retifanlimab immunotherapy trial? Has anyone any experience of this

Hello El

I'm afraid I don't remember seeing Retifanlimab mentioned on here, but that isn't to say that someone might have had it.  What I do know is that there is a trial which ends this month where patients that had anal cancer (and other types of cancer) were treated with a placebo or Retifanlimab alongside carboplatin/paclitaxel.  It may be that during the trial (which involves regular scans) they have found that the Retifanlimab is effective and now offer it as standard to patients with spread.

I have no experience of the side effects, there is a list but it may well be that your Mum will not suffer any of them or just one or two.  The team treating her will certainly keep on top of it with regular checks and additional medication if needed.

I know your Mum (and you) must be apprehensive, I do hope her treatment goes well.

Irene xx

Hi there Irene 

thanks for your message. Yes the trial you are talking about is the one which she is on. I’m fairly sure she only just got on it because it’s no longer being offered. Had her first day of it today and we have seen that it’s now been approved in the US. So I’m guessing that’s pretty pretty promising. Has been going a number of years in the UK.

From what she’s said they monitor you fairly closely with lots of blood tests and scans etc. so will see how she gets on.

we have heard some good things about trials for colorectal cancer so hoping it will help the situation somewhat 

thabk you for your kind wishes. She seemed in good spirits when I spoke with her earlier 

x x 

After I finished the standard chemo radiation for Stage 4 Anal cancer I received a similar drug, Opdivo (nivolumab) here in the US. Due to the size and spread of my initial tumor, my oncologist said I needed this drug or I most likely would have a recurrence within a year. The drug I received is similar in action to the one your relative is receiving. These are immune stimulating drugs, ie, they allow your own immune system to fight/destroy the cancer cells. To my knowledge, the Anal cancer cells secrete a protein which hides the cancer cells from your immune system and these interrupt the production of this protein. This allows your own immune system to kill the remaining Anal cancer cells. 
I was on the Opdivo for 5 mos. I was supposed to take it for a year, but developed a severe tenosynovitis in my hands so the Opdivo was stopped. My hands are back to normal now, and I saw a rheumatologist who thought the problem was due to the Opdivo. 
That said, you need to be aware of anything out of the ordinary in your relative, such as yellow whites of the eyes, confusion or worsening mental status, new shortness of breath, or as in my case sudden severe pain in joints. These are the main side effects that are of importance. The reason is that the revved-up immune system can attack normal tissues also. 
I really think that the Opdivo in my case saved my life, and despite the tenosynovitis reaction, I would do it again. These drugs are on the cutting edge of oncology and are given to folks all over the world as part of cancer care. Opdivo was developed in Canada, not that it matters. 

I’m cancer-free at 18 months which I attribute to the Opdivo. Good luck with your relative, hope they do well. 
By the way, I was 70 years old when I received this drug, not a spring chicken. 
If you have any concerns or questions, I’m here. 

I can't remember the name of the drug he's on, but a friend of mine is getting immunotherapy and is doing FANTASTIC. But he's got a lymphoma type of cancer, while anal cancer is squamous cell carcinoma, and apparently they react differently.

That may well be totally useless info in this circumstance.

Suz

Hi socks 02

thanks for getting in touch. I’m really pleased that this trial has been a great success for you. And that you are doing well.

it sounds like the side effects have been significant for you but also the impact of the drug has been very good also. Sounds good that you persevered with it over time.

i will definitely be wary of the side effects and the trials team are keeping an eye on her. I’m hoping that she’s on the real drug rather than a placebo but we shall see. 

this particular drug  I’ve seen has been approved in the US this March 2023 so that’s a good thing to know for retifanlimab. Like you said it’s cutting-edge oncology all this stuff. So we are hoping for a positive impact for my mum and other people on the trial also.

Thank you for  your getting in touch and may ask a few things at a later date. It’s all very complex the science behind cancer and treatments. :) 

Thanks Suz-it’s in her lymph nodes so maybe some similarity somehow. However great to know your freind is doing well on immunotherapy. I’ve heard good things about it all. These trials it’s seems are monitored closely and any side effects managed.

it seems that it could be the future and that really could drastically impact outcomes for patients as a result. It would be amazing if it all works x 

I know it’s confusing. I do know that Opdivo and Keytruda are in a study specifically for anal cancer. If you look it up these drugs online, it’s very confusing. The immune sensitizers are being used off-label for different types of cancers. In the past they were used only for patients with terminal cancers; it was found that they seemed to slow down progression of cancers, allowing more time for the patients to live their lives. Now they are being used as part of treatment for potentially curable cancers. As I said in my last note, the Opdivo ( nivolumab) I received is thought to be more specific for anal cancer ( squamous cell carcinoma) by interfering with a protein secreted by the cancer cells that allows your immune system to attack any remaining anal cancer cells. So basicly, by taking it I am kind of a Guinea pig!  I think these drugs will eventually be used routinely in cancer treatment. 
So, I hope your relative who’s been enrolled in a study, understands they are participating in order to find new ways of possibly aiding in the cure of anal cancer. This is very important for future sufferers of this terrible disease. 
I hope she’s getting the drug, that it helps, and they don’t suffer any complications as I did. 
As I said before, I was very apprehensive when starting the Opdivo, but decided to follow the orders of my oncologist. Even though I was unable to take it for 12 months, I did take it for 5 months which I hope was enough. So far, so good!

I now also tell EVERYONE that have kids or grandkids < 45 years old to get vaccinated with Gardasil, which could eradicate about 9 cancers caused by the HPV virus, of which anal cancer is one. This is one thing all of us can do!

Hello El, I have a friend who is on immunotherapy. I don't know the name of it, but he first had cancer of the throat - a quite heavy smoker - and had radiotherapy which cured it. However it returned in his lung so he was put on immunotherapy and after about six months the cancer seems to have gone, but he said he'll complete the twelve months course. Bee

Hi bee - thanks for sharing that.  Wow so it’s got rid of his cancer amazing to hear that. I’m hearing lots of positive things about various trials.

can take a while to sort out but it’s seems really what have you got to lose if the doctors think it might help you. Heard it does make your immune system work on overdrive which causes issues but to me seems like it might be worth that for the longer term benefits and outcome.