Finding out what treatment I will get

Hi Shazzy2 That is great news good for you. Well I know I am suitable and it's been mentioned before. I have only heard good things . I am sure someone will be along soon . All the Best Minmax I think a treat of some sort might be in order today lol 

Hi Shazzy2

I've had immunotherapy, but there are so many different drugs, all developed for specific cancers, so you may get more detailed responses if you ask about it in the lung cancer forum.

You can read about my experience of immunotherapy on my profile.

As a general comment, immunotherapy seems to be less 'toxic' to the body, with fewer side effects than chemo. However, some of the side effects from immunotherapy can be quite serious, and permanent. You'll need to read through all the info you're given, to make an informed decision.

The clinical trial sounds interesting! It's good that you are being offered the chance to take part in it.

Hope it goes well for you!

Kate

There are many different immunotherapies - which one are they suggesting for you? I have had Pembrolizumab for triple negative breast cancer, but I know it’s been used in SCLC for longer.  Happy to share my experience if that is your drug. 

Hi Minmax and thanks for your reply. I’m looking forward to finding out more about it from people here . I’m grateful that others are so willing to share their experiences, find it both generous and helpful. Good idea minmax I think I will have a treat today. Enjoy the day and be positive Sharon xx

Hi codfish thanks for your reply. will be getting pembrolizumab like you have had. I would appreciate you sharing your experience. I have NSCLC and I’m hopeful that the immunotherapy together with the trial drug will help me. Enjoy your day and stay positive. Sharon xx

Hi Candysmum thank you for your reply. I have read your profile and you really have been through the mill. I will be getting pembrolizumab and a trial drug. I think that whatever an individual decides in regards to their treatment is so personal to them that as a community we would support them. I will ask in the lung cancer forum also. As I have not started my treatment I don’t know how I will react or feel about any side effects. Thanks for you good wishes.Enjoy the day and be positive. Sharon xx

Hi i was also on that drug for NSCLC, was easier for me than chemo, and at the time, i completed every weeks for two years. 

Though i do believe now could be every 6 weeks.

Hi Ellie thanks for your reply. I also have NSCLC so it’s great to hear that you completed your treatment over the  course of 2 years. I am hopeful that the combination of immunotherapy and the trial drug will help with my condition. Enjoy your day and stay positive. Sharon xx

Hi Shazzy2 

I had 4 200ml infusions and 1 400ml infusion in 2023. I was meant to be on it for 2 years but had to stop due to a serious immunotherapy related adverse event that caused kidney, thyroid and lung damage.

The good news is it worked for me. I had 2 liver mets, the larger one with satellites forming. They scanned me once I was well enough following the IRAE, and the larger met had shrunk to a seventh of its size and its satellites had disappeared. The smaller one had shrunk too. 3 months later, the tumours were still there but dormant, so I had the residue burnt out using an ablation procedure. I have been in remission ever since. 

Until the IRAE, I had no side effects other than a rash that came up after the 3rd infusion. 

As you probably know, it’s a PD-1 checkpoint inhibitor, so it removes PD-1 systemically through your body. To be eligible for it, you need a cancer that contains at least 10% of cells with PD-L1. I understand PD-1 and PD-L1 bind together to create a privileged zone whereby your immune system can’t see the cancer. So the drug in effect removes the invisibility cloak from the cancer so your immune system can detect damaged cells and work on it. Unfortunately our bodies also use the PD-1/PD-L1 process to create privileged zones around critical organs. Hence why you can also get organ damage if the immune system decides it doesn’t like the look of them. These events are per the manufacturer’s literature rare, but as you might expect you will find other users on here who have had similar experiences with pembro and other PD-1 inhibitors. Those who get a good result without consequences perhaps don’t need to keep posting.

I have a blog on this site. My pembro treatment started in May 23 and my IRAE happened almost exactly a year ago so the entries through from May 23 cover what happened in more detail. It’s my story, not necessarily yours. I am glad I tried it because I could not have achieved remission without it, even though there have been other consequences for me. 
A trip with triple negative breast cancer

Hi codfish thank you very much for the information regarding your experience with pembrolizumab. I was delighted to read that even after some hiccups and adverse reactions that it has worked for you,that’s very encouraging to me. I know that there will be possible not so good side effects but I am willing to try. I think that when faced with the option of doing no treatment it made me eager to try anything…..nothing ventured nothing gained lol. Long may your remission continue . I look forward to reading your  blog with the positives and not so positives.thank you for taking the time to share.. Enjoy the day and stay positive. Sharon x