A Not So Normal Mother’s Day

I wish I could say that this post was going to be a positive one, filled with good news and breakthroughs, and all the good vibes you’d expect for Mother’s Day; unfortunately, we’re not there just yet.

Mother’s Day for Mum was spent in the 5 East Ward of The Alfred Hospital this year, made special by my aunts and cousins, Luke and Max, who all made sure she felt loved, by spoiling her with cupcakes, chocolates and a lifetime of selfies. Now to the not so fun part – why she was there.

As you all know, Mum is currently in the thick of her 18 radiation doses, 6 down, 12 to go. After the first radiation treatment, Mum started experiencing some severe migraines, which upon investigation was a result of swelling of the brain. She was given some hefty pain killers in the form of Endone and Targin, and also had her dexamethasone steroid dose increased to help reduce any inflammation. Now I don’t know if you’ve ever experienced being on high doses of steroids yourself, or know someone who has, but there is always one glaringly obvious side effect that comes along with it – bloating, a lot, of bloating. You become puffy and squidgy all over and basically look like you’re retaining more than the average 4-6 litres of water they recommend you drink a day; it’s not a good look, and unfortunately Mum has been hit by this side effect hard and fast!

Amongst the radiation therapies, Mum is also continuing on with her IV immunotherapies, which for the body, is a huge amount of chemicals and radiation to have to take on in a small amount of time. This was made evident on Friday, when unfortunately during her IV therapy, Mum’s body finally threw it’s hands in the air, stomped it’s foot on the ground like a petulant 3 year old, and basically tossed all of it’s toys out of the cot in protest – it was not in the mood to play that day. Mum’s temperature soared, she got the shakes, her legs went numb, and the sweats were thrown in too for good measure. The oncologist was called, blood was taken for testing, and finally after 4 hours and a nice dose of Panadol, Mum’s temperature normalised and she was able to continue on to her radiation session.

Fast-forward to a few hours later, at home and resting after a horrible day, Mum receives a phone call from her oncologist regarding her blood test results. Unfortunately her LFTs were through the roof, which for my non nurse readers, means her liver function was abnormal. As a result, Mum was called straight back to hospital to be admitted and to have further tests carried out. So where are we now, 2 day later? Still in hospital, where she will stay until Tuesday which is when her last dose of IV steroids is due. She is also on some IV antibiotics, continued on painkillers, and her new favourite, Temazepam, which is helping her finally get a good night’s sleep. Thankfully her daily blood tests are retuning to normal, and it appears she may have just had a case of hepatitis (inflammation of the liver tissue) which can be a side effect of the immunotherapy. We need to remember however, Mum does have a small tumour in her liver also, so it was comforting to see the hospital jump on it and investigate as quickly as they did.

Mum will continue on with her daily radiation therapies, and hopefully this is just a small bump in the road that, fingers crossed, leads to some eventual good news. Apart from feeling puffy, she’s feeling OK, and is still being her typical strong and resilient self.

Happy Mother’s Day, Mum, Sammy and I love you so much and continue to be in awe of how you’re taking all of this in your stride – you’re amazing. Hopefully next year is a better one! xoxo

Alex

Radiation Month

Just a short, but not so sweet update for you all.

As mentioned in the previous post, the 27th of April was the scheduled day for another MRI, followed up by an appointment with the radiation oncologist to discuss potential treatment. You may remember that we discussed stereostatic radiotherapy, where the few tumours in the brain could be blasted with a special, pinpointed beam of radiation. Unfortunately, this won’t be the method of treatment anymore, as a close review of Mum’s CT scan from last week, along with the most recent MRI, determined that there are a total of 12 tumours now in mum’s brain alone, meaning there are too many for stereostatic radiotherapy to be effective. Instead, whole brain radiation therapy will be required, given over a total of 18 treatments, Monday-Friday, for the next 3.5 weeks. On top of this, as radiation can interact adversely with Mum’s immunotherapy drugs, her next immunotherapy treatment will have to be pushed back 10 days.

