katja
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Hi Kathy,
Congratulations on your surgery – I hope your recovery is going smoothly. My dad had a whipple in January, and afterwards entered the Bilcap trial here in the UK to see if chemo with Xeloda after successful surgery can reduce the chance of recurrence. He tolerated it really well and had a clear scan at the end of the trial, so far so good!Can you let us know what chemo and radiation the trial will be? There is lots of discussion on this board about adjuvant therapy which you can read, so I’ll just give you my own opinion – I wish my dad had been involved in your trial, so he could have had some radiation too. The more the merrier to try and combat the chances of recurrence early on (obviously the main point here being no one knows yet if any of these things work, but they must be based on something). Is your a phase II trial? My dad’s was phase III with them hoping to accrue 360 people (so far it’s taken them 3 years and they haven’t got half of that yet from the whole of the UK – rare or what!)
I’m very interested in why someone could say to you ‘a 50/50 chance of recurrence’. I’d love to know which study that has come from, and what evidence he’s making that vague sounding prediction on… It sounds to me like a bit of a guess.
Will be interested to read of your experiences on the trial and wish you good luck with the future. Enjoy being cancer free.
Kate
Isisman,
I’m so terribly sorry for your loss and the dreadful suffering you all endured. My thoughts are truly with you during this time. I feel utterly devastated for you and your children.
Wishing you strength, peace and comfort,
KateI agree with Marion. I sometimes think, well maybe CC is rare so we can’t hope to be the loudest shouter, but what about pancreatic cancer, and other gastro-intestinal cancers. They are so often serious, and yet still we see pink every where. Just today I saw a charm for my bracelet which is pink with the logo – I bet most of the money from each charm sold doesn’t go to research.
Unfortunately, CC becomes more well known as it’s incidence rises. When my grandmother died of CC in the 80s they didn’t even name it – even my mum just knew it as ‘one of the rare liver cancers’. Now we can say it and people know.
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My dad had a stent to relieve jaundice through ERCP with minimal anaesthetic – I’d really consider that because if it works it can help so much. Jaundice can be so debilitating, itchy and make you feel awful.
I feel for you, dealing with CC on top of your mother’s dementia. I’m interested in why you hate the idea of morphine – my friend, who’s a palliative care nurse, says that it is utterly indispensible. I understand it can cause hallucinations but my grandmother’s passing was eased greatly by morphine. I don’t believe there are many other drugs which could have done this (she was on huge doses of morphine for at least a week).
I hope that you find some answers and keep your mother as peaceful as possible.
KateGreat news and makes me so happy. Thanks for posting and may you have many more positive reports to make!
KateAh, I’m so sorry to hear this Lainy. My dad had a terrible reaction to morphine after his Whipples (in fact they gave him narcan to reverse it) and was seeing things all over for a while. They did find something, although it was a cocktail of things, which stopped the pain (epidural didn’t work). I think he had tramadol, diplofenac and something else, maybe oxycodone, although unfortunately the best painkillers (opioids) are hallucinogenic.
Hospice might be able to suggest a painkiller to take alongside the morphine so he needs to take less morphine?
Hoping they have some suggestions.
Andie,
Sounds like your dad has a fight body and spirit. Does he have any itching? Is he using anti histamines? My dad didn’t have any symptoms when he was jaundiced except the bright yellow colour – he got up to 600 too. I would be so proud of your dad. Did you go to the appointment?Lainy puts it so well, you have a close family and your mum will manage, even if you think she’s finding it hard. Keep making those happy memories for your son. I was 5 when my Grandma died of CC, and I do remember happy points during her illness even though we knew Grandma was a ‘funny colour’ – we didn’t care about the colour as children.
Love and hugs down the country to you!
Isisman,
I wouldn’t have posted if it wasn’t bothering me so much, and everyone here really cares. You responded fairly positively to Just_Jill and I don’t want to provoke you, but as your husband and my dad’s situations are similar (except for the pain) I keep thinking of you.
You say you want your doctors to be negative. Doctors don’t usually think ‘positively’ they tend to be realistic. I’ve never known a doctor ‘sugar coat’ things. I wouldn’t want a doctor to look on the negative side, I’d want them to be objective. I’d want a pain specialist on board who knows what he’s talking about, who tells me exactly what is causing the pain and what he can do about it. People don’t die from pain, unless it causes a heart attack or similar. I would be reading every little thing I could find on the internet about pain. Small infected nodes shouldn’t cause pain – it’s tumours pressing on organs which cause pain. Is it from the chemical changes, from the radiation, from the surgery? Extreme pain which cannot be controlled by morphine really needs a care facility.The reason we on this board are struggling is that all we can do is surmise, sympathise and try to suggest avenues you may not have thought of. We don’t understand your story, it scares us because we rarely have experience of uncontrollable pain. In the UK we have specialist pain teams in each hospital. My uncle who’s a doctor said ‘no one should ever have to be in pain in this day and age’. However, if the pain can only be controlled by sedation then you’re right, there is no quality of life. I feel so terribly for you and realise that you may have gone. I just hope there is something that can be done for Tad.
Sincere condolences Kevin. I’m with you, I think the meaning you have to look for is in her life and memory. She was an inspiration to many here and so dearly loved by you and those around her.
I hope you can find some peace and a path for yourself.Lainy
I’m sorry, that may well be my annoying dog you can hear from across ‘the pond’? You’re welcome to come and sedate her though it’d probably need elephant tranquilizers.
And I just have to add, no explanation needed but as a Brit the shirt has me utterly bamboozled-Vikings? Cheese? Purple?
Thinking of you both xSteve
I’m so sorry to hear about Nancy. I remember your story from April and it was obvious how much loved she was. Hold onto the great memories of your wonderful wife and friend.
In sympathy
KateTotally understood, Ray. You get on with gaining your weight and recovering proerly from the surgery cos the xeloda will have at least stalled that. May you have no more inpatifnt experiences. Are you continuing to improve now treatments are ended?
Kevin
Kristen has been such a warrior and an inspiration to so many people. My heart was breaking reading your post. I’m so sorry.
Kate
