My mother has recently been diagnosed with metastatic pancreatic cancer, from her first diagnosis of localised pancreatic cancer in Jan 08. Since Jan 08, she's had whipple's resection and gemsa, then radiochemotherapy for local recurrence in Oct 09. Last month, the PET scan revealed mets to the liver and the peritoneum.
I've found some support groups in NSW but unfortunately we are in Melbourne - does anybody know if there are any support groups for pancreatic cancer survivors in Melbourne?
Also, she has severe back and abdominal pain from her mets - can anybody recommend any alternative treatments to relieve the pain? She uses a heat pack, analgesia and rests but still gets the pain.
Lastly, the latest thing that has been recommended to her is Kanga water and the Hallelujuah Diet. Has anybody else tried it and are they just scams?!
Thanks for any help you can provide! It's hard to see her suffering and to have the poor prognosis hover over her.
If you want to waste a lot of money by all means go ahead and get Kangen water. It is a vastly overpriced device that claims to produce alkaline water by electrolysis. If you really want to drink alkaline water, then add some milk of magnesia, or bicarbonate of soda to the water - yes they are what your local pharmacist would call antacids. However, it is not a good idea to be taking them unless you have a need to. Similarly if you want acid water, drink fruit juice. There is no link between alkaline water and anti -oxidants. By the way, you will notice that things have to be added to water to make it acid or alkaline. Pure water is neutral and will stay that way no matter what you do to it at everyday temperatures and pressures.
The Hallelujah diet - is just another vegetarian diet that recommends high intake of raw plant food, that the body will have difficulty digesting.
There is a lot of quackery when it comes to this area and a lot of scams out there. They are only too willing to relieve you or your money. However, if they make you feel good and you have the money then I suppose they don't do a lot of harm, provided they do not interfere with your evidence based treatment. They just make me angry!
Me howling blasts drive devious, tempest-tossed, / Sails ripped, seams opening wide, and compass lost. William Cowper
Hi the best thing for my husband's pancreatic pain was a ct guided coelic plexus. Basically they put a needle through your back and into the nerves around the pancreas and pickle them with alcohol - instant success and only takes a couple of minutes laying under the CT scanner. Definitely would recommend it - all the pain has gone
Hi, this is my first time at this site so still getting my head around how the site works. I have pancreatic cancer, diagnosed November 2007, had Whipples in March 08 and been on and off chemo ever since.
I had terrible back pain also, had the coeliac plexus block but it didnt work for me. I am on Gabapentin which is used in anti-epileptic treatment and this has been great. I still get the odd back pain but no where near the severity before.
I hope this helps.
So glad to have found an Australian site, I have used Cancer Compass which is US based and I found it really helpful and got some great ideas from other patients and carers. Ofcourse the drugs that are talked about are often not available here.
Good to see you here. I went and saw my pancreatic friend yesterday and was thinking of you and wondering how you are going. 🙂 My friend has just started on the abraxane treatment that they are doing a clinical trial with. She is not actually involved in a trial and was willing to pay for her treatment but has since been granted it free on compassionate grounds. (just for anyone's info that is reading - there are ways and means sometimes)
Ok, i better off and get some more housework done ... somehow i manage to avoid doing this bit. lol
Thanks Sailor and Vera for your kind tips! Thankfully my mother has moved on from those fads and has started chemo with abraxane and gemza instead. And I'll pass on the tip about the nerve block too thank you.
Pauline -- it's good to hear from somebody doing okay post-diagnosis of pancreatic cancer. Keep us all updated on how you are coping with it all!
Julie - my mother just started the abraxane trial last thursday ... how is your friend going with it? Fingers crossed that this chemo helps 🙂
My friend is feeling better after her first lot of abraxane. She is going to be having it for 3 weeks straight and then one week off and then back on for 3 weeks again. I am not sure when she will have a blood test or scan, think she told me but i still suffer from a bit of a chemo head ugh!!
Definitely fingers crossed and likewise for your mother too.
One woman in perth has had fantastic results with the abraxane. Her tumours shrunk by 80 or 85% cant quite remember now and only saw it briefly on the news.
My friend is going to try some ginger powder from qld. It will be interesting to see if it helps with digestion. I dont normally go for faddy things myself but this seems like it might just help, even if just a little.
There are no online pancreatic cancer related groups in Melbourne. When I get a chance I may create one myself. But I think this website is OK too.
In terms of diff. diets - in my opinion diets do not cure cancer no matter what many say. There are dozens of them yet we have an increasing number of cancer patients. I bet majority of patients is on some sort of diet.
What diets can do?
They can replenish depleted systems and can strengthen the immune system, something people who undergo chemo dearly need to have at an optimal level.
What I personally believe can help boost the immune system and that is naturally available is; Australian grown garlic, Papaya, black cumin, vitamin D supplements just to name a few. What we are going to minimise is - SUGAR intake of ANY sort. Sugar provides energy to our cells (that is good and bad cells).
Drop sugar and eat fresh and healthy cooked foods. Do not smoke. Do not drink alcohol. Exercise and be positive. This way you regularly maintain your body in a very healthy way.
There is no universal cure for cancer and I do not believe an universal cure is possible as we are all different. A cure will have to be SPECIFIC to a particular individual based on his DNA, inherited genes, overall environment and circumstance. So, when one reads - this or that diet cures cancer - do not waste your money - it does not.
i to believe diet does not make much difference, i have proof! my bf eats a lot of junk and loads of sweet food yet his cancer is shrinking and dissapearing.. i think diet will just help the person feel better
It s correct that there are no support groups for pancreatic cancer patients but there are some organisations that are available to assist as well as the Cancer Council and the Cancer Helpline 131120.
The Centre for the Analysis of Rare Tumours: https://www.cart-wheel.org allow links between patients and carers, it is worth looking at their website.
The Unicorn Foundation is a new foundation that is specifically there to support people with endocrine tumours, which includes pancreatic cancer: http://www.unicornfoundation.org.au
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.