[racingdogParticipant]

I was diagnosed in 2009!

Back in 2014 I was made aware by the Reading support group of a Position Paper from a symposium (or conference?) in Chicago for myeloma experts. After the usual listing of papers presented was a paragraph saying that there was increasing anecdotal evidence that a standard glass of red wine a day could assist in extending remission periods. So that is what I have been doing. But it is not the wine per se which causes this.

Does it work? Well 15 years and counting!

I keep a graph of my Para-protein. In 2014 the graph was accelerating upward and, coincident with starting the red wine treatment, the graph breaks sharply to the right. The period from there up to the recommencement of a sharp up-tick is 5½ years. That is 5½ years of extra life! The team at Frimley Park have also said they have seen nothing like the ongoing trend in my current second remission period. I am at 4g/l after a whopping 3 years and a couple of months of second remission!

I have had no side effects from this.

So what is happening? Apparently there is a substance in the wine called Resveratrol, about 15mg in a 125ml glass. This is naturally occurring. It is also known to be useful for other conditions, hence it can be bought at Holland and Barratt in capsule form, 250mg per capsule with a recommended maximum daily dose of 500mg. I haven’t tried them yet as I hadn’t heard about it in my first remission period and my PP count is still being held low in the current, second, period just by the red wine. The numbers in this paragraph are central to what follows.

I was therefore dismayed to learn that Resveratrol is not recommended for use with myeloma! So I did a spot of investigation. It turns out that there has been just one clinical trial of very short duration with a very small number of patients. That had reported severe side effects. BUT…. They were using a daily dose of 5g!!! Remember the numbers in the previous paragraph? I have talked to many people about this, including my haematology consultant, and they are all of the opinion that that dosage level was ludicrous and pretty much guaranteed to cause side effects.

So there you have it. If you are able to take red wine then have one 125ml glass per day. If not, try the capsules. As to how you use the Holland & Barrett capsules you are on your own for now given I have yet to use tham. And of course I am only one data point, there must be some chance it won’t work for you. As ever, if in doubt talk to your consultatnt.

[glencParticipant]

Having just had a glass of red wine with my meal that was a very encouraging post! I remember reading this article a while ago https://www.myeloma.org/blog/dr-duries/good-news-alcohol-not-bad-thing-myeloma-patients. I have been in treatment for the last year, including stem cell transplant, so haven’t been able to drink alcohol, but now I’m in recovery do enjoy a small glass of red wine a couple of nights a week. I may increase the frequency after your reminder. Living on my own I buy the small 180ml bottles and tend to have half of one of those. I will start Lenolidomide maintenance treatment around February and not sure how compatible that will be with alcohol but in the mean time I will enjoy this very welcome alternative treatment!. I am glad you are doing so well. Thanks for sharing.

[racingdogParticipant]

Having spent several months trying and failing to get the authorities to look at this (I’m a mere patient apparently), it is very gratifying to get an instant response which indicates that I may possibily have done something useful by posting here!

If you haven’t already done it, start recording your para-protein levels. You need to be able to check whether this works for you and whether you need to increase the dosage (remember the Holland & Barratt maximum off 500mg, so there is nothing to worry about when we are in the tens of miligrams range). I put my results in a simple two column spreadsheet, Date and Value. I added a simple chart to show the data as a graph. Anyone who hasn’t used a chart before shouldn’t panic, it is clearly described in the Help that comes with whatever spreadsheet application you are using and is pretty simple.

Very good article that. Quite so, despite what the International Society of Professional Knicker Wetters may say. Apparently “everything in moderation” is too difficult for them to understand. I have to say that I don’t recall ever being told to avoid alcohol although there were times when it was unavailable due to being in a ward. But 15 years ago is a long time and treatments have changed, for example there was no maintenance during my first remission, 11 years! There is no evidence that it has ever interfered with my treatment.

[glencParticipant]

I have always kept a spreadsheet of my blood results. Currently my paraprotein is “too small to quantitate” so my hope is to keep it there as long as possible. In the UK it is always difficult to get our consultants and haematologists to comment on anything other that clinically tested medical treatment. In the US the hospitals seem to have a much more holistic approach looking at diet, supplements like curcumin and other natural remedies.

[racingdogParticipant]

With no medication, and before I discovered the red wine data, my first remission had a period of 18 months with my level at virtual zero (a better term I feel than the clumsy official one!). In my second remission with both Daratumumab maintenence and the red wine I got 30 months at virtual zero. The staff at all levels say they have never seen anything like that with just Daratumumab, so the red wine is still effective.

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