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Transfusions and Iron Overload Blood and platelet transfusions, iron testing and treatments

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  #26  
Old Tue Jun 28, 2011, 01:31 PM
Lbrown Lbrown is offline
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Wow. I thought $3300 was bad. My doctor thinks the price listed is just "marketing". I don't know how anyone affords it, even with insurance.
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  #27  
Old Wed Jul 20, 2011, 04:11 PM
Alice P Alice P is offline
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Success with Wheatgrass

My husband has been receiving red blood cell transfusions for a year. His ferritin level in February was 1452. At the end of May it was up to 3890. He is unable to take Exjade because his MDS is high-risk and because his platelets are way below 50,000. Based on research done here on the forums and at mdsbeacon.com, he began taking wheatgrass pills in early June. He started with tablets but, due to the unpleasant taste, switched to 6-400 mg capsules of freeze-dried wheatgrass (the equivalent of 30 ml) per day. By June 23, his ferritin was down to 2613. Today, it is 451.5. These results are much better than expected, and we are amazed at how quickly the capsules worked. The cost works out to about $50/month.
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Alice, wife of John, diagnosed MDS RAEB-1 5/10. Tried Vidaza, ON 01910.Na (at NIH), & Vidaza + Revlimid with no effect. Progressed to RAEB-2. Supportive care only from 9/2011 until death 1/26/12.
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  #28  
Old Thu Jul 21, 2011, 03:20 AM
akita akita is offline
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Hi Alice P.,

there are existing studies on wheat grass effects, including iron chelation and - in relation to MDS - also touching the question of hematological improvement. For quantities who have been taken in by patients during the studies, please, look on my last posting in this thread. In my opinion this could be problematic point, because wheat grass differs in his (chelating) capacities depending on the age of the harvested grass and the climate where it grows. So you would not be able to be sure that - as you reported - 5 x 400 mg capsules would be the equivalent of 30ml of fresh wheatgrass. In Study 1 reported in the abovementioned thread children from 8+ got 8 x 500 mg = 4000 mg wheat grass tablets daily, and in the studies where they used fresh wheat grass the quantity was from 30 ml 2 times a day to 100 ml. Where did you get the information about the equivalent quantities you mentioned above?
I tried to correspondend with hematologists, recently wrote an email to Dr. Raza Azra with the compilation of studies i found on wheat grass, but i could not get any contact. The institutes in calcutta did not answer and there is no email indicated in the study. Also i tried to correspond with the corresponding author of one of the thal-studies, but did not get an answer. The reason for that could be in the fact that i am no medical doctor (juridical doctor) and that i was not consequent with that correspondence; never sent a "normal" letter..

It would be desireable to get better informations on wheat grass use for patients with MDS who cannot tolerate Exjade.
Could your doctor help?
From where did he/she get the infos about wheatgrass?
Recently i googled it but could not find younger studies.

Please look at the MDS-Study. The quantities of fresh wheat grass juice used there were 2 - 3 time higher than your equivalent. But maybe there are existing more experiences by treating hematologists:The time of the MDS-Studiy presented at the ASCO 2009 was only for 6 months, and many MDS - patients have to take a chelator for a longer time. There have not been reported considerab side effect,- but this should examined in the long term use. Also it could be important to know that "the west" seems to harvest wheat grass - which is known to be helpful for several health reasons- when it is already so old that its iron chelating properties have already decreased. For the best effect it could be helpful to take - if tablets or powder are used - very young wheat grass for the tablets or powder!

Miles to go - miles to go... these where the last words in the presenation to the wheat grass study MDS ASCO 2009. I guess the Indian Institute in Calcutta, member of INCTR would be very happy to get funds to be able to develop a "real" iron chelating medicament with the active wheat grass components, for which further chemical analyzes seem to be necessary. As long as the composition varies, such tablets, powder, capsules and the juice only are sort of natural products; alimentation..

