annkhoward

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  • #137120

    annkhoward
    Participant

    After treatment with vel/dex in 2015 following initial diagnosis, I had 7/1/2 months before relapse, at which point I had a course of CDT.  Shortly after that finished I tried curcumin .  Although it had a very good effect initially, after a while I had persistent diarrhoea so changed the type of  pill.  The diarrhoea stopped but next blood tests showed stable M band, rising free light chains, falling Ls, ULCs & creatinine.  My consultant interpreted these results as progressive myeloma and proposed starting a new course of treatment, which I asked to delay.  I have now begun taking another kind of pill & in the evening with food, so no side-effects.  I’ll try to report back after March, especially if it works!  If anyone knows what the best kind of curcumin is please let us know.  Excuse abbreviations, trying to be brief.

    #135738

    annkhoward
    Participant

    Hi all: October update on progress:

    Improvement continues and my digestion sorted, I’m now back on 1 Thisylin a day; FLCs are down again and my kidney function is best yet.  My wellbeing is still being helped by the women’s cancer support group at a local hospice, and I’m also getting a great boost from physiotherapy.  The only down side is that my spine is slowly collapsing and bone treatment appears to be off the menu for fear of damage to kidneys – I’ll be asking about this at next clinic. I’ll try to update again in November. (Clinic dates are getting further apart as long as I continue to improve).

    #135159

    annkhoward
    Participant

    Thanks for your response, Mike.  Sorry to hear about the hep c, something I’m ill-informed about.  I’ll read your post more carefully later on, as I’m just off to Bart’s for my regular pre-clinic blood tests. Not optimistic about results this month as I’m still recovering from chest infection/antibiotics, but expect to be back on track shortly and will report back again. Yes, there is definitely a whiff of steroids in your answer…

    All the best, Ann

    #134830

    annkhoward
    Participant

    Update on progress with curcumin: my last blood tests showed that I’m on a stable remission, so the consultant extended the gap between appointments to 7 weeks (previously monthly).  However, after trying a different source of curcumin (‘Curcusorb’), which claims to improve the rate of absorption, I started to suffer severe diarrhoea.  I’ve been looking at Prof. Aggarwal’s blogs and find that others have also had the same problem.  I’m sorting myself out with the help of Penny Brohn’s advice in her book ‘Nourish’ and intend to restart the Thisilyn but on alternate days only.

    At the women’s cancer support group where the others (who are old hands) were discussing curcumin but told me that one needs to get the ‘right kind’.  The member who seemed most au fait wasn’t present at the last meeting & none of the others was able to help, and meantime I can’t seem to find any further advice for the present.  I know that some people have been taking turmeric as a tisane – 2 heaped teaspoons in hot water, and I did try a small quantity which I found unpalatable, and am told that this may be beneficial for general health, it might not be much use in myeloma as the bioavailability may be poor.

    I’ll report back after my next blood tests in early October.

    Sabs, I’m not at all sure that chemo + curcumin would be all that wonderful if the chemo is already causing sickness.  Best check with the doctor anyway – good luck!

     

    #134610

    annkhoward
    Participant

    I’ve read lots of your posts with great interest.  Who was worried about how to get her husband to take his meds?  The results I mentioned were in response to a very low dose of curcumin (1 50mg pill daily) in the form of Thisylin as sold by Holland and Barrett, and I haven’t noticed any side effects; I am currently on NO treatment other than this – I understand that it wouldn’t be good in conjunction with heparin or possibly other blood thinners, or if platelets are low.  Although I was very sceptical about the possibility of its effectiveness, I was happy to give it a go anyway, and glad I did.  Today I’ve found a UK source of tablets in a larger dose with an ingredient added to aid absorption, and I don’t mind being a guinea-pig and reporting back if it helps.  I’ll be posting reports, in any case.

     

    #134516

    annkhoward
    Participant

    Hi Mike – I thought you might like to know that after 8 cycles  Velcade/dex in 2015, followed by 7 1/2 months break from treatment, then CDT I was not feeling too good, so the ‘T’ was dropped and a I had a couple of cycles of just the C&D.  It was at this point I heard the Food Programme and mentioned it to my consultant.  We agreed that a daily curcumin supplement could do no harm, since when that’s what I’ve been taking.  It’s only a couple of months, I know, but so far Free Light chains and Creatinine levels are falling, unlike the immediate rises that happened at the end of my Velcade treatment.  I’ll keep you posted!

    I’m not a very good on-line communicator, but I thought it important that any people who are having any kind of success, however minor, make the effort to report it so we can push for some proper trials.  It seems that this could be one of the safest trials that could be attempted, since as far as I can tell there are zero side effects.

    Best wishes

    Ann Howard

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