Discussion Board Forums General Discussion 4 year scan not too good. Please help

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  • #85397

    Hi Angela

    I discovered I had cc in November 2011. I was told I had two months.. I was then living in France. They, rather reluctantly, gave me a resection which took 10 hours. I got through that then had serious complications due to a leaking bile duct. I got through that and then had radiation and a course of Xeloda, finishing treatment in May 2012. In July 2013 a scan revealed cc had returned in lymph nodes close to my aorta. Six months of harsh gemcitabine and cisplatin followed with good shrinkage results. I have 5 tumours.

    My advice for anyone going through this treatment is sleep whenever you want, stay positive, laugh every day and eat well … I avoided red meat, dairy to a minimum, very limited sugar, but everything else in moderation. I firmly believe in sleep, no stress, fun and laughter..

    I am now investigating nanoknife (prof Leen at The Princess Grace in London is a great starting point … he’s very honest and approachable.

    Live life to full darling.
    Sandie
    x

    You must not give up your fight, research everything you can and contact anyone who may offer you help, but keep perspective, use your sixth instinct to guide you.

    #85396
    dukenukem
    Member

    Hadn’t heard about the 20%, but was told that when I flew (or even rode in a car) I had to get up at least every two hours (or less) and walk around to lower risk of blood clot.

    Duke

    #85395
    angelmar
    Participant

    Thank you all and dear Gavin….I def hope to be at the next meeting and also hope to help man the AMMf stand along with Juan.
    I went to my oncologist meeting today with 18 questions. The registrar who initially saw me, instead of my oncologist, decided after my 3rd question to go and get my constultant as the questions were out of her depth. Conslutant so helpful and patient and went through everything with me. They hadn’t heard of Foundation One but were interested in it. Being referred to see if Cyberknife might be appropriate but told me it would have to be privatelly paid for. Only one in UK is in London bought for the NHS but until it has been paid for with private patients the NHS cannot use it. Seems that the problem with my growth is that it is in the portal vein area where original op was tied up. Glasgow funds patients to go to Glasgow Homeopathic hospital direct referral from GPs. as does Aberdeen. All other patients in Scotland need to find a supportive GP to secure an exceptional referral which is then considred by the Local Authority. Consultant feels homeopathic treatment would not be contraindicative to chemo. Signed up for chemo to start in 2 – 3 weeks. Daughter will come over here….advised that each hour of flying increases risk of blood clot by 20% and if you have cancer or chemo then that is likely. Sorry if this is garbled but want to thank you allxxxxx

    #85394
    gavin
    Moderator

    Hi Angela,

    Just a quickie to say re Maggies here in the UK, so AGREEE with that!!! They do excellent work and for our UK members, go have a look and see what they can do to help with everything.

    https://www.maggiescentres.org/

    Hope that you will get the funding for your therapy Angela. If NHS is funding it for Aberdeen and Glasgow then Lothian should do so as well even if you to have to go to Glasgow to have it. Looking forward to catching up with you and Juan again in Glasgow on the 23rd of Jan hopefully at the next meeting of SHBPN.

    Hugs,

    Gavin

    #85393
    angelmar
    Participant

    Thank you to all. Today found out about applying for mistletoe therapy. Not sure if I can get it but NHS is funding it for patients in Aberdeen and Glasgow. Some Lothian patients are getting funded too to go to Glasgow. Using ph sticks to test urine/saliva ph to try and keep as alkaline as possible. Maggie’s Centre staff so helpful too so anyone in UK who lives near one please don’t be aftraid to step over the door of a centre. xx

    #85392
    lainy
    Participant

    Hi Angela, sometimes people just are not sure how to answer. I am wondering what made them feel this ’tissue’ is cancer? My husband had golf ball size growths but they were hernias from his surgery. Not sure I would do anything without getting another opinion. All the home remedies have never been proven to cure but if they make you feel better go for it. Please ask your ONC first if you can be taking these things as you never know what interferes with your treatment. Good luck on Wednesday and we are hoping for some good news.

    #85391
    darla
    Participant

    Hi Angela,

    I can’t really ad much more than what has already been suggested, but understand that even just responding is supportive at a time like this. Please don’t ever think that people don’t care or are distancing themselves as I don’t believe that is the case with anyone on this site. We all care and will do what we can to help and support you in any way that we can. We have all dealt with this disease either as a patient, caregiver, family or friend and know what you are going through. I’m hoping you can get answers to some of your concerns on Wednesday. Please let us know how you are doing. We truly do care.

