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Alternative Treatments Complementary and alternative medicine; natural and holistic approaches

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  #1  
Old Fri Nov 12, 2010, 11:31 AM
akita akita is offline
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Wheat Grass Study ASCO 2009

Hello,

my name is Margarete, 53, living in Vienna, Austria, Europe, and i am a new member of this forum.

As an MDS Patient after transition to secondary AML M2 i was transplanted in April 2008. Motivated by my own iron-overload that accumulated 2007/08 during my chemotherapy and the Stem Cell Transplantation i was looking for an alternative iron chelator for me, as i would not get one from hospital actually, because my actual serum ferritin is not more than 1000 ng/ml and i have still immunosuppression and other medicaments that hinder phlebotomy. I read that it might cause extra infections also after stem cell transplantation, if your iron-ferritin is on more than at the normal level. My ferritin after the chemos with 25 transfusions was about 1500 ng/ml, after 16 days of Exjade -then i had to stop for the transplantation - it was about 1200 ng/m. Then i got 8 more packs of erys during the transplantation period. The MRT before the SZT constated, that my liver had already a weaker signalizing/iron overload. Two months ago i had 555 ng/ml ferritin (but the rest of the iron is still in my body), and then i started with one small spoon of soluble wheat grass extract in tea or juice daily. i bought this ordinarily on Ebay in a 1 kg package for 25 Euros plus shipping. Three days ago my ferritin was only 400ng/ml!

I tried the wheat grass because of lack of other iron chelators after i read some wheat grass studies, one with mds patients.

Below i send you the link to the study-abstract. Please notice that on this webpage there is a link "associated presentation" when you scroll down under the abstract. Under this link there you find some presentation slides from one of the authors of this study at the ASCO 2009 which provides extra informations. E.G. it is planned to research for a "school medicine" with the wheat grass components, what will last "miles for miles". Actually Wheat Grass helps not every person in a standardized way like the common iron chelators and so it`s not reliable enough to replace normal iron chelation. But maybe it could help additionally taken?

Please read the study and the associated presentation for your information! Hope this helps in some constellations of transfusion-dependency.
http://www.asco.org/ASCOv2/Meetings/...stractID=33788

Best regards,

Margarete

Last edited by akita : Fri Nov 12, 2010 at 11:52 AM.
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  #2  
Old Fri Nov 12, 2010, 12:18 PM
Marlene Marlene is offline
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Thanks for the info on wheat grass. We'll have to give it try. John is so tired of getting phlebotomies. His serum FE is close to normal so this may be an option to get him to a normal level and stop phlebotomies.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of January 2017, FE is 233, HGB 11.7, WBC 5.1/ANC 4.0, Plts 146K.
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  #3  
Old Fri Nov 12, 2010, 12:32 PM
Greg H Greg H is offline
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Seriously Cool!

Margarete!

This is just about the coolest thing ever! Even if it doesn't work for everyone, it's certainly worth a try.

My ferritin is only slight above normal at this point, since I've only had a few transfusions. But I'm going to go ahead and try this before ferritin starts to climb.

I've never had wheat grass, but, if it tastes bad, I'll just add it to my green tea. Nothing could possibly make green tea taste any worse than it already does.

I hope Birgitta sees your post; I think she has some iron overload and would find the fact that this is backed up by research very interesting.

What sort of extract did you use?

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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  #4  
Old Fri Nov 12, 2010, 04:26 PM
akita akita is offline
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Quote:
Originally Posted by Marlene View Post
Thanks for the info on wheat grass. We'll have to give it try. John is so tired of getting phlebotomies. His serum FE is close to normal so this may be an option to get him to a normal level and stop phlebotomies.
Hi Marlene, that seems to be a quite similar situation to mine. Except the fact that you husband has already begun another therapy. Could you imagine to talk to the doctor/hospital where he gets the phlebotomies and to propose to take wheat grass additionally to the current therapy? Could be that his rest of iron load diminishes faster then and he does not need to come so often to phlebotomy as otherwise expected.. ?

Wheat grass is actually not an medicine but a sort of nourishment. It could happen, that it does not help at all. - The studies i know don`t give really answers to such a question.

One fact is the problem, that there exist wheat grass tablets, powder, extract, spray, fresh juice from home-gardenend wheat grass,capsules..

All these might have different concentrations and slightly varying compositions. For the iron chelating properties wheat grass must be very young. In the abovementioned MDS - Study they tookfresh juice from 5-7 days old plants inclusive stems (so in the abstract) In the presentation there is a slide with a diagramm which shows that 8 day old plants have the best iron chelating property. It depends perhaps on where you begin to count the days..
What concerns the "aqueous soluble wheat grass extract" mentioned in the study, we still do not know where the study-center bought it. It would be helpful if somebody of the study-centers involved would tell it. It would be important to have a correspondence with then. Email seems not really possible. A letter, that i wrote to one of the institutes in Calcutta, has no answer till now..

