First day of immunotherapy trial

Hi Littl-fi,  I am so pleased your test was negative so you can get started on the Trial. I actually failed the screening for the Trial I was trying to get on. This was before the trials for Immunotherapy! It was a Target drug. I was diagnosed with Malignant Melanoma Stage4 with spread to lymph nodes, chest, pelvis bones and there was a tumour that had eaten through the bone in my arm which held up even the screening because they needed to put in a pin between shoulder and elbow before I lost the use of my arm. Then during the screening they found another melanoma at the back of my right eye. My oncologist was amazing and wrote to all the labs asking if they would pay for my treatment. Glaxo Smith & Kline agreed.

That was in 2013 and I'm still here to tell the tale! If/when it comes back, my next treatment would be Immunotherapy as it has done really well so far. Do you know is this a new kind of Immunotherapy if it is on trial? Anyway, I hope you get the same miracle as I got. Even my oncologist and GSK couldn't believe the results!

Good luck! How long is the trial for? Please keep me informed!

Hi Annette, thanks for your positivity- wow you have been through the mill and it’s great to read you’re still here & enjoying life.

The immunotherapy is Cemiplimab with a combo of a vaccine for the HPV Virus. I had the first injections yesterday and then next week the Cemiplimab starts on a 3 week cycle for 2 years unless it needs to be halted. I believe it’s the same as Pembrolizumab. I’m hopeful I don’t get too many nasty side effects. 

Keep up whatever you’re doing as it seems to be working for you, I’m sure your positive attitude has a lot to do with it!

I’ll keep you posted about how I get on with it.
All the best

little-fi

Hi little-fi,  That sounds great if it is Pembro mixed with something else! Pembro has had great results even on it's own, so possibly they have made it a combo because it helps with any side effects! I wasnt telling you a bit of my story so you would think I had gone through the mill. All I was trying to do was show you that no matter how bad or bleak things look after diagnosis, there is always Hope!

The other thing to keep in mind is they would not be giving you these expensive drugs unless there was a good chance they would work for you!  How did you feel after the first injections? I hope it went smoothly and continues like that for you! The two years will be over in no time once you get into a routine! Keep in touch! 

Hi little-fi. I'm so glad you started your trial as there are so many amazing ones nowadays. I have been on a trial for nearly a year now since I was diagnosed in dec last year with incurable stage 4 ovarian cancer. Although half of us on it only recieve placebo but non of us are allowed to know who is getting the real drug. Just wanted to encourage you that since I've been on it my tumours are slowly shrinking. I have had some side effects painful joints and other stuff. And I may have to come off soon as my pancreas isn't working as good as it's meant to be. But for now they are keeping me on it and keeping a close eye on me. I just wanted to get in touch to encourage you that these trials can really help. I'm still classed incurable. But I feel blessed to still be here. As last December I was so I'll everybody myself included did not even think I would make it until Christmas. Lots of love to you from my heart. Keep fighting the fight. Love Mandy xxxx

Ahh thank you Mandy for your encouraging words. I’m sorry you’re having problems with your pancreas. It does sound like you’re not on the placebo and it’s great that you’ve had shrinkage. A mixed bag I suppose! 

I’m definitely on the immunotherapy it’s just the combo injection that could be the placebo. 

I had my first infusion yesterday and so far so good- but they did say side effects can strike at any time so I’m mindful of that & won’t be taking it for granted that all is hunky dorey. 
Will your team offer you something else if they need to halt it or will they just give you a break from it?

I must say I don’t feel like I’m on a timer anymore as I’ve heard so many encouraging words on this site & will definitely keep up the fight!

I’m expecting grandchild number 2 any day and keeping busy with friends & family as much as permitted with this crazy virus still affecting us all. 
You must be busy with your boys too, it works as a great avoidance of thinking too many negative thoughts.

Are you still working Mandy?

Wishing you all the best- keep in touch

little-fi xx

Hi little-fi lovely to meet you. I'm really glad you are definitely on the immunatherapy as that can have really good results. As for me If I come off the immunatherapy I think I will just be staying on the two tablets an eve I take which is a parp inhibitor but I think I may be on the placebo with them. I'm hoping I can stay on the immunotherapy for as long as can. I have a ct scan in December to see how I'm doing. Its lovely news about your second grandchild due any day. He or she will definitely take your mind off things and give you something to keep fighting for. I will fight for as long as I can because although I'm a spiritual person and know theres a beautiful afterlife. I'm not ready to leave my beautiful sons yet or my gorgeous dogs. Lots and lots of love to you. And yes will definitely stay in touch. Lovely meeting you. Love Mandy xxxx