Pancreatic cancer is pretty rare so it might be a bit difficult to find others with an experience of it. It can make your journey so much lonelier . The problem is that rare cancers, and there are quite a few of them, make up at the most 20% of all cancers. A few of them get quite a bit of attention as there have been very good lobby groups, but most of them do not have a lot of research into them unless there is someone who has a particular interest.
There are some groups who look after some of the rare cancers, such as the Brain Tumour Alliance and Ovarian Cancer Foundation, but generally not a lot of attention.
There is one group that is trying to make a difference for rare tumours and that is the Centre for Analysis of Rare Tumours - https://www.cart-wheel.org/ - this is an Australian group. Another is the rare cancer alliance - http://www.rare-cancer.org/ - this is an American site and I really do not know just how good it is, but you may find that you can get more information on pancreatic cancer through them.
He that will not sail till all dangers are over must never put to sea. Thomas Fuller .
I'm very sorry to hear about your husband. My thoughts go out to your husband, yourself and your family at this time. My late husband had pancreatic & stomach cancers he passed away October 2009. If you would like to chat send me a message and I'd be glad to lend an ear anytime.
I like coming back to this site as it helps to remind me that I and my husband were not the only ones going through this horrible disease.
Hope to hear from you
Take care of yourself
My husband Aron was diagnosed with pan can in November 2008 at the age of only 34 years old. At that time I was 20 weeks pregnant with our 1st child (Matthew). He just turned 1 a few weeks ago which was pretty special. :)
As you can imagine, we were pretty shocked with the diagnosis - which sadly was all the worst kind of news. He had stage IV metastatic pan can which had spread to his liver (in a very bad way), his lungs and lymph nodes. Doctors didn't hold out much hope that he would make it to see our son's birth. It was all incredibly stressful and pretty dire...
But, here we are in May 2010 and he is still here with us and doing pretty well. He has tried a number of different chemo treatments - starting with gemcitabine alone, then capecitabine added into the mix for nearly a year - and then recently we tried erlotinib (unsuccessful). He has just started paclitaxel this week. We know we are starting to scrape the bottom of the barrel in terms of treatments available, but we take each day as it comes and are just incredibly grateful for the time that we have together as a family.
It is certainly tough as a carer when facing this horrible disease. I definitely have my up days and down days (I describe it as a roller coaster ride - you just have to go with wherever it takes you on the day).
It would be great to stay in touch with you (& others on this forum) in the future. I've only just found it - we don't have anything like this in NZ (we live in Wellington).
I really hope you and your husband are doing OK. :)
My mother was diagnosed with localised pancreatic cancer in Jan 08. It's a bit of an up and down journey but somehow things seem to be working okay as she's still with us, albeit now with metastatic pancreatic cancer.
One piece of advice when you research on pancreatic cancer: despite the percentages in survival and all the rest, if you are that 5%, then you've got 100% survival rate.
Firstly, congratulations on your son's 1st birthday! That must have been very exciting for you both.
Secondly, you mentioned that your husband just started on Paclitaxal. May I ask how that is going? My mother has been offered to start on Paclitaxal and gemsa, but she hasn't decided whether to continue with treatment or just enjoy her life.
Thank you and all the best to you both!
Hi Vera and Lynn
I cannot relate to the pancreatic cancer but I can relate to you caring for your husbands with cancer at a fairly young age. My hubby (33) has a brain tumour and it is breaking my heart to watch him go through this. We also have an 18 month old little boy and I am struggling to think how I am going to cope as this nasty cancer is threating to take such a special person from us. I am new to this site so it would be nice to keep in touch with you, and others, so we can help support each other. (I am also kiwi Lynn, living in Sydney, but returning home is def the plan).
Anyway, nice to meet you.
I have a friend who is suffering from pancreatic cancer and she has just started on abraxane in the hope that it will halt or reduce her tumour. She isnt part of a clinical trial for this one, just doing it alone. Initially she was going to have to pay for her treatment, however, they have now given it to her for nothing on compassionate grounds.
Sorry for the very late reply - I find it hard to get on the PC these days with hubby and baby demands!! But it's great hearing from you. :)
Aron has been on Paclitaxel now for 1 month. He has it via IV once a week for 3 weeks, then 1 week off. We are going back tomorrow to start the next cycle of 3 weeks.
He's been feeling pretty good with it so far - hardly any side effects (a few joint pain issues, and a few days with fevers that are manageable) - but otherwise, pretty good. He likes that he doesn't get a foggy head with this one.
The major drawback however is that you lose your hair :(. And he's been pretty lucky so far that he hasn't had to deal with that yet with all the other drugs. So, after 1 month of taking it, his hair is almost all gone now - we're off to buy him some hats this afternoon... He's got a great attitude about it all - and I'm sure he'll have some down days about it - but hopefully it's all worth it!
From our point of view, it's definitely worth a try. And it definitely hasn't been as toxic as some of the previous drugs.
Hope your friend makes the right choice for her. :)
All the best,
Oh Amanda, I'm so sorry to hear your story. So hard for you guys. But it sounds like you're having a great attitude about it all. It would be great to stay in touch - and especially through the tough times. I think it's really important to use these types of forums to vent or just stay in touch - because so many of our friends and families just don't know what we're going through - or what to do or say at the critical times...
And it's so tough trying to do this with little ones too. My 1 year old has been very demanding and challenging this week due to teething issues - so, not much sleep or time to do anything other than look after him... Which, of course, is pretty hard when you've also got a sick husband who needs your time and attention too. I have to keep reminding myself to look after me too..! :)
Big hugs to you and your family today. And yes, please stay in touch... :)
Sorry to hear about your friend - but that's great to hear that she's been given the chance to try Abraxane, and fully funded too - that's fantastic. The latest results being published on Abraxane in pancan are pretty exciting so far.
We're talking to our doctor tomorrow to see if we can get it here in NZ, and we'll then switch from Paclitaxel to that drug straight away. And if we can't get it here, then we'll be off to Australia to try it over there. Either way, it will be very expensive I'm sure (it's not funded in NZ) - but we have to give it a go. I'm starting to think about some fundraising options.
Will keep you all posted on developments...
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.