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

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  #1  
Old Tue Jan 31, 2012, 11:31 PM
dfantle dfantle is offline
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Milk Thistle for Chelation?

Hello, I visited with my Naturopath Oncologist yesterday to talk about some possible supplements for my recently diagnosed AA. In addition to a B12 shot, the Naturopath Oncologist recommended Milk Thistle (a bioavailable Silybin-phosphatidylcholin complex) as a natural chelator.

Has anyone else on the site used this? I may also try wheat grass juice, but only in a pasturized form which may not work quite as well as fresh, but the naturopath thought it would be worth trying. (My ferritin levels are currently at 2038 ng/mL)

Note: All supplements/treatments recommended by my Naturopath Oncologist need to be approved by my Hemotologist/Oncologist before I can try them out.

Thank you,
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #2  
Old Wed Feb 1, 2012, 08:32 AM
Marlene Marlene is offline
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I have yet to come across any data on Milk Thistle as an effective chelator for iron. Very few natural substances, except wheat grass, are effective when you are trying to get rid of a large quantity of iron. Even wheat grass may not be enough to bring it down significantly. However, milk thistle is very good at protecting the liver from toxins as well as helps to heal it. It will also help your overall detoxification system to function better. So I can see how it can be beneficial for you.

Others on this site have had good success with wheat grass. My husband is taking it for his remaining iron. He also gets a phlebotomy every other month as long as his HGB remains at 10 or above. I cannot tell you if the wheat grass is working since he hasn't had his FE checked since he started it.

As you know, iron is hard on your organs so anything you can do, like milk thistle, should help minimize liver damage. Foods high in antioxidants would be wise also.

Regarding the B12, there's been some discussion about low-normal levels being implicated in the cause of MDS and by correcting B12 it, resolved it.

I am very pro B12. Your B12 levels really need to be, at a minimum, at 500. You can accomplish this with oral supplementation instead of getting the shot. It's unfortunate, but many doctors still think that a low-normal B12 is okay to ignore. But the B12 blood serum test is not very reliable in assessing a deficiency. If your B12 is low, you can do both. There are different forms of B12 with the methyl form being more effective. I would assume your naturopath would recommend a B-Complex also. You really shouldn't supplement with only B12 since the B vitamins work synergistically
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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 July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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  #3  
Old Wed Feb 1, 2012, 08:39 AM
Greg H Greg H is offline
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Hey Dena!

I haven't heard of milk thistle for chelation, but I'm going to try to read up on it. If it pans out, I'd be interesting in trying it. Let us know if you find out more or if it works for you.

If you don't mind my asking, what is aB19 parvovirus? Sounds gruesome!

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 Wed Feb 1, 2012, 11:55 AM
Lbrown Lbrown is offline
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Parvovirus causes some weird disease called Fifth's Disease - where you have red cheeks. I think dogs carry it. It is one of the main things they test for when you don't have enough red cells. Which makes me wonder what other types of virus / bacteria / fungal infections can also cause anemia that we don't yet know about. Infectious anemia is recognized in other animals.

Deb
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  #5  
Old Wed Feb 1, 2012, 12:38 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by Lbrown View Post
Parvovirus causes some weird disease called Fifth's Disease - where you have red cheeks. I think dogs carry it. It is one of the main things they test for when you don't have enough red cells. Which makes me wonder what other types of virus / bacteria / fungal infections can also cause anemia that we don't yet know about. Infectious anemia is recognized in other animals.

Deb
Human Parvovirus B-19 is a very common childhood disease. It is not the same as dogs get. It can cause PRCA. Dr. Neal Young at NIH has done research on it. Dr. Maciejewski is currently doing research on the possible causes of these bone marrow failure diseases from various viruses.

Quote:
Fortunate to have one of the TOP researchers in the world, Dr. Jaroslaw Maciejewski right in their backyard at The Cleveland Clinic, but frustrated by the lack of funding and research available, they launched the inaugural, "JUNGLE JAM" at The House of Blues on October 17th 2008. This amazing event raised almost $70,000 and provided invaluable "seed money" which initiated research to determine if viruses cause certain types of Bone Marrow Disease, Cancers and Blood Disorders. Within the first year, Dr. Maciejewski was awarded an additional $1,900,000 to continue his research from The National Institute of Health!
Here are some more details.
http://www.makeithappen4bmd.org/clevelandclinicchip
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  #6  
Old Wed Feb 1, 2012, 02:29 PM
dfantle dfantle is offline
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Quote:
Originally Posted by Greg H View Post
Hey Dena!

