In 2 weeks time I will be celebrating 3 years since the big surgery, I dont know where the time has gone. Happy to say I have past 1 year cancer free so fingers crossed I can do 18 months.
Had a suprise early 50th birthday present today, got taken out to hampton downs racetrack & got to drive a V8 supercar Ford Mustang.
My last scan showed nothing of concern, I understand that doesn't mean you are all clear and can go back to a normal life, it means we will see you again in 6 months and look again. I believe that will be my life for the next 3 to 5 years, but also believe the scans will become less frequent if they continue to look good. I am realistic enough to accept that "one day" its not going to be "nothing to worry about" but until then I want to live.
My 50th birthday is coming up soon so that's something to look forward to.
Adam..
Great to hear that your scan was good. You have a good attitude and I hope you continue to have these good outcomes. Maureen
I had my 6 monthly ct scan this afternoon, now just have to wait for my review with my oncologist to discuss the results.
Going for a scan & having a needle in my arm has become a normal event for me now, I still remember my first time, it was all so scarey & the machines were frightening, but now it's just get it done & I'll see you in 6 months for the next one. Wow how I have changed in 3 years.
After returning home from the model aircraft national championships I was asked to have a heart check at my doctor's this morning, they were very pleased with my results & I'm sitting at a 4% probability of a cardiac event in the next 5 years, that's sitting in the middle of the green band, so that's reassuring. They will retest every 5 years because of my age & recent history.
I'm pleased to say my weight has stabilized at 95kg so I'm really happy to stay under 100kg.
It's so good to have an excellent health baseline.
All I wanted this Christmas was a break from treatment, but cancer doesn't work to holidays & wishes.
Here I am less than 1 week out and back on the topical Chemo for a little suspicious thing on my face.
Oh Adam it is a pain. I have an inkling of how you must feel as I have a precancerous lesion just inside the corner of my mouth which Nick is going to cut out in Jan. He was thinking of a topical cream but there's no data about its use inside the mouth. When you really want to fundraise big time for Keytruda, I will share this far and wide.
I have just finished a month on topical chemotherapy cream, it has probably taken care or the little cancers on the right hand side of my neck, but only time will tell. Still living under the cloud hoping for a sunny day. Thank you to everyone who has helped me so far on this journey, I need my friends around me for the remainder of the journey.
It's amazing what that cream can do. I wish there was something simple and comparatively cheap for the rest of our bodies. Cheering you on, Adam.
Everytime I go for a review with my specialist he finds something else to look at, although my pet scan showed nothing of concern internally, I have 3 little lesions on my neck that we are currently treating with topical chemotherapy cream. I have another review in about a month to check on my progress.
I have just had a call from Radiology, my pet scan is due on Friday, this is an interesting event, 24 hours prior you go on a no sugar no carbs diet, then they inject you with a radioactive dye that is sugar based, cancers love sugar and eat it up making them glow on the scan. Hopefully the inoperable tumor in my lung has not grown or changed & I have a bit more time before I need the immunotherapy. Until then I'm going to keep living like I don't know what the future holds.
Good luck Adam. I hope the tumour is too tiny to be a problem.
Hello to all my friends & followers, I am counting down to my first meeting with the immunotherapy team..from there I find out what the next 2 years of my life will look like. Wish me luck.
All the best of luck. We are thinking of you and your family.
Ngaire and Ross
Today I gave my consent to start the immunotherapy process, it's all starting to get real scary now, I'm committing to a 2 year treatment plan and the cost of approx $79,000 for the full treatment with only $6000 raised so far its a real leap of faith that it will all work out in time. So many questions for the oncologist when I see him. Really nervous about starting this next phase but after the last 2 years I'm confident it's the best thing to do right now. Wish me luck & please help me pay for this life saving medication.
Really hoping the funding comes in and the medication is troublefree.
To be honest it was a quick estimate of the cost of a 2 year course of keytruda, it breaks down to $8000+gst per treatment but cost capped at $60,000+gst by pharmac with a $400 per dose fee for the infusion that runs for approximately half an hour but must be done under close supervision. The standard treatment is administered every 3 weeks but there is an option to do every 6 weeks. I have so many questions to ask my specialist when I see him for the next consult.
My big surgery that removed the cancer from my face & took a graft from my right leg to fix the hole, radiation therapy, a small cancer removed from under my left eye, my left ear repositioned so I can wear my glasses, lung cancers removed from my right lung & last one was a possible cancer removed from above my right eye, wow that's a lot to go through in just 23 months.
This is a new thing for me, but then the last 2 years have been such an unknown, the next step is totally beyond my control, I need help from all my friends to get through the next 2 years of immunotherapy treatment.
I have shared quite widely. Wishing you all the best to reach the target as quickly as possible.
