My Mum x

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  • October 14, 2015 at 6:04 pm #87243
    catherine88
    Spectator

    Hi Gavin,

    I hope you are well. I have not been on for a while as the last few months have been pretty tough.
    It has been 10 months since my mum’s operation and 2 months since she has finished her chemo. She coped pretty well during chemotherapy, the tiredeness and lack of energy probably being the worst. The last couple of weeks have probably been the worst as I think my mum is depressed. Her shoulders, arms and hips are really sore every day and any twinge from her stomach terrifies her. I think she is petrified the cancer has returned. She is due for a scan in November but my dad told me she is not going to have it as she is petrified and would rather not know.
    I don’t know what to do as I am praying this is not the case and if so the reassurance everything is OK will help her move on and enjoy life more. Do you know if her aches and pains are common after chemptherapy.

    Thanks
    Catherine x

    March 13, 2015 at 7:50 pm #87242
    gavin
    Moderator

    Thanks for that Catherine. I hope all goes well for your mum when she goes to the Beatson and please let us know how it all goes and what they say etc. Remember that you are not alone in this now, you have all of us in your corner with you and your mum!

    My best to you and your mum,

    Gavin

    March 13, 2015 at 7:05 pm #87241
    catherine88
    Spectator

    Dr Mole performed her surgery.

    All this information is fantastic and I cannot thank you enough.
    I will hopefully find out more next week when we go to Glasgow.

    Take care and best wishes to you

    Catherine x

    March 13, 2015 at 6:36 pm #87240
    gavin
    Moderator

    Hi Catherine,

    From what I know about ERI and all of the reports that I have heard from it I can tell you that your mum was in very good hands with the surgical team there. Was it Steve Wigmore that was responsible for your mums surgery? I heard him speak at a conference here in Dundee and he is very experienced with all things CC.

    There are other options re the chemo and should it be the case when the gem cis is done then it may be a good idea to seek another opinion from Prof Juan Valle. He works out of the Christie in Manchester and has a ton of experience treating CC patients. He has treated a few of our members here and that is something we can look at later if your mum wants to. Let me know if I can help with this should your mum want this. Prof Valle is also the vice chair of our medical advisory board here at the CCF.

    http://cholangiocarcinoma.org/juan-valle/

    http://www.christie.nhs.uk/about-the-christie/whos-who/our-consultants/juan-valle.aspx

    My best wishes to you and your mum,

    Gavin

    March 13, 2015 at 6:25 pm #87239
    catherine88
    Spectator

    Thanks Melinda x x x

    March 13, 2015 at 6:20 pm #87238
    catherine88
    Spectator

    HI Everyone
    (Gavin)

    God bless you all fighting this terrible disease and thank you again for all your support.

    We are from Dunblane, Scotland. My mum had her Whipple procedure at Edinburgh Royal Infirmary and goes to the Beatsons in Glasgow for her chemotherapy next Thursday. It is 6 cycles of gem/cisplastin with two weeks on one week off.

    Then apparantly that’s it…………..but I am def going to question her oncologist and look into other opinions. x

    March 12, 2015 at 6:44 pm #87237
    gavin
    Moderator

    Ooop’s. Forgot to post this link. Have you heard of AMMF? It is solely UK based and you will find tons of info there re specialist treatment centres, specialists etc in the UK. Here is the link –

    http://www.ammf.org.uk/cholangiocarcinoma/specialists/

    Gavin

    March 12, 2015 at 6:43 pm #87236
    gavin
    Moderator

    Hi Catherine,

    Welcome to the site. Sorry that you had to find us all here and I am sorry to hear about your mum, but glad that you have joined us all as you have come to the best place for support and help and you will get loads of each from all of us. Thanks as well for sharing what has been going on with your mum.

    I too am from the UK, in Dundee and my dad was dagnosed and treated here in 2008. Can I ask where in the UK your mum had her treatment and diagnosis and where she will be getting her chemo? Have you thought about seeking a second opinion re chemo as well?

    And yes, your mum is most certainly not a statistic at all! Please do not give up hope. I know that your head will be spinning right now with everything that has and is going on with your mum, that is common. But please know that you are not alone in this now, we are here for you and we care. Keep coming back and let us know how everything goes.

    My best wishes to you and your mum,

    Gavin

    March 12, 2015 at 4:15 pm #87235
    mbachini
    Moderator

    Dear Catherine,
    I also would like to welcome you to this site. I am sorry to hear of your mother’s diagnosis but would also like to add that we are definitely not statistics and there is always HOPE for tomorrow!

