. Side effects during the treatment were zero, I felt exhausted at the end of the day but had been quite nervous before hand, and during the the treatment so put that down to anxiety. Over the next four days I experienced all the symptoms you would expect from a virus or nasty cold. Head ache, muscle ache, loose motions, swollen glands in the neck, slightly dizzy, tiredness and fatigue. I also had a couple of very brief sensations of nausia. These were all pretty minor, the biggest problem was brain fog and finding it hard to concentrate. By day five the worst was over, I continue to have a very mild head ache and feel a similar fatigue to that experienced during radiotherapy. I also have an ache in the area treated by radiotherapy. All this has been discussed with the incredible oncology team who look after me, I have been advised to keep checking my temperature and report anything of concern. Otherwise my experience is apparently quite unremarkable so far. (29.07.2019) Second Treatment Postponed. A quick update. Due to blood results showing poor kidney function the next round of treatment has been delayed a week. I’m good at keeping hydrated but by increasing my fluid intake should solve the issue. Over the last three weeks the sides effects have been quite easy to cope with. Very mild head aches rarely needing Panadol. A rash has developed at the top of both my inner arms, a similar rash also appeared on my lower back. Using a sorbolene cream there is little irritation, if it becomes uncomfortable I just apply more. Over the last couple of days, before the next treatment was due I was starting to feel quite unwell. Very tired all the time, unpleasant head ache and neck ache. Shooting pain through my jaw and forehead. Having increased my fluid intake over the last few days I am feeling well. (12.08.2019) Will update following next treatment, fingers crossed!
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Hi Annette46, in reply to your original message posted way back in January. I am in a similar situation. Although perhaps a bit morbid It does seem to help knowing others are on a similar journey to yours. The left kidney was removed 18 months ago with good margins, the tumour was quite advanced and it was only by chance it was discovered. I recovered quickly and got back to work. Six months later scans showed lymph nodes in my chest were suspect and following a biopsy sure enough it was renal cancer. A course of radiotherapy followed, once again after a period of recovery it was back to work and some form of normalcy. Six months on and once again I was told “it’s bad news I’m afraid”. The original radiotherapy had missed one of the diseased nodes. After much thought and consultation between drains far more advanced than mine another dose of radiation was organised. With that over I have just returned to work (my employer has been very accommodating). Obviously I have omitted so much of my story so far but I noted from the replys you received that like me there is a sence of being alone in this. All our situations are different of course but for me at least reading others experience helps me prepare for the next six months and beyond. I am 53 and hoping to get old with my very supportive wife, my two daughters have given us two grand children each. How greatful I am to those Doctors and specialists who have give me more of a chance to spend time with my loved ones. I have read in your subsequent posts how you still have a fight on hand, I wish you and others on this difficult path the best of luck and the strength to fight.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.