cancer recurrence

Hello ALEXbukaf4650d 

I had carboplatin/paclitaxel prior to the chemo/radiotherapy treatment as I had a spot on my lung so was stage IV at diagnosis.  I was offered the chance to have immunotherapy combined with it but this was under trial conditions (as it was at the time) and crucially, I wouldn't have known if I was getting the immunotherapy or not, it was a blind trial.  So I didn't go ahead as it meant much further travelling to a different hospital which if I had definitely been having the immunotherapy I would have done.

So sorry, my experience isn't exactly what you are looking for, however, I wanted to reassure you that the carboplatin/paclitaxol is a well-tolerated chemo and very effective for the treatment of anal cancer.  I was told that it could eliminate the spot on my lung, but in any case they went on to do lung ablations afterwards as they hadn't completely cleared.

I had a quick look online and there is no reported shortage of Retifanlimab so I think this is definitely worth taking this up quickly with your oncologist especially as you turned up thinking this was the plan.

Wishing you the best of luck, please let is know how you get on.

Irene xx 

Hi Alex,

I have just finished carboplatin and paclitaxel combined with immunotherapy: RETIFANLIMAB. This treatment was just approved for use in the US in May of 2025 after clinical trials had been completed.

I am now in the middle of having 25 rounds of radiation therapy. The chemo/immunotherapy treatment went well and I had very little side effects (besides the low white blood cell counts/red blood cells..).

Early in 2025 I had been diagnosed with Stage3 anal cancer and went through that process. Unfortunately, the 3 month PET scan revealed that although the original anal cancer had been resolved, it had spread to the lymph nodes. 

During the carboplatin/paclitaxel/retifanlimab treatment, they were no longer able to see any visible signs of the cancer on the PET scan. However, to ensure that it is completely removed, they are doing the radiation.

I'm located in the US, retinfanimab is available here. 

Where are you located? 

I hope your treatment goes well.

Gina

Hi Gina, I am on round 2 of carboplatin and Paclitaxel combined with Retifanlimab ( I am in UK but oncologist was involved in clinical trials so was able to access it for me). I was diagnosed with active cells incolorectal area (no obvious tumour) and the secondary cancer cells were found in my lymph nodes. The message from my oncologist is incurable but manage and control , to increase time between treatments . I’m handing the chemo ok so far but the thought of regular treatment after the six months is hard , did your oncologist give you a treatment plan going forward after the radiotherapy. I will be on immunotherapy monthly after the chemo finishes so a year of immunotherapy in total. Sorry to ask so many questions its just that no one seems to know . Thank you Marilyn 

Hi Gina,

Thank you for your message.

My oncologist in the UK had planned for me to receive carboplatin and paclitaxel combined with RETIFANLIMAB but I was later told this wouldn’t be possible. I am now on the second circle of the receiving   carboplatin and paclitaxel without RETIFANLIMAB. This was very upsetting, as this treatment was my main hope to avoid extensive surgery total pelvic exenteration.

I was advised by my oncologist, Dr. Rao, that the only option may be to travel to the US with a referral, which would be very costly for me. I was wondering if there might be a chance to speak with you privately to discuss this further. If possible, could you please share an email address or phone number? or maybe you can contact me. my number: +447805011342

This massage I received today 

Thank you very much for your time and understanding.

Alex

Hi Marilyn 

May I ask who your oncologists is and what hospital you are getting treatment?

I am also in the UK, and my oncologist had initially told me she would be able to get me RETIFILIMAB , but unfortunately that hast been possible.

Thanks 

Alex

Hi Alex , I am being treated at the Bristol Haematology Oncology Centre part of Bristol Royal Infirmary. My oncologist is Dr Strawson Smith . He applied for a compassionate donation. Which was authorised just before Christmas , and I received my first dose on 22nd Dec and had another dose yesterday . Hope this helps and good luck 

Hi Marilyn,

I'm sorry to hear that you're going through this.

Are you having radiation therapy to those two areas after the current chemo/immunotherapy treatment?

I had four rounds of chemo/immunotherapy and now 25 rounds of radiation therapy to the two lymph node areas. After this ends, it's a pet scan in two months. The team thinks that this will eradicate the cancer in those two areas.

My Oncologist believes that cancer is likely in other lymph nodes which we'll eventually need to treat. He does feel that we can put the cancer into remission eventually. I'm just not sure how long this road is..

Also, I had some neuropathy but wore ice mittens/booties which helped a lot! I was able to get these on Amazon for about $40. or so..

I hope everything goes well for you.

Best,

Gina

Hi Alex,

I'm sorry to hear this. Is radiation therapy an option?

Maybe you could try going to Bristol Royal?

Best,

Gina

Hi Gina thanks for getting back to me, that sounds very encouraging , I have an appointment with my oncologist in a couple of weeks I’ll ask about radiotherapy then ,I guess its early days and he’s waiting to see how I respond, I have a scan after three months of treatment at the end of Feb so fingers crossed its having an impact. Like you so far so good with the combined treatment I’m not feeling too bad. I’ll look into the ice mittens if the neuropathy hits . Good luck with the rest of your treatment and lets hope your oncologist can put that cancer into remission for you. 

Best Wishes 

Marilyn 

Thanks Marilyn!

I'm glad that you're feeling okay during this treatment. I hope that your cancer can be put into remission as well. 

Best,

Gina