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Simmo Vs Melanoma

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23.01.2022 Just got word from the trial mob that I have missed out on the trial, the US drug company that had to give final approval, determined I had too many mets on top of my skull in order to qualify. To be honest, it’s not a huge shock, I was pretty convinced of that after my last appointment with them last week One bonus out of it is that means I can stay on my current steroid dose, which leaves me being able to eat, talk and reason, a better quality of life than laying in a hosp...ital feeling like crap. We’re still self isolating, have been since the family weekend which left Penny with a cold, we’ll stay locked down from here to ensure I don’t end up in the hospice with Covid 19 and not being able to have anyone there with me, that has already been relayed as a possibility, should they not be able to bring this thing to heal. Feeling good, positive and content, I hope you and your family are safe and remain safe during this thing, it’s not a joke & has severe ramifications for people like me and so many others in the same boat.

20.01.2022 G’day all Back in hospital for more radiation & scored an upgrade to the very room I wasn’t supposed to leave nearly two years ago Hoping it’s not an omen Seriously though, I now have zero treatment options, other than a possible trial/experiment later in March, that is obviously my goal and I’ll fight to my last breath to take part in that but the reality is I have weeks to go without any cancer treatment ... I’ve always tried to put a positive spin on everything I have posted over the past 38 months of this fight but a dose of reality is also needed at times I still feel ok, save for a few new bumps and lumps, we just finished planning a family weekend for the weekend before the trial & I’ll have the week getting more radiation to slow this beast down It’s been hard for Pen today walking back into this room but I fully intend walking back out again Melanoma suxs but thousands are worse off than us & I am forever thankful I met & married the lady that’s still standing by me, regardless of what

19.01.2022 Been in hospital since yesterday, dehydrated and haven’t eaten much in five days (Ipi Nivo strikes yet again ) Just had one of my Specialists in, he’s bombed me with high dose steroids, which will get me back working again BUT immediately kills my immune system, again Anyway, that’s the end of cancer fighting for this trip, hopefully the next treatment can be dialled down a bit to prevent that happening again ... Been pretty crook and tired, going off to sleep again after this post, so won’t be replying sorry Great to have my kids in today as well as my amazing wife, who is yet again going above and beyond, I don’t deserve her tbh Anyway, more when I see what happens next

16.01.2022 A great weekend with the family, thanks all for coming down, it brought a swag of smiles to my dial

16.01.2022 So after Thursday’s update where I said I’d had seven weeks on the new treatment with zero side effects Sunday I didn’t get out of bed until mid afternoon, fevers, pretty severe fevers and just general feeling like crap Into hospital Monday, which was great timing, it’s the new treatment alright. Monday night, same thing, fevers, sweats and no sleep. Dropped the dose and started nurofen, Panadol and woke up Wednesday ok. So that’s the new norm by the looks of it, bloody ann...oying but at least I can stay on them at this stage Started radiation yesterday, through until Tuesday now to try and shrink a couple of the larger tumours that are still causing me pain Onwards and upwards

15.01.2022 G’day all, A bit over a month since my last post but there hasn’t been a whole lot to post about fortunately. The right arm tumour appears to have gone, along with most of the problem ones, with the exception of the one in my sternum (in bone) and the one in my jaw which makes the bottom of my mouth feel like I just got out of the dentist Also still got one somewhere in my scone that’s keeping me deaf in my right ear ... The one in my right eye has even started to move along, so the new meds are working thank Christ. Off for my first PET scan since starting Eco/Bini on the 18th May, so fingers crossed it won’t be a shocker like the early 2020 scan Can walk a decent amount now, plus climb stairs again, which doesn’t sound like a big deal but when I was riddled with tumours, I had one in my left knee that was causing a heap of grief, it seems to be gone So a massive change to where I was a few months ago, it won’t last forever but hopefully it’ll give me a bit more time to enjoy life and most importantly, give me quality of life because when you lose your health it pretty much changes everything else along with it and definitely not for the better. Looking forward to posting positive PET results on around the 20th Onwards and upwards

14.01.2022 G’day all, This is a video we participated in a few months ago, it wasn’t used but now the ETU has picked it up to run as part of their campaign for Voluntary Assisted Dying (VAD) to be introduced in Queensland As followers of this page know, I was lucky enough to score an eleventh hour treatment which should give me another twelve months but the point remains, people deserve to die with dignity and we fully support this campaign.... If you live in Queensland and obviously agree with this campaign, please take a few minutes to send an email to your State MP Thanks for your support

13.01.2022 G’day all, PET results in yesterday, most of my tumours have either buggered off or shrunk substantially thankfully A few stubborn ones that are causing me grief so a meeting this morning with my radiation Oncologist to come up with a plan, going into hospital Monday to get some treatment, be in there a week and a bit... Feeling good save for this bloody right arm and sternum, both of which will cop the radiation next week Onwards and upwards Edit ** Having problems replying to a few of you, I’ve replied to John Taylor and Alan Paton and a few others but it’s not showing up for some reason

