damamma
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I would be very interested in reading your PDF Dianne. I too am in Ontario and would love to hear how this has gone for you.
My sister has been deamed “Inoperable” and if there was some option for her other than simply “palliative chemo” we’d certainly explore it.Thanks all. Just to clarify my sister has been undergoing Chemo since September 09. 8 Months of Gemcitabine and Oxaliplatin every other week.
Its been a long 8 months but they gave her a year with chemo and to date things are looking pretty good.She’s tolerated the chemo remarkably well, and and all her tumour markers are decreasing steadily. Her Ca19-9 has come down from over 14,600 in September to just over 600 now. Every month it seems to decrease and as well they’ve found nothing NEW or UGLY in her CT’s.
So aside from the side effects of the chemo, she’s going great…
Her last appointment they decided that the neuropothy (sp) in her feet was becoming severe and decided to cut her dose of Oxliplatin by 20%. Hopefully this will help her.Her next appointment is May 10th and we should be seeing a new Oncologist, since hers is leaving town. Maybe a fresh set of eyes will have some alternative treatments for her.
My sister just had a port installed a little over a month ago. She opted for the port instead of the pic for the convience of not having to make the extra trip to the hospital to have it flushed.
She has two young grandchildren and didn’t like the idea of having it visable on her arm.She had her first chemo through it two weeks ago today and said it was Sooo much easier. Her veins had just given up the ghost, often having to have an Iv re-installed in the middle of her treatments.
She has chemo on two days back to back, and the second day was always the worst for her IV’s – sometimes blowing veins a couple of times in the course of treatment.
After a lenghty discussion she finally opted for the Port and is so happy that she did.
Edited to add: Installation of the port did require a “twilight” and a surgeon instead of a qualified nurse. Something to consider.
My sister has Adencocarcinoma originating in her appendix with mets to her peritoneal cavity. They were looking at sending her to Buffalo NY for intraoperative hyperthermic chemotherapy when running these tests they found that her bile ducts are dialated and they eventually diagnosed bile duct cancer / cholangiocarcinoma
The Surgeon we saw at Sunnybrook Hospital was Dr. Calvin Law. He originally was really gungho to send her to Buffalo but after the bile duct discovery she was deemed “inoperable”.
Its been a tough few months, we live 7 hours from Toronto, and made 5 trips back and forth only to be told that she couldn’t be helped.
I’ve been reading about Cyberknife and it does look like it could be a real miracle. I’ve read that its being used for prostate cancer as well. Our dad has just been diagnosed with that in the last month or so.
I’ve read that its being done in Hamiliton and Ottawa now. Hopefully if radiation is suggested to my dad he’ll have that option. Who knows.We’re hoping that the new oncologist thats been assigned to her case might have a bit of a different outlook, we can hope. Shes taking over for my sister’s regular Doc in the next few weeks.
Hi Everyone
Thanks for all the replies. My sisters journey into this world has been a strange one. The doctors all say to her that shes “such an unusual case” since she has two different distinct cancers at the same time, both of them quite rare.
She’s been seen by two different oncologists, and two different surgeons all have expressed the same opinion. Unfortunately – no one seems to think she’s a candidate for anything other than “pallative chemo treatments” as one oncologist called it. grrrrr….
The surgeon at Sunnybrook hospital in Toronto assured us that he had not only gone over her case with everyone there but with anyone he could think of across North America that he thought might be able to help.Cyberknife has only just become available in Ontario, I’ve just downloaded a bunch of info about it and will be bringing it with us to our next appointment . I’m not sure that she will be a candidate for that either as they say that she doesn’t actually have much by way of measurable tumours but her cancer is basically from her bileducts through her liver and into the mouth of the pancreas.
In the coming month her case is being transfered to a different Oncologist as her current one is leaving the city and moving to research instead of hands on patient care. We’re hopefull that this new one will perhaps have a different idea on what we can do.
We wont’ give up hope!!!