    I have been fighting intrahepatic Cholangiocarcinoma for over 5 years, was diagnosed at age 41. I have 6 children ranging in age from 26 to 13, and I know how hard and scary it was for them in the beginning. They were and are a huge support to me, as it sounds like you are to your mother.

    I will be thinking of you and your mom, and adding you to my prayers. Continue to ask questions, and seek 2nd opinions, especially for follow up on scans after chemo. Please keep us updated and don’t hesitate to come here for support or questions….there is a wealth of information available here for you.

    Hugs and prayers,
    Melinda

    March 12, 2015 at 3:33 pm #87234
    catherine88
    Spectator

    Thank You again

    Means a lot.

    x x

    March 11, 2015 at 11:16 pm #87233
    middlesister1
    Moderator

    Hello again.

    So I was wrong on the reason for the 88, but still pretty close in age. I know you are probably overwhelmed with information, but I though a recent thread on first day of chemo may be helpful if you hadn’t seen it yet. Your mum is still recovering from surgery so please know that you can speak up to have them adjust treatments or meds if she has any discomfort.

    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13069

    Wishing you the best,
    Catherine

    March 11, 2015 at 8:35 pm #87232
    catherine88
    Spectator

    I am so pleased to hear your mum is doing well and you have a holiday planned.
    We have also discussed having a family holiday later on in the year (after mum’s chemo) when she is feeling well. I have an 12 year old younger sister too ( I am 29) so will be good to have some quality time together.
    You have a great attitude and you have lifted me up tonight.
    Thank you so much

    I’ll keep in touch and keep you up to date.
    I hope you all have a lovely time in April
    Thanks again x x

    March 11, 2015 at 8:10 pm #87231
    middlesister1
    Moderator

    Dear Catherine,

    Welcome. I saw the “88” and right away thought of my daughter who was born in 1988. My mother was diagnosed in Oct. 2013, so she has been adjusting to her beloved grandma having this disease. I am truly sorry that you are facing this, and especially while your mother is young.

    Unlike your mum, my mother was not able to have surgery. After opening her up, they saw the tumor was in a place that made it inoperable. So, it is very true that they can not see all until they are in there. We were given a very grim prognosis (about a year), but at 18 months, Mom is feeling great and we’ll be going on a vacation in April. The statistics do not tell how everyone will do. They are also behind in that they are looking at people who were diagnosed years back. What I learned is to appreciate each day with my parents, but not because they won’t be around long, but because I love them so much.

    That your mum had surgery is so encouraging. I do agree with Lainy that most seem to have scans every 3 months. I would question that, and also would suggest getting a second opinion at a hospital that is very familiar with CC.

    We care and please let us know how you and your mum are,
    Catherine

    March 11, 2015 at 7:23 pm #87230
    catherine88
    Spectator

    Dear Lainy

    Thank you so much for your reply and the links you sent me.
    I have read on here re people’s scans every few months etc so I did find it strange that after my mum’s chemo there will be no follow up. I will look into this more.
    I just called home and my mum has her appointment through for next Thursday to start her first cycle of chemotherapy. You are right re time limit, the surgeon mentioned national statistics and I need to remind myself my mum is not a statistic. Everybody is different and treatments are changing every day.
    Thank you again for welcoming me today, appreciate your time :) x x

    March 11, 2015 at 7:03 pm #87229
    lainy
    Spectator

    Dear Catherine88, welcome to our CC family but sorry you had to find us. I know what you are feeling as my husband had a Whipple 9 years ago. The ONCs never gave him a time limit though and at the time it was not procedure to follow up with chemo. It did buy him 5 years. With that said we do not like to put time limits on anyone as we were not born with expiration dates. You also have the choice now to get 2nd and 3rd opinions which we highly recommend. Different ONCs may see things differently. It is true that they just never know what they are going to find until they actually get in there. Try to take each day at a time and I would strongly suggest another opinion if only to put your minds to rest that the best is being done for Mum. I am posting some sites you may find interesting. Please keep us updated on Mum as we truly care. BTW follow up for Teddy was Scans every 3 months.

    Newly diagnosed:
    http://cholangiocarcinoma.org/the-disease/newly-diagnosed/
    Free complimentary Book or e-mail download:
    http://cholangiocarcinoma.org/news/foundation-resources/
    Biliary drainage – stent information card
    http://cholangiocarcinoma.org/biliary-emergency-information-card/
    Register for a CURE
    The International Cholangiocarcinoma Registry
    http://cholangiocarcinoma.org/professionals/research/patient-registry/

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