Hi. I’m in a similar, but opposite situation. They found my cancer had returned 2 years ago, but they haven’t done a thing yet - apart from CR scans to monitor its growth. Chemo was mentioned (as a last resort) at the outset, but has not been offered. I understand chemo is largely unsuccessful for kidney cancers anyway. What have they proposed for your meds to stop its growth? I’m interested for my treatment.
I will give you all the information after Tuesday. I've had all the scans a biopsy, the first scan said it was roughly 6cm.
When the consultant did the biopsy said it was a lot smaller with no swelling. I suffer from COPD so an operation would not be safe. So like I said they are going the tablet way.
Hi - I'm on ipilimumab / nivolumab - top treatment! I got 4 doses of ipi, then monthly infusions of nivolumab. Immunotherapy drugs have been a game changer for kidney cancer. Like MuttleyBC says, chemo (and RT too I believe) isn't effective for KC. My lung mets are no longer visible and the kidney tumour 50% of it's original size at 2.6cm. Doing its stuff.
Not now. At the start when I was on the ipi, I got some itching. Then too much inflammation in the kidney which caused the kidney function to plummet. Had to take a course of steroids and delay treatment for 6 weeks. This is not a common side effect.
That’s very interesting to hear! The cancer hospital I’m under has suggested four different chemo drugs, one of which being their chosen one - Pazopanib, I think from memory. They aren’t giving me any treatment atm, but I’ve just had another CT scan, so I am expecting that report to reach the consultant and should be having a meeting in May to discuss action. Last scan showed the tumour to be 65mm, so - as, when they did a partial nephrectomy some 10-12 years ago when it was 40x45mm (min size for operating was 40mm), I’m expecting some positive action this time. I understand from the consultant, that chemo can give bad reactions, so I’m not looking forward to starting that - especially if it’s a very low success rate! They are very reluctant to operate as I have heart issues, so any kind of positive treatment and results are welcome. Also my age is against me - I’m 75, I saw a post a few days ago from someone who was 77 and he’d been refused an operation. As I was 73 when the latest diagnosis was made, I’m wondering if there is an age-it’s policy existing in the NHS? Their lack of any treatment of course puts additional years on me, making any operation more unlikely.
Following the removal of my right kidney back in 2017 my periodic follow up scans showed the all clear until 2019. But then a scan showed that cancer had returned in the left side of my pelvis. This devastated us all and I was put on Pazopanib, 800 mg’s/day to start with that I couldn’t tolerate due to the side effects (sores in the mouth,horrible taste in the mouth, abdominal pain, whitening of my skin and hair, etc) so it was reduced to 600 mg/day. I learned to tolerate this and I’m still on it now 4 years later. I still get abdominal pain and discomfort and have a horrible taste in the mouth. This builds over a period of weeks and I usually last around 4-5 weeks when I can take a 5 day break off the Pazopanib. My regular scans show (at the moment) no increase or reduction of the cancerous area so the Pazopanib is doing it’s job despite the unpleasant side effects.
Hi Audrey, I'm in a similar situation, diagnosed with a 10.5cm tumour with spread to right kidney, lymph and lungs. I have to wait 2 1/2 more weeks for biopsy then 2 more weeks for consultant appointment to hopefully start targeted immunotherapy. The wait seems so long, but I'm scared of the immunotherapy side effects as I need to look after my husband who has Alzheimers.Good luck with your cancer journey, I hope it goes well for and would love to know how you get on.
Hi Dena, sorry to hear your news, Waiting is the worst part. I had one scan at first which they said was 7cm big on one of my kidney and showed a spot on my lung, so was told I need another thorough scan to show every thing which they did and then told i need a biopsy. I waited two weeks and was told the biopsy specialist was brilliant which he was and took two biopsys and he said he had two good ones and he thought the cancer was smaller and the swelling had gone down. i then waited to see the consultant which i did last week and his news was that it was a slow growing tumour. i have had trouble with my bowels an being investigated by my local doctor which the consultant said i need to get sorted fist and then we will go from there.he was brilliant and also worried about the medication which he was not happy to give me at this time because it would give me a very high risk of very high blood pressure and a certain bleed on the brain. So we are in limbo at present waiting for his letter to our surgery. The Macmillian nurse is keeping us in touch and said she thinks he will put us back with the onocology team.
Well look after your selves and keep us in touch with your journey.