    Love & Hugs,
    Darla

    #85390
    angelmar
    Participant

    Thank you so much. I have viewed posts over 4 years many times but not been able to reply so understand unregistered ‘seekers of hope’. Gavin – thank you for the email and I’m sorry things are so hectic for you at the moment. Marion, Porter and Duke – thank you for your comments. Just saying you want to respond but not sure how is incredibly supportive. I guess I was worried notbody wanted to contact me which reflects experiences I’ve had 4 years ago from ‘friends’. who distanced themselves from me on diagnosis. I must say angels on earth replaced those ones though.
    Daughter recommending bicarbonate of soda/organic lemons (100% more effecitive than inorganic ones). Had been told oranges not good as encourages cancer regrowth. Continuing with watercress juice and green tea all of which I’m sure has helped me over the past 4 years. Feeling it’s important to show love to my body and love to this mass. it’s part of me……..but also telling it that it can go away.
    On this site, we know exactly how others are feeling at different times. We don’t have to explain and that’s so vital when energy is short.
    xxto all

    #85389
    dukenukem
    Member

    I think the majority of people here have not had resections so we don’t really have anything to say. But in the big picture, your question of when to get chemo, I’d start as soon as possible while you are healthiest. Reactions differ, but no one shines after chemo, it’s just that some are not as bad as others. There is always the option of cutting back.

    Would orange juice and/or grapefruit juice help with your alkalization?

    Duke

    #85388
    pfox2100
    Member

    Hi Angelmar, I wanted to respond too I am just not quite sure what to say or what to offer. I too had quite the extended resection in January of this year. My scans have been good so far, but they are starting to see 2 small lesions that have been on the last 2 -3 reports around my incision area that they are referring to as scar tissue and nothing that is worrisome. So my question is the same as Marions, as far as do they think this is worrisome tissue that they are looking at? It sounds like you will be asking more questions on Wed. Could it be scar tissue from the resection? I don’t know much about this and whether scar tissue grows overtime or not (a question I will need to ask my surgeon and onc) :) So sorry I don’t have more to offer. I wish you well and hope you get some answers you are looking for, then onward to head towards the direction you feel you need to go :) Blessings to you.
    Porter

    #85387
    gavin
    Moderator

    Angela,

    I have just replied to your email, things are hectic here at my end. Marion is right about what she says re thing getting quiet here at the weekend and also about viewings from unregistered people. We have tons of lurkers who read the site but have not joined and so can’t post anything.

    Keep coming back Angela and stay in touch as well. You know you can email me anytime at all.

    My best to you and Juan,

    Gavin

    #85386
    marions
    Moderator

    angelmar……it always helps to be descriptive, but I think that the questions are tough to answer because; much depends on the confirmation that the area described in fact is cancerous.

    Weekends are bit slow as is. And, please remember that many people perusing our website are not registered members and therefore are not able to comment on this site.

    A few things I am able to comment on:
    The question of fast vs. slow growing tumor has been discussed previously. This link might be of help to you:
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=12618

    I hope for others to chime in real soon and answer some of the other questions posed by you.
    If not, then dear angelmar, revive this posting, daily. This helps to bring it back to the attention of our viewers.

    Hugs,
    Marion

    #85385
    angelmar
    Participant

    That will now be one of my questions on Wednesday. I’ve noted 57 views and only 1 reply….am I being to vague for anybody else to respond/xx

    #85384
    marions
    Moderator

    angelMar……is it assumed or better validated for the suspicious area to be cancerous?
    Hugs,
    Marion

    #10728
    angelmar
    Participant

    Hi there, Over the past 4 years I have found such help and support from reading posts though fatigue has not allowed me to post too much. I need help now as I’m a bit lost. After the extended liver resection in August 2010 , age 55, which pathology showed was extremely aggressive and invasive, Stage T3B and positive macrascopic margins I was given Xeloda in the Bilcap trial. Last week my 4 year scan has showed tissue the size of a golf ball in area where the ‘operation was tied up’. The consultant says it is inoperable but I may be given the chance of gemo/cisplatin if my bloods stay within the peramters of normal (which they were in September and October prior to the scan. I will be seeing the consultant again next Wed and want to build up a list of questions. Something I hold on to is that my stomach, spleen, pancreas,kidneys are clear. There is no spreading. But how fast does this type of cancer spread and multiply. If I go for chemo should it be now, when bloods are ok? or in Jan after spending time with my daughter? Should I try mistletoe therapy/oxygen therapy. What is the Foundation One/ Dr Chapman? I’m just so lost and don’t have the energy to find my way through this maze. I’m in touch with AMMF and Gavin whose posts are incredibly helpful. Meanwhile, continuing lemon juice and starting bicarbonate of soda to continue to alkalize body, increasing green tea and watercress juicing. This is a post of hope for newbies becuase 4 years ago I was given 2 weeks to live before the chance of the op and subsequent chemo. Although not posting am sending loving thoughts to all in the cc family.x

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