Update
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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
No thanks needed we all are in this together! Honestly, I get more out of this site than I give. By that I mean I would have never “met” such awesome people from all over the world, people with care, love and intelligence who probably would do a fine job of running this world!!!
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
Kernos, that sure sounds like a revolving door! The important thing is that they are happy with your response to the SIRT and I am excited to hear the results as well. Here is wishing and hoping for the very best!
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
A break sounds like a good idea to me Kernos, esp over Christmas. Hope that you can enjoy Christmas as well with the break and come back fighting with the SIRT. Fingers are crossed for the SIRT to do it’s job!
My best to you,
Gavin
Lainy that sounds great
Marion yeah I did some reading when my first chemo stopped working, It’s quite amazing how they work if it wasn’t so deadly,
We are giving my body a rest from chemo over Xmas and giving SIRT a shot once things start up again.
Thanks
Tony
Kernos….I have learned that at one point, tumors simply become resistant to a particular chemotherapy agent. There are others out there. Looking forward to tomorrow’s report.
Hugs,
MarionKernos, wouldn’t it be great if the small new tumors ate up the old big tumors but since we know that is not the case we will hope for a good treatment plan. Please let us know.
Latest scan results back. Old growths are getting bigger and there are new growths also. Good news is it all seems to be confined to my liver.
I see my oncologist later today, it will be interesting to see what he wants to try next,
Thanks for the info.
Yeah I have access to a counsellor if I want one, atm I’m happy with my team.
Strange coincidence My oncologist who was assigned to me is the same oe who has been looking after my father in law for years though different hospitals plus my GP who I trust speaks highly of my immediate team.
Thanks
Tony
Hi Tony,
Not sure if this is any help, but just wanted to say that I hope you are also getting some assistance from the hospital with the emotional side of things. There should be an oncology psychologist or counsellor I would think, and if that person doesn’t seem right for you, your GP should be able to send you to someone.
If you feel you’d like a second opinion, RPA is I believe the biggest liver unit in Sydney. Some of the surgeons there are involved in research collaborations with people from the US and Europe. When we were in Sydney 3 years ago the oncologists also had clinical trials going.
Regarding genetic testing, we had it done last year, had to pay the full amount though as it is not covered by Medicare or private insurance. There is an office for one company in Sydney and they send the samples to the US (results were back in less than 2 weeks). I believe the Garvin institute will be sequencing patients samples at some time, but they were not ready last year.
Good luck with the testing results.
Regards,
GenevieveTony, we have big shoulders so please feel free to vent all you want. I think it is therapeutic especially when typing it out on the keyboard. It takes a great attitude to get through this journey for patient and caretaker. My husband and I used humor. I think we could have taken our show on the road. But it got us through. For me it continues to get me through. One of our great Football coaches, many years ago said, “Attitude is not everything, it is the ONLY thing”. BTW that was Vince Lombardi.
I cannot think of one person who didn’t feel like they got hit in the stomach with a bat when they were told what they had. My husband sat in the living room for 3 days wrapping his head around it all and his mind won. His only request was that we don’t get upset in front of him as he was afraid it would tear down the steel brain he built. For him this worked.
It seems we have quite a few CCer’s with Diabetes. I would think that the way you are supposed to eat with D. would also be good for CC. I am glad you have started to come out of the hole, we wish for you to be up here! Let us know what happens!Thanks Lainy and Marion
Lainy the registrar said it was a common occurrence and I did some reading up on it and those cancer cells are tricky little buggers. I’m probably putting to much importance in the tumor markers, they make it feel like I had 3 months of chemo for nothing.
Marion I’ve changed from Cisplatin to Carboplatin and still on the Gemcitabine. My oncologist warned me again about the extremities danger when I reached cycle 6 as I’m also a type 2 diabetic. My podiatrist tested for nerve damage and found a deterioration in my mid level nerves I think it was (tuning fork test) whilst still in the good range it was significant enough for them to change to head of any complications. My podiatrist will now test every 6 weeks when I see her.
As for genetic testing, I’m not sure how common that is here yet I think it is only done in one place in the country but I’m not sure. I did get accepted for a trial that involved genetic testing of my biopsy if it was still viable. The trial isn’t aimed at current patients but the chance of having the tumor genetically identified is a possibility.
The trial is very popular and the lab doing the testing is doing it free of charge so it’s low priority, my oncologist is chasing them up to see if my results are back. If they have trouble nailing my treatment down it will be an option I will pursue I think.
My main priority atm is getting my head on right, I dug myself a hole on diagnosis then climbed in and pulled the dirt on top of me like a blanket. I started digging out a few weeks ago but it’s taking time. I haven’t been looking after my diabetes or cancer and that wont help anyone.
Having here to come and vent is a big part of getting my head straight so thank you for everything.
Tony
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