After having the more agressive treatment of the Ipi & Nivo, it was found that I had an issue with my Pituitary Gland, which processes hormones for different functions in the body.
To offset the lack of hormones being produced, I was put on a hormone therapy replacement treatment of 160mg day, ideal dosage should be 10mg day. Over the last two months I have be weened down from 160mg day to current daily dose of 35mg, with a target of 10mg in the next 3 weeks.
By having this higher level of steriod, I have had a change in my taste buds making eating certain foods not enjoyable, everything taste metallic which most people on various chemo treatment notice. Hence the weight loss due to not eating enough solid foods. Most by diet over this time had been noodles and icecream, enjoyable but not ideal for healthy lifestyle.
Now moving to the lower level of the steriods, taste and appetite are starting to come back putting me in a better health and mind set.
Once at a normal level, the Oncology team will be able to review the treatment for the ongoing Melanamo issue.
Again support from the RAH, family and friends has been fantastic.
To assist these organizations I am holding a fundraiser #National Patio Day# to provide something back to them, hence the picture.
The Cost off Cancer
We all know the heartaches, turmoils and disruptions various form of Cancers can impact your family and friends, but not many realise the financial costs that may need to be outlayed for consultations and treatments.
Below is a list of costs that we have outlayed for my treatments, again each person would be different subject to the medical coverage they would have.
#These costs are prior to any Medicare Rebate pending type of medical coverage the individual may have and allowed to claim on#
Service by local GP $ 215.00, Clinapath Tissue Testing $462.00, Biopsy $237.00, Ultrasound $ 235.00, CT Scans $ 922.00 (4 per year), PET Scans $ 1125.00 (2 per year), Removal of Melanoma $1,440.00, Hospital visits $9,500, Anaesthetic Fees $ 795.00, Consults to doctors $ 1,250.
##In November 2016 Federal Government introduced changes to treatment of various skin conditions, which meant that skin cancers from certain regions of the body were excluded from using your Private Health Insurance##
Cost of medication if required:
Darrafenib $ 16,410 / month for 1 year
Pembrolizumb $ 3,500 / each 3 weekly for 2 years
June 19 to Sept 19 Update
So having started the trial in April 19 and having 3 weekly sessions of the Pembrolizumab, the reaction that we were hoping for was not working in our favour. My doctor had decided that we should review our options and look at the more agressive treatment, the combination of Ipilimumab and Nivolumab.
This combination had a greater risk of side effects but given I had none on the trial drugs, we hoped possible side effects could be reduced.
On the 11th September I was given my first dose of the combinato drugs (Ipi & Nivo). These are not traditional chemotherapy drugs and have a different way of working. They are immunotherapy treatments that work with your immune system to detect and destroy cancer cells.This was over a 2.5 hour period via infusion.
On Tuesday 24th Sept I had a reaction to the drugs which made eating and drinking near on impossible, and after 3 days of sufffering at home, hoping to work through it, we called and ambulance and was taken to hosiptal on Thursday 26th in a state of dehydration. The ambo tried several time to get a drip in but was not going to work, so into the Emergency I went.
##I should have listened to the doctors advise and gone in earlier when I was sick and not put myself and family in this position###
I spent the next 5 days on a drip and woken every 5 hours for vitals to make sure all I was at a safe level to be discharged. I was discharged on the 2nd Oct having lost nearly 8 kgs over this time.
I will update October to current in the next post.
March 2019 to May 2019
Early in March 2019 I was required to have another CT Scan to see how the growth had progressed since December, unfortunately it had grown more that expected.
Prior to the expected growth, I had 2 options to look at:
1) Single shot of Pembrolizumab with less side effects or
2) Mixture of Nivolumab and Ipilimumab with greater side effects.
With the added growth, as funny as it sounds it allowed me to qualify for the trial, alowing me a choice of 3 options. If the trial was unsuccessful, I could fall back to options 1 or 2. If I had started one earlier, I would have been ruled out of the trial, so we viewed this as more options the better.
The upside of this was that I was able to qualify for a trial being conducted at the Royal Adelaide Hospital (RAH) on a new Intravenous Infusion by Injection, rather than the traditional Infusion method.
The trial was to start in April 2019 and run for 2 years, with treatment every 21 days. During the first 3 cycles over the 63 days, I was required to provide blood 29 times at the RAH for testing and monitioring of my condition.
I felt like a pin cushion having to give so much blood over this time.
My next update will be from May 2019 to August will follow later.
My History Feb 2018 to March 2019
In February 2018 I had spot on on right thigh that I had for ages, thinking is was a mole or beauty spot. One evening it starting bleeding so I decided to visit my local GP, where he made a discection to remove for sampling.
A week later I was called in and advised is was a Melnaoma and that due to the size needed surgery to remove surrounding area to clear any other possible traces of it. Late February this was removed and at the time no other traces where detected by scans.
CT & PTE Scans were carried out every 3 months to monitor the movement / growth of the Melnanoma, so if any new activity was found, it could be actioned on.
Late September 2018 I noticed a lump in my groin area, which ended up being a Lymph Node infection caused by the Melnaoma return. Surgery was done to remove lump and resulted in 5 weeks of work for recovery was required. Another scan again resulted in no other activity found in my body.
In December 2018 on my 3 monthly scan, a small spot was noticed on 1 of my lungs, which was not confirmed as Melanoma, but given recent history was more than likely. It was decided to wait until March 2019 to see any if any growth had taken place.
2019 will be updated in my next BLOG
I’m hosting an event on National Patio Day to help fund Cancer Council’s life-saving research, prevention, advocacy and support programs
I’m participating in Stratco National Patio Day to help fund life-saving research, prevention, advocacy and support programs
Did you know that two in three Australian’s will be diagnosed with skin cancer before their 70th birthday?
That’s why on the first Saturday of summer I'll be throwing the 'right kind of shade' and hosting National Patio Day under the protection of my Patio. I’m inviting you to help me make a difference on National Patio Day by raising much needed funds for Cancer Council. If you can make it, I look forward to seeing you on the day!
The money raised through National Patio Day enables Cancer Council to fund vital prevention, research, advocacy and support programs that save lives.
By supporting my National Patio Day event, you will be supporting a cancer free future.
So thank you!
Thank you to my Sponsors
Caroline & Chris Cuthbert
Des And Lea Turner
Caroline And Chris Cuthbert