Denosumab

I had my latest bone strengthener today. It is *so* much better than Zometa! My poor veins were just not playing ball for Zometa any more. Last time I had it they tried about 6 times to get a cannula in and eventually it worked. I felt like a total pin cushion!

This one is called denosumab, it's something called a monoclonal antibody and it is a quick and (almost) painless injection! Whereas the zometa was done at Guildford (which meant the schlep up there, the being hooked up to an IV, the sitting in the treatment room feeling like a cow being milked), this one is done at Crawley. A quick 20 odd minute drive. They then prepare the injection, jab me in the tummy and away I go.

Obviously like any cancer treatment, it's not without it's side effects. The drug in simple terms aims to rebuild my bones that have been eaten away by the cancer.

In normal bone, two types of cell work together to shape, rebuild and strengthen existing bone:

• osteoclasts, which break down old bone
• osteoblasts, which build up new bone.

Secondary bone cancer occurs when cells from the original (primary) cancer spread to form a new tumour (secondary cancer or metastasis) in the bone. Cancer in the bone causes the normal activity of these cells to change. As a result, osteoclasts begin to break down too much bone. This increases the risk of fractures (breaks) and can cause pain in the bones.

Denosumab works by targeting a protein called RANKL, which is needed for new osteoclasts to be made and to function. Denosumab binds to the protein and stops the production of osteoclasts. This helps to prevent further breakdown of bone and reduces the risk of problems caused by secondary bone cancer, such as fractures or compression of nerves in the spine.

The main side effect I have is pain, pain that needs quite a lot of painkillers, including oramorph (oral morphine), pain that wakes me up crying in the night. The cold weather we are having at the moment exacerbates the pain as well. I'm tough though, I've got this....!

CT Scan

Today is a week since my operation, I'm recovering physically and mentally a small bit each day but it's been very tough going.

I had yet another scan today, a CT scan at East Surrey. This one is to establish baseline results for my trial. We got there for 09:30 and I was ready to drink my 600ml of water in half an hour to ready my body for the IV iodine when I was called into a side room. "Mrs Clarke you need to have a blood test,  we need to make sure your renal function is ok, it has to have been in the last 6 weeks and the last one we have for you is 7 weeks old". Me, bugger. Because I've had lymph nodes removed in my left arm and therefore am at risk of lymphoedema in that arm, it always has to be my right arm that's used for bloods, IVs, blood pressure tests etc. I.e. My sore and painful arm.

The nurse there tries to take me blood but my veins aren't playing ball. After being stabbed in my poor sore arm, I go to phlebotomy where they get the bloods, it's sodding painful though. We then head back to the scanning waiting area and wait for a while until the bloods come back. Eventually they do, all ok and I can start drinking the water.

I'm then called into the CT scanning room, I know the drill, asked lots of questions, I try not to scoff/cry when they ask me if there's a possibility I could be pregnant.... I'm asked to lie on the bed and the team leave. The scanner whirs around me, takes a few images and then the team come back in to the room and cannulate my poor arm. The iodine dye is injected and I feel like I've wet myself, totally normal apparently:

When the iodinated contrast is injected, most people will get a strange metallic taste in the mouth and feel a warm sensation through the body. This warm sensation may concentrate around the groin or buttock region and can feel like you may have wet yourself, even though you have not. Do not be concerned if this happens, it is a common sensation and usually goes away within a couple of minutes.

I then have a number of images taken and have to hold my breath at certain points. After about 10 minutes it's finished. They remove the cannula from my poor pin cushion resembling arm and I can go home. I have two days' respite now and then on Thursday I have more scanning and tests. Tomorrow and Wednesday I need to try and recuperate some more.

Adamantium

Today I had a check-up with my very lovely "trial" oncologist at Guildford. He's so kind and patient and really takes the time to explain things and reassure me. He seemed surprised I hadn't had my oophorectomy yet, but I reminded him I only finished rads a week ago and he said I should try and get it done asap. I have a meeting with gynaecology tomorrow so hopefully I'll have a date then.

I then asked him about the PET scan I had back on 17th June, my first piece of good news for a while, there has been no progression! I was terrified that the bastard had been silently spreading, invading my organs, so this is a very, very good thing.

Then I was told I would be having my first zometa that afternoon. Zometa (aka Zoledronic Acid) is going to be my adamantium. It's a bone strengthening drug which you receive by an IV which takes 15 minutes. I'll be having it every 6 weeks. The nurse walked me up to Chilworth ward and I have to admit my resolve crumbled. Although yes I've had my rads marathon, somehow, even though I know this drug is a good thing, having an IV drip makes everything real again. I'm not in denial about this whole shit sandwich of a situation, but I am trying to find my new normal and having an IV is like cancer smacking you in the face and shouting at you.

Chilworth Ward & Rob's knee!

Mum, Rob and I waited in that boiling room for about half an hour before my notes arrived and then I had a cannula put in and the drip, drip, drip of the drug began.

Adamantium time

When I heard the familiar "pfft, click, pfft, click" of the machine I fully burst into tears. That noise just took me right back to my chemo days in 2012. Although the oncologist had told me this was a low toxicity drug, it doesn't come without side effects which frighten me. Osteonecrosis of the jaw is probably the most terrifying one. Thankfully I went to the dentists yesterday and they said my teeth looked perfect so I am hoping this won't happen to me. The 15 minutes seemed to last for hours but eventually it was done and (armed with some daily calcium tablets to take) I was free.