[MikejanulewiczParticipant]

Hi

Reply to Susie.

Re ct/mri. If your paraprotein levels are rising, then the team will likely start treatment based on this only, without the need for any imaging. Some people have a type of myeloma where the paraprotein level doesn’t rise in which case regular imaging can be helpful.

On a personal note though. I find it useful to know how bad my back is, so I’ve generally had an mri every 2 years. the Oma team have always been happy to arrange this. I have never felt that cost has come into it.

Good luck with everything.

Mike

[ianpitcairnParticipant]

I was diagnosed in 2016 here in France, and since then have had two periods of Carfilzomib during which my lambda peak reduced. Am now on Ixazomib in the 5th 28 – day cycle and the peak seems to be rising. I saw the article in the BMJ about the woman whose chemo ceased to work and who moved to 8 gms (8000 mgs) daily of Curcumin and after 5 years the MM is stable. So, I have started (6 weeks ago) taking Just Vitamins, 10 gms pills daily along with the Ixazomibib. I have the OK from my consultant, although he says it is all poppycock and not get my hopes up! Just had a blood test this morning and have a consultation in Sept. Any thoughts anyone?
Ian

[docmikeParticipant]

dear Ian
You have nothing to loose and everything to gain if cucurmin works against your myeloma .
michael

[janwParticipant]

Hi Ian

So sorry to hear your Lambda light chains appear to be rising whilst on Ixazomib. It’s always worrying when the myeloma levels begin to increase during treatment. I’m currently on my third line treatment of Ixazomib, Revlimid and Dex (IRD) but unfortunately because the treatment requires daily blood thinning injections, I’ve had to steer clear of taking Curcumin which apparently can magnify the effects of anti clotting medications and having your blood too thin can be dangerous. It’s something to consider if you are also on blood thinning medication with Ixazomib. Curcumin can also decrease platelet function and my platelets are steadily decreasing on this treatment from 150 to around 60 – 70.

Several months after my first SCT in 2010, I developed shingles which increased my Lambda light chains by around 400, but the light chain levels did slowly decrease a few months after the virus, however they remained slightly higher than before the outbreak of shingles. I’d experienced the same increase and decrease in light chains after a cold virus, which also slightly raised the light chain levels once the virus had cleared. After reading Margaret’s myeloma blog on Curcumin, I started taking 8 grams of Curcumin on a daily basis which I continued with for four years until the myeloma relapsed in 2015. I also continued with daily Curcumin during my second line treatment of VCD followed by second SCT in 2016. Unfortunately 12 months after my second SCT I had a cold virus which triggered the start of a steady increase in my Lambda light chains which eventually climbed from around 100 at the 12 month stage after SCT to 3000 over the following 8 months resulting in me starting IRD in May 2018.

Curcumin is definitely worth trying, but just do some research on whether it will interfere with any of the various drugs you are taking on your treatment regime.

Jan

[mulberryParticipant]

I have been using curcumin with bioperine (Dr best 1000mg) for just over a year now. I follow the protocol outlined in a blog produced by someone who has had smouldering myeloma for many years, Margaret’s Corner. I take 8g per day (all at once).
Of course I can’t say for certain what effect it has had on me, but it did reduce my paraproteins prior to me starting induction therapy and my disease is now inactive (probably more accurate to say that than ‘in remission’) and I feel fraudulently well, able to get on with life.
If you are thinking about taking curcumin, do talk to your consultant. Some go along with this, others aren’t keen, but they do need to know what medications we are using.
Some curcumin supplements contain more of the active ingredients than others. If you find cheap supplements, check very carefully, you may not be getting much curcumin.

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