[MicheleParticipant]

I've always eaten a healthy balanced diet but having MM encouraged me to do some research and tweak it a bit more.
It was obvious to me from the start that specialists tend to dismiss any types of "special diets" which isn't surprising as there are some rather whacky ones out there. However, I very much wanted to give my body as much help as I could through what I fed it with. To me, feeding the immune system is one of the most important things to do as it's my main weapon fighting MM and everything else thrown at me.
Apart from the usual suspects on any healthy diet list, I now eat more dried fruit and nuts, spinach, and most of all blueberries, be it in fresh, frozen or juice form.
Why? Well, my specialist once told me that she had a patient with Leukaemia who was only given 2 months to live. He went on a blueberry based diet and 2 years later is still going strong. It remains a mystery to her how it's worked, but the story is good enough reason for me to increase consumption of them!

I'd be interested to know what changes (if any) others have made on their MM journey……..:-)

[tonyParticipant]

Hi Michele
When I was diagnosed and started treatment in dec 2004 I started taking an apple, pear, banana, orange, dried apricots and walnuts in my packed lunch. I did achieve complete remission so the change in diet did not hurt. I often eat mangoes and regularly drink mango and orange fruit juice. I did take blueberry punch for a while when I relapsed in 2009 and whether it was this or just coincidence my test results stabilized for about a year and I still have not started treatment. I think drinking at least 3 litres a day is probably more important than diet. This year I have increased my parsley turmeric & chamomile tea intake and make a tea from black cumin seeds. Not sure yet whether this is helping yet but bence jones in 24 hr urine tests is reducing but yet to see any improvement in sflc kappa results.

Best wishes
Tony

[adminKeymaster]

Hi Michele

I went gluten free when I started CTD in March 2011. I have myeloma and Amyloidosis, which affects my kidneys. Before I was diagnosed when I thought I had just a kidney problem, I had read how a gluten free diet could help. After being diagnosed with myeloma, I googled 'myeloma' and 'gluten' and found some articles which link the possibly of myeloma, in some cases, being an extreme form of gluten intolerance. 'Margaret's corner' a well known blog has also picked up on this. I have never mentioned my diet change to any of my doctors in case they think I some kind of quack. I already knew I had a wheat 'intolerance' so I decided to go gluten free the day I started chemo as I had nothing to lose.

I achieved a complete response after 2 cycles and have remained in remission ever since. Because of the amyloid, it was decided that an SCT was not appropriate at that time, but I have now been pencilled in for November. I have had a stem cell collection, but collected enough for only one transplant – I asked not to have the chemo priming and got by on just GCSF injections and one dose of pleriflexor.

I started taking green tea supplements about 2 months ago ( the tea is vile! ). I did buy some curcumin supplements, but have chickened out of taking them as I found out after buying them that they are not good if you have gallbladder problems and I do have some gallstones.

Who knows if going gluten free has made a difference, but I intend to stick with it. My consultant is now pushing me to move to transplant as soon as possible as he says now is the time my myeloma should be making a return, but I have to say, I'm not keen if I am still in remission at that time!

Tracey x

[adminKeymaster]

*plerixafor* – sorry for the typo!

[Author]

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