Immunotherapy or chemo?

Hi ayl-a

I am very similar to your mum. Diagnosed with SCC OC in September 2022. Had chemo and radiatherapy through to Feb 2023 where I was initially told the tumour has shrunk but by June I knew it hadn't. Fast forward to October I started immunotherapy (Nivolumab) in the hope it would regress the tumour and told I could be on it for 2 years if I respond well 

After 2 cycles i was admitted to hospital with breathing difficulties.  This was due to the tumour now being higher in my throat, wrapped around my carotid and blood vessels making surgery impossible and I would not get off the surgical table. They offered me chemo which I was told would be harsh, hair loss and total neuropathy and it may extend my life by a few months. So not really and option. I'd prefer quality over quantity every time.

But I have continued on immunotherapy.  Since leaving hospital 3 weeks ago I feel alot stronger and sleeping better.  Now it's probably the nebuliser and steroids but I am hoping and praying its the immunotherapy.  I have read such good things about it and is really good foe oesophagal cancers. 

At least immunotherapy offers me hope.  All others options are end date scenarios and I'm not ready to accept that yet.  I haven't given up on me.  

Hope this helps.  

Mel

Hi Mel

Thanks so much for sharing that and I'm so sorry for what you're going through. Witnessing it first hand with my mum, it's truly awful and I'm hoping for the best for you.

Can I ask what side effects you have had with Nivolumab? Mum wants quality over quantity too and her oncologist has said 10-15% of people get terrible side effects that can become just as life threatening as the cancer. I think immunotherapy would be her preferred option but where we live we would need to self fund it so it's a big decision.

Thanks

Ayla

Hi Ayla

I was admitted to hospital after my second infusion of immunotherapy.  This was due to my breathing deteriorating.  They say it was due to the tumour, but they also said the immunotherapy will make things worse before they get better.  So not sure if the immunotherapy caused this or whether it was tumour progress.  Otherwise, I havent had any other side effects (touch wood).  Having come out of hospital I am stronger and sleeping more soundly.  My breathing is much better.  Now this is either the immunotherapy working  or the steroids and nebuliser that I left hospital with.  I don't know. And won't know until I have scans.

What I do know is I am not having the same terrible side effects I had with chemotherapy or radiotherapy.  I too choose quality over quantity and at the moment I am happy with my decision.

Next immunotherapy is this Tuesday so hopefully onwards and upwards.

It also seems grossly unfair that you have to self-fund immunotherapy.  Can you not challenge that?

I really hope this helps. I know it isn't cut and dried but it is my experience so hopefully it will give you a different viewpoint.  Always happy to discuss if I can help in anyway

Take care

Mel

Hi Ayl-a,

I was given a different chemo regime called CAPOX and with immunotherapy Pembrolizumab. My treatment is also deemed palliative however my mindset is that this is treatment to live with cancer and hopefully keep it under control. My side effects on these treatment all told have been minimal until my last cycle feeling more nauseous and peripheral neuropathy, pins and needles in feet and hands.

I have heard wonderful things about the Marsden and I'm sure your Mum will be offered the best possible treatment there even if your current oncologist has not given you much hope.

Best wishes and hugs to you and yourt Mum.

Hi Mel so sorry to hear they can't help you and think you are so brave and I think your positive attitude is so good.

I have Oesophagal cancer and have had 4 rounds of chemo and awaiting scan results to see if it has done anything. They can operate and that is scheduled for December 29th. Obviously I'm anxious not knowing if chemo has done anything as the side effects were not pleasant and I hope it isn't all for nothing.

I wish you all the very best and you are amazing to keep fighting, good for you 

Dean

Hi Dean

Yes the side effects of the chemo make you want to ensure its all for something. The radiotherapy was just as bad but hey ho.  You go through it hoping and praying its doing something.  It did initially (allegedly) but clearly not enough.  

Anyway  had my 4th immunotherapy yesterday and seeing my oncologist tomorrow so we'll see how I'm getting on and hope the immunotherapys doing its thing.  And I've got to fight.  I'm not done yet.

I really hope your scan results are encouraging and I wish you all the very best for your operation on the 29th.  Keep up your fight and best wishes to you

Mel

Hi Stebun74

Thanks so much for sharing and I'm so sorry you're going through this.

I'm based in the Channel Islands, where the healthcare is limited. They don't seem to do combination therapies here and mum has been told it's either chemo or immuno and not both, and immuno we will have to fund ourselves. The oncologist said they both work as well as each other and it's 50/50 in terms of what you choose, which doesn't really help us make a decision. It feels like we're flipping a coin and betting with mum's life. I could read for days on the pros and cons of both options and not feel any closer to making a decision!

Fortunately, our chat with the Marsden today felt really productive. The surgeon agreed that surgery is ruled out which, whilst not good news, it does give some comfort that they agree with the current assessment. He was surprised that they wouldn't try radiotherapy and all but confirmed that, if we lived in the UK, she would have gotten a chemo-radio treatment from the start. But we are where we are. He was really pro immunotherapy and said he's seen great success with this kind of cancer so we have made our decision and will find the money from somewhere.

I read your message to mum about looking at it as 'living with cancer,' and I think she's slowly coming round to this mindset. Thanks again and wishing you all the best too!

Hi Mel thank you for your kind wishes it means a lot. Yes I do hope the chemo has done something as the side effects have been pretty nasty. Should know early next week as surgery team meet on Monday to discuss my case.

I really hope you had good news at your meeting with your oncologist.

Keep fighting and wish you all the best too

Best wishes

Dean

Hi Ayla, sorry to hear it's difficult to get treatment for your mum. Macmillan do offer help to get loans etc. which may help fund your mum's treatment. Also look at Pips through the government you may qualify for that too.

Hope you can get your problem resolved

Wish you all the best

Dean

Hi Stebun74,

Just wondered how you were hoping with treatment?

Angie