Finally, A Plan….

This past week hasn’t been an ideal one for Mum in the way of receiving results. Fortunately, we’ve finally been given a treatment plan along with a starting time, however this point has not been reached without a few set backs along the way. Before getting in to the treatment, let me tell you about the lead up to it….

The scheduled PET scan took place, and in Mum’s own words via text message, “was easy, had an injection with the special dye, slept for an hour, and then went in the machine for 20 minutes”. As mentioned in my previous post, PET scans have the ability to show up cancer “hot spots” in the body, and as expected, that it did. We already knew about the brain, lung and liver, but just to add a bit more fun to the party, the PET scan threw in a right hip “hot spot”, as well as another one in the right arm (where the original skin cancer was 13 years ago) in the bone marrow. On top of this, Mum also had a special new blood test, carried out by the Melbourne Melanoma Project, which has the ability to pick up that B-RAF mutation that I’ve mentioned a few times previously, if present. Her brain biopsy was also retested as a backup, and the samples from the skin cancer from 13 years ago were also tracked down and retested. After all of this we finally received a conclusive result. No B-RAF mutation – she is not one of the 50% that have it and are eligible, as a result, to take the daily tablet to battle it. Instead, Mum is scheduled to receive IV Immunotherapy treatment every 3 weeks at the oncology centre. The specific name of the therapy she’ll be receiving is called Keytruda (or Pembrolizumab, for all of the nurses who I know are reading this!). Treatment is officially scheduled to begin at 0900 on Tuesday the 18th of April.

So there it is, some not-so-great news, in order to receive some good news – a plan, finally. Mum herself is feeling well. She’s still getting tired very easily, but apart from that is doing great despite it all. She’s receiving all of your beautiful messages of support, including a stunning bunch of flowers from her work colleagues, which I know brightens her day, so thank you. She’s a strong one! On top of that she has just found out that my sister, Sam, and her family (including her new bubs which is due very soon!) are planning on a trip to Melbourne from Copenhagen in a few months time, which gives her something to look forward to – I wish I was going too! 🙂

That’s everything for now, will keep you all updated on how the treatment is going once she starts,

Alex

Small Update – Biopsy Failure #2

Just a very quick, small update.

As mentioned in the previous post, Mum had to undergo a second operation as a result of the brain biopsy not being viable to test for the presence of a B-RAF mutation cell. She had a quick day-unit procedure last Friday, where a tissue sample was taken from the mass in the liver. Unfortunately however, this sample has also come back as not being viable as there were not enough cancer cells present (bearing in mind the mass in the liver is a very small 3mm in diameter – so this isn’t a surprising outcome!). A 3rd biopsy procedure will most likely be required, but in the meantime, Mum is scheduled to have a PET Scan (information on this below) tomorrow morning which hopefully can provide some more insight into what’s going on inside Mum’s body!

I’ll post again as soon as we have the results from the scan and once we have a plan for the possible third biopsy procedure.

Alex

PET (Positron Emission Tomography) Scan

In short, patients who are diagnosed with cancer may have a PET Scan, which basically gives information as to the state of the body’s tissues and what they look like. PET Scans hold the ability of being able to expose cancer locations, the stage of which they’re at, whether it’s benign or malignant (lump or growing tumour), and whether it has spread to other parts of the body.

Prior to the scan, a special dye is injected called a ‘radiotracer’ which, as it flows through the body, is visible in the scans. Basically, this dye makes you and your little cancer friends light up like a Christmas tree for festive easy viewing. PET Scans are relatively easy to have, similar to a CT or MRI, and take approximately 30 minutes.  

The First Little Set Back

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!

Alex

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).

Side Effects

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!

Our Journey To A Diagnosis

As this is the first ever post on HerMelanoma, let’s start at the beginning – how this all started. I promise the following posts won’t be anywhere near as long as this one is about to be – but every journey has to start from somewhere, and this lead up is a big one.

Let me take you all back to, well, a month ago, when my biggest stress in life was having to change-over my Australian nursing registration to a UK one (I still stand by the fact it’s stressful!). The documents required to prove i’m not a nursing fraud is next level extreme, so it was decided that the easiest way to get it all together was to simply fly back to Australia for 2 weeks and get it all done from there. Sounds like a quick in-and-out trip, right? Wrong.

