My grandmother Dg. Klatskin tumor

Discussion Board Forums General Discussion My grandmother Dg. Klatskin tumor

Viewing 15 posts - 1 through 15 (of 29 total)
  • Author
    Posts
  • #37694
    xepalomero
    Spectator

    Dear Lainy,

    so true! Thank you for your kind words!

    my best wishes,

    SP

    #37693
    lainy
    Spectator

    Dear SP, so very sorry about your Grandmother but how wonderful that she got to see 2 Grandbabies! When someone you love becomes a Memory, the Memory becomes a treasure.

    #37692
    xepalomero
    Spectator

    Dear all,
    so many things happened during my long absence from this message board. We’ve had many bad moments, but also some happy ones. Our lives are changed forever.
    My grandmother lost the battle with her illness in December 2011, after 2 long years of struggling, at the age of 86.
    She never received any kind of ethiological therapy for her illness (surgery /chemo) so she was basically on palliative care from day one after her dg (she was given not more than 3-6 months to live back in 2010). However, she proved them all wrong!
    She lived to see the birth of both of her grand granddaughters in January 2011;
    she kept her mobility during almost the whole duration of her illness;
    according to her wish, she received palliative care at her home, in her bed and she passed away quietly in her sleep.
    May God bless her soul and may she forever rest in peace.

    I wish all of you the best of luck: don’t ever give up hope!

    SP

    #37691
    gavin
    Moderator

    Hi Xepalomero,

    Thanks for the update on your gran. And congratulations on your wife’s pregnancy, a very nice shock indeed!! I wish you and your wife every success with this.

    Sorry to hear that the meeting did not go well with your gran’s GI and that her onc was not at the meeting. Hopefully you will get some better news from having another opinion from another onc, who I also hope has a better attitude with regards to dealing with patients and their families.

    Keep us up to date and let us know how you get on.

    My best wishes to you and all your family,

    Gavin

    #37690
    xepalomero
    Spectator

    I was on a complete emotional rollercoaster this week….Even if I forget all the stress at work I’m having, only because my (so much desired) summer holiday’s speedily approaching (and my patients are dying to get all of their teeth fixed / their dentures/ bridges etc completed before that moment comes :):) )…I can only say this week was pretty shocking for me…
    The first shock was a positive one…it was on tuesday when my wife found out she was pregnant (for 6 weeks by now…. and after years of trying)…with our first child!!! :) And this new family-member-to-be would be my grandma’s first grand-grandchild, can you imagine!? So, inevitably,I have another mission now: to help my grandma fight Klatskin Tm long enough to see this dream of ours come true!
    So I took the second shock much harder….My mom had an appointment with my grandma’s hospital gastroenterologist (the oncologist was, needless to say, unable to be present during the appointment due to her other (probably much more important !?) engagements) who checked her latest (very good) blood test results and was informed about my grandma’s improvement during the last week, but told my mom that there’s almost no use in any kind of therapy in my grandma’s case, and offered her only a possibility of (palliative!!!) low dose 5-FU chemotherapy that has to be administred intravenously (the insurance here doesn’t cover the costs of Xeloda pills that are equally effective, but when my mom said it’s really no problem for us to give the extra sum of 600$ for the whole chemo cycle, he still refused to prescribe her with Xeloda saying that there’s simply no use…., can you believe? I know I couldn’t! We just can’t have my 85 yo grandma drive 3 hours to the hospital and back on a daily basis for weeks ….it looks to me as if they really don’t care at all what happens to her…and it’s sad to say but—if she dies it’s only one problem less for them(not to mention less insurance money)- they’re thinking.. the old lady’s 85 so, well, no wonder if someone this age dies, yes? I really wasn’t looking at things this way… but now I’m quite sure this is the way the things go!
    But they’re wrong if they think we’ll just leave the things as they are…I’m looking for an other oncologist who would check all of her tests (X-rays, CT and MR scans, blood tests) again and suggest an adequate treatment.
    I mean, I’m aware of her age, but she looks and feels younger, her tumor’s not even visible on ct scan,there are no mets…this is simply not the case that could be treated only with palliative chemo, we’re not going to allow this to happen! … That is, we’ll see what the other oncologist will say…
    Still, from tomorrow on she starts taking Megostat (megestrol acetate) and I’m confident it will help her with her appetite loss….perhaps even to gain some additional weight, we’ll see…
    I’ll keep you updated

    #37689
    lalupes
    Spectator

    I’m very pleased to hear of your grandmother’s improvement!! Good Luck with next week’s appointment. :D

    #37688
    xepalomero
    Spectator

    Dear Julia, I’m fine, thank you very much for asking! My grandma’s blood test results came yesterday and they’re perfect! We really didn’t expect her liver enzymes to come back to their normal level (nor did her gastroenterologist, at least he said so when she was leaving the hospital 4 weeks ago) and that’s exactly what happened! So, before, her liver enzyme values ranged from,I’don’t know, 500 to 700 and now they’re back to 20-50 (within the normal limits), it’s amazing! I didn’t expect this to happen mainly because she has her stents (2) both placed into her right hepatic duct, so I tought since there’s no bile flow from the left one…it had to accumulate in the liver, which would keep the enzymes permanently high, but…that’s obviously not the case! Her bilirubin’s back to 24, so I think she now has all the necessary prerequisites for the beginning of her chemotherapy! Well, at least I hope so! Her tamperature’s back to normal too, so that’s fine as well! Though, despite my wishes for her to start taking megestrol acetate for her loss of appetite/ weight loss, she’s still not taking it (she… and my mom are convinced they should first check with my grandma’s hospital oncologist whether she should be taking it or not, so I gave up insisting she should, hm….She’ll have the appointment next week, so we’ll see.

