The Cape Crusader

Dr P, MRSA swab, Nandos, Chemo, Denosumab, Movie Night

Lower open area clean and not purulent. Slight bony tenderness and effusion around knee. No xray as had so many scans. Able to weightbear and improved since Monday.

Few further days antibs given happt to start Cape tomorrow.


https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment-breast-cancer/chemotherapy/capecitabine-xeloda

A Mixed Bag

Colin took me to my appointment today, bit of a mixed bag. They still aren’t sure if my spine is better or worse! I’m a complicated beast it turns out. Basically one of my tumour markers CA125 has risen a fair bit since they were last tested, however the other tumour marker (CA153) has gone down! They really aren’t sure what’s going on! So my onc wants me to have another MRI and a CT. These actually tie in with my regular scan checks anyway so all good. If the area at the base of my spine has got worse, then I’ll have to have some radiotherapy. Rads is fine though, I can defo cope with that.

My onc has asked me if I can be a case study! I’ll be written up (completely anonymously), as an example of not rushing into unnecessary treatment. So if another less savvy onc than mine had seem my brain scan and assumed it was mets, they could have gone straight to treating them. However, mine looked at my notes and considered my potential neurofibromatosis. Thank goodness she did.

Basically I have cytomas in my brain which are benign and are as a result of my NF1. She could have just assumed they were brain mets. So that’s why she wants to write me up! I’m interesting medically because:

- I was diagnosed young first time round, just 28

- I have secondaries

- I have neurofibromatosis type 1

Then we went up to Comet Ward for my denosumab, easy as ever, injection in the tummy and that’s it.

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....!