Retifanlimab

this is great news. Is there any link I can give to my oncologist for the info on compassionate cases? I can’t find one. Thanks.

Sarah x

Hello Fellsider 

I am so pleased about this but also so angry that this immunotherapy which has a track record and which is in use all over the world has been held up by red tape (NICE) in the UK.  I wish all of you who needs this success in accessing this treatment, I really am thinking of you all.

Irene xx

Hi Sarah. By now you should be either about to or have already started you last cycle. Usually the hospitals which were involved in the trials in the UK can request compassionate access. Mine was. St James at Leeds. Maybe yours was also.As far as I am aware from information I can find it is given in conjunction with the 6 cycle Carboplatin and Paclitaxel regime. As I just began my last cycle of this regime this morning and only have two more weeks to go it is unlikely to be given to me alone.  However depending on my CT scan at the beginning of September. I may need another cycle 6 months later so it can be added then. It is  a 12 month course once a month.  Please of course check yourself whether it would be suitable for you. I don't want to ever give false hope or misleading information to my friends on here. I do hope you're doing well and still managing to get away when you can. I do think about you and hope all's well. X Martin. 

As you are on a similar pattern to me. I do hope you're still on track and managing to get away often. Please let me know how you're doing. I think of you often as your attitude is inspiring to me.  As my Hospital St James was part of the trial they are able to request it. Maybe your hospital was part of the trial?   I''ve been told that depending on my scan results in early September If I need to repeat the treatment again after six months they can include the retifanlimab then. I'll have more information in early September.  Martin

Thanks Martin. I’ve had a couple of delays due to low neutrophils and a real dislike by my oncologist of being consistent with prescribing filgastrim jabs. Today I had session 2 of cycle 5 so I’ll finish chemo in September. 3 month scans showed significant reduction but the end of treatment ones booked for 24/9 will be vital. And then - who knows. Second opinion probably because I’m losing confidence what my oncologist wants to do anything but wait for disease progression. I seem to be tolerating the chemo pretty well although my stamina isn’t what it used to be and the heat isn’t helping! 
so pleased you are doing OK. Please keep me posted on your results and next steps. I don’t think my hospital was a trial hospital for the retifanlimab but I will check. I have an oncology appt  on Thursday although I doubt the registrar will know. 
sarah x

Like you I too had encouraging shrinkage from my mid cycles scan. And I get tired  a lot more. As you say the weather doesn't help. You have it far worse than we do down there. At last a small benefit to living up North!  I also have some tingling and numbness in my toes. Not debilitating and classed as minor apparently. 

I'm so sorry that your oncologist doesn't seem to be supportive. When you speak to the registrar tomorrow or even the oncologist I hope you could possibly be able to insist on the filgrastim as I still get it after each session.  Also Please don't be afraid to ask for a second opinion.  It's quite usual but intimidating and you need to be comfortable with your oncologist. I am so lucky that I speak to my oncologist regularly and he gave me the news about the Retifanlimab last Thursday.  As we are on a similar path,  as I said I do think of you and how you are doing. Please do let me know how you are. I have sent a friend's request to you.  Take care. Martin

This is encouraging news Fellsider , I really hope that the decision is favourable & those that need this treatment finally have free access to it. Thinking of you all.

Nicola 

I’ve accepted your friend request and also sent you a Facebook friend request as I know you are in the Bottom Line group there. I am documenting my journey on Facebook as it’s often easier than telling people over and over again! 

Thanks Sarah. I've acceptaed that. 

Saw my oncologist yesterday and mentioned the immunotherapy. This is the difference - she was very much ‘well we wouldn’t normally repeat this regime, you might not meet the very strict criteria, there has to be a really clear clinical benefit…’ - all very negative. She was the same when I asked previously about things like ablation if my scans show good improvement. But I will keep advocating for myself and I think there’s little to be done until we see what the scans show in October and hear what she thinks then. That’s the point I’ll ask for a second opinion if need be. Oh, and she told me she’s reduced my Carboplatin by 20% for this one  and my last cycle because my neutrophils are so unreliable. It is what it is, but hopefully it’s still enough to continue to cause some damage and at least I feel OK still.

We have been away in the UK on every week off but won’t do this time as it’s still peak school holidays and I doubt we’d find anywhere decent at the last minute. Will do catch ups with more distant friends and get some day trips in. Hope you are still thriving. x