Tablets seem to be of different consistence. There have been two recent studies for patients with Thalassämia Major where the patients took wheat grass tablets, seemingly from different provider firms. The unsuccessfull was first, and after then - in 2010 the newer study was published, - successfull. They indicated the firm from where the tablets are, in their clinical review. These studies with tablets had a duration of one year. It seems that fresh wheat grass juice works faster.. I will send you this thalassaemia study with the link to the review in another posting. Additionally it should be cleared how much of the tablets - in case you would consider to take that - have to be taken. The patients from the indian study from where we know the enterprise from where the clinic bought the tablets were young - mostly children - the number of tablets should be counted in another way for adult "westeners" with much more bodyweight as they had.

Altogether, i would not very much welcome if somebody stops any chelating therapy in favour of wheat grass, feel unsure having adviced such strategies.

It would be wonderful

- To have the opportunity to discuss this issue of wheat grass on a broader basis here or perhaps in other patient forums so that there finally would be more information for all

- To write down our experiences with wheat grass in some form of study, and ift would not more as an internet formulary.

- Perhaps somebody wants to talk to his/her hematologist? I did it already tuesday in Vienna, sent him an email with a collection of the studies i found and asked him to help me with some study. i dont know when he will have time to read the studies, which are extra voluntary work for him, and what will be his answer..But i know also other hematologists in Vienna. Only don`t know to what extent they are too much involved in actual iron chelating studies..

Best regards,

Margarete

Last edited by akita : Fri Nov 12, 2010 at 05:29 PM.
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  #5  
Old Fri Nov 12, 2010, 05:03 PM
akita akita is offline
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Greg!

I've never had wheat grass, but, if it tastes bad, I'll just add it to my green tea. Nothing could possibly make green tea taste any worse than it already does.

You are right! But it`s healthy!

For me wheat grass juices tastes like spinach, but i mix it with water, herbal tea and a little bit of fruit-juice, and from one heaped (?) tea-spoon i make a 0,25 liter drink.

>I hope Birgitta sees your post; I think she has some iron overload and would find the fact that this is backed up by research very interesting.

I hope, too. And if not, i would post it per private message to her (is this possible?)

>What sort of extract did you use?

Oh, thank you for asking me! There might have been occurred an error. I looked now at the ebay.at site and saw, that my "provider" sells "wheat grass powder." I thought it would be a sort of "aqueous soluble wheat grass extract" mentioned in the MDS-Wheat-Grass-Study..Maybe the study meant also a powder and they only wrote of an extract.. Definitively i have a wheat grass powder and not an extract. Extract would be a liquid solution..

My provider:

http://myworld.ebay.at/bienenschwarm...naturprodukte/

The product:

http://cgi.ebay.at/1kg-Weizengras-re...item335041e23c

Before i ordered i asked him per phone, how old the wheat grass plants were at time of harvesting. I told me, that they were 21 days old and that this would be the time when they have a maximum of healthy components.

Much older than the few days indicated as an optimum for iron chelating property in the MDS-Study.. In spite of that it seems to help.. Lets see how that goes on..

Also i looked in the internet for "younger" wheat grass powder/extract. A chinese trader would have sold me powder (oder extract? i made a mistake) 1 kg for 67 Euros plus Shipping, 14 cm high at time of harvest, - "younger" than my powder, but estimatedly not as young as mentioned in the study presentation..

In addition, they took also the stems of the young wheat grass for the study!
This you won´t get by an enterprise, you would have to do it by yourself..

You can get this sort of powder what i use, on ebay.com, cheaper as i did. Perhaps it is useful to ask how old the wheat grass was at time of harvest, for "study purposes"

Wish you the best,

Margarete
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  #6  
Old Fri Nov 12, 2010, 05:24 PM
akita akita is offline
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Thalassemia Wheat Grass Study 2010

This is the link to the successful study of 2010, where the probands took tablets Duration: 1 Year

http://www.ncbi.nlm.nih.gov/pubmed/20135271

Clinical Review:
http://www.springerlink.com/content/...8/fulltext.pdf

Citation with Enterprise:

"They were given wheat grass
tablets(R. J enterprise, Pune, Maharashtra, India.
www.greenheartindia.com )on empty stomach at least
for a period of one year from January 2005 to December
2005 in the dose of 2-3,6 and 8 tablets per day in
divided doses in children aged 1-3 yr, 4-8 yr and >8 yr
respectively (1 tablet=500 mg)."

