I hate this disease!
- This topic has 5 replies, 4 voices, and was last updated 8 years, 7 months ago by
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Hi Irene,
Welcome to the site. Sorry that you had to find us all here and sorry to here what you are going through with everything. But glad that you have joined us here as you are definitely in the best place for support and help and will get loads of both from everyone here.
Sorry that I can’t help you with the treatment questions you ask as my dad never had chemo or RFA, but I know that the search forum function at the top of the page will throw up many discussions on all of that by the members here on the site.
I do hope that you keep on coming back here as you are amongst people who care and can so relate to what you are going through with all of this. We are here for you. Please keep us updated on everything.
My best wishes to you,
Gavin
Irene,
Mom did 3 cycles of chemo (Gem/Cis) and then had 2 treatments with radioactive microspheres (SIRT). She’s being treated at Univ of MD. For the past year, we just go in for CT scans and blood work every 3 -4 months and will stay treatment-free until it comes back.
Take care,
CatherineDear Middlesister1
Thank you for your encouraging response. Would you share with me what your mother’s treatment was and where she received treatment.
My PET scan and CT are scheduled for next week.
Thanks,
IreneDear Irene-
Welcome to our group. So sorry that this disease wrecked havoc with your birthday (and much more I’m sure). I hope that the doctors figure out a treatment plan that gets it under control so you can celebrate many more happy birthdays. My Mom was diagnosed at 73 and is doing great now 2 years later.
Let us know how you make out.
Best wishes,
CatherineDear Irene, you said it perfectly as we all HATE this monster. My goodness you must be 78 going on 40!!! To be able to withstand all you have gone through. Bless you. Don’t tell anyone, but I am only 3 years your junior.
I cannot recall reading about that hospital. If you go to our search engine at the top of the page and type in the hospital name any posts we have on it will appear. Have you ever had a 2nd opinion? We are big believers in 2nd and 3rd opinions. Never heard of Chemo forever………
This monster does not have any boundaries and we never know what it will pull out of its bag of tricks. I am sure more members will appear here to give their take on your new status. In the meantime please keep us posted as we care and want to hear how you are doing. Below is a site you may find helpful:http://cholangiocarcinoma.org/newly-dx/
In 2013 I was diagnosed with Autoimmune Hepatitis/Cirrhosis. I never had any symptoms and was happily living my live feeling healthy until June 2015. My ultrasound showed a 1.4 cm intrahepatic lesion. This quickly led to CT scans, MRIs, PET scans and a liver resection on July 9, 2015 (my 78th birthday) for an isolated cholangiocarcinoma lesion. The surgeon said the margins were clean and there was no evidence of other diseased areas. Four months later on my follow up MRI there are 5 new lesions all under 1cm in size. I can’t believe how quickly this alien growth is taking over! I’m going to see the radiation oncologist this afternoon to discuss Radiofrequency Ablation which will probably be followed by chemo- Gemcitabine and Cisplatin (forever, they say).
All of this is being done at Jefferson University Hospital in Philadelphia. Is there anyone else in this group being treated there?
I’m happy to have found this group and look forward to reading your comments and your stories.
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