Anyone in their 40s or younger?

FormerMember
FormerMember
  • 18 replies
  • 6 subscribers
  • 35927 views

Hello everyone, I'm here because my little sister has been diagnosed with gallbladder cancer, advanced and spread to the liver. She is only 42, and like me, has very young children. She is a beautiful, funny, clever and wonderful person, and I would move heaven and earth to help bring her some brightness right now.

I am hoping that we can find some mutual support and friendship in others going through the same experience, which is why I am here. At such a young age she is feeling quite alone, and not always understood. I'm hoping that we can perhaps change that, and maybe even help others too.


Hoping to hear...

x

  • Good morning pbelle, 

    I’m kind of sad to read your post about your little sister. I know all too well how overwhelming and devastating the diagnosis of gallbladder cancer is. 


    I was diagnosed in 2016 with Stage 3 GBC, aged 46 after a routine operation to remove my gallbladder due to gallstones. I had a liver resection 5 weeks after the initial operation and a second rumour was found growing into the fatty tissue of my liver. They removed the gallbladder bed, a lot of my bile duct and surrounding lymph nodes.  It was a pretty hard slog I won’t lie and it took some time to recover from that operation. I then had 6 months of chemotherapy, this was purely to make sure no cells survived and I’m now currently 2 yrs free of gallbladder cancer. 


    It’s a lonely cancer to be diagnosed with as most people are in their 70’s and the information out there (and statistics) are grim reading, but please remember they are based on that age group. So my advice would be to ignore the statistics and take one day at a time. I found writing a blog helped me to cope, vent and to actually laugh at the highs and lows of life with a rare cancer. 


    I’m actually just recovering from thyroid cancer too!! Yes I’m greedy, I had 2 rare cancers that were totally unconnected within 20 months of each other . 


    If you want to have a look at my blog or want to chat some more just yell xx


    https://gallbladdercancerblog.wordpress.com/


  • FormerMember
    FormerMember in reply to Smiffy_69

    Hi

    I was 46 when diagnosed and also had tumour in my liver 35% resection and 6 months of chemo. 


    Be positive it will be 5 years since I was diagnosed on 22/3/ and I’m celebrating with getting married in 24/3


    I felt very alone and didn’t find s survivor u til I found Colette. 


    We can survive don’t rely on statistics they are aim at the older person with gallbladder cancer. 


    Hope your sister joins the survivor team which I’m sure she will 


    Love to you all 

  • FormerMember
    FormerMember in reply to Smiffy_69

    Hello! Thank you for your lovely reply, I shared it with my sister today and she asked me to let you know that she's going to get in touch as soon as she's at her computer tomorrow/Friday (they've gone for a pre-chemo short break with the children as her treatment starts in a few days).

    We are both so happy to hear from you :)

    Kate xx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Becky, 

    I just replied to Colette also, apologies if I'm duplicating! I shared your message with my sister today and she wants me to let you know that she's going to get in touch as soon as she's at her computer tomorrow/Friday (they've gone for a pre-chemo short break with the children as her treatment starts in a few days).

    We are both so happy to hear from you :)

    Kate xx

  • Hi Kate,

    No problem at all and what a great idea for a pre chemo break. If there’s anything I can do (information wise) just shout. I had Gemcitabine and Cisplatin intravenously on a 3 week cycle for 6 months, so I’d have it one week then again the next week then a week free then start all over again if that’s the same chemotherapy your sister is having then I’m happy to share my experience of it all xx


    Colette

  • FormerMember
    FormerMember in reply to Smiffy_69

    Hi Colette, thanks again. She is also having Gemcitabine and Cisplatin, although we don't yet know the cycle/any more details. Due to see the oncologist again on Tuesday, then chemo starts Thursday... How did you feel during/after your first couple of treatments? I'm sure that she will have many questions to ask, if you don't mind sharing your experience. 

    thanks again, it is wonderful to be in touch

    Kate 

    xx

  • FormerMember
    FormerMember in reply to Smiffy_69

    Hi Kate

    You and your sister are more than welcome to any information advice I can offer to your both xx

  • FormerMember
    FormerMember in reply to FormerMember

    Thanks Becky, that's so kind.

    She's starting Gemcitabine and Cisplatin on Thursday next week. Mainly wondering how she is likely to feel in the first couple of weeks. Also, how quickly does the hair loss kick in.

    I would welcome any advice on helping cope during and after chemo. She has a super loving family, but we don't know what to do to help best  x

  • FormerMember
    FormerMember in reply to FormerMember

    Kate

    My chemo was a different type, I had tablets that I took everyday for 14 days and a 7 day break , or I could of had s bag of chemo to carry all the time. I took the pills which were a pain on how and when but worked for me. It gets worse the more rounds you have , it builds up in you. I was really sick round 5 onwards. I would tell her any symptoms talk to the oncologist, she will end up on medication for side effects too. 

    My advice is to watch breathlessness. I ended up with a large clot in my lungs due to gallbladder cancer and the chemo changing the make up of my blood. 


    Those little calls of how are you feeling? Take her out and about when she feels up to it. She’ll find her good weeks. Mine wasn’t the week I was not on chemo but the first week on it. So I made arrangements for that week. 


    Are you in the UK 


    Read Colette’s blogs they are fantastic xx 

  • Hi Kate, 

    So you have your bloods done the day before or very early on the day of infusion, then they hook you up to the machine. They give you anti sickness steroids beforehand then start with saline first to flush the vein. Then I had the gemcitabine first then a saline flush followed by the cisplatin. 

    Everyone is different, but I felt fine the first time but the 2nd infusion a week later I felt quite nauseous a couple of hours later. They do give you antisickness tablets to take home and my suggestion is to take them even when you feel ok as I felt the nausea was rubbish, I was never actually sick just had the feeling all the time. I don’t want to list every symptom or side effect as I’m confident your sister will get a full list of side effects from her oncology team,  but one thing I found difficult to deal with was the hair loss, ok I didn’t go bald and I have very thick Irish hair ha ha.. but I lost a lot of it (and it got everywhere). 


    If you have a look at my blog it does probably tell you the ups and downs of chemo (haven’t read it for a while). If there’s anything specific you want to know you can send me a private message on messenger Colette Swindells xx