[Margaret Bederaux-Cayne]

Thanks for the input Kathy. It will take a few weeks to get confirmation from our insurance plan & the other patient plan that covers the balance. Thankful we get help to pay for this. My Hubby is still taking high doses of Curcumin, hoping to reduce the ferritin levels before he starts the Jadenu. It went from 1998 – 1766 when he first started the curcumin, but the last test was 1977. He gets it tested again on November 15th. Hopeful it will be down. He does have blood transfusions , 2 units, every 2 weeks.

[Margaret Bederaux-Cayne]

Kathy & bobby:
After my Hubby’s blood transfusion last Friday, his Hemoglobin today, Wednesday, came up to 92.0 g/l (from 79.0 last Wednesday), Hematocrit up to 0.28 L/L (from 0.24) RBC count up to 2.8 x10*12L (from 0.24), WBC 5.0 normal, Platelet count 38.0 low. Out of 27 tests, he had 17 abnormal…
On one of the other threads on this message board, I read about a few people using large doses of Curcumin – @ 3000 mg – to reduce the ferritin levels, from extremely high counts. Checking back today, his ferritin level on Aug 7th was 1998 count & actually, on September 26th, after having 2400 mg of the curcumin for @ 1 week, it had dropped to 1766 count. I, also, stopped getting vitamin supplements with iron & no added vitamin C (carries iron) for him, we use a lot of chicken, instead of beef (maybe 2 x a week). 33 mg of Calcium – with Magnesium, at night – blocks iron. Now he has been using the curcumin regularly 1200 mg 2x per day & I just called the doctor to see if they will do another ferritin level next Wed. – it takes @ 2 weeks here to get that test back. The approval for him to get the Exjade just came in & we have put it on hold, until we see if the Curcumin has reduced his levels more…. Info says, if you are susceptible to kidney stones, the curcumin can cause them, but taking the Exjade, there are many other unpleasant side effects that I have read about.
I know if you use Turmeric in cooking & to make that wonderful “Golden Milk” – I drink it before bed, if I think I won’t have a good sleep – warm milk (I do use 2% – not recommended on the recipe…), with turmeric, black pepper (helps the turmeric work), I add cinnamon & if cooled down, can add honey (heat destroys the good things in the honey).
bobby, thanks for the info about the quercitin, because I know Turmeric & pepper(s) work together, so, didn’t know how to do that with the Curcumin capsules.
Now, from another thread on this message board, I have been trying to come up with Papaya Leaf Tea/extract, from around where I live, as a few people have said it can raise your Platelet levels – which he needs… I know I can get it on Amazon, but would like to find someone close to home – we live in Windsor, Ontario, Canada, right across the river from Detroit, Michigan – I am going to see if my Daughter can come up with a supplier in that area – she lives just outside of Detroit.
This message board is great – so helpful!

[Margaret Bederaux-Cayne]

Let me know what results Thank you

[Margaret Bederaux-Cayne]

My Hubby was diagnosed, January this year, but low counts for 3 previous years – doctors didn’t know why – some unknown auto-immune disorder… Intermediate 1, low risk, but with all his counts low, only 3 % blasts, at that time. His White cell count has moved int the normal range, but he needs blood transfusions every 2 weeks & his platelets are extremely low. He started using the high doses of Curcumin & the Oncologist was surprised that his Ferritin level had gone from 1998 a month ago, to 1772. We are sure it is due to the Curcumin & he is looking at increasing it slowly to see what happens for the next test. He, of course, is in a “Wait & See”, with no medication for him. We use Essiac Tea, wheat grass shots, beet juice with garlic, many millions probiotic & other vitamin supplements, too. I have been getting him vitamins with no iron in them & stopped giving him vitamin C, as it carries iron. Also, he takes 1,000 calcium & 8,000 D3, at night, as they hinder iron. I am looking at getting him the Papaya Leaf Tea/extract, that someone on another board mentioned to increase his platelet levels – hoping it will work. He does not bleed – when they remove the needle from the transfusion or for blood sample, in a minute, you cannot see where the spot the needle was inserted.He has not lost any weight & his appetite is excellent.
Wondering what people do for fatigue. He is so very exhausted all the time & cannot do very much. He has not been able to work at his business & is very frustrated. It involves going up & down ladders & he works mostly alone – it is his own business. Also, he wears a mask & gloves whenever we go out & a mask & gloves for anyone who comes to our home. He is so very scared of picking up any colds, etc & avoids family gatherings, etc. Does anyone else do this??? I would like him to participate more, but he’s afraid of getting sick & not being able to fight it off. Thanks for sharing info.

[Margaret Bederaux-Cayne]

Kathy, Where would you get Papaya Leaf Extract. or Papaya Leaf Tea????

[Margaret Bederaux-Cayne]

Hi Amy & everyone else – My Husband was not diagnosed for 2 1/2 years – they said it was some unknown thing destroying his blood, as soon as it was released into his system… so, a bone marrow biopsy, last Dec. showed it was MDS, Intermediate 1. All of his Red cell, white cell & platelets were extremely low. He has been having 2 units of red blood, transfused about every 2 weeks. Our Canadian measurements are slightly different – add a decimal place I think. His RBC is usually @ 97, after the transfusion, dropping in the week to 86 or lower – transfusions are done here when it drops 85 & below. He just had his ferritin levels done a month ago & it was 1998…We are waiting for a confirmation to get Exjade for him. Amy, I use turmeric all the time for cooking & would really like to know how much & how often your husband took the turmeric. I have looked at different bottles of it & wasn’t sure amounts for reducing the iron. Thankful to have found & be able to be with this group.

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