[miraParticipant]

Hi Debbie

Sorry to hear about your husband’s diagnosis and I wish him well.

We have cancelled our trip for now as I don’t feel like travelling such long distances or for such length of time due to my condition. Having been diagnosed in August, I am still getting over it. On one of my visits my consultant did suggest that an injection to prevent blood clots is taken 4 hours before a long haul flight. You may want to check this out with your medical team.

In terms of the tumeric/curcurmin – was this recommended and if so, who did. Whilst I am taking a high dosage, my cocnsultant did not ask me to take it.

In addition, I may have to have treatment sooner than I thought!

Best wishes

Mira

[miraParticipant]

Hi

My consultant has not asked me to take curcurmin although I am. Who was it recommended by? it will be good to know.

Thanks

Mira

[miraParticipant]

Hi Bren

Reassuring to hear about the insurance aspect – thanks for this information.

How much curcurmin are you taking. I believe to be effective you need to a very high dosage each day. Have you had any guidance here? Good to know.

Best wishes

Mira

[miraParticipant]

Thanks Bren for getting back. Perhaps I will check with my consultant when I see her in December (my two monthly visit).

I still cant believe it as I thought I led a fairly healthy lifestyle. Apparently, this is simple bad luck! I am in a much better place now and just trying to get on with life as far as possible.

Best wishes to you too.

Mira

[miraParticipant]

Me too – diagnosed for smouldering myeloma in August 2018. All the tests done and they monitor me every two months. I had my consultation today and things have not deteriorated, hence still on watch and wait mode. I am with the West Hertfordshire Hospitals NHS Trust and there has been no mention of the Daratumumab trial. Wonder why as I may be in the high risk group as my PP level is 54.9 and my kappa lambda ratio 0.01.

Are these trials based on individual hospital trusts rather than overall UK wide?

[miraParticipant]

Hi Michael

Thank you so much for responding to me. So pleased to hear you are in remission. I will look at past discussions regarding this. I did see my consultant today and asked about Curcumin and he said that whilst the NHS don’t advocate it he has heard that it is helpful for myeloma patients and there is no harm in taking it. However, he could not say how much is an effective dose. Could you let me know how much curcumin you take each day and the product description. I have started taking a liquid supplement as well as adding to my food. But I believe this is not sufficient. If you have further information here, please let me know.

Thanks again.

Mira

[miraParticipant]

Hi All

Just been reading all the posts in this sections as I too have been diagnosed with asymptomatic Myeloma and do not require treatment as yet. I’ve been told at least for another year. However, I am being monitored every two months.

It appears that some of you have been in this position for some time. Therefore will be grateful for any advice on what you are doing in terms of lifestyle, eating, talking supplements and alternative therapies.

Someone also recommended that I go to see Dr Etienne Callebout, a cancer specialist practicing in Harley street who also promotes alternative therapies such as curcumin supplements, etc. Has anyone heard of him?

[Author]

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