Immunotherapy

Hi Clarab,, sorry everyone I haven't been back to update you on my Immunotherapy but just seen this message so I thought I'd pop on. 

I've been on Pembrolizumab since December last year. The tumour hasn't shrunk unfortunately but its only grown a tiny bit and hasn't spread to any other areas so far

I've had 11 rounds and the sideceffects have been very manageable, nainy I just get more fatigued than normal, hardly any other issues other than that.

My Oncologist has put me forward for a clinical trial for a vaccine, it's a phase 1 trial so it hasn't been used in humans before but I decided it was in for a penny in for a pound so I had all the screening and consent doe yesterday and hope to start on the vaccine very soon.

It's definitely worth giving the immunotherapy a go, it works better for some than others and so far it has stabilised my cancer so it's considered to be working for me. My concern is how long that will last for which is why I've decided to sign up for the vaccine trial. The scary part is that the Pembrolizumab has to be paused when I start it so there is a chance that things may go in the wrong direction however there is the chance that the opposite will happen and it will increase the work already done by the Pembro and attack the tumour .... that is the hope.

I feel incredibly privileged to be getting a place on the trial, it's not been proven to work but it hasn't failed either so it's time to be brave and take a leap of faith.

Good luck with your treatment Clarab, keep us up to date and I will do the same regarding the Modi vaccine trial. Things are developing rapidly with cancer treatments now so there is still hope for all of us.... keep strong and keep smiling, its the only way to go xxx

Thanks for the info I’m trying a different one I’m hoping it’ll do the job too good luck xx

Well done on getting onto a vaccine trial Tilly. It sounds really interesting - I might try and blog about the trial later. Of course am really sorry to hear that the Pembro is not working as effectively as it might be hoped, although I think I'm not too far away from your situation either. I have all my fingers and toes crossed for you!! Best, Ans

Thanks very much I'm feeling really hopeful and optimistic and also very grateful, in fact I'm feeling a whole range of emotions at the moment as I'm sure everyone on here can relate to. I'll try toopy the article for you but I'm not a techno genius so it might take a bit of doing

https://www-proactiveinvestors-co-uk.cdn.ampproject.org/v/s/www.proactiveinvestors.co.uk/companies/amp/news/984671?amp_gsa=1&amp_js_v=a9&usqp=mq331AQKKAFQArABIIACAw%3D%3D#amp_tf=From%20%251%24s&aoh=16556454172691&referrer=https%3A%2F%2Fwww.google.com&ampshare=https%3A%2F%2Fwww.proactiveinvestors.co.uk%2Fcompanies%2Fnews%2F984671%2Fscancell-treats-first-patient-with-modi-1-cancer-vaccine-984671.html

Hope that works

Hi Tilly mint. That’s good news that you’re in the vaccine trial but so sorry the Pembro didn’t help much. As you say there are great strides being made in research. The poem at the beginning of my blog is the one engraved on a tablet at the ICR. I’ve followed what they do right from the beginning of my diagnosis. As you say it gives us all hope. 

Tilly mint 61 said:

Hope that works

Tilly that’s great and so informative. I’ve shared it in a tweet. Thank you 

My hubby has cancer of his voice box that has unfortunately spread to his lungs. He had 6 weeks of radiotherapy bit this didnt work. He goes back to hospital next weds to discuss when he will start immunotherapy. We're hoping this will work & give him longer. Theyve said he won't be cured but it will hopefully give him longer with me. As you can imagine we are both devastated. 

Oh Shazza, that is definitely not the news that anyone wants to hear. I can't lie - the psychological trauma of finding out that your cancer has spread is simply awful. But I can also say that immunotherapy does, for many people, offer some hope, and practically often a much better quality of life for the time they respond positively to the treatment.

When I met my oncologist about starting immunotherapy, I left their office much more positively than I entered it!! If you want to talk further about the process, what it's like to get your infusions etc, I'm more than happy to talk. 

I wrote a blog post about immunotherapy which you may find useful: here

Take care, Anson

Oh Shazza so sorry to hear that. The treatment is so aggressive that finding out the cancer is somewhere else must be like hitting a brick wall. Do ask about trials? There are a couple involving cancer vaccinations as well as the immunotherapy. 
Immunotherapy  can work wonders for some people if the tumour is the right kind. 
I hope you both get the help you need. 

Hi Shazza I'm really sorry to hear that you're both going through all this but definitely don't give up hope. Immunotherapy has worked incredibly well for many many people and its definitely an option to seriously consider taking. 

The side effects are nowhere near as bad as what he's already been through and easily tolerated for most people.

I can imagine the way you are feeling right now but please don't despair. 9 months ago my surgeon basically told me to go home and get things in order, fortunately my Oncologist said let's give Immunotherapy a go.  9 months on im really well, my tumour is stable and hasn't spread to anywhere else. It's given me the time for other options to become available and I'm about to start a clinical trial for yet another new treatment.

I'm sending all the positive thoughts and best wishes your way and hope that Immunotherapy works it's magic for your husband. In the meantime, take care of yourself, it's hard being the carer and keeping a smile on your face when you're feeling despair.

Always happy to chat to you on here xxx