I haven't heard of milk thistle for chelation, but I'm going to try to read up on it. If it pans out, I'd be interesting in trying it. Let us know if you find out more or if it works for you.

If you don't mind my asking, what is aB19 parvovirus? Sounds gruesome!

Take care!

Greg
Hi,
Re: the milk thistle, I will definitely pass along if this works.

Re the b19 parvo: B19 Parvovirus is Fifths Disease, which is a human only form and very common childhood disease. We are still unsure how I got it 3 months following my autostem cell transplant which I had for Heavychain Amyloidosis. This human form of parvovirus typically clears on it's own except when immuno-compromised. In this case immunoglobulin, given monthly in daily infusions for 5 days typically works. However we tried this for 6 months and the parvo still hung in there at low- ish levels. So, we then did a 2 week dose of Tamiflu, off label along, with immunoglobulin just to try something different and the parvo was finally gone. Can't say for sure if it was the Tamiflu, but...

Symptoms are typically not too bad and when I likely had it my immune system was still low following my transplant so I truly had no symtoms other than a crash in my blood counts. Therefore it took 2 weeks and a lot of tests to determine why my counts suddenly fell so drastically. Typically after a Parvo infection blood counts will rebound, however mine have not and since my clinic and the NIH see no reason for this they both have now decided I have AA. (I met with Dr Young & team at the NIH end November which is where my labs finally showed the Parvo was finally gone. My regular Hemotologist/Oncologist is affiliated with Fred Hutch and Seattle Cancer Care Alliance, so lots of experience with AA)

Sent from my mobile phone
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Dena
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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  #7  
Old Wed Feb 1, 2012, 05:12 PM
Greg H Greg H is offline
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Hey Dena!

A little digging around took me in the same direction that Marlene mentions: it seems like some folks who are into chelation (as in for kids with autism) use milk thistle to protect the liver during the process.

Though the research on wheatgrass as a chelator all seems to involve the fresh-pressed juice, there are lots of folks on marrowforums who seem to have had success with either the powder or the pills, whether those are compressed powder or freeze-dried juice.

I'm on the compressed tablets at the moment, and will have a ferritin check next week, so that should give me some idea of whether the grass is working for me.

Thanks for the explanation on the virus.

Take care!

Greg
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  #8  
Old Thu Feb 2, 2012, 09:33 AM
cheri cheri is offline
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Hey Greg

Please do post when you find out about the wheatgrass effectiveness.....
I'm off Exjade and my ferratin is out of control....waiting for GI issues to clear before starting wheatgrass....remind me: how many pills a day?

I sure hope this is a viable alternative!
Thanks!
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Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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  #9  
Old Thu Feb 2, 2012, 10:47 AM
Lbrown Lbrown is offline
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Thanks for the info on parvovirus. I remember hearing it is a common childhood disease, but I have never heard of anyone who has had it except for the child of a friend of a friend a couple years ago. I don't ever remember hearing about it when I was younger.

Yes please let us know about the wheatgrass.

Deb
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  #10  
Old Mon Feb 6, 2012, 02:04 AM
cathybee1 cathybee1 is offline
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Regarding Parvovirus -- it is much more common than people realize. It is highly contagious. Children can contract it in school, and pass it on to their parents. Manifestation in adults can present as severe but temporary joint pain. My niece recently contracted it from her kindergarten age son. Interesting tidbit from the Wiki: by the time adulthood is reached about half the population will have become immune following infection at some time in their past
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Catherine, wife of Bruce age 75; diagnosed 6/10/11 with macrocytic anemia, neutropenia and mild thrombocytopenia; BMB suggesting emerging MDS. Copper deficient. Currently receiving procrit and neuopogen injections weekly, B12 dermal cream and injections, Transfusions ~ 5 weeks.
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