[miraParticipant]

I have just been diagnosed with smouldering myeloma. We had plans to travel to Australia via Sri Lanka in early 2019. My consultant is happy for me to do so as long as I take the necessary precautions re blood clots as I believe this is one of the side effects of myeloma.

On one hand I don’t want to put my life on hold, particularly now – but on the other have become nervous about travelling.

Good to hear from others on what your experience has been.

Also what is your experience in terms of travel insurance – no doubt the diagnosis will hike up the costs.

Great to hear experience of others.

Thanks

Mira

[bren123Participant]

Hi Mira
I have just started taking curcumin yesterday , so I am hoping to stay smouldering as long as possible.

I see the trial team in early Nov. Blood urine and other tests especially 24 hour urine test, luckily, I am off work that day!! I see the consultant later in Nov .

I have an annual policy and updated about Smm and high blood pressure, as long as I am not on any treatment for Smm ,I had to pay another £46 for the year.Hope that helps.

Regards
Bren

[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

[debgParticipant]

Hi Mira and Bren,

My husband has just been diagnosed with SMM. We have a trip planned to New Zealand and Fiji in January. Mira, did you find out any more about precautions? Flight sox I guess? Any drugs to carry?

Bren, what does of Curcumin are you taking? We’ve started my hubby on 1mg per day and will move up to 2mg per day after 7 days.

Thanks

[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

[debgParticipant]

Hello Mira,

So sorry to hear you may have to have treatment earlier, I really hope this isn’t the case.

Thank you for the tip about the blood clotting injection, I will ask our doctor.

No one advised us about Curcumin. I’ve read quite a bit and there seems to be some good reviews about it. Also that it can’t seem to hard. Our doctor said she didn’t know anything to be able to advise taking it but she said she couldn’t see any harm. My husband is also eating 6 bitter apricot seeds per day, recommended by a friend with a dormant leukemia.

Wish you lots of symptom free time.

Ps my cousin is a medical nutritionalist and whilst Myeloma isn’t her speciality, she’s looking into it for us. She also recommended a book called Radical Remission by Kelly Turner, I’ve just ordered that.

[bren123Participant]

Dear Mira and Debbie,
Mira, sorry to hear your levels are rising, mine are too,the consultant said as long as blood tests are stable, and not any symptoms that is ok.
Sorry,you have cancelled your holiday.
I have booked a last minute cruise to Amsterdam in the new year to make the most of my time before treatment.
Debbie, I just take a supplement but I had to check first as I am on a trial.
I expect it was a shock for you all, as it was for my family.
Keep positive and keep smouldering
Bren

[debgParticipant]

Hi Bren,

Such a massive shock, we are still reeling and a bit in denial, as thankfully my hubby has not symptoms.

Hope you all keep smouldering

Deb x

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