Hope i could help you

Akita

http://www.thalassemiapatientsandfri...ic,3750.0.html
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MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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  #29  
Old Thu Jul 21, 2011, 03:12 PM
Greg H Greg H is offline
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Quote:
Originally Posted by akita View Post
Also it could be important to know that "the west" seems to harvest wheat grass - which is known to be helpful for several health reasons- when it is already so old that its iron chelating properties have already decreased. For the best effect it could be helpful to take - if tablets or powder are used - very young wheat grass for the tablets or powder!
Hi Margarete!

I noticed, when buying US-grown wheatgrass that, as you say, it tends to be significantly older than that used in the studies. But I haven't seen studies that indicate the chelating potential decrease with age. Have you run across articles that suggest this?

Thanks for your posts on the subject. They are always great food for thought.

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #30  
Old Thu Jul 21, 2011, 04:11 PM
Alice P Alice P is offline
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Wheatgrass Capsules

Hi, Akita -

I didn't do any scientific calculations to determine how many capsules John should take. I relied on the description I found at GNC.com for Eclectic Institutes Freeze Dried Wheatgrass that stated that 3 of their capsules are equal to one ounce of fresh juice. Since the India study used 30 ml of juice, and 30 ml is approximately equal to 2 ounces, I came up with the 6 caps/day dose. Our hematologist was unaware of the chelating properties of wheatgrass, but he is thrilled with the results we've experienced.

Alice
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Alice, wife of John, diagnosed MDS RAEB-1 5/10. Tried Vidaza, ON 01910.Na (at NIH), & Vidaza + Revlimid with no effect. Progressed to RAEB-2. Supportive care only from 9/2011 until death 1/26/12.
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  #31  
Old Thu Jul 21, 2011, 04:20 PM
Alice P Alice P is offline
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Correction

Ha! I thought I'd better recheck my calculations after posting (should've thought of this before), and it turns out I've been wrong. 30 ml is about one ounce, so three of the capsules daily should do the trick. Six sure did work quickly, though!
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Alice, wife of John, diagnosed MDS RAEB-1 5/10. Tried Vidaza, ON 01910.Na (at NIH), & Vidaza + Revlimid with no effect. Progressed to RAEB-2. Supportive care only from 9/2011 until death 1/26/12.
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  #32  
Old Thu Jul 21, 2011, 06:43 PM
akita akita is offline
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Hi Greg,

on Slide 10 of the presentation belonging to the MDS Asco Abstract 7012 you can see the changes in iron chelating qualities of fresh wheat grass in the process of growing.

http://www.asco.org/ASCOv2/MultiMedi...sessionID=3112

Slides 18 and 19 show a comparison of the iron chelating qualities of DFO and wheatgrass.

I tried to find out the theoretically best "age" of fresh harvested wheatgrass for the purpose of iron chelation. Believing that the content of the presentation is realistic, i asked different sellers of tablets or powder, how old their wheatgrass had been at the time of harvest Only one seller (an Indian, mentioned in the Thalassemia Patients and Friends Forum linked above) told me that his wheat grass was harvested when 5 - 7 days old. This seller has delivered wheat grass tablets to Indian hospitals for the purpose of studies, as mentioned in one of the studies and also assured be him (you can call him by phone) His wheatgrass tablets and powder are more expensive than the products taken from older wheatgrass. (There exists an old Indian tradition with wheat grass use.

A German seller proudly told me that his wheatgrass tablets had been produced from wheatgrass "in the jointing stage" and it would have been 17- 21 days old . But "in the jointing stage" it should be already 7 - 10 inches or 17,78 - 25,40 cm high as described in the following link, and so supposedly older than the wheatgrass used for the Indian MDS-Study 2009.

There seems to be still no knowledge "in the west" among the sellers concerning iron chelating properties of wheat grass; They sell it for other health purposes and take - in my experiences from phone calls and web-informations - older wheat grass as used in the Indian MDS Study for that.

