katja

Oh that’s all sounding so much more positive, Andie. I was wondering how you were going on. What is your dad’s bilirubin level now? I remember my dad was still quite yellow and itchy even when his level was down below 100.

Hoping for more of the same, so pleased your dad is eating and getting out too.
Kate

Hi Maggie,
Congratulations on your mother’s successful surgery.
Adjuvant therapy is something which bothers me daily. Basically, there have not been enough studies completed yet to prove whether chemo or radiation reduces the chance of recurrence.

In the UK, there is usually no treatment offered after a successful resection. My dad is nearly at the end of the chemo for a trial which is testing whether Xeloda reduces the likelihood of recurrence (it has been shown to work with other cancers such as colon). I personally believe from what I have read the chemo will eventually be proven to reduce recurrence (or at least extend the progression free survival), but the difficulty is the rarity of this cancer, and not enough people to take part in studies. My dad’s trial needs to recruit 360 people over 4 years – they are finding that very difficult, which shows how rare it is to have a successful resection and be able to take chemo.

Gemcitabine has been shown to reduce the time to recurrence of pancreatic cancer, so we have to assume/hope there will be some treatment which works similarly with cc. Chemotherapy is systemic, the idea is that it kills microscopic cells with are floating around the body.

Radiation has not shown any benefit (possibly down to the lack of prospective randomized studies completed?). Snezzie has been asking the question recently – what should the doctors radiate, if they see nothing? This is what the surgeon and oncologist told us too.

You encounter the same problem which we find in the UK, that is you could ask for chemotherapy, but generally will be told it is not standard procedure. Had my dad not qualified for the chemotherapy arm of the BILCAP trial he would not have been offered any treatment. I know many people who have recurrences will always wonder if chemo would have changed things; at the moment science simply doesn’t know.

You have another problem which we can’t help with and that’s how much to tell your mother. This is just my personal opinion, but if she is offered and able to tolerate chemo, I would want her to have it. One of my biggest worries was that my dad would not be offered any adjuvant treatment.

Sorry I can’t help further, it’s a shame your mother’s doctor is not more open minded – I also wonder where he gets his statistics and opinions from. See if you can show him a few of the trials that are ongoing – does he think all that work is futile?

Kate

Hi Andie,
Hoping forr your dad to get some respite, remember to keep him drinking loads and loads of water.

I hope you can go on your little holiday and try to enjoy it, have some fun stories to tell your dad when you get back. Just before my dad’s surgery we cancelled a break, in hind sight I think he felt guilty that we didn’t go, and it would have been a pick me up for him to have heard that we had a nice time

x

Jaundice only happens when the bile can’t get away from the liver through the bile ducts, and the liver then sends it round the body and to the skin. Bile is an irritant, which explains the itching associated with jaundice.

Some people might not become jaundiced if the liver is able to get rid of the bile – for example intrahepatic CC where the tumour is perhaps only blocking one route out of the liver (before the ducts have joined together to form the common bile duct). Some tumours don’t block the bile ducts until really late on in the disease.

Great news, Rick,
I believe you are right, that there is so much data coming through that hasn’t been criticised yet. A lot of the studies are working on data gathered throughout the 90s. I so hope this chemoembolisation becomes the break that we’re looking for, and you are part of the success.
With much admiration,
Kate

Udder Balm seems to be working really well for my dad’s hands and feet.

Do you have professional help – counsellors or a nurse you could speak to? They will have seen this before; perhaps there is medication you could take for depression. I’m so sorry that you have to go through this.

Sending positive thoughts to you and your family.

I’ll try to be there next thursday.