New primary cancer

I appreciate your comment about dosage. I didn’t think to ask how they work out dosages when they give multiple drugs at the same time. I signed the consent form and am waiting for the pre- treatment appointment. 

Thanks again Annette. I can’t get any help with transport, but am going to speak to the volunteer company I used before. I told my family on Friday. My dad took it as well as could be expected, but I upset my sister. I’ve tried to explain that I’ve been incredibly lucky so far with no pain or illness from any of the cancer itself. The treatment I’m going to have wasn’t available on the NHS before this year, so I think someone is watching over me. I was feeling really positive and confident yesterday, and then I broke a tooth. A doctor told my friend that dental decay can cause sepsis. I’m definitely phoning my dentist on Tuesday. 

I had my appointment on Friday and was able to discuss my reservations with the doctor and nurse. They’re both amazing and agreed that this combination of drugs is my best option. They think I’m medically fit and young enough to get through it, and I have absolute faith in them. I just want to get on with it now. I’m glad you were able to enjoy Christmas. As you said, there’s always a but! 

Hello Jools. Bit late to the party but just wanted to say Hello to you and send my good wishes. Hugs. Rainie x

Thanks Rainie. I really appreciate your message.

Following your story, though I don’t say much, and I feel for you. I’m currently on Pembro with Levatinib and it’s been a bumpy journey so far - started beginning of November. There’s so much unknown, isn’t there? I did think at one point that I might stop treatment as I felt so miserable and the side effects were relentless. I’m over that now and things have settled down. Everyone seems to respond differently to these drug combinations which makes it much less certain how individuals will react. But more is being found out. 
I’ve been recruited to a study led by  Birmingham Uni to observe my responses to immunotherapy. There’s much to do with genes and particularly any sign of autoimmune disease in a family - even something like psoriasis. It’s very interesting but rather alarming too.

Do keep us posted about how things go. Every bit of info helps and we care about you and how it affects you.

Shalom for 2024

I’m so sorry that I’ve only just seen your message. You came along at a time when I was talking myself out of starting treatment. I’ve got until 22nd to talk myself in and probably out again! You’re right about the unknown being a big part of the problem. I think it’s not helped by the fact that I can’t find more than one person who’s on the same treatment as I will be. Usually there are at least a few. Another part of my issue is the fact that I’m fit and well at the moment. I don’t have any pain, or sickness. My logical side says why would I want to run the risk of that changing? I’m glad that you have reached a sort of levelling point in your treatment. I hope I can handle mine with the mindset that it will level out for me too. Thank you for your post. I hope you continue to manage your treatment. Keep in touch and I’ll do the same.

It feels a bit weird replying to myself, but I’m still rubbish at navigating this site! I went full circle with my decision, not a surprise to me. I decided to wait until after my next scan before starting chemo/immunotherapy. I’m happy with my decision and am busy catching up with things I’ve been putting on hold. I’m finally going to visit my family next week. As a treat, and a little challenge, I’m going to fly from a “local” airport to Stansted, which is their closest airport. I’m hiring a car so that I can be mobile while I’m in Essex. I’m beyond excited! I’m hoping to do my zip wire soon afterwards, and then a short trip to Hampshire to visit my elderly father in law, and a couple of friends. I’m going to try and organise starting treatment in March, rather than wait for my scan results. The hope being I’ll have a scan early in March, followed by oncology appointment, then treatment immediately! I’d welcome any thoughts, or comments. 

Hi Jools, you seem to have it all sorted, flight, hire car the lot, as long as it all goes to plan and your oncologist  agrees with dates should be good. One thing run it past your oncologist and arrange your next appointment before uou go anywhere theñ when you get back you don't  have to worry about arranging an appointment.  Have a lovely time. Think your crazy  doing a zip wire xx

Moi

Jools where in Essex are you going, can i ask.