[HarmonyParticipant]

Hi,

Just wanted to know if any of you have tried any supplements/special diets which you consider to be beneficial. I have started to take selenium, drink green tea daily and try to replace food with organic alternatives in the hope of keeping the cells in their ‘smouldering’ state. The survival stats look pretty grim at the moment. Does anybody have any view on how accurate they are? I wonder if they are influenced by late diagnosis or stage (smouldering/full-blown)? I’m just trying to make sense of it all.

[tonyfParticipant]

Hi, I was told not to bother with taking supplements, just eat a good healthy balanced diet, veg and fruit especially. Told not to drink green tea!
The specialist nurse at the hospital should give you a diet sheet, my wife likens the diet to a pregnancy diet?
As for survival stats, ignore them, I guess we are all in the lap of the gods.
Did I read on another post that you are going to have a stem cell transplant, keep us informed.
Regards
Tony F

[dickbParticipant]

Follow Tony’s advice. The survival rate stats are historichal, whilst giving an indication, they don’t always take into account modern developments in medicine and care, there will always be a time lag, secondly, the illness is seen as an old persons illness, how many of those who were diagnosed with MM would have died within 5 years anyway?

You need to stay off the Green Tea because it can react badly to some of the medication, not sure which though. As for changing eating habits, as far as I am aware there is no proof that certain foods apart from glucose based products affect the MM. My wife did some research and found that cancer cells feed off high sugar content in the blood stream. Hence stay away from products that have glucose or other sweeteners added such as Wine gums, cakes with added sweeteners, processed foods. Just read the label before buying. Chocolate is still ok.

[dan4ukParticipant]

Hi, If you type in google you might be interested in (margaret’s corner) shes dealing with smouldering myeloma and has loads of information on diet and references to studys that have been done on her blog. She is also on facebook under (Margaret’s Corner. Living with smoldering myeloma). She doing very well so far and is just one of the people that has helped me.

[scott9Participant]

I’ve started to take curcumin as I read that it may have anti cancer properties. It may not, but I want to be proactive and do something – anything – to help the situation.

Good luck in your fight against this horrible thing.

Scott

[MothasParticipant]

I would avoid supplements whilst on treatment. Green tea doesn’t mix with velcade therapies so avoid if you’re in the process of receiving chemo of this type.

My consultant says that curcumin, green tea etc. is probably harmless otherwise as long as you don’t overdo it.

[bandityogaParticipant]

My husband takes manuka honey which is good for fighting infection

Maureen

[jmsmythParticipant]

Hi Maureen

I have been taking Manuku honey for about 5 years and haven’t had as much as a cold. Hope I Hevesy spoke too soon. Frank won’t take it as he says it’s too sweet. Hope Ian is improving

Jean

[HarmonyParticipant]

Hi All,

Thanks for your replies. You all seem so confident, strong and in control. I admire that so much-it’s great to be able to press a button and receive so much reassurance. I need to ‘give’ more back to you all. At the moment, I seem to be doing all of the ‘taking’ in terms of advice and reassurance.
I’m not receiving medication at the moment. My treatment plan is ‘Watch and wait’ so the green tea’s okay for now but I’ll take your advice and stop if/when I need medication.
Scott – I’m like you, I have to be proactive which is why I take the selenium, green tea etc.
Dick – It’s great that chocolate’s not off limits as I love Lindt!
Dan- I’ll investigate Margaret’s corner.
Mothas, Maureen, Jean – Thanks for your advice.
Let’s continue to swim these choppy waters together. There’s strength in unity!

[petesilverParticipant]

The problem with MM is that everyone is different, some drugs suit some but not others.
I was diagnosed in 2003 have had SCT plus other drugs over the intervening years and I’m still here not perfect but still in working order having carried on my life as normal with no special diets or the like.
The only different thing I do is once week I have Hyperbaric Oxygen (HBO) which is breathing pure oxygen while under pressure. Whether this has helped I cannot say, but it has done me no harm.

[meganjaneParticipant]

Hi Pete,

Is the Hyperbaric Oxygen something you do on the NHS or is it available privately in your area? Phil and I saw a show about an athlete who used the chamber to help recover from injury and the athlete said something about it helps to produce stem cells, is that the idea behind it for you? I know Phil would be very interested in any further information you could give about it.

Thanks,
Megan

[MothasParticipant]

Hi Pete
like you I had a plasmacytoma and after radiotherapy my shoulder has never really been the same since. I’ve heard that HBO can help with blood circulation and wondered what your experience of it was.

tom

[petesilverParticipant]

Hello Tom & Megan
Before I go any further I have to say that having HBO is purely a personal thing I do, I did pass it over my consultant who was fairly none committal but said he had no objection.
Its a bit of a story but I will keep it brief, my wife and I help out at at the Exeter Multiple Sclerosis Therapy Centre who provide HBO for people with MS, however over the weeks I noticed that they we offering their services to people with other complaints as they do have spare capacity and it helps the charity funds, providing their own Doctor agrees they can use HBO, I noticed people with ME,Brain injuries, ulcers, broken bones and a whole list of complaints, so I looked into it further for myself, and the Centre has contact with a specialist in HBO at Dundee University they contacted him for me and this was his reply.

“Oxygen under hyperabric conditions would be, as you have already discovered a valuable way to improve
your recovery and would not compromise your treatment. It is actually a way of increasing your circulating stem cells and cancer cells are inhibited by oxygen”

So that is why I started using it and all I can say is it does help with the energy levels and does help with keeping my hemoglobin up which is always quite low so that’s it really, I do pay for each session but costs are reasonable, there are many MS HBO centres around the country but what they do or offer you would have to find out. So that’s it in a nutshell if you want any further information just let me know.

Peter…

[meganjaneParticipant]

Thanks Peter, Phil was very interested to read this as was I, we will look into it further.

Megan

[MothasParticipant]

Thanks Peter, did your GP refer you for this or did you self-refer?
I ask because looking online the prices seem to vary quite dramatically – anything from £50 a session to £75 for a batch of 10.

tom

[Author]

Posts