    And, DianneH… thank you so very much for all the useful information on stents / blood clots, I really appreciate it. I do hope both you and your dad are doing well and I wish you both the very best of luck…

    #37687
    lalupes
    Spectator

    I hope your grandmother’s health is continuing to improve, Xepalomero. How are you today?

    Julia

    #37686
    gavin
    Moderator

    Hi Xepalomero,

    Glad to hear that your grandmother has put on 2 pounds and that the Prosure drinks/meals seem to be working for her. Here’s hoping to see some more weight gain for your grandmother!

    Best wishes,

    Gavin

    #37685
    dianneh
    Spectator

    Hi xepalomero,

    I’m so glad that you found CCF. Everyone here and the information that is available will help you immensely.

    Plastic stents can dislodge them selves due to general movement, bending, tumour growth etc. and usually are a temporary measure until surgery is decided on. However, once surgery has been ruled out, a more permanent metal stent can be inserted.

    Metal stents are said to last 8-12 months (many last much, much longer), are much bigger in diameter and longer than plastic, and they are impenetrable. However, they can still block up due to tumour growth at the ends and build up of bile slug can also happen. Should it block up, generally another metal stent can be inserted inside the other one.

    My 81yr. Dad was diagnose with CC at the end of January 2010, he has had two plastic stents put in since then, is not a candidate for surgery due to his age and other medical factors, and has had the metal stent put in 5 weeks ago. He just started anti-blood clotting shots Tinzaparin and will have his first round of chemo this week. In case you didn’t know Cancer’s have been know to cause blood clots, my Dad had a PE in August of last year, making it one of the first symptoms.

    My Dad’s appetite is not so great either, even the things he loved are a big turn off to him now… the liver is in distress and I think if the tumour responds to chemo or radiation their appetites will get better.

    There are lots of ups and downs with this cancer, however CCF has made it all much more bearable.

    All the best to you and you grandmother.

    #37684
    xepalomero
    Spectator

    Thank you Gavin for replying,
    you all have been such a great help to me during the past couple of days, I simply can’t thank you enough. My grandma’s already taking Abbott’s Prosure drinks/meals and they seem to be doing the trick (she gained 2 pounds – hip hip hooray! :) ). I’ll keep you updated,
    God bless

    #37683
    gavin
    Moderator

    Hi Xepalomero,

    Thanks for the update on your grandmother and I hope the antibiotics do the job and that her temperature starts to drop soon. Lainy’s suggestions of soup and eating small meals more often is a good one and this is something that my dad did. He also took the drink Ensure for a while when he needed to put on some weight and maybe that is something that you could use with your grandmother.

    Best wishes,

    Gavin

    #37682
    lainy
    Spectator

    You have to give the antibiotic a couple of days to work, as you know. These are tough infections. How about just some soup? Try giving her small amounts of food more often. Most everyone who gets these infections go in to the no eat mode. As I stated in the previous post (other page) our Nutrition posts may ahve some great information for you. Good luck.

    #37681
    xepalomero
    Spectator

    I insisted that she gets some kind of antibiotic, so she did – and she started taking it yesterday (until now she only took 2 pills – one has to be taken every 12 hours). Yet, she doesn’t seem to be getting much better, the temperature’s still high.. But she’s only having mild epigastric pain (no need for painkillers) and there are still no signs of that yellowish colour she had before. What frightens me the most is that this condition is getting her weaker and weaker and she refuses to eat…
    My mom is still convinced that she only caught some cold the other day when she was at the hairdresser’s… We decided to wait and see until tomorrow…we have to give the antibiotics some time to start working…

    #37680
    xepalomero
    Spectator

    Dear Lainy,…thank you very much for replying! I live and work about 200 miles away from my parents / my grandmother. So my parents (as well as my aunt and oncle) are the the actual caregivers for my grandma, but I do try to help as much as I can. Because of my work it’s impossible for me to stay with them during working week but since she was diagnosed I (and sometimes my wife) started spending weekends with them helping both my grandma and my parents to adjust to this new situation. I’m trying to get all the necessary information I think they may need, I’m buying dietary supplements for her, collecting info on possible treatment etc… I also contacted her gastroenterologist / oncologist on a daily basis to ask about her condition/diagnostic procedures/treatment/ when she was in the hospital. I’m so sorry I can’t be there for her all the time, but I’m trying do all that I can to help her.
    Now I think I’m just not dealing with this the best way I could…..
    Can you imagine.. the Dr that was on call in the Emergency center just said to my parents they should give her some antipyretics to get the fever down , no antibiotics??? What are they doing? (ok perhaps because she’s not feeling any pain / chills…)
    I hope she’ll be fine by tomorrow
    Thank you for your help, it means very much to me

Viewing 15 posts - 1 through 15 (of 29 total)
  • The forum ‘General Discussion’ is closed to new topics and replies.