"Jointing stage" : http://www.nutrigrass.com/jointingstage.htm

Thanks for the roses, dear Greg. Hopefully that i could answer your question.

Akita
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD

Last edited by akita : Thu Jul 21, 2011 at 07:07 PM.
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  #33  
Old Thu Jul 21, 2011, 10:43 PM
slip up 2 slip up 2 is offline
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we have gotten our frozen wheatgrass from Dynamic Greens, they ship frozen...
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  #34  
Old Fri Jul 22, 2011, 09:26 AM
akita akita is offline
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Hi Alice P.

"Since the India study used 30 ml of juice, ...."

You have seemingly read this on the MDSBeacon Webside. Please notice: In the abstract they write about 30 ml of juice daily; but in the presentation, Slide 7, a quantity of 30 ml fresh juice 2 - 3 times daily is indicated. No pure juice, but in "aqueous solution" containing the juice made from 5 grams of leaves each including the stems. Here in the presentation the leaves are reported to be 7-8 days old.

It would be useful to get precise details from the study authors...

akita
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MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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  #35  
Old Fri Jul 22, 2011, 09:40 AM
akita akita is offline
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@ slip up 2:

On the webside of "Dynamic Greens" there is a link to the laboratory which made the analyses. I suppose,these analyses have not been undertaken to find out the iron chelating qualities of wheat grass, but instead the nutritional components, vitamins, enzymes; precious for the mainstream, but not specific for iron chelating qualities..

The indian MDS Study reports that "Wheat Grass juice consists of two noble active ingredients with structural resemblences of chlorophyll, but do not have Mg +2 in a central position of protoporphyrin. These two ingredients might be responsible for iron chelating activity." (Slide 12).

It seems not to be easy to find out which ingredients exactly do the iron chelation; and they have not been tested exactly. This costs money.. It is a long process from a natural product to a medicament approved by school medicine, because it is necessary to know the exact active components and their concrete quantity in one pill etc. to undertake scientific studies...and, one day, finally obtain a registration for that..
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Margarete, 54, living in Vienna, Austria,
MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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  #36  
Old Fri Jul 22, 2011, 02:08 PM
Greg H Greg H is offline
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Quote:
Originally Posted by akita View Post
This seller has delivered wheat grass tablets to Indian hospitals for the purpose of studies, as mentioned in one of the studies and also assured be him (you can call him by phone) His wheatgrass tablets and powder are more expensive than the products taken from older wheatgrass. (There exists an old Indian tradition with wheat grass use.
Hi Margarete!

Thanks much for the link; I remembered seeing this before, but had lost it. Now I have done a screen capture of the slides so I can save them. They do show a distinct advantage for the younger plants.

And I have found from Western sellers just what you have: they harvest in the jointing stage, presumably because they are interested in values other than chelation.

I have considered growing my own wheatgrass, but I lack an appropriate space that would be suitable year-round.

Take care!

Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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  #37  
Old Fri Jul 22, 2011, 02:58 PM
Lbrown Lbrown is offline
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According to wikipedia, it is siderophores that bind to iron. That's what desferal is made of, apparently.

Looks like it could be dangerous for people with low iron to take a lot of wheatgrass.

Deb
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  #38  
Old Sat Jul 23, 2011, 05:08 AM
akita akita is offline
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Hi Deb,

it would be really necessary to get more informations from the scientists who undertook the studies on wheatgrass - also for palliative use in other disorders, for thalassemia and other health reasons. I suppose your question has been answered by medicine. Also at least the institute in calcutta which undertook analyses can give more informations which are necessary to undertake further studies in the west. I found an article on MDSBeacon yesterday (thanks to AliceP.), seemingy interested in more details to the MDS-study on wheat grass. My computer did not function sufficiently, but i hope to be able this weekend to transport my informations resp. collection of studies on wheat grass to the authors of the article.. Wheat grass should not become an object of confusion between the patients and it could be helpful to repete the indian MDS-study on wheat grass.
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MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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  #39  
Old Sat Jul 23, 2011, 05:15 AM
akita akita is offline
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Hi Greg,

there are a lot of videos on home-growing of wheatgrass on youtube!

