Home Sweet Home

It’s been almost 2 weeks since my last update, and finally I can say that i’m writing about some good news!

Following a brief stint in ICU after Mum had developed an infection and become septic, she was sent to the ward for a few days for observation and then finally sent home at the end of last week. Although Mum’s liver function hasn’t completely returned to normal just yet, she is feeling a lot better and is safe to say has relatively returned to her “old self”.

Mum continues to go to her daily radiation sessions, and with only a handful of sessions remaining she’s almost at the end. She is still having her immunotherapy infusions, and for now it’s just a waiting game until Mum has scans and tests in a few weeks time to see if the radiation and immunotherapy sessions have had any effect. Fingers crossed!

She’s currently on a myriad of medications, including a new autoimmune medication to hopefully prevent her from picking up any more nasty infections like last week. For the nurses amongst us who are interested, here’s Mum’s drug round-up:

Bactrim 800/160 (strong antibiotic) on Mondays, Wednesdays and Fridays, Mycophenolate 1gm twice daily (immunosuppressant drug), Prednisolone 50mg (steroid – anti inflammatory/immunosuppressant), Targin 10/5 twice daily (pain killer), and Zantac 300mg at night (antihistamine used to treat acid reflux). 

For more exciting news, Mum became a grandmother again last week after my sister gave birth to a gorgeous baby girl named Ella Louise Skovmand (photos below). She couldn’t have come at a more perfect time and has truly given our family something to be incredibly happy about for the first time in months. I know Mum is really looking forward to meeting her in a few weeks time when Sam and her family travel to Melbourne for a visit.

For now that’s everything, let’s hope the good news continues and my next post is just as easy to write as this one was!

Alex

 

A Short, But Not So Sweet Update

Just a quick update today. Unfortunately the past few days haven’t been the best for Mum – her liver function wasn’t improving as quickly as the doctors thought it would with the IV antibiotics and steroids she was on, so as a result she has been kept in hospital for monitoring and commenced on different antibiotics. Yesterday Mum unfortunately spiked a temperature again with full body aches and pains, so was sent for a CT and ultrasound, with her daily radiation dose cancelled – we’re currently still awaiting the results from these scans.

Unfortunately the day didn’t progress with much improvement, and overnight Mum had the medical team called by the nurses to review her as a result of a fever, rapid heart rate, and extremely low blood pressure of 60/35. Mum was immediately given IV fluids in an attempt to raise her blood pressure however this had no effect, and Mum, believed to be in a state of septic shock, was transferred to ICU to be commenced on a Noradrenaline infusion (all of this explained below).

Fast-forward to the following morning – I have just spoken to Mum and she’s feeling a lot better and is now maintaining her own blood pressure without any medication support. She’s due to be transferred back out to the ward today which is great news. It’s obvious she’s relatively back to her old self, as whilst I was on the phone to her she buzzed the poor nurse and hurried her up to check her blood sugar levels so she could eat her breakfast (steroid use can alter blood sugar levels, so a daily measurement needs to be taken whilst on them – before food).

I’ll keep you all updated on how Mum progresses over the next couple of days – hopefully she will be discharged from hospital soon and can get back to the comfort of her own home.

Alex

P.S Some incredibly random photos below, which Mum has sent through of her stay in ICU…..

Septic Shock – a serious medical condition that occurs when sepsis, which is organ injury or damage in response to infection, leads to dangerously low blood pressure and abnormalities. It is often categorised by it’s lack of response to rapid IV fluid administration, or “filling” (which in normal circumstances has the ability to raise a person’s blood pressure without the need for further active treatments). 

Noradrenaline – a drug which, when given by infusion, has the ability to increase heart rate and constrict the blood vessels, which in short increases blood pressure. It is very useful for treating medical emergencies such as septic shock that involve a critically low blood pressure. 

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

1 Of 18 Down…..

I’m not going to lie, this past week has been a hard one, not just for Sam and I being so far away, but for Mum, as her treatment took a giant leap into the ‘overwhelming zone’ yesterday.

As mentioned in my previous post, Mum now requires full blown radiation treatment to attack the tumours in her brain as well as the bone of her right upper arm, so to say this past week has been a busy one is a bit of an understatement. Let’s start from the Tuesday…..

Tuesday was the day Mum was fitted and measured for her “radiation mask”. In short, a piece of plastic mesh is melted over the face to create a made-to-fit special mask that is designed to keep the treatment area still during radiotherapy in order to make it as accurate as possible. The masks aren’t pretty, in fact they’re pretty confronting, and look like they’re straight off the set of a horror movie, but at least the lipstick Mum was clearly wearing for this fitting makes it a little less Texas Chainsaw Massacre – image below.

From here, Mum had a meeting with the orthopedic (bone) specialist, where results from her recent PET and MRI scans were discussed. Unfortunately, it appears as though the cancer has slowly degraded the bone in her arm, resulting in it becoming quite thin and fragile, and at risk of crumbling or fracturing from the amount of radiation Mum is about to receive. The plan to, hopefully, counteract this, is to surgically insert a metal rod from the rotator cuff down to the elbow, with a few cross pins along the way. This surgery is due to take place after the radiation (a bonus – radiation takes time to damage bone once in the system, so the surgery doesn’t necessarily have to take place immediately), and is scheduled for some time after June 1st.

On Wednesday, Mum met with her oncologist to discuss how the radiation therapies were going to disrupt her immunotherapy treatments. This is where we received one bought of good news, finally. Thankfully, the second infusion doesn’t need to be pushed back as previously thought, as after a discussion between the oncologist and radiation therapist, they don’t believe there is going to be an adverse effect, and are allowing the infusion to continue as scheduled. Therefore, Mum’s second immunotherapy infusion is scheduled for Wednesday the 10th of May, with the 3rd infusion taking place shortly after the radiation therapies conclude. It’s a lot, her body is going to feel it, but at least nothing is being put off, and this a very good thing.

Friday. Radiation commencement day. Mum received her first of 18 radiation treatments yesterday, and was also given her treatment schedule for the next few weeks (attached below). She’s feeling OK, apart from a bit of warmth to the area there apparently wasn’t much discomfort at all. The dexamethasone (steroids) Mum is on twice daily is hopefully going to counteract a lot of the symptoms, but there are two outcomes that can’t be avoided; 1. weight gain/bloating from the steroids, and 2. total hair loss – every woman’s worst nightmare, really!

So lets be honest here, the next few weeks are going to suck, however Mum is remaining extremely positive and is blowing me away with how she is taking each blow with continued strength and a kick-ass attitude. I know with everything she must be feeling incredibly overwhelmed, but speaking to her you wouldn’t know it; she’s a little bit awesome.

I also want to say a huge thank you to my aunts Kerri and Julie, who continue to make sure Mum is at all of her scheduled appointments and treatments, and make sure she always has visitors and company on the weekends. Sam and I, being so far away, appreciate you both more than you know, so thank you, you’re both amazing.

As always, I’ll continue to keep you all updated over the next few weeks – let’s all cross our fingers and hope that these radiation doses work and destroy the hell out of each and every one of those damn tumours!

Speak soon,

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!

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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