Hi, I'm first time responder. ET since 2006 w/no meds until 2012 when I moved to another state and because platelets were 758K, my new hematologist started me on Anegrilide. After 5 years. I've now been changed to Hydroxyurea (because long-term Anreg can cause bone marrow scarring). So far (6 mos)no side effects. I was told by my PC that this disease was not caused by what I ate and what I eat will not cure it! Eating a healthy diet had been drilled into my head all my life and I can't just ignore the common sense of trying to eat a balanced diet! For two weeks I have been taking 1 teaspoon each vinegar and honey in water, and continuing to eat as healthy as possible. Has anyone tried, or studied the effects of Curcumin? Would love to have an alternative to these chemicals! Long text but wanted to weigh in and tell you all how much I've learned from all of you and wish you the best from Virginia, USA!
Curcumin tried?: Hi, I'm first time responder. ET... - MPN Voice
Curcumin tried?
Hi Saine, , don't know if you've tried typing curcumin into the search box on here but it should throw up all threads to do with this as I'm fairly sure a few have tried it. I think a balanced diet is the way to go ( some would say a burger in each hand was my idea of a balanced diet but not so). And I can relate to your desire for an alternative to drugs. Whether anything is as effective I don't know.
There is a place called the Gerson Institute which offers non toxic alternative to treat cancer. Had I been better off financially years back when diagnosed I would of been interested.
Good Luck -Chris
Thanks Chris! Any bit of info is helpful in my search for healthy alternatives!
Best Wishes -Saine
I was on Hydrea for 4 years with good results except for itching. I have finally switch to the expensive Jakafi and am doing much better. No itching ever.
Hi, I've taken curcumin tablets for 2 years with no improvements then on to organic turmeric in a daily drink, still no improvements. My consultants have told me apart from a healthy diet nothing I eat or drink will make a difference. Good luck, F.
Hello Saine,
I was diagnosed with ET with JAK2+ at age 60 in November 2016. I did not have any symptoms and I have always enjoyed good health but I was overweight, nearly 16st. The diagnosis was a wake-up call, I realised that I was not as healthy as I thought and on my way to becoming quite ill with all the systemic diseases that go with old age. I went to see a herbalist who told me that my gut is inflamed, she gave me a herbal lymphatic cleanse and told me to go on a diet of no coffee, tea, sugar, dairy and gluten for 30 days. I did this and for the first time in my life I started to lose weight effortlessly. I lost 3st and I also started to go for a 45 minute walk every day. All my friends tell me how well I look and I do feel really well. I still have one stone to lose and that is not budging. I now do yoga as well and aerobics and during the warm months I walk bare foot on the grass in the nearby park. As for vitamin supplements I have tried all sorts, gone over the top with it but a private doctor told me to take Eskimo Brainsharp fish oil, methylated B-complex, vitamin E and a probiotic. It would be useful if you could visit a functional medicine practitioner. I don't think all this healthy eating has made much difference to my platelets but I certainly do feel almost fantastically well. I don't have any digestive issues, the flatulence and acid burn is all gone. Now I am trying a different approach, I am looking into alternative therapies, I have spectrum colour glasses and whilst I go for a walk in the park, I wear the purple glasses. My herbalist thinks they may help me to improve my immunity. It is all very experimental but it just might work, it has to be tried. There is still a lot more that can be done. I am thinking of cutting out the grains and seeds from my diet if that may help me lose that fat around my middle.
I have been taking curcumin daily for about 9 months. It appeared to lower my platelet count slightly, though it could have been coincidence. My usual range was around 350-400, but it went down to 265. My new haem reduced the hydroxy and it increased to 330. She reduced my dose further and I am now due for my next check up, so we will see what happens. However the best thing is that since taking curcumin the pain from arthritis in my feet and ankles is hugely improved! Karen
I was interested to read your post about curcumin ---I'm taking hydroxy, and my platelets it was felt were too low, so my dosage was decreased and immediately I'm zipping up so I'm back to the original dose, Anyway, back to curcumin - how much do you take - it would be a pill right? Have you had any side effects? Thank you.
I take Aava Labs capsules from Amazon. They recommend 2-6 capsules daily - I take 4, 2 morning and two night. I have never had any side effects.
Karen
Thank you very much for the details and I'm pleased to hear no side effects. Good wishes, Jean
Hello Saine 1! I live in Scotland and I'm male 76yrs.of age. I take hydroxycarbamide 1g once a day and have blood tests 1x 6mths. I don't always feel good on it so now and again I will stop taking it completely. Once the B/T shows platelets have crept up I will re-start the medication and sometimes it will be at just 500g for a while. I don't suffer as a consequence of this action and I'm always in communication with the consultant. This arrangement works for me and I don't have a weight problem. You must do what's best for you but also listen to your consultant. Lichtie 1
While dipping in and out of hydroxy may not appear to giving you any problems, it may make you more disposed to myelofibrosis along the line. Does your haem have a view on that?
Hi, I take curcumin and turmeric. When I’ve finished the bottle I won’t replenish it. I do take B12 supplements though and all though I don’t feel any different my B12 levels are very good.
We are all different. You never know. No harm in trying.
Thanks for your comments. I have been taking B6 for 25 years as it keeps me from feeling bloated. Something that truly works for me! In the past week I have had both wrist xrayed (tendonitis in left and arthritis in both at base of thumbs). Then yesterday x ray on knee with fluid/swelling and suspected arthritis. Of course, question Hydroxy but PC says joint pain is low on list of side effects! I go to hemo Thurs so will see what she says! Anyone else feel like they are falling apart!! Good wishes to all who have responded to my Curcumin text. Hang in there!
Curcumin
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