12.01.2022 Just got off the phone with my Oncologist, who has been working his arse off this week. He’s put me on a new drug that hit the PBS on the 1st April, Eco/Bini, a targeted drug that will give me hopefully, more time & a better quality of life. I won’t get them until probably next week or the week after but that’s a huge relief, we lobbied for this combo for the past twelve months after the manufacturer posted them up last year at $20k/month for patients ... They’re now on the PBS at the normal prescription rate, which is massive Onwards and upwards

11.01.2022 G’day all, Well it’s been a week on the new drugs, zero side effects, save for them heating me up for a while after taking them. Multiple tumours that you could see and feel on my back in particular are now gone. One on my right eye still there, albeit not causing me as many problems as it was and one in my right arm that has definitely decided it’ll be the last tumour standing, that’s ok, I’ll get it eventually.... So my Oncologist told me I had three months when I left his rooms around six weeks ago. Unbeknownst to me he’d privately told Penny, more like four to six weeks. So I made six weeks before receiving the call from Melanoma Patients Australia (MPA) that this new drug was coming, cut it all a bit fine in the scheme of things but I’m pretty bloody grateful I lasted long enough eh Happy Easter to you all, thanks for all of your support, hopefully I’ll be sticking around for a while from here now, thanks to Eco/Bini, just gotta get rid of Covid 19 now so I can leave the house and start enjoying life again. Onwards and upwards

11.01.2022 Not a bad view for a couple of days of kids, grandkids & old girls

11.01.2022 G’day all I had a PET scan last Friday and got the results today Firstly, it was a shocker, growth in existing tumours, new tumours and an area in the base of my skull that may need radiation because it’s causing me grief in my left lip, making it continually numb (nerve damage)... Secondly, I had this scan a few days after having my first full strength Ipi/Nivo, so the scan doesn’t take into account what has been smacked by the drug in the week after I had it Still a shit result, no escaping that part, I go in again in two weeks for my last Ipi/Nivo, so potentially six weeks in total of the drugs giving everything a touch up Not the outcome I wanted obviously but I was fully expecting it, given the earlier treatments hadn’t worked So I’ll still be fighting the thing with everything I have but it’s going to be a battle, just wanted to give you all the latest given how awesome everyone has been on this mad ride Down, not out

10.01.2022 G’day all Been in here again all week getting radiation, home for a day trip & then back in tonight for more tomorrow It’s been an emotional week this, all the raw emotion of our current circumstances, mixed in with plenty of visitors, family and friends. Thankfully for the first time in over three years my brain started working as it used to before I started bombarding it with all of these toxic drugs. To be honest, being able to think straight, imagine, rip on mates & just... function as a human again has been fantastic The down side of that, obviously, is the substantial amounts of melanoma in my body now has also been partying, a few new bumps, different pains etc, but as I said the other day, I have no choice in that, so having my brain back is the weeks biggest positive by far Hopefully off to see about the trial/experiment on the 6th of March after some resting up with side effects I am mentally great and physically motivated today and whilst that’s been intermixed with massive bouts of raw emotion, sadness and regret at times, I’m writing this week up as a win! Two weeks to go until I have all my family on the Coast for three days to work though all of our emotions and fears and hopefully come together All four of my kids have been the most amazing individuals I’ve ever spent time with and obviously Penny who finishes the week each time totally exhausted, a very special mention for your spirit, love and just pure awesomeness A week to the good guys! Onwards and upwards from here guys

10.01.2022 G’day all, Since the last update I’ve had a mixed bag, out for lunch and several drinks plus an outing to a mates funeral, all in the one week which is massive for me at the best of times. Got home from the funeral Friday 12th and woke up 13th crook as a dog, fevers & fatigue.... The fevers lasted three days, the fatigue has only just started to lift this week thank Christ, it’s insane how this stuff goes, the fevers are a side effect of the meds I’m on and the fatigue from the radiation I had earlier in the month. Oncologist on Wednesday, we’ve cut the dose back a bit as well as having two days off it each week, which will obviously help. The past three days I’ve managed to stay awake all day, something I believe deserves a Logie at the very least Shit disease this, unfortunately the medication is equally as shit, radiation ain’t much better. All in all though I’m still here and can feel myself getting stronger again, I’ll be back exercising again hopefully next week after a long period of laying on the couch Biggest roller coaster on the planet Onwards and upwards