The oldest of the probands was 16.

If i would want to use tablets, i would take actually these because there are no other informations in these studies - besides the frest juice wheat grass. You will see in the Clinical review, that the children were not heavy.. it would be optimal in the case of ordering this to have the advice of some doctors involved in this study.. Sorry that i don`t have any other idea to estimate that.

Good night. In Austria we have actually 11.24 pm.

Margarete
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  #7  
Old Wed Dec 8, 2010, 08:41 AM
S001 S001 is offline
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Wheat grass juice is commonly used in India. And from what we'd been told there, fresh juice is the most effective when consumed as compared to wheat grass powders/tablets.

My mom fortunately, manages to grow wheat grass at home, so everyday, fresh grass is chopped and then juiced. Anyway, the coming months will tell if and how much of a difference it makes.

If anybody else is seeing any improvements, do let us know here.
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  #8  
Old Wed Dec 8, 2010, 02:04 PM
akita akita is offline
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Hi S001,

to measure the improvements and to compare it would be necessary to have some more datas:

1) How much of the juice does your father drink?
In the abovementioned Study on MDS 2009 they took 5g leaves 2-3 times daily

2) How often (Study?) 2-3times juice daily

3) How old are the leaves when harvested? Optimum (Study) would be no more than 8 days, not less than 5 days.

4) Wheat Grass juice was taken for at least 6 months.

5) Do you notice the dates, when your father received transfusion?
6) Do you notice the quantity of blood transfused?
7) Ferritin levels/Ferritin Saturation - which date which levels?
8) Is Iron Chelation planned?

Oh, thats perhaps too much.. ?

---

As i read wheatgrass has an long tradition in India and supposedly there must exist much experience with it.

For your parents the best wishes!

Regards


Margarete
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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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  #9  
Old Thu Dec 9, 2010, 02:41 AM
akita akita is offline
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Hi S001,

.. you could also sent me such informations by PN. Or anybody else could collect this. Best would be a medicinitian.

Regards,

Margarete
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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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  #10  
Old Thu Dec 9, 2010, 12:38 PM
S001 S001 is offline
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Quote:
Originally Posted by akita View Post
Hi S001,

to measure the improvements and to compare it would be necessary to have some more datas:

1) How much of the juice does your father drink?
In the abovementioned Study on MDS 2009 they took 5g leaves 2-3 times daily

2) How often (Study?) 2-3times juice daily

3) How old are the leaves when harvested? Optimum (Study) would be no more than 8 days, not less than 5 days.

4) Wheat Grass juice was taken for at least 6 months.

5) Do you notice the dates, when your father received transfusion?
6) Do you notice the quantity of blood transfused?
7) Ferritin levels/Ferritin Saturation - which date which levels?
8) Is Iron Chelation planned?

Oh, thats perhaps too much.. ?

---

As i read wheatgrass has an long tradition in India and supposedly there must exist much experience with it.

For your parents the best wishes!

Regards


Margarete
Yes, we'r keeping a tab on all that you mentioned. Specifically -

1) and 2) My father is drinking exactly as they did in the study. 30 ml of juice, 3 times per day.

3) The leaves are 7-8 days old when harvested, not more, not less.

4) We just started the wheat grass juice a week ago. My father had taken the drink regularly for 1.5 months back in July-August. He was doing better that time, than he is right now (Transfusions were 3 weeks apart, while now it is 2 weeks apart). Now whether this was just the wheat grass juice, or other factors, we'r not sure.

In any case, after reading the study that you'd posted (and yes, thank you for it), we plan to continue the wheat grass juice for atleast 6 months, in the hope of seeing some improvements.

5) and 6) Yes, keeping track of both of these.

7) A ferritin test around 3 weeks back showed ferritin levels of 2,000. We will be comparing future ferritin levels with this to check for any changes.

8) So far, my dad's ECG and liver function tests are all normal, so doctors haven't planned iron chelation as such. If and when the need arises, we'd have to go for it, I guess.

No, not too much at all when you'r dealing with blood/bone marrow issues. And the wheat grass juice retailer that I spoke to in India, said that he had customers who were blood cancer patients taking around 2-3 glasses of the juice everyday. I guess if they'r continuing taking the wheat grass juice for a few months or so, it must be working or atleast beneficial? I'm not sure.