The use of wheat grass has a very old tradition especially in India, Ann Wigmore only gave it a revival in the west in the 1940ies (?): I have ordered her main book on Wheat grass, and it does not inform about the use of wheat grass for iron chelation. I guess, Ann Wigmore did not know about this function of wheatgrass and could not know about the nedd for it, as iron chelation for thal- and Mds-patients seems to be younger

There are existing older articles on wheatgrass, not focussing on iron chelation or even mentioning it. It seems difficult to get approach to these articles. Rests the question, if it is necessary to reread them now, as they probably do not examine the components recently found by the ASCO-MDS-study.

Kind regards, Margarete
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MDS/AML M2, diagnosed 9/2007, then Chemos, aSZT 4/2008, chronic GVHD
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  #40  
Old Tue Feb 23, 2016, 07:56 PM
LeAnnD LeAnnD is offline
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Taking Exjade with only one kidney

I hope this reaches someone. All the other posts are so old that I'm not sure if this site is reliable!

I have MDS, Less that 5% blasts, RARS. Dr says I am low risk. I get monthly PRBC. I tried Aranesp injections and they didn't work so I take no medications at this time. My last transfusion was Feb. 12, 2016.

I am currently on every 3 months visit to my hematologist and will go back on March 3rd. The last visit in November the Dr suggested the possible use of Exjade if my ferritin levels continue to rise. At that point they were at 972. I realize this is not a dangerous level but with 3 transfusions since November I expect they will continue to rise.

I am a kidney donor so I am left with only one kidney. Like others I am concerned that this drug will affect my creatinine levels and I cannot afford at this point to start having problems related to kidney damage. Has anyone else had any experience with this problem? Also like others I have heard that Wheat grass is a natural iron chelation and have been taking 1200 mg capsules of wheat grass daily for the past month and a half. I am interested in seeing if it will have affected my ferritin levels at all. If there is only a slight increase in my levels then I will know it is working a little bit.

I would really appreciate hearing from someone on this subject to see if anyone has face this particular issue. Thanks in advance!!
LeAnn Duke
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  #41  
Old Wed Feb 24, 2016, 09:53 AM
Marlene Marlene is offline
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Hi LeAnn,

I can certainly understand your concerns on Exjade with having just one kidney. I don't recall anyone in your exact situation and all I can offer is the what John experienced and how we dealt with some of it.

Even though John had both kidneys, they got pretty compromised from his treatment. The anti-fungal and antibiotics took a toll on his kidneys and liver. He also had a very high iron level from numerous transfusions which also takes a toll on your organs. So he really had to watch how his kidneys handled the Exjade.

Exjade was very difficult on him. He could never tolerate a full dose and would have to stop every three weeks and take a break. He would get so nauseated by the 3rd or 4th week. Many times, with the iron chelators, side effects are dose dependent and just by reducing the dose, they clear up. So before beginning any iron chelation therapy, John would get his baseline blood test for liver and kidney function and eye & hearing exam. From there, he would start on a lower than normal dose for his body weight. He would stay on that for one month, get his blood work checked and the up the dose until he got to his tolerable dose.

He was able to be on the Exjade for quite a while without it impacting his creatinine levels. But eventually, we saw his creatinine start to creep up. When this happened, he would take a break until it normalized and then start back up. But we saw that his kidneys were not happy with Exjade for much longer. Even after reducing the dose. Luckily, his HGB got high enough that he was able to stop it and start therapeutic phlebotomies.

In your case, I would consider starting on a low dose to see how you do. Maybe monitor your blood work weekly for the first month then monthly after that. You may not be able to reduce the iron but instead keep it rom rising. If I recall, they usually don't consider starting chelation until your FE is at or above 1000 for two or three test results. But that may be old thinking.

Marlene
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