07.01.2022 G’day all, Haven’t had much to update the past few weeks, I still have to wait for stage 2 of being approved for any trial and I’ve now been over a month without any treatment. As most would garner from that, it’s not ideal and I have had disease progression in that time Got all of my kids, Grandkids and family coming in for the weekend to stay in our complex, really looking forward to that... Been eating like a horse, eating what I want and got to take Pen and Mum out in the EH yesterday and have a decent lunch The one thing I’ve learnt out of my time on this rock is that I spent too much time working and not enough appreciating family. I’m making that up where I can but if you ever find yourself in that boat it’s worth sitting down and having a rethink every now and then eh No onwards and upwards this week, more of a hang in there and see wtf happens on this update eh

07.01.2022 The weekend ends and reality starts settling back in. On Wednesday I’ll have an MRI and CT. My various tumours have all experienced growth, worst being in my chest. I’ve been lucky, to date, insofar as the pain has been self managed It’ll be a week then from Wednesday until the earliest treatment is approved or not.... So to be frank, there’s a real chance, given progression, that I won’t make the treatment but obviously I’m aiming for that end. I want to thank all my family and friends for all of their support and love to get even too where we are and especially Penny, who didn’t stop all weekend making our family get together work We’ve had to stop visitors outside of close friends and family due to the obvious additional risk of Covid 19 on me as well as just sheer exhaustion. We’ve been so lucky to have been able to catch up with so many mates and Comrades, that coupled with the steroids kicking my brain back into gear has been brilliant to be honest. Onwards, upwards and a fair bit sideways this week Comrades

05.01.2022 Scans yesterday, trial doctors today. Have to go back Monday now to see if I’ll qualify, blood test etc just done. Also, for some reason my phone has gone nuts this week, reckon there’d be 30 messages on it. I’m trying to cut my steroids down to the bare minimum for this trial. When I cut it even half a mg it makes me tired, so sorry to those that have left a message, I won’t get to it sorry, same with messenger, I deleted that months ago because it was taking way too much ef...fort to maintain From here on in, I’m going to be a bit selfish sorry, got too much at stake to screw it up Appreciate it eh

03.01.2022 G’day all, Some not great news to report in this update. Had a PET scan Monday, results today. The Eco/Bini tablets aren’t working, I’ve had progression throughout my body, bone and muscular.... As a result, the last roll of the dice is Ipi, the drug that nearly killed me once and hospitalised me every other time I’ve had it. It’s the only drug left in the arsenal unfortunately, I start treatment tomorrow. It’s a mental head fuck this disease, a few months ago I was cheering and hoping for at least another twelve months on this rock, tonight I’m literally back fighting for my life. Not assisting on the mental score, I’ve had debilitating fatigue and up until today I’ve blamed that on my steroids, Oncologist confirmed today it’s purely from the cancer. I’m spending a lot of time sleeping during the day, not so much during the night Sorry about the negative tone of this one but it’s all I got Cheers

02.01.2022 It is with a breaking heart that I write this post to inform you that my darling husband Peter John Simpson (Simmo) passed away tonight Much loved husband, father, step father, son, brother and friend to many. He has been so incredibly brave right to the end in dealing with Stage IV metastatic Melanoma battling to stay with us as long as he possibly could. I’d like to thank everyone for all your support. I especially want to give a huge thank you to Dr Matos and all the s...taff in Ward 3 at the Gold Coast Private Hospital they have all been amazingly caring over the last few weeks and I wouldn’t have got through this without their support. I can’t believe that my best friend my everything has gone. I will miss him so much. I will post more details regarding his funeral in a couple of days. Love Pen x

02.01.2022 G’day all, A couple of days after the last update it all turned to shit for some reason, the Doc couldn’t get the treatment until today, so at 10.30 this morning, as late as last night we were wondering how was going to get there. Of the over 100 tumours I now have to my muscular/skeletal system, I have a massive one in my right leg, just about the knee cap. Doctors have been warning me for months to take it easy on it because if it breaks it gets ugly.... I’m my usual style I didn’t take that much care, but on the other side of things I have exactly been off the couch for the best part of the year Went to get the crap results last week and walked to and from the car park no problem, went to get out of bed Friday morning and couldn’t walk Spend the next four days in bed asleep, sleeping 20 hours a day, late Monday arvo I tried a light steroid, woke up at 5am this morning and took another and by 7 I was ok, leg still wasn’t great but I was heaps better and went off to get the Ipi treatment By the end of the treatment I got up to go to the loo and walked out down the hallway the nurse yells out aren’t you forgetting something? I touch my back pocket, thinking it’s my phone, looked back and here’s my mobility scooter waiting for my arse’ return So yeah the legs come good, still gotta watch it but what a clown eh Yeah so one of four treatments, I need this one to work Onwards and upwards

01.01.2022 Night and day from hell Haven’t been able to eat anything since lunch yesterday, well I have but it ain’t in there long, had to cancel visitors and spend the day in bed, still not going great I’ll have the rest of the week resting up, for except for a heap of doctors appointments tomorrow I really need to attend ... Felt great yesterday until after lunch and now down to the bottom again Needed a whinge, fuck melanoma and whatever it’s trying on now