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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 2
Thanks everyone for responding, it truly does help.
They have been able to diagnose her; with near certainty it's cholangiocarcinoma.
Her treatment went ok on wed and she was feeling very good until the day after the treatment when the steroids began to wear off- that's when the nausea set in. she's been scheduled for her next treatment this fri (9/12) and then she'll have a week off.
I was able to spend a lot of quality time with my mother over the weekend: when i got to the house fri evening she was very weak - and had not been eating nor drinking for almost two days. as a healthy person it's not easy to understand why she can't even drink, even if she has nausea. (apparently the previous time she vomited everyone blames on bad food with poor timing given all that is going on). being that she's a nurse she was aware enough that she was at the point where things needed to improve and instructed my father and me to take her to the ER. She was severely dehydrated and her bloods were way off (high potassium, high white blood count). They admitted her and began to immediately hydrate her w/ saline via IV and started her on various antibiotics (thinking there may be an infection causing the WBC to be elevated). on Saturday i went to visit her and she had improved tremendously- much more life in her face. she was improving the rest of sat and onto sunday too- requesting a more solid diet that the hospital was giving her and even drinking on her own (where before she couldn't even have more than a sip of liquid!), she also was interested in being able to sit up more and maybe move around a little. her blood work however was not improving as we all hoped- her RBC's were slowly decreasing with every test even though her WBC's were getting better. so they were monitoring her and even reduced the rate of the saline drip (thinking her counts may be off b/c of dilution or overhydration). it seems that she was still very weak even till this morning and they were planning on doing a transfusion to increase her strength and RBC's. as of last night she was disappointed and frustrated, maybe even depressed that she wasn't better yet but was able to relent in getting the transfusion today.
I'm back at work and it's really tough; i'd so rather just disregard it and be with her. I speak to her a few times a day but there are many times i just feel myself breaking down on the inside: any time i can tell her voice isn't as chipper or just indirectly from hearing people talk about they're moms on tv, etc. conversely when her voice is more positive and up or i see that she's feeling better i'm also in a much better mood. Being at home was helpful for me as i felt that i was able to contribute- even if it meant just tidying the house seeing as my father is preoccupied caring for my mother. it was also good for me to see my mother, even if it was in the hospital.
Either way i know this forum fills a certain void of mine and even without responses i feel it helps to write it out and update everyone on the goings on.
Thanks and be well,
I've been observing and reading this forum the past couple of weeks and see such tremendous value in all that this forum does and that which other people provide.
Mom- 64yo- had a lot of stomach pain and constipation starting a few months ago (june 08). she went in for scans which didnt really show any obstructions. she continued working and even taking a cruise with my dad to alaska- though she was uncomfortable throughout she did not want to miss it. upon her return she went in for further tests and while her blood work was fine they found a few spots on her liver and very small spot on the lung. they did a biopsy and were unable to differentiate and define the source; they proceeded to believe it was metastatic breast cancer as she had non-metastatic BC 2x in the past. However, prior to beginning treatment she began to exhibit other symptoms- jaundice, itching, etc.. that typically presents itself with CC or bile duct cancer. Still not having a full diagnosis- they tried an ERCP to input a stent to alleviate a blockage in her bile ducts and duodenum but were unsuccessful so they resorted to a PCT the next day (on wed 8/27) and she now has an external bag to drain the bile. She is still yellow but the color is diminishing and she is not as itchy. On fri she went in for a follow up and blood work and found that in addition to her diabetes (existing condition prior to cancer which has now become exacerbated) she is also anemic. The anemia is taking a big toll as she is very very weak and barely able to get out of bed and also loses her appetite. Today she is starting chemo (gemcitabine and taxotere i believe) at Columbia (where she's been treated b/4 and where her doctors are) and she will also be getting an iron boost weekly. Throughout all this she experiences intermittent shooting back pain and nauseau (threw up last night). Since this all started she's lost 25lbs (she was slightly overweight before).
We are interested in getting a second opinion, likely from Sloan kettering, but it's more important to stop delaying this whole process- it's been a few months now since she started feeling all this and is only starting treatment today! they ruled out surgery and figure chemo is the way to go.
My dad, recently retired, has been a godsend- catering to her every beck and call. I live roughly 20 minutes from my parents so i've been able to go home on weekends to help out where i can. i try to speak to her at least 2x a day.
I've been really affected by all this- it's very tough to cope. i see the stats and prognoses and i know it's not good. i constantly have dire thoughts that make me tear up even at work. I try to stay positive but i find it really difficult- especially when i can sense that my mom doesn't feel good- sometimes her mood on the phone is chipper and then i find i'm feeling a little better; but sometimes, like today, she could barely talk and handed the phone to my dad- from whom i've found out that she was not feeling well last night. i really don't know how to deal with all this- i'm constantly sad about the future. i've told my girlfriend and am considering mentioning it to a few more very close friends, but even so i'm not sure what i can do.
Any advise, support and words of encouragement will be very helpful.
Posts found: 2
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