Lastly, the cancer cells present in the bone marrow of the right forearm have been causing Mum a lot of pain and discomfort. As a result she has been prescribed 5mg of Endone and Targin 5/2.5 twice daily to help with this. A single blast of radiation will also be delivered to the arm to try to kill off these cells, so let’s hope it works!!

I’ll keep everyone updated as much as I can over the next few weeks, as no doubt these are going to be amongst the hardest for Mum. She’s being incredibly positive and taking everything in her stride, both myself and my sister Sam are so incredibly proud of her.

Let’s hope for some positive news to go with my next update!

Alex

P.s To finish on a positive note, I’ve attached a photo of Mum and her sister Julie from their visit to The Dandenongs last weekend – terminal cancer has never looked so good!

FullSizeRender

Treatment & Tumours

Where to begin with this post?!

The age old saying “one step forward, two steps back” definitely applies to Mum this week, so lets start on a high note – the step forward.

As mentioned in the previous post, Mum was scheduled to receive her first IV immunotherapy dose this week. Leading up to this day, Mum had been experiencing regular migraines, insomnia, increased pain in her right forearm, and sporadic numbness in her right foot – all points she took with her on treatment day, which began with an appointment with her oncologist. To be on the safe side, before her immunotherapy treatment that afternoon, Mum was sent for another CT of the brain to investigate these awesome new symptoms – more on these results later.

The first dose of treatment went relatively smoothly, with Mum and her sister Kerri selfie-sticking their way through the experience. Mum has now been commenced on a mixture of two different immunotherapy infusion drugs given one after the other with a saline flush in between. All up, the treatment takes roughly 90 minutes. The names of the infusions are Opdivo (Nivolumab) and Yervoy (Ipilimumab), together sounding like the latest soprano boy band to come out of Spain. Mum was also commenced on regular daily Dexamethasone (steroid medication) to help with any potential side effects from the infusion, and sent home to rest.

Once home, Mum received a follow up phone call from her oncologist with results of the CT scan from earlier in the day. The findings were not good. Mum’s existing 3 tumours on the right side of her brain had grown considerably, with multiple new metastasis (tumours) now present. As can be seen in the image at the end of this post, the largest is located at the base of the brain, (left occipital, for the nurses reading – image is flipped) measuring in at 14 x 16 mm in diameter. This definitely explains the recent deluge of symptoms Mum had been experiencing.

So what now? To avoid beating around the bush, as Mum’s oncologist put it, this isn’t an ideal development, and as a result treatment is going to be stepped up with everything available now being thrown at it. Radiation therapy is also now back on the table as a result of the tumours in the brain growing and spreading so rapidly. Below is Mum’s schedule for next week:

24/4 – Blood Tests: FBC (full blood count), UEC (Urea, Electrolytes & Creatinine), LFT (Liver Function Test) and Troponin levels (heart/cardiac test).                                                            

26/4 – Appointment with oncologist to discuss blood results

27/4 – MRI at 08.30, followed by an appointment at 11.45 to see the radiotherapist to discuss stereostatic radiotherapy (I’ll explain what this is below).

Plus recurrent blood tests every Monday thereafter.

It’s going to be a busy week, but on the plus side, it feels like Mum’s oncology team is finally getting serious and are now doing everything they possibly can for her. Mum, in typical Pam style, is being incredibly strong and taking it all in her stride. The headaches seem to have somewhat settled for now and the numbness and arm pain have subsided – fingers crossed it stays that way!

I’ll let you all know how everything goes next week – I’m sure there is going to be a lot to fill you in on!

Alex

Stereostatic Radiotherapy

Stereotactic Radiotherapy (SRT) is a specialised type of radiotherapy that can be used to treat tumours located in the brain. A CT is usually performed to pinpoint exactly where in the brain the tumours are located. SRT then uses these scans and specialist equipment to direct thin beams of radiation very precisely at the pinpointed tumour sites. The tumours receive a high dose of radiation, while surrounding healthy tissue receives a low dose.

Stereostatic Radiotherapy usually causes fewer side effects than standard radiotherapy. These may include temporary swelling of the area being treated, soreness, tiredness, nausea, itchy skin and hair loss.

 

 

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.