Looking for advice

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This topic contains 23 replies, has 8 voices, and was last updated by  Julie_ammf 2 weeks, 2 days ago.

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  • #9377

    courty
    Participant

    Looking for some advice if anyone can help. My mum was diagnosed in Feb this year and has just finished Chemo (unfortunately unable to have surgery but it has shrunk a bit which is great was originally 3cm now is 2.5cm) but she is really struggling with nausea. She has tried a few medications to ease it but they are not really working, she has also tried peppermint and a few other things. But I wondered if anyone else has felt like that and has any ideas for her? She has been chemo free now for 1 month and they dont think she should still be feeling like this so the tumour might be pressing on something which is making her feel sick but its really getting her down and she us unable to eat because of it. Any advice would be great. Thanks- stay positive x

    #9378

    Tom
    Moderator

    Dear Courty

    Sorry to hear that your Mum is struggling with nausea after her chemotherapy. Chemotherapy can make people feel very sick, but this should wear off once the chemo is finished. If this is not diminishing, then she should really get medical advice. Does she have a CNS (clinical nurse specialist) she can contact to ask what she should do?

    In the meantime, Penny Brohn UK is very helpful with hints and tips on managing chemo side effects and much else besides (they are the UK leaders in holistic care) – they’re on AMMF’s Helpful Links page, but this will take you directly to them:

    http://www.pennybrohn.org.uk/

    I hope others may come in here to let you have their experiences and what they have found helpful.

    If there is anything else you think we can help with, please ask.

    Best wishes

    Tom

    Please be aware that all information shared by AMMF on its website, or by its Moderators in the Discussion Forum is for guidance only. It is not a substitute for professional medical advice and care by a qualified doctor or other health care professional. Always check with your doctor if you have any concerns about your condition or treatment.

    #9380

    sprouty
    Participant

    Dear Courty…….nausea also affected my wife throughout her chemo and indeed afterwards. There are many anti sickness drugs available and if you have a diligent GP he/she will prescribe something suitable and if they don’t help then chase them up and try another until she can feel like eating. Like Tom, the moderator, Penny Brohn was a great help, do look them up,their approach to cancer encompasses ALL aspects of how this insidious disease affects not only the cancer patient but their carers (very often overlooked)….indeed, we spent a weekend at their centre near Bristol, all free, ( DONATIONS gratefully received of course) in 5* accommodation and they were just so welcoming and helpful. There are so many ideas as to how/why this cancer is increasing and their help encouraged us to pursue a totally organic diet, filtered water, meditation etc, indeed everything that you can think of that may help. I appreciate that going down this road may incur an increase financially, but I would have sold everything to alleviate the suffering she went through. I wish you well in your journey and sincerely hope you soon see an improvement in her condition.

    • This reply was modified 7 months, 4 weeks ago by  sprouty.
    #9384

    Tom
    Moderator

    Dear Sprouty

    Thank you for coming in with some information for Courty – but I was very sorry to learn from your other helpful posts that you have recently lost your wife to cholangiocarcinoma … Sincere condolences from everyone at AMMF on your sad loss.

    I’m glad that you and your wife benefited from your time at the Penny Brohn centre – they are unique in what they do, and have so much practical help and advice to offer.

    I hope you will visit AMMF’s forum often, and help others with your advice and comments – invaluable to have this from those who have ‘walked the walk’.

    Best wishes

    Tom

    #9946

    couldridges100
    Participant

    Hi
    I was diagnosed in 2003 and received an operation in the same year. I had chemo for 31 weeks afterwards (once per week) and after about week 9 started to feel very green around the gills. We are all different and food sometimes didn’t solve it. What did solve it was salt & vinegar chip sticks. It seemed to take the edge off of it for me. Probably something to do with the fats, but the taste was amazing! Could be worth a try?

    Hope mum starts to feel better soon.

    #10331

    shiner
    Participant

    I’m in limbo at present as my CC is yet to be confirmed. I am meeting the Team Registrar this PM to discuss the outcome of an MDT in Plymouth due this morning. I live in hope.

    My question is: What are the signs of the disease progression? Can I expect severe pain? Where will the pain be situated – abdomen, liver or elsewhere? I have had none of the listed symptoms except severe pain and vomiting which the Team thinks (or thought) was not related as it was emanating from the left upper quadrant.

    Currently we (my Wife and me) are mystified.

    #10332

    Helen_ammf
    Moderator

    Dear Shiner

    I’m sure you and your wife are not only mystified, but very worried and concerned at what is happening …

    With a disease like cholangiocarcinoma it is unlikely you will get clear cut answers about progression – certainly here at AMMF we genuinely can’t give you definitive answers as so much depends on the stage and position of the disease, the person’s own general fitness, other ailments that they may have, and any number of things that go into the equation. Others may come in on this post to share their own information and experiences, which might be helpful for you …

    However, you will find out more this afternoon, and it would be a useful thing to write down all the questions you want to ask your consultant, as it can be so difficult remembering everything when you are in what could possibly be a stressful situation.

