kernos
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Hi Lynn,
Yeah I have a very supportive family and network thanks. Not a week has gone by for 40 years where I haven’t wished I was back in the Northern Rivers. Until I got diagnosed, services are much more readily available in the city.
I’m not sure what services you have available to you but on top of my oncologist I also have a Palliative Care Doctor whose sole purpose is to look after and help me balance my quality of life. She has been much more useful than I thought at the beginning in helping me keep me thoughts balancedand my priorities straight. I am a public patient btw.
I want to stress I’m just a patient and know bugger all about medicine but cancer seems a wierd thing in what might and might not work. My father in law was given 6 months to live over 6 years ago (not CC) and things have just started deteriorating recently.
As Lainy has said you need to have a talk to Greg and then see how you progress from there.
Tony
Well, I’ve started my keytruda trial and no adverse side effects nor any of the conditions I had to do when on chemo so that’s excellent.
Whilst receiving my first treatment I was helping some trainee doctors learn about my CC and found out there is another person with CC on the same trial, which the doctor running the trial said was very unusual as it is so rare.
Fingers crossed I last the 2 years lol
Hi guys,
Not a carer sorry Lynn but I am in the uncurable category. Sometimes I just lock myself in my room and cry and then get back to what I was doing. Sometimes I just need to feel sorry for myself and then move on.
As for trials my oncologist told me the other day if you are medically unsuitable for one then most likely it will be the same for most.
Location is also an important factor sadly, I live in the greater west of sydney and my local hospital is running a keytruda trial I was lucky enough to qualify for but it filled up in 2 days. Another hospital about 20 mins away is running another trial I was offered to apply for.
My oncologist has been very clear though if this trial fails and I manage to get on the other one, if it doesn’t work I’m onto the chemo merry go round till its over.
Things are available sadly the stars need to align.
Good luck and try to enjoy your time together, it’s what my family is doing.
Thanks
Not sure hy but I feel upbeat about this one. Domethjng i never felt with the SIR Spheres
Tony
Hi Marion,
Good news today, I’ve been accepted or both trials so I need to decide by this afternoon which one I shall do.
My oncologist wants me to do the Keytruda trial which has the added bonus of being at my local hospital.
Thanks or the positive thoughts
Tony
Hi Tiah,
I had Sirt Sphere treatment in January at Westmead in Sydney.
The team that did it where great, as where the reps from the company who created and delivered the spheres. I didn’t have private insurance that covered it so whilst the hospital stay etc where covered under medicare the actual spheres were not and set me back $10 000.
I had side effects that they have ever seen before and two months later they still remember my face because of it so I’m probably not the best person to talk about that side of it,
On the plus side in there words it “destroyed” my large tumor but didn’t seem to get any of the smaller ones. I remember they inserved the sprees into 2 different areas so I guess it was only a partial success.
I haven’t been able to really talk to my oncologist about it as I saw his registrar last visit and because of the way my CC has progressed they were more focused on where we can go from here.
I definately won’t be going through it ever again but that being said talking to the team beforehand they were saying how successful the procedure is.
Good luck and best wishes
Tony
Well the Sirt Sphere results are in and whilst it appears to have destroyed one tumor (though I’m thinking it might hae been my cist) the CC has spread to the other lobe in my liver and to surrounding lymph nodes.
So the good news it is at least contained. They are also very confident it’s definitely CC I have, it’s kind of comforting to at least be able to name it.
My oncologist is chain down 2 trials to see if I’m suitable for them. The irdt is immunotherapy ad the second is abraxane. I see him Thursday to find out.
Tony
Thanks Lainy
I know I don’t post much but I want you mods to know how much I appreciate this site.
Thank you
Tony
Well I loved the break over Christmas. Felt like a real boy again
SIRT Spheres done they were very happy with the procedure, now to wait a few weeks till I get the results.
Slightly amusing thing in the scans after ythey discovered I now have gallstones, which thinking I had gallstones is how they discovered my cancer
