https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3998#M792 Hi Julie, 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... Cheers, Lynne. Tue, 25 May 2010 02:00:16 GMT 1Dog1Cat 2010-05-25T02:00:16Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3989#M783 Hi my husband was diagnosed in Aug 09 and I would love to hear from others dealing with Pancreatic Cancer Thu, 01 Apr 2010 01:08:34 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3989#M783 vera 2010-04-01T01:08:34Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3990#M784 Hi Vera 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. Cheers Sailor He that will not sail till all dangers are over must never put to sea. Thomas Fuller .

 Fri, 02 Apr 2010 01:33:04 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3990#M784 Sailor 2010-04-02T01:33:04Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3991#M785 Hi Vera, 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 Lisa Sun, 11 Apr 2010 08:09:37 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3991#M785 2010-04-11T08:09:37Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3992#M786 Hi Vera, 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. :) Best wishes, Lynne. Sat, 01 May 2010 10:13:30 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3992#M786 1Dog1Cat 2010-05-01T10:13:30Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3993#M787 Hi Vera, 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. TO LYNNE: 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! Fri, 07 May 2010 13:48:31 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3993#M787 sylph 2010-05-07T13:48:31Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3994#M788 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. Amanda xx Mon, 24 May 2010 02:45:26 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3994#M788 Hopeful 2010-05-24T02:45:26Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3995#M789 Hi everyone 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. Julie Mon, 24 May 2010 09:31:54 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3995#M789 Jules2 2010-05-24T09:31:54Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3996#M790 Hi Sylph, 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, Lynne. Tue, 25 May 2010 01:52:33 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3996#M790 1Dog1Cat 2010-05-25T01:52:33Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3997#M791 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... :) Lynne. Tue, 25 May 2010 01:57:32 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3997#M791 1Dog1Cat 2010-05-25T01:57:32Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3998#M792 Hi Julie, 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... Cheers, Lynne. Tue, 25 May 2010 02:00:16 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3998#M792 1Dog1Cat 2010-05-25T02:00:16Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3999#M793 Hi Lynne Apologies for taking so long to reply. Have been travelling for checkups etc... :) If you are looking at coming to aus it might be worth checking what clinical trials are available and see if you can participate. Or perhaps your oncologist could appeal to the pharmaceutical company and perhaps get it free. Can you email me with the pancan address please? How did you get on with your appointment? Julie Sun, 30 May 2010 11:50:45 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/3999#M793 Jules2 2010-05-30T11:50:45Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4000#M794 This is the first time I've been on this site, so please excuse me as i'm still trying to find my way around. My partner was diagnosed with pancreatic cancer with multiple liver metastises xmas 2005. He wasn't offered any conventional treatment because the oncologist didn't beleive it would make any difference. We have researched and tried many complementary therapies, and 5 years later he is still alive and working doing building renovations. The oncologists and doctors openly say they can't understand why he is still alive. I have worked as a carer in a palliative care unit for the last four years, so have a lot of exposure to sickness, but its different when its someone you love dearly. Our biggest problem really is that the cancer has caused pancreatitis, which is really really painful. This is causing more damage to the pancreas and puts him in hospital on morphine and a drip as he cant eat or drink anything until the attack passes. We make vegetable juices 2x daily, as they are easy to digest and are full of vitamins and minerals, and we are now vegetarians (well I do sneak out and have a steak now and then!) I have lots of information on alternate therapies if anyone is interested. Currently my partner is on IV Vit C which really boosts his energy levels, and he injects himself with a mistletoe extract 2x weekly. Our longterm aim is for him to heal and us to set up a retreat in the countryside of Southwest Aust - a place of healing, peace and positivity! If I could give anyone any advice it would be this: don't panic, never regard cancer as a death sentence because many people do heal, trust your bodies innate ability to heal itself, be proactive in your treatment, ask questions, research, so you feel like you still are in control of your life and use your mind to help you heal - visualise yourself as healthy everyday. Your mind controls your body!. Some-one once said: there is no such thing as false hope, only goals we didn't reach. ALWAYS BELIEVE IN HEALING. Sorry, I didn't intend to write a book! I am really passionate about giving people hope because often the oncology environment isn't very hopeful. I would love to hear from others if I haven't scared you all off!! Rebecca Mon, 31 May 2010 01:49:27 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4000#M794 loveandheal 2010-05-31T01:49:27Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4001#M795 Hello, I am new to this board, and not sure how it works. My boyfriend has just been diagnosed with Pancreatic Cancer and it has spread to his liver. They say it is Stage 4 and Agressive. He is 31. He had a Whipples Procedure a week ago, so still in hospital for another