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Hi Anne,
Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your husband as well. Glad that you have gotten more involved now and made your first postings on the site, we don’t bite, honest! I know though that it can be hard sometimes to finally post rather than lurk as it were and please do not worry about having little to contribute. It is not about contributing and we are here to help if we can.
Yes it is slow here with the time of the year and it is the weekend so I guess that makes it doubly slow with posts and all of that. No worries? We say that here in Scotland too so that is something else that we have in common! From what you say in your post it sounds like you are both up for the fight and have a positive attitude and that is great to hear as a positive attitude will carry you far,
Real glad to hear that your husband is not having any side effects to his treatmentm and I so hope that this continues to be the case. Have you checked out the search forum function at the top of the page as that will throw up much info for you on all manner of topics?
I look forward to hearing more from you Anne and please know that you are not alone in this now. We are here for you and we care, and please let us know how everything goes.
My best wishes to you and your husband,
Gavin
Thank you Juilie,
Until we get farther along with this IMRT, I have little to contribute. But, it is a wonderful website and comforting to both patients are caregivers.
Look forward to staying in touch.
AnneAnne…You are very right…there are a LOT of generous people on this website. Some come and go, some just lurk and others pour out their heart and soul as they fight this cancer themselves or alongside loved ones. As to “total strangers,” I figure there are no strangers here, unless someone wants to be. We do understand that there are a lot of people who just “lurk” for information and never go any further. There are a lot of ways to help people, and fortunately, there have been so many people on this site who have shared their experiences, that the website can sometimes help a little , those who are uncomfortable posting. We’re glad to have you on board.
Juilie T.
Good evening Lainy and Iowagirl,
thank you for your welcome….it means a lot as both of you know…..It is a slow period with holidays etc. —no worries as they say in Utah…..there is a wealth of great support on this website thanks to generous people like yourselves that take the time to respond to total strangers.
Thank you both,
Anne
Anne….welcome to the website and a lot of very supportive and caring people. I don’t have any info on the Xeloda or IMRT …haven’t had those or know anyone who has, but there will be some others who respond. Lainy is right….this week is sort of a slow week …between holidays. People will be back again soon enough. Glad to hear that you are up for the fight and not giving up Be aggressive and keep punching that tumor with whatever you can to beat it back.
Julie T.Dear Anne, I wish to welcome you and hubby to our site which is the best place to be for CC support. While I can’t help you with those treatments, my husband never had them, I know that plenty of family will come forward. I am thinking this is a very slow weekend due to the holidays but don’t give up on us as you will get responses. Your attitudes are great, just what we like to hear and new treatments/trials are popping up all the time. We WILL win!
Although I have logged on to this site on numerous occasions, I have decided it is time to get more involved and perhaps share experiences.
My husband was diagnosed with an unresectable Klatskin tumor in March 2013. Chemo (Gemzar), followed by Tarceva, FU-5 have kept the tumor from growing, until recently when his CA 19-9 climbed from a little over 100 in June to almost 2000 recently.
He is currently undergoing IMRT radiation with Xeloda, and has 20 treatments to go.
So far, no side effects.
If anyone has any insight into this therapy, comments would be most welcome. It has been a long 19 months but we aren’t giving up.
Thank you for any insight you can provide.
Bea, Ringing in the ears here also. At the time I was doing the chemo (Gem/Cis) I knew that it had increased (I’ve always had some ringing in my ears and one ear had reduced hearing for years) Each chemo treatment, the oncologist would ask about hearing/ringing in the ears. I think I felt so yuk in general, that I don’t think I really was totally aware of just how much the ringing had increased. Prior to chemo, I wouldn’t hear the ringing during the day,…only when I laid down in bed at night and it was quiet. It wasn’t until about a month or more after the chemo that I really paid attention and realized that I was hearing ringing during my daytime hours….it was apparently louder than it was before I did chemo. I do have similar problems to those mentioned by others….understanding voices in groups. As Melinda said, it’s something I can live with. I did six rounds of Gem/Cis, with the last round reduced by 25%. I’m also 60 years old….diagnosed with I- CC in January and as you….a lot of life yet to live. Keep demanding the best…you deserve it.
Bea,
I am so glad you are on top of it and paying attention and seeking answers. I would guess that I have the same hearing loss as you describe……my kids laugh at me because we have this thermometer that beeps when it is done taking your temperature and I can’t hear it at all!! But, in the big scheme of things, this is definitely something that I can live with. As Marion mentioned this is the response of the cisplatin and other platin drugs. My biggest complaint is still the neuropathy in my feet….but once again, I can live with it!! Take care and please keep us posted! Hugs to you!
MelindaDuke, Chuck has 2 hearing aids and doesn’t hear well sometimes. I made an effort to talk slower and when we are on the phone louder. This is the first man who has really ever been able to tune me out!!
Keep pushing your team to have a Plan B and a Plan C for future treatment options.
I got hearing aids this summer. Two problems that they can’t address. First, noise is amplified as much as sounds you want to hear. Second, my brain sometimes doesn’t process words accurately even though I can hear them fine; just can’t understand them. My oldest sister has the same problem, “Saying the same words over and over, just louder, doesn’t help. Use different words.”
Duke
Melinda,
First, congratulations on your 5 year mark. Awesome that the immunotherapy trial worked for you.
My ENT appointment resulted in a hearing test. I have high frequency hearing loss. So yes, some nerve damage. It’s rare when I can’t hear someone in a crowd, but voices are definitely muffled in a crowd. I’ll have a follow-up hearing test in 6 months or sooner if things change. I’ll be having a CT scan the end of January to see how the tumors are doing. I’ll continue on the reduced cisplatin and full gemcitibane until then. We’ll assess at the time to see if treatment changes are necessary.
Thanks again,
Bea
Bra,
Welcome to this wonderful group of caring friends. There is so much good information and support here. I am glad to read you are tolerating chemo well and also had the genomic testing done. I will be praying for you.
Hugs
LisaBea….I too would like to welcome you to our site. Congratulations on your great response to to the current treatment. You might already be aware that the platin drugs (Carboplatin, Oxaliplatin, Cisplatin) can cause tinnitus and/or hearing loss in the high frequency range.
I entered “hearing loss” in the search engine and pulled up one of many discussions on this subject.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=89398#p89398
Hugs,
MarionDear Bea,
What you describe about your ears being blocked is exactly what I get when I am in crowds or anywhere there is a lot of background noise. In those situations it is very hard to hear someone who is talking to me. That is really the only time I can notice a deficit in my hearing. Please let me know what you find out…thanks….Melinda
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