Unsure of the next step.....

Hi Steve, I am in a similar situation to your Dad and I think it is quite natural to think that we should be doing something to help prevent recurrence or at least retard it for as long as possible.  On the recommendation of a Meso expert oncologist what I am doing is;

taking Tumeric (curcumin) here's a reference for its possible effectiveness, celldiv.biomedcentral.com/.../1747-1028-3-14

Also taking Metformin, a drug for diabetes but with evidence of preventing cancer growths (need to explain to your GP who will prescribe it, at least mine did). And low dosage Asprin, also with some preventative measures evidence.

Most of all, trying to keep fit and active.  I'm off for for 3 months hiking in NZ next week.  Making the most of the time we have got, doing what you like to do, with those you want to be with, has got to be the best we can do.

Good luck to you Dad.

Gerry

Hi Gerry, thanks for the advice. I will certainly be purchasing some curcumin and will get my Dad to make an appointment to see his GP about being prescribed Metformin.

My Dad is still fairly active and rides his bike at a fair pace each day. I agree about making the most of your time and this year we have been to Florida, Ireland and Cornwall and will be in Rome in February

Good luck with the New Zealand hike.

Regards, Steve..

Hi Gerry

By the time you read this you'll be trudging round new zealand, good luck.  I'd be interested to know how you got on with the flight.

I was delighted to see you recommending metformin.  I was diagnosed over nine years ago and for a lot of that time i've been diabetic and on metformin.  I'm convinced its helped and i've mentioned it to my oncologist who said there were going to be trials with it and breast cancer.  I also asked on here, quite a whole ago, if anyone else was on metformin.  Only one person replied.  

I was also disappointed that the James Lind Alliance survey didn't want to consider metformin.

I shall certainly be putting cumin on my shopping list!

Sorry, meant tumeric!

Since my diagnosis, on the advice of my sons and a Dr friend who is keen on alternative therapies, I have been taking multivitamins, organic turmeric pills, Graviola pills and high dose sodium ascorbate (approx 20g per day) which is vitamin C. I have no idea if any of this stuff does any good but I am assured that it will do me no harm. I have been advised to stop taking these during chemo. It is not known whether they may prevent the chemo drugs working and I don't plan to take the risk.

I am also avoiding sugar, only drink tiny amounts of alcohol, if any. I try to only eat organic food and am using a juicer to produce a glass of juice from various vegetables every day (kale, watercress, peppers, ginger, mint, courgette, carrot etc.). I have been a vegetarian for 40 years and try to eat healthily. Once again, I have no idea if there is any benefit from any of this. I do still eat dairy and eggs. I also drink Matcha green tea (anti inflammotry) and less coffee that I used to.

My attitude is that if it might possibly help and it is not unpleasant I will give it a go as long as it doesn't do me any further harm. So far so good.

Another friend who had serious heart problems (no connection whatever to Mesothelioma) followed my son's advice about 6/7 years ago and he became a strict vegan. He never needed the surgery that was proposed, now takes no drugs, is now a healthy weight and has been fit and well for many years. It has clearly worked for him. That doesn't of course mean that any of the above will work for me.

Michael

Hallo Michael

And I thought it was only us that behaved in this contraversial way! We read Dr. Servan-Schreiber's books, especially Anticancer - A New Way of Life, along with Foods to Fight Cancer by Prof Beliveau and Dr Gingras. There is a lot of research out there on alternative/complementary therapies.

The medical profession are not always interested in these approaches and you will get negative reactions or dismissive shrugs andd funny looks. Sorry to be cynical, but 'No drugs - No big bucks' is the order of the day.

Anyway, my husband who is also 67, was diagnosed in March 2015 and was more or less told he wouldn't last a year. But he's still here! We don't eat processed food except maybe once every couple of months when we feel like being bad! Japenese Sencha Green Tea for us, no coffee, no milk, no sugar (meaning nothing with sugar in it). Organic wherever possible. Vitamins C & D3, curcumin supplements as well as turmeric in most dinners (lovely in scrambled egg)... the list goes on.

So, keep it up. We don't know if it's helping but he-who-must-be-obeyed certainly feels better for it and, although we're under no illusions about a cure, it hasn't killed him yet. And listen to your body.

Great to hear that Madismum. I was feeling a bit lonely :-)

And, great to hear that your husband (49 was a good year) is doing so well. I had the same prognosis 6 weeks ago but am doing my best to prove it wrong. I will get those books and try your scrambled egg recipe.

When I told our Dr friend that everything other than chemo was dismissed as 'experimental' by the doctors I have spoken to, he retorted, 'Chemotherapy is experimental!' 

However, I'm not complaining about the care I'm receiving, just trying to help it along with a few other things.

Best wishes

Michael

Please dont rule out Clinical trials as they are coming through better for us 2017 is going to be a better year and Drugs are being used now. I still believe in hitting it with Chemo so that you have time to find a trial  Good luck xx ukctg.nihr.ac.uk/trials

My consultant has told me about an immunotherapy trial starting April next year. I told him that I would like to be on that one (not sure which one it is on that list). I told him that he just has to keep me alive so that I can start it.

This is our problem you have to travel  email Mesothelioma UK Liz Darlington. Im in remission on the first Immunotherapy trial MSD but it doesnt work for everyone so Please ask your Consultant to test your bi-op for PDL1 as that is what they accept you on.

Dont wait get ahead as there are to few places on the trials for Mesothelioma but there are other trials Merck have 8 in the pipeline for 2017. Leicster and St Barts where there are other trials, are the hospitals to contact. If your strong and can cope with the travelling its the best way x