Palliative Immunotherapy - Avelumab

I can't really help much if I'm honest as this is out of my league that's for sure. But I'm sorry you are all in this position. 

I guess the only bit of advice I can even think of really is spending quality time together while you can.

I'm far from an expert but I'd guess I would want to weigh up the pro's and cons in that situation. Weighing up the potential side effects versus the quality of life it might gain and the quality of life during the treatment, that would all probably factor into my decision if it was me in that scenario. 

I realise none of this probbaly helps but I just wanted to let you now none of us are alone in this, everyone is here to support each other in any way we can. 

Hey Simon, 

Thank you for your reply. How are you? 

Mums oncologist has obviously left the decision in her hands. Seeing as she’ll have had her initial planned 6 rounds of chemo by the end of Jan, he has asked her to consider how much ‘normality’ she wants back in her life as if she was to go in to immuno, it would be every month for a max of 12 months. He also said, she has the option to just let them monitor things with no treatment over the next couple of months. 

I guess she’s just worried, that we already know time is quite limited, so doesn’t want to feel rubbish and spend more time in hospitals than at home. 

As I initially stated, she’s done really well with the GemCarbo. They did have to reduce her dose by 20% as it caused a severe arthritis flare up though. Thankfully, that’s been her only real issue.

Our family obviously want as much time with her as possible; while hospitals aren’t a second home. We would also hate to see her suffering for the sake of potentially maintaining her current stand point. 

Apologies for the waffle, hopefully it all makes a slight bit of sense!  

I'm fine thanks I really can't grumble about my current situation when there are people way worse off than me like your mum is, so I have to be thankful for that. 

I'd hope I choose quality of life even if shorter rather then trying to prolong my life and feel awfully I'll all the time, we all want to prolong our life it's natural to want that. I honestly don't know what I'd do in your situation but I hope whatever is decided you make as many good memories as possible in the time you have left together. 

I'm sorry I feel at a loss as to what to say having watched my dad die from bowel czncer I know firsthand what it can do to a person when it is incurable. It is a horrible disease and I wouldn't wish it on my worst enemy. 

My heart goes out to you all and I hope whatever is decided pans out the best it can for you all. 

Oh and please waffle all you like on here we are all happy to read and respond to others on here. 

Having a place where you can say what you need to is important. 

Hi,

I didn't respond at first because I had a different sort of Immunotherapy (Nivolumab) but as nobody has responded re Avelumab I thought maybe you might find my experience of interest. 

First of all, I was given it as a sort of belt and braces after my operation. I had the chemo first and they got all the cancer out during the op. They offered the immunotherapy because half of my cancer cells were aggressive and bladder cancer can recur. 

The actual delivery method was infusion, the same as the chemo and in the same room in the hospital. The sessions were slightly shorter than the GemCis chemo I had but other than that were no different.

I was supposed to have 12 x monthly sessions but I began to get peripheral neuropathy - pins and needles in hands and feet (some cancer chemo can give you that but mine didn't and they thought it was rare for my immuno). So after the third session my oncologist stopped it.

We hope that the treatment had some effect re the possible cancer return but she wanted to save some options in case of actual return. I think the immuno was worth a shot for me despite having to stop

They damped down the pins and needles (caused by nerve damage in the extremities) using several weeks of steroids. And now my hands are OK and feet not too bad either unless I walk a lot (by which I mean 12000 steps or more). Even then resting helps and massage too.  3 years after my op,  with my next CT scan due in March, so far so good.

The documentation they give re Immunotherapy can be daunting - I recall being very concerned when I read it, but taking it has not caused a material diminution of my quality of life and I think for some people can make a big difference.

I hope this helps your mother decide about the treatment. Maybe they could get someone to talk to her who has had the actual type they are offering her?

All the best,

Latestart

Hello, 

My Dad (early 70s) had 6 rounds of chemo (not palliative) and then he was on Avelumab for a year. 

He tolerated the Avelumab well. It shrunk the metastasis remaining in his lung and it was much easier on his body than the chemo. He had a few common side effects - fatigue (but not drastic) and dry skin. He did also need to stay well hydrated to keep up his kidney function.

My dad had a pre existing lung condition that worsened after a year on the treatment. This may or may not have been exacerbated by the Avelumab so he stopped treatment at this point. They are relatively new drugs so it’s hard to know the long term effect they have. However, 6 months on his cancer has remained stable despite not being on any treatment. 

I’m not sure whether the schedule is the same for everyone on avelumab, but he had treatment every other week. He would go in for a blood test and then 2 days later he’d have treatment which would take around 2 hours in total. So it felt much more manageable than the chemo.

He definitely found the immunotherapy much less harsh on the body than the chemo (and he actually tolerated the chemo pretty well). He was able to live normally on the immunotherapy. He would feel very tired after his treatment as they give you an antihistamine. So treatment day was a bit of a write off. Apart from that, he managed really well and had a good quality of life.  

I hope this is helpful and good luck with everything.