February 26, 2019 at 4:46 pm #98222
Hello. Thanks for the comments. Went back to chemo yesterday the 25th so we’ll see how it goes. I was on the gabapentin but a very small dosage. My Dr. has upped my dosage considerably. Also I had an appt. with a genoligist but had to cancel because one of our wonderful Minn. snowstorms. I am rescheduled for next week. Also thanks for the links on neuropathy I will look into that. Guess that’s it for now will check in again with any new info. Good luck to all battling this lousy disease.February 24, 2019 at 10:31 am #98212gavinModerator
Good to see you back on here and thanks for telling us a bit more about things with you. Sorry to hear that you are not feeling too good right now and hopefully things will pick up for you very soon. Have you tried the search forum function on the boards to see what posts there are on neuropathy as I am certain that there are quite a few by the members here?
I have some links for you on this subject should you wish to read about it.
I hope that some of these are of use to you Frank and please let us know how things go for you.
My best to you,
GavinFebruary 24, 2019 at 8:55 am #98209HannahaParticipant
Consider asking your doctor about gabapentin? My mom takes it to ward off the neuropathy you describe. As a useful side-benefit it has done a number on her restless leg syndrome.
HannahFebruary 23, 2019 at 7:02 pm #98206bglassModerator
It is good to hear from you, and thank you for detailing your story. I am sorry you haven’t been feeling well, hopefully the chemo can be restarted without incident and can bring things back under control.
Were you able to have genomic profiling done when you were diagnosed? Depending on the results, the test might open up additional treatment options.
Wishing you the best as you resume treatment.
Regards, MaryFebruary 23, 2019 at 11:06 am #98195
Took a bit to get back have not been feeling real well.
In February 2018, I was diagnosed with what the doctors initially thought, was adenocarcinoma, possibly originating in the bile ducts of the liver. The liver enzymes were elevated and the CA-19 was at 548. The plan at the time, was to start Fluorouracil, Oxaliplatin and Leucovorin in March 2018. At the same time, it was discovered that the tumor had spread to my left leg/hip area. On May 1st, chemo was stopped in order for me to have my hip pinned and rod inserted into the left femur. After rehab, chemo resumed until the end of August. By this time, the liver enzymes were normal, CA-19 was at 54. It was determined sometime during the summer, it wasn’t adenocarcinoma that I had but was CC. I was feeling great, almost to the point of returning to work until mid-December when I began experiencing pain in my left hip. A CT scan revealed that the cancer was growing, not only in my left hip joint but now in my right. But the good news if any, the liver was doing well. The next plan of action was to undergo radiation to see if that would help knock this down some. After 10 rounds, a scan revealed that the cancer hadn’t spread but hadn’t shrunk the tumors either.
As of February 12, I began a new chemo treatment of Cisplatin and Gemcitabine which has increased the neuropathy pain in my feet. After 1 treatment, it was decided to wait a week before resuming treatment, to see if there was any relief. On Monday the 25th, we will try again chemotherapy again.
By the way, I am 62.February 15, 2019 at 8:47 am #98162JanicereneeParticipant
Welcome, Frank. You’ve come to a good place with good people.
Hoping for the best for you,
JaniceFebruary 10, 2019 at 9:23 am #98127gavinModerator
Welcome to the site! And yep, Mary is right in that you are posting on the correct page for introductions and all that. But to be honest, you can post where you like really and feel comfortable doing so please do not worry about that at all. And, if you post something that you thought was in the wrong section for the topic then no problems as I can move it for you to another section. Looking forward to hearing more from you Frank.
My best wishes to you,
GavinFebruary 9, 2019 at 12:56 pm #98124bglassModerator
Welcome to our community. Where you posted is good, and I would add that most people click first on the beta for most recent posts, so all new posts are easily found.
We look forward to hearing your story. I hope you’ve found the many patient resources available on the Cholangiocarcinoma Foundation website.
Take care, regards, MaryFebruary 9, 2019 at 10:36 am #98123
Hi My name is Frank and I was diagnosed with CC Feb. of 2018. New to this site. I hope I’m posting in the right area. For now I will leave it short and if someone could let me know if I’m in the correct area. good luck to all.
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