So as mentioned in my previous post, today was the long awaited first appointment with the oncology team, where mum’s test results were supposed to be delivered along with a formulated treatment plan to match. Unfortunately, this was not today’s outcome, much to everyone’s disappointment.
You might remember we were waiting to discover if, simply put, Mum would be receiving treatment via either daily oral tablets or an IV immunotherapy session every 2-3 weeks, depending on the lab results. Considering the circumstances and the time we waited for the appointment post discharge from hospital, we were all eager to get answers and get the ball rolling. Mum, her sisters Julie and Kerri, and myself (with my sister Sam patched in from Copenhagen) piled into the oncology specialist’s office and prepared ourselves to hear “The Plan”. Now, you know things aren’t heading in the desired direction when the specialist starts with the sentence, “oh, there doesn’t seem to be any results back for you, Pam, that’s odd”. Silence, crickets, blank stares, and a deep, frustrated exhale from Copenhagen over loud speaker.
After a few awkward moments of “what the hell is going on?” type questions, as well as a follow up phone call with the registrar responsible for putting in the request for this specialised lab test, we discovered why there were no results – Mum’s original biopsy didn’t contain enough DNA for this particular test to be able to be successfully carried out. So what does this mean? More surgery, unfortunately. Luckily (or not so luckily, this is a grey area depending on how you look at it!), mum has multiple tumour sites (more images below), so another brain surgery isn’t on the cards. Instead, they’ll be using the liver mass as the lucky giver-of-tissue-samples as the mass in the lung is in a rather tricky location (a tad too close to the trachea, aka windpipe, for everyone’s comfort). The rest of the meeting was, as can be expected with no results to discuss, pretty uneventful. We discussed the differences between the drugs she could potentially be receiving (more on these below, for those interested), as well as why she isn’t a viable candidate for any potential clinical drug trials due to her remaining three lesions in the brain. And that was it.
Fast forward to a quick blood giving session to determine Mum’s LDH levels (I’ll explain the importance of LDH below), afterwards finding ourselves back home playing the waiting game again. Fortunately, as a result of the hospital being far from proactive in chasing up results and communicating them with us, they put a priority on Mum’s case and fast-tracked her procedure to this Friday, which is good news. Hopefully by this time next week we’ll have those much awaited results and finally have a treatment plan to follow. Fingers crossed!
So here I am, currently writing this while sitting in Singapore airport waiting for my connecting flight to London. Leaving Mum with another pending surgery and no knowledge of her treatment is so far from how I planned to moonwalk away from this whole cancer situation, truly believing the first hurdle was behind us and I was OK to go home – thank God for my aunts, Julie, Susan and Kerri, who I know have it all under control and will be there for her every step of the way.
For those of you who are interested in the boring, scientific side of things, feel free to carry on reading below.
Till next week – let’s hope I have some better news for you!
B-RAF & Immunotherapy – What Are You? …..
Fact: I was genuinely terrible at biology when I was at school, I truly hated it (apart from the rat dissection side of things, that spiked my twisted interest for some reason and I was all over that), so the fact I’m about to spend the next few minutes discussing cell mutations and targeted therapies is quite the 180 for me.
So this illusive magic test that I keep talking about that determines the type of treatment Mum will receive is the B-RAF test. In short, 40-50% of those diagnosed with Melanoma have this certain cell mutation. Every cell in our body is equipped with a messaging pathway, if you will, which tell the cells how to grow and divide. Mutations, such as B-RAF mutations, make the cells behave like they’re raving in an Ibiza nightclub by altering these pathways and causing them to grow and multiply at an alarming rate, often resulting in tumour formation. If a B-RAF mutation is present, Mum’s treatment will be in the form of daily tablets, which act by specifically targeting these B-RAF mutated cells and force them to calm the hell down and stop growing. Unfortunately, the average time of effectiveness before the body becomes immune to these tablets is 9-12 months, but it’s definitely a great and less invasive treatment to start with – if you have the mutation.
If the B-RAF mutation isn’t present, the course of treatment will then be an IV Immunotherapy session every 2-3 weeks. Now unlike chemotherapy, which destroys not just cancer cells but healthy ones also (and has far worse side-effects), immunotherapy works by encouraging the body’s own immune system to fight the cancerous cells itself. Cancer cells are able to rapidly grow and expand as they somehow manage to make themselves invisible to our immune systems – immunotherapy drugs take away their cloaks of invisibility and allows the immune system to go all Dementor on their asses (small Harry Potter reference, you’re welcome J.K Rowling).
As with all side effects, these aren’t set in stone or experienced by everyone taking these drugs, however compared to the side effects experienced with chemotherapy and radiation treatments they’re a bit less extreme and a lot more manageable.
• Fatigue, joint pain, itchiness, high sensitivity to sunlight, nausea, hair thinning/loss, and inflammation of major organs including intestines, lung and liver.
LDH (Lactate Dehydrogenase) Levels
Simply put, LDH levels measure the extent of tissue damage in the body. For patients with Melanoma, this test is used to determine the extent to which the cancer has metastasised (spread). It is widely known that patients with stage 4/metastatic melanoma who have an elevated LDH level often have a worse prognosis.
So here’s to hoping for normal levels when we get them back on Friday!