I received the results of my 6 month post treatment PET scan and the tumours have grown. There’s also spread to my bladder and womb nodes.
I have started immunotherapy ( Retifanlimab) and double chemo Carboplatin and paclitaxel today. Has anyone else started this regime? Or been told the cancer is longer curative? x
So sorry to hear your news .I had the same chemo last year but not the immunotherapy
It shrunk my tumour and I also had a lymph node which it shrank .
Then I had surgery .
I hope the immunotherapy and chemo shrink your tumours .
I will be thinking about you
Take Care
Wendy xx
Thank you Wendy! Great that you were able to have the surgery. Was it refused before? x
Hi yes after the chemo radiotherapy as there was the lymph node they said surgery wasn't an option only chemo
So put your faith in the chemo and immunotherapy
As the chemo shrunk the tumours and the lymph gland went they then said I could have surgery
I won't lie it's been hard but I tolerated the chemo well and I think Irene had the dame chemo.
I lost my hair straight away but got a wig and got neuropathy in my feet but wasn't too ill.But your having immunotherapy as well.let us know when you start and how you get on .
Wendy xx
That news has given me a lift Wendy - thank you. I’m glad you weren’t too ill - it’s such a day by day thing. I’ll keep you updated on the immunotherapy combi xx
I'm glad that's lifted you that's one good thing about this forum there's always someone who you can share with so your not alone which is the worst thing
Take Care xx
Wishing you well with the new treatment, I haven’t had it myself but have heard good things about it.
hugs
Happyflower
xx
Hello Neuro72
I am so very sorry to hear this news - you must be reeling.
I was stage IV at diagnosis (pelvic lymph node involvement and a spot on the lung) and underwent Carboplatin and Paclitaxel for six cycles first. That chemo combination shrank everything and controlled spread. I tolerated the chemo well apart from an early hiccup when my liver levels meant I missed a session. I lost all my hair but found a wonderful seller on Etsy who made lovely soft chemo caps which I had to match my summer outfits, I had bought a wig but never took it out of the box once I got used to the caps, please let me know if you want details. I then went on to have the standard Nigro protocol followed by ablations on both lungs.
I found differing opinions depending on who I saw during my treatment; one oncologist said (very gently) during that first six months there is no cure for stage IV cancer. But that said I am now three years and three months out of any active treatment, and apart from lung inflammation (which they say is just that, inflammation) everything else is clear.
I tell you this not to offer false hope but to underline that no one doctor knows how any patient will respond to treatment. Sometimes (but not always) the response is so good that it opens avenues of treatment that weren't on the table before. I have heard very positive reports about immunotherapy in advanced anal cancer. I very much hope that this is the case for you,
There are also patients that are living a good life with cancer and ongoing, lifelong treatment.
Please let us know how things are going, and we are here to support you however we can.
Big hug
Irene xx
First, I am sorry to hear about your news.
my wife is just staring this journey, She is 59, healthy, and boom! April 14, 2025 all has changed. She was diagnosed with Anal Squamous Cell Carcinoma- stage 4 with Mets to her liver. Everything happened fast for her.
Her Dr started her with Retifanlimab and the chemo Carboplatin and paclitaxel. She just finished round 2 (4 treatments). She is the only patient at this rather large cancer center to be approved and given the Retifanlimab. She is truly blessed to have this opportunity.
She has taken no serious issues with the treatments. I believe her follow up PET will not happen until July/August. Until she completes 4 rounds of treatment.
among other things, she has altered her diet to mostly Keto. No sugars or carbs.
Her main issue is tenesmus at the moment, just flared up 3 days ago. We are not sure if it is due to the tumor (due to its location) has changed. Rather difficult time at the moment, she does have a visit with a specialist to examine and go over solutions. Other then that, she has responded well.
We will pray for you and if we can offer any input, please let us know. You are never alone on this journey!
Whatever cancer throws your way, we’re right there with you.
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