Anyhow, will let you know if lab tests reveal any changes. Take care too.
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  #11  
Old Fri Dec 10, 2010, 01:16 PM
akita akita is offline
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ad 4. It is not sure if the data of six months of intake will be expressive enough. In case of a worsening oder stagnation of the condition of your father could this also be caused by desease progression or by finishing the EPO-support-medication, not so much by not-helping qualities of wheatgrass. There is also not existing a period of preceding transfusion therapy without epo and without wheatgrass - for comparison of the two periods. Hopefully, that you will realize some positive changes nevertheless.

This could be:
- A higher Haemoglobin-Level at Transfusion date
- again longer intervals between the transfusions
- Ferritin would not climb oder even decrease
- general better feeling

ad. 7. Ferritin Levels

7.1. Its not necessary to be astonished about a variation of the Ferritin-Levels in near future.. Ferritin is a marker, but does not exactly represent the transfusional iron burden in den body. A study has shown this fact and highlights the need of using also methods like - counting the number of transfusioned packs and the Liver Iron Load.

http://www.nature.com/nmiddleeast/20....2010.108.html

(you must log in for the full text,so i copied it into this posting, registering on nature.com is free)

doi:10.1038/nmiddleeast.2010.108; Published online 17 February 2010

Research highlight
Serum ferritin as a measure of iron overload

Helen Pilcher

Increasing numbers of patients with sickle-cell disease are receiving chronic blood transfusions to minimize disease-related complications. Left untreated, blood iron concentration can build up to toxic levels (iron overload), so patients commonly receive chelator drugs and have their iron levels closely monitored. Serum ferritin (SF) levels are widely used to monitor iron load; however, the reported relationship of SF to other iron-load measures varies among studies, raising questions about the validity of the biomarker.

To resolve this issue, an international research team, including one representative from Lebanon, compared SF against two other measures of iron load in 271 patients receiving chronic blood transfusions as part of two clinical trials for stroke prevention. SF levels were found to be nonlinear compared with the increasing iron load estimated from transfusion history and liver iron concentrations, and this disparity was most pronounced at intermediate SF levels (~1,500–2,500 ng/mL). SF levels were more reliable at the extremes, with low levels (<1,500 ng/mL) indicating a mostly acceptable iron load, and high levels (>3,000 ng/mL) indicating a significant iron load and an association with liver injury.

These results question the reliability of SF as an iron-load measure, particularly at intermediate levels, and highlight the need for other methods to monitor iron levels accurately in the blood.

References
1. Adamkiewicz, T. V. et al. Serum ferritin level changes in children with sickle cell disease on chronic blood transfusion are nonlinear and are associated with iron load and liver injury. Blood 114, 4632-4638 (2009). | Article | PubMed | OpenURL | | ChemPort |

7.2. A lot of MDS-Patients haven already an elevated ferritin-level when they start with the transfusions. Knowing such a fact from your father could be an additional information for you. Do you know his ferritin-level at diagnosis?

7.3. Your father ought not to have much more than 1.000 ng/ml Ferritin. A study on MDS and Chelation therapy suggests that iron overload has itself an adverse effect on survival (there are some studies in the same direction):

This is the study:

http://asheducationbook.hematologyli...ull/2009/1/664

Supportive care and chelation therapy in MDS: are we saving lives or just lowering iron? Heather A. Leitch1 and Linda M. Vickars1

ad 8. Which sort of liver functioning test did your father?

A few days before my transplantation - after having had 25 Packs of erythrozyte- concentrates during the chemos and after 16 days of Exjade, my ferritin was 1000 resp. 1250 (different laboratories, i took two analyses at the same time), but the magnetic resonance tomography told me, that my liver and my spleen had already signs of weakening concordant with the diagnosis of secondary hemosiderosis..

9. (not mentioned yet) Could you also, please, record the HB values at times of transfusion (or when taken elsewhere?)

Actually i have some infection. I usually take one sort of antibiotics as a general prevention therapy, as i am immunosuppressed. Now i needed temporarily a second one. The one my doctor prescribed caused an allergical reaction the day before yesterday. Today i have another pills, hope this will work without complications.

Wishing you and your family the very best!

Regards,

Margarete
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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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  #12  
Old Fri Dec 10, 2010, 01:23 PM
akita akita is offline
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Hi S001,

"No, not too much at all when you'r dealing with blood/bone marrow issues. And the wheat grass juice retailer that I spoke to in India, said that he had customers who were blood cancer patients taking around 2-3 glasses of the juice everyday. I guess if they'r continuing taking the wheat grass juice for a few months or so, it must be working or atleast beneficial? I'm not sure.

There are existing a lot of websides about the beneficials of wheat grass. People take it for general wellbeing and for many deseases. A friend of mine with CLL does a cure with wheatgrass-capsules every winter and she improves from that.

Regards,

Margarete
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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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