few weeks, hoping to get out before Christmas. They say they will try chemo, but not sure what that will do. Should I be asking what kind of chemo's he is getting; as in the drug names you have all said above; are they chemos? I am just so lost and in shock. I am so grateful we have the time now together. It's good to read others have kept on surviving. I am so lost. Wed, 01 Dec 2010 04:44:18 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4001#M795 Kristella 2010-12-01T04:44:18Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4002#M796 Hi Kristella I would strongly suggest that you ring the Cancer Helpline 13 11 20 and speak to one of the nurses. They will be able to answer your questions about the chemotherapy and provide you with lots of information. Regards Sailor Wed, 01 Dec 2010 09:14:42 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4002#M796 Sailor 2010-12-01T09:14:42Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4003#M797 Hi Rebecca, Thank you for your great post. I have Oesophageal cancer ( not very common) with liver mets as well. So have had radiation and now going through chemo. I love reading post like yours as it gives me a huge injection of hope. I try to be upbeat and positive most days, but the side effects of chemo take its toll. only about 4 weeks to go hopefully. I cant take vitamin c tabs as they are very acidic and irritate the oesophagus to point everything hurts going down again. Kiwi fruit I found the same. Do you have any ideas on something else. I am happy to try all the vegetable juices. I am going to put the line you have in your post ALWAYS BELIEVE IN HEALING everywhere I can see it. Thank you Cheers Vicki You never know the effect the ripples have when you reach out to someone. Thu, 02 Dec 2010 00:01:38 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4003#M797 Vicki_Anne 2010-12-02T00:01:38Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4004#M798 Hi Kristella, I'm sorry to hear about your boyfriend's diagnosis. My Mum had the Whipple's procedure when she was first diagnosed with pancreatic cancer and I know it's difficult to see your loved one in so much pain and so weak. I'd encourage you to follow Sailor's advice, as well as to ask as many questions to the Oncologist. We always went in with a list on a notebook, and recorded the answers because some days we were too in shock to remember the small details later. (like changing chemo routines) It helped me to know exactly what was to happen to her. But, it's not for everybody as too much information can be frightening. *hugs* Keep us updated. You're not alone in this. Tue, 07 Dec 2010 10:01:10 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4004#M798 sylph 2010-12-07T10:01:10Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4005#M799 Thank you for everyones help and su pport. Just a quick update, after 6 weeks in hospital he is out! Chemo starts in 3 weeks will post ahain soon. Thank you all again. Has been so hard, but I am thankful for everyday. Happy New Year to all. I am on a phone now so hard to type all ups and downs, but never been more thankful to have my loved one home. Thu, 30 Dec 2010 13:30:34 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4005#M799 Kristella 2010-12-30T13:30:34Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4006#M800 Hi all I will be keeping an online diary. Check out my latest posts. I will share all of the findings and my own opinion as well as our experience with pancreatic cancer. I will post about; - latest medical works, studies, news on PC - conventional treatments - potential cause in our particular case - alternative treatments that I think may work (will be very selective here as there is a lot of mumbo jumbo stuff that is simply not worth a try. - will write about diet and physical exercising - mental discipline and overall attitude All the best to all! Thu, 06 Jan 2011 23:17:07 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4006#M800 2011-01-06T23:17:07Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4007#M801 Hello, After Nick's strong battle with Pancreatic Cancer, I lost my fiancee on Tuesday 17th May, 2011. He passed away peacefully at home under the care of myself, his parents and an amazing Pallative Care team. I have lost the love of my life, and not one thing makes sense. Wed, 18 May 2011 22:55:29 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4007#M801 Kristella 2011-05-18T22:55:29Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4008#M802 I'm so, so sorry to hear your very sad news. Big hugs to you and your family right now. What a huge loss. Sadly, my husband Aron also lost his battle on 14 March (after 2 yrs, 4 mths fighting it). He died 1 month before our son turned 2. We were so grateful for the time that we had together until the end - but it still doesn't make up for the tough journey we've all had to go through. And of course we still face another tough journey ahead while we try to keep living our lives without them. I don't know you guys, but I really feel for you and I'm just so sorry... I really hope that his funeral goes OK and that you may feel some peace in the upcoming weeks - just go slow and don't do anything that you're not ready to do yet. One day at a time is how I live at the moment - and some days are definitely better than others. Something else that I have found useful is a book called "Death... and how to survive it" by Kate Boydell (she lost her husband in their 30s and was left with 2 small kids). It's a really great book (I ordered it as an e-book from the UK Book Depository website - they also have worldwide free delivery). She also has a great website that she started for young widows called www.themerrywidow.co.uk. It has heaps of good resources. And the whole point of her book and website is really just to let other young widows and widowers know that we're not alone and others have gone through it too - and what she has found useful. It really has helped me. Best wishes to you and your family - and please stay in touch. Lynne. Thu, 19 May 2011 02:21:54 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Hi-wife-of-pancreatic-cancer-patient/m-p/4008#M802 1Dog1Cat 2011-05-19T02:21:54Z