Hi I’m new around here!
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Damamma,
You might want to suggest to your sister to get more fluids. I notice my neuropathy increases greatly when I am dehydrated. Dont know why, but for me it is true. I hate it when I cant feel how soft my kitty is.Kris
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.
Hi Damamma,
I would just like to join everyone on here to welcoming you to the board….
You have found an excellent forum for support, encouragement and knowledge regarding cc.
Wishing you and your sister all the best as she begins her treatment. Come back often and update us.
Best Wishes
Katie
A very big welcome to you, Damamma. Good Luck to you & your sister, as you go through her treatment together.
I’m a sister, too.
Julia x
Damamma, this is the very worst part, waiting and wondering what can and will be done. Somehow, once a plan is put in to place no matter what it is, everyone breathes a sigh of relief as they know some treament is going to be tried. Inoperable does not necessarily mean non treatable. So, hang in and like I say, a new pair of eyes may give a new outlook.
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.
Damamma, my husband Teddy, had Cyber Knife 1 1/2 years ago. Here, it is being used for CC with stipulations. The tumor must be below 7cm in size, there can not be more than a couple of tumors and of course they have to be able to get to it. CK is a real miracle and hopefully it will become more widely used. You can read all about it on the Internet. Only 3 days or so of treatment and few if any side effects.
Hi Damamma,
Your sister is way to young to be dealing with all this, but thank goodness she is lucky to have you!
We are from Ajax, ON, east of Toronto. My father was recently diagnosed in January, with CC, but has about 30yrs on your sister.
We’ve had second opinions also, the second being at Princess Margaret in Toronto. We are seeing Dr. Hedley, senior staff physician of chemo-oncology and Dr. Bayley assistant prof. of radiation oncology.
I too have looked into the Cyberknife option, it’s only available in Hamilton, ON and Montreal, QC. I spoke to Dr. Bayley about it and he is aware of it, but not very knowledgeable about it. However, what he did tell me was that it’s being used mainly on brain tumours and I think he said pancreas, but not for CC. He also said that even if we could have access to it, it’s not covered by OHIP, so you would have to pay for it out of your own pocket, and that it’s very expensive (he didn’t say how much). A friend who is an oncology nurse added, that it may also be an issue of weather or not the person running the Cyberknife is only skilled/trained at using on the brain an pancreas.
I’m still interested in seeing if we can access it for my Dad if need be, as it seems to be doing wonderful things else where. Maybe we can team up to put pressure on them, if we have to.
All the best to you and your sister,
Dianne
Damamma I am also from Toronto, and I am wondering if you have seen anyone at PMH? My mom was treated there. She also didn’t have any measurable tumors, they said that her particular type of CC was what’s known as cellular, therefore cyberknife was not an option for her. Maybe you should get a second opinion at PMH, there are one of the top 5 cancer research centers in the world. Good luck with everything.
Damamma, may I ask what the second Cancer is? Perhaps a new pair of eyes will be a good thing but I am wondering if they are not doing anything for a month??? You talk about the mouth of the Pancreas and Teddy had the head of the Pancreas cut off, kind of gives it a face, so it really is a monster, yes? Please keep us posted.
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!!!
Hi DaMamma!
I echo all the above welcomes! I want to let you know there is a search engine at the top of the page. You can enter key words or search by poster’s names. This might help you if you’re looking for a specific topic or need some info quickly.
We’re sorry you had to find us but you will find some of the most caring and compassionate people on the planet on this board. We’re here to help you anyway we can.
Sisters are so special and I know your sister is glad you are with her on this journey.
I’m sending prayers and hugs to you both!
Pam
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