Let me preface the rest of this post with this – my mother is me in 30 years, we’re scarily similar, and as a result are incredibly close. So close that when she’s not acting herself, I notice. The first week was filled with many “what the f**k?” moments. Her memory was off, she was incapable of having a full conversation without getting frustrated, she was struggling to get certain words out (medical term = dysphasia), and she was oddly flat and quiet in nature. Luckily for me as a nurse, alarm bells started to ring, and I knew there was more to her behaviour that needed to be investigated.

On Monday March 6th, 2017, Mum was sent to have an MRI of her brain by her GP, and it was on this day Her Melanoma was discovered. 4 in fact, one large 36mm beast in her left frontal lobe, and 3 more very small ones on the right side (see image attached below this post). We were immediately sent to a hospital’s emergency department, and from there her road to a diagnosis began. Before continuing, let me point out that this was not Mum’s first rodeo with cancer – she had cervical cancer in 1984, and a large skin melanoma on her right arm in 2003 which was removed. What could possibly go wrong, right?

Over the course of the next 2 weeks in hospital, the news went from bad to worse on an almost daily basis. She was scheduled for surgery to have the largest lesion on the brain removed and have a biopsy taken, and was commenced on Kepra (anti seizure medication), Dexamethasone (steroid used to reduce the swelling in her brain) and pain medications to manage her headaches. A full body CT was also ordered, and it was from this that we discovered 2 more lesions, this time a 35mm mass in the right lower lobe of her lung, and another smaller one in her liver. It was a massive blow.

A week later, and after many delays and days of fasting, her surgery went off without a hitch. She came out with the front half of her head shaven and a very impressive scar to match, but on the plus side seemed to be relatively back to her old self.

The next few days were spent waiting for the results from the biopsy – these days were the hardest by far. Finally the surgeon (extremely handsome, always helps, but I digress), comes for a visit and delivers the news, “i’m sorry to say, but the lesion we removed was cancerous, and after further tests we can confirm that it is melanoma”. Being both nurses, my mother and I had only one reaction to this news, “shit”. Now, if you’re reading this blog i’m going to take a guess that you know all about melanoma and how extremely shite it really is, but for those who don’t, melanoma is the most serious and aggressive forms of cancer. It develops in the melanocytes (cells that give our skin it’s pigment, or in my case, lack there-of) and is why is mostly found in the form of skin cancer. It does have the ability to spread to the internal organs however, and once we get to this stage, where it’s set up shop in multiple locales and turned itself into a franchise, that we can term it Stage 4, or Malignant Melanoma. It isn’t an ideal diagnosis, to say the least.

During the 4 days that followed before Mum was discharged, she was referred to the radiation and oncology teams. This is where things get technical. I won’t go into too much detail in this post as we’re still currently awaiting results which will determine her particular type of treatment. In short, one will be a tablet taken every day, while the other could be an IV Immunotherapy infusion every 2-3 weeks. It’s important to note that chemotherapy is ineffective in treating Melanoma, so as a result is no longer a treatment option – one silver lining, I guess we can say. Another positive is the decision not to undergo radiation therapy just yet. The remaining 3 lesions in her brain are too small to blast with radiation, which could result in more damage being done to the surrounding tissue than the lesions themselves. It’s a treatment that is being kept up their sleeves for the event that the lesions grow. For now though, it’s a win.

So here we are, eagerly awaiting her first oncology appointment scheduled for next Wednesday where we find out the results, and the type of treatment she’ll be getting. It’s a horribly long wait that has dragged on in the most painful of ways. My sister Sam, who thankfully flew in for a week from Copenhagen (and is almost 8 months pregnant) unfortunately had to return – a trip that I myself will have to make next week when I return to my husband in London. Leaving Mum is going to be unbearably difficult, but I take comfort in the fact that she has her sisters here in Melbourne (and the Gold Coast) to support her in the immediate future. She’s home now, her memory is still off, and she barely makes it to lunch before becoming wiped out for the rest of the day, but she’s home, and this is a good thing.

In the meantime, we wait – fingers crossed my next post is filled with some good news!

Speak to you soon,

Alex