Inoperable and incurable Kidney Cancer

How awful he's got cancer again , having treatment is such a personal choice,  at least he knows what to expect from treatment, ive never heard of the one you mentioned sorry, but my husbands oncologist told my husband he has people that have got 2 - 4 more years with treatment. Unfortunately my husband didn't have a spleen so had no natural immune system so nothing worked for him and he stopped all treatment as he felt so unwell on it. As I say it's a personal choice, I would perhaps speak to his oncologist and see if there's anything else he could have for his sickness , xxxx

Hi

I have incurable kidney cancer too, spread to the lungs.  I finished a 2 year treatment of immunotherapy (ipi/nivo) in June 2024 and no trace of the lung mets now.  

I would suggest you hang fire with these thoughts and wait until you discuss with oncology as these guys really are specialists in their field.  

Best wishes and everything crossed for you.  It's good that Monday is only finger tips touching distance away now.  

I hope you're encouraged by the discussions with oncology - let us know how you get on. 

Hi I have just read your post. I have incurable kidney cancer that has spread to my lung, liver and my abdomen lymph nodes.  I have had my first 4 rounds of treatment and currently on my 6 week brake. I was woundering do you remember if you where still in pain after your first lot of treatment please?

I am still in pain with where my kidney is, across the bottom of my back. 

Thank you.

Thank you so much Amerly, really appreciate your thoughts. X

Thank you so much Mmum, your experience sounds really hopeful. Will let you know how we get on when my husband sees the Oncologist today.

My husband had his meeting with the Oncolgist this morning. The doctor explained the cancer can't be cured but he offered a course of Chemo incorporating Gemcitabine - Carboplatin. 

My husband then went for an Xray of his abdomen to see if there was a blockage that might mean the cancer has spread to his brain. At this time, apparantly there is constipation blockage so hopefully Movicol will clear this and if not they'll scan to see if it has spread to his head.

Concerningly he was put under a lot of pressure from the Oncologist to take part in a clinical trial - incredibly the Dr said it would be one less patient to treat at the hospital! He then proceeded to call my husband after the appointment to push being part of the trial asking him to make a decision in an hour! I felt so distressed watching my husband just trying to cope with all the new information about his treatment let alone being put under pressure to make a decision in an hour without time to rest and consider all the options. 

On top of this, my husband has bruising on the base of his spine, which the Urologist last Thursday explained he would need a CT scan for to make sure the cancer hadn't spread to his bones. Yet the letter from the Urologist has only just come through to the Oncologist and we forgot to mention the bruising this morning when we saw the Dr!

All this aside and given the cancer is aggressive, we're both puzzled as to why he now has a two week wait before starting the Chemo. I'm watching him deteriorate week on week and can only hope he'll be able to actually go through the chemo in 2 weeks time!

So sorry for my rant. This has been such a stressful day. 

Have other people had any similar experiences? Would so appreciate any information that might help get things moving. 

Thank you so much

Oh what an experience :-(.    

I was on a medical trial between Jun 23 - Jun 24.  The decision to go on the trial was the opposite of your husbands.  It was facts first, the trial documentation and I took it all away to digest.  I was never chased or hassled.  It was always "is this something you're interested in?" approach.  I've actually been offered 2 trials.  The first one being as my first treatment option in Jan 22.  I decided the standard treatment option, ipi/nivo was safer.  

When you go on a trial, there are more checks required to verify you fit the trial criteria.  Therefore, treatment is slower to start than a standard treatment like Gem-carboplatin.  There are also more monitoring checks to undergo because it's not "standard" yet, and those responsible for your care, have to be more diligent.  For me, I couldn;t go for bloods or CT scans anywhere other than the teaching hospital running the trial.  This is because the IT system used is only available at the teaching hospital for the trial staff, and they need skilled people available instantly should anything go awry.  

A two week wait to start chemo - they maybe need time for the docs to arrive in their inbox and checks to be made.  You need a few extra checks before starting immunotherapy and I'm sure chemo is the same eg ECG.   He'll probably need a morning appointment too as a first timer because there is uncertainly how the body will react.  Also, some chemos are a 6 hour shift.  

Comments/behaviour made by the onco are inappropriate and you'd have a valid feedback item there.  

Thank you so much for getting back so quickly Mmum, I really appreciate you taking the time to do that. It's interesting to hear about your experience being approached for and taking part in a trial. 

I feel awful about perhaps letting PALS know how this clinical trial information was offered to my husband as really don't want it to affect any treatment he's given. Yet, I feel for other other patients who may get pressurised in this way further down the line. 

I'm reasurred to take your view about documentation gathering etc before the first treatment. That does make perfect sense.

Thank you so much for sharing your experience in this way Mmum, especially given what you've gone through yourself. I really hope you're doing ok?

Sending love light and hope x