Love4life

Forum Replies Created

Viewing 9 posts - 1 through 9 (of 9 total)
  • Author
    Posts
  • in reply to: Chemotherapy What can we expect? #96792
    Love4life
    Participant

    I have intraheptic cc, sugery is not avaliable I  have been receiving cis/gem, this is a 6hour regime, 2hrs for fluids prior to chemo and 2 hours for fuilds after chemo every now and then i need a blood transfusion (so sometimes treatment is between 6-8hours long). I am now up to my fourth cycle now a CT scan has been arranged for next Wednesday (chemo tomorrow) what can i hope for? the turmor not growing, has stopped growing?? Stop treatment, change treatment, continue treatment until nerd damage, great information in this thread helps me to see what could be the next plan.  Always hopefull.

    in reply to: Replace of Stent #96662
    Love4life
    Participant

    Hi Mary, thank you for your response my chemo is cisplatin and gemcitabine, the process is 6hours long as i always have sodium potassium give before and after (2hours each side) in between the Chemo, had my second chemo Wednesday gone  i get to have a week off than back to 2 weeks consequetive than a week off, after the 9th treatment a CT scan will be given to see the results hopefully the chemo is working if not my only option  is radiation.  The effects having been too bad ive been writing down my temps, eats, meds, mouth washes etc etc i can feel a little lock jaw coming on, fatigue will settle in soon in a couple of days so when i have energy I get out there.  The stent is ok im not taking any pain killers and was told by a nurse to clean the stent drink some coke, it works cos it makes me burp every 4 days i do this.  In NZ there is only one dietian so im waiting on them to make contact with me to see what how I should be eating.   My apetite is too good…. eating eating eating.  but i ate something last night and had pain in the chest this morning hopefully it was the stent and not my liver.  My tumor in the liver has grown 22milimeters since being diagnose oncologist said that not fast growing?!!??? Ok il take that.  The think about Chemo is im now down to 53kg and it seems this chemo doesnt let me put on weight so hopefully with the week off I can.  Sorry about the spelling mistakes too.  I will go into the forums to see if others have problems with weight lost.  Thanks Aroha

    in reply to: MY CC is inoperable and incurable #96297
    Love4life
    Participant

    Thank you positivity i have learnt alot from this forum so much wonderful information that we dont get from our oncologist/experts, my oncologist said nothing would work for me but I have to try and see if it does or if it doesnt.  I made alot of decisions outside this forum and now with these forums my decisions have change and i am happy with this.  Without this forum i think i would be f*ck!d.

    in reply to: Palliative Care in Oncology Symposium/Pain management #96281
    Love4life
    Participant

    Thank you this is good info i have a regular dull pain in my spine alot so i will start pain management now and keep it going.  Regards Aroha

    Love4life
    Participant

    I hate that I cant exercise to the full extreme as much as i use to, I have tried but only get severe fevers.
    I hate that I cant eat what I want, and have to take supplements, other meds, have pains and don’t know what they relate to (ie eating more than I sure, Liver no functioning causing pain etc etc).
    I hate that I feel tied a lot.
    I hate that I have to have a lot of bloods taken.
    I hate that I have my CC is inoperable and incurable.
    I hate that my 16yo daughter is looking after me, doing my juicing, cooking, driving for me – I not incapable its just fatigue settles in.
    I hate that i cant work any longer.
    I hate that I get looked at as dead women walker
    I hate that I have to go to hospital if someone is wrong with me
    I hate that other people have this disease.
    I hate that so much more can go wrong with CC, ie stents can cause pancreatitis, conventional treatment can cause MDT
    I hate that there is much information on google to read and try and understand.
    I am thank you though that there is a CC Foundation where we can all communication to help us understand issues.

    in reply to: Jaundice #96269
    Love4life
    Participant

    hello i have been prescribed “ciprofloxacin” to keep my stent clean this is my second day using these?  Just wanted you to know.   Cheers.

    in reply to: MY CC is inoperable and incurable #96266
    Love4life
    Participant

    hi ive also read comments where some people get MDS due to chemo how often or rare is this, this sort of scares me alot?

    in reply to: MY CC is inoperable and incurable #96255
    Love4life
    Participant

    Thank you for your replies.  I live in New Zealand, the chemo treatment offered to me is “cisplatin and gemcitabine”  there may be some radiation treatment but that depends on my condition.  Im now in two minds about doing chemo after reading your replies.  Been googling too much and can see some cancers can be cured without using conventional treatment.

    in reply to: Introduction / Welcome #96254
    Love4life
    Participant

    Hello All

    My name is Aroha Rota I am 47yo women from New Zealand I have been diagnosed with incurable and inoperable CC.  I have three children 18yo boy, 16yo girl and 13yo girl, I also have a grandchild 2yo.  My journey so far since knowing has been eating organic and vegetarian only.  I was hoping to “extend” my life expectancy by not having chemo treatment rather going naturally but I am unsure if this cancer has survivors using this path.

    I am so happy there is a CC foundation to help me with understanding this cancer further and forums of discussions.

    Thank you
    Aroha

     

Viewing 9 posts - 1 through 9 (of 9 total)
©2019 - All Rights Reserved, Cholangiocarcinoma Foundation