    Thoughts will be with you …

    Helen

    #10337

    shiner
    Participant

    Thanks Helen. I have also read the article on MDT which gives a few pointers and of which RD&E staff have apparently taken notice.

    #10342

    shiner
    Participant

    Back from the hospital and here’s the sketch:

    We’ve just got home after our hospital visit with the Team Registrar and the Specialist Nurse.

    I didn’t see the result of the MDT meeting at the other hospital as it hadn’t been faxed/emailed through but the gist was that the other team want to instigate/carry out two more actions.

    First action would be to fit a stent in the compressed bile duct to relieve the jaundice symptoms. Which by the way, I hadn’t noticed in yellow skin and eyes but the team had, plus my blood markers were very high in the indicative area. The stent would be by local anaesthetic and through the skin like an angiogram. You’ll know I guess.

    Second action would be an ultrasound ultrasound biopsy (as opposed to an endoscopic ultra sound biopsy). Once again, I’m sure that you’ll be familiar with that process. The target is about 25mm long

    To my mind, that give me a bit of hope in that surgery hasn’t been ruled out straight away (fair enough, it hasn’t been ruled in) so it seems like good news though they have been unable to explain the intermittent pain in my upper left quadrant so that remains mystery and at present the most debilitating part of the illness.

    #10343

    Helen_ammf
    Moderator

    There’s some information about stents and stenting on AMMF’s website, Shiner, which you might find useful : http://ammf.org.uk/stent-insertion/

    The high bilirubin levels that lead to jaundice usually cause more symptoms than you seem be be experiencing, so hopefully the stent will go in and improve the flow of bile before that side of things progresses any further.

    The u/s biopsy is all part of making totally sure they have the right diagnosis for you, and can then get you going on the correct treatment path as soon as possible. Again, there is a wealth of information about this area on AMMF’s website here: http://ammf.org.uk/diagnosis-and-staging-2/

    #10345

    shiner
    Participant

    Many thanks Helen for posting those useful links. Terminology appears to be the great barrier to knowledge with CC and breaking down that barrier with regular use of that terminology doesn’t eliminate, but goes some way to alleviating the fear or trepidation of what’s to come.

    When I was in the Royal Marines I did a military parachute course with the RAF Parachute Training School. Their motto: “Knowledge Dispels Fear”. Fairly apt.

    Now drinking five pints plus of water per day to help clear the bile from my system. Half a pint per daylight hour seems to make it go down easier.

    #10380

    shiner
    Participant

    It would appear that my tumour is inoperable. I have seen a consultant who knows about these things and he explained it all to me in a 45 minute session last week. The medics are assuming that it is malignant. It is wrapped around my hepatic artery just at the point where the left and right bile ducts become the common bile duct and it will be too risky to get at it. I’m due a stent to be fitted into my bile duct this week to relieve the jaundice symptoms which are now becoming tiresome. That will be followed by an attempt at a biopsy and then chemotherapy. Palliative care is all that is on offer at present with a forecast of 6-9 months and perhaps a year before I meet my maker.

    If (big IF) it is benign then a different prognosis exists that will make me happier.

    I’m pursuing the option of Cyberknife intervention but I’ll have to self fund it as NHS won’t pay for it and my GP has written the referral letter to explore that option. Even that may prove to risky.

    Maybe I’m clutching at straws but I’m not going quietly in to that dark night.

    #10381

    Julie_ammf
    Moderator

    Dear Shiner

    Thank you for the update although we are very sorry to hear that your tumour has been deemed inoperable. We hope that the stent will alleviate your symptoms of jaundice and make you feel more comfortable.

    There is a section on our website about Cyberknife treatment, which you may have already read http://ammf.org.uk/treatment-options-2 and we hope others will come onto the forum to share their own experiences of treatment.

    If we can be of any further help to you please do not hesitate to contact us either through the forum or by email or phone http://ammf.org.uk/contact-us/

    All of us at AMMF send you our warmest wishes.

    #10396

    shiner
    Participant

    I had a stent fitted yesterday via ERCP plus the surgeon took “brushings for a biopsy. It’s the waiting game now but the stent has perked me up no end both mentally and physically. Once I get the biopsy result I will continue to explore my options further.

    #10397

    Helen_ammf
    Moderator

    Good the stent is now in place, Shiner – that should start to allow the bile to flow more freely, so your jaundice will reduce, and your appetite should improve … And that all should help to make you feel much better.

    Please keep us posted on how things go …

    Sending best wishes

    Helen

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