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

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  #26  
Old Mon Mar 26, 2012, 07:35 PM
Alice P Alice P is offline
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Wheatgrass Offer

Hi, Cheri -

Sorry. I posted that original message and then forgot to check back, since my husband is no longer alive. I will send the bottle of wheatgrass pills out to you in the next day or so (as soon as I can get to the post office after work). John had his initial huge decrease in his ferritin level when he was taking 3 pills 2X/day. Good luck to you.

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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  #27  
Old Tue Jul 3, 2012, 04:14 PM
Marlene Marlene is offline
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frustrated....

Well the wheat grass had no effect on John's FE. It is seems to be stuck in the 400's for two years now and that's with bi-monthly phlebotomies. He only gets 250 removed. What's up with that! No more wheat grass for him.

May need to get a complete iron panel done. He had just eaten about 1/2 hour before the test. Not sure that it would have made that big a difference.

The good news.....his urine is clear!!!! 10 years out and no problems in the bladder from the cytoxan. His bladder bled for 6 months after treatment, so this is a relief to know that there was no blood in the urine.
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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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  #28  
Old Thu Jan 31, 2013, 11:35 PM
McScoover McScoover is offline
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MacScoover

II. was active on Aplastic Central, but felt dismissed when most moved here. Rediagnosed in 2007 with LGL leukemia, not included at this site. The way I see it I may still have Aplastic Anemia as a condition, and LGL as the disease causing it. LGL Large Granular Lymphocytic Leukemia is a bone marrow cancer of the immune system.

I went back on red cell and platelet transfusions about three years ago. Then when nothing was working, we tried A steroid Dexamethasone. This improved my red cells to just above threshold, and I have been red cell transfusion free for about a year. Platelets are still every 10 days. Ferritin went up to over 3000. This does not seem right since I was getting red cells ever 6 weeks for only a couple of years before starting the steroid dexamethasone. Doc never suggested ferritin test at any time until I asked for the test.

After reading this thread, I tried Wheat Grass, but with no results. This thread has no new post since mid 2012. Is this still working for anyone? Maybe I got the dosage wrong.

I have heard that steroids could possibly cause a false ferritin reading, but my doc said only that there was no study for this. My cardiologist said he sees no signs of iron storage in heart.

Forgive any odd writing. I can no longer see due to rapid thickening of cataracts caused by the steroids. They will be removed at Jewels Stein Eye Center at UCLA later this month (yea!).

Thanks
Scotty
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  #29  
Old Fri Feb 1, 2013, 12:36 AM
Chirley Chirley is offline
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Hi, I just started Dexamethasone for a potentially fatal allergy and I have found my really bad hip pain has improved already. I actually feel almost euphoric.

Did this happen to you? Am I in for a downer? Prednisone didn't effect me like this.

Regards

Chirley
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  #30  
Old Tue Feb 5, 2013, 01:16 AM
Glenda H Glenda H is offline
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Trying Wheatgrass

I came across info about wheatgrass as Natural Iron Chelator so started it not long after first transfusion. I'm not up to the stage of needing Exjade as only had 3 transfusions. Even if the wheatgrass is not enough for Iron overload it has other good benefits.
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  #31  
Old Sat May 18, 2013, 11:57 PM
winkryda winkryda is offline
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Question wheat grass + platelets?

What have your platelets been while taking wheat grass tabs? Are you allergic to allergic to lawn grass? I am allergic to lawn grass and know that wheat grass is a different genus and species to most lawn grasses, but I'm concerned. MD says ok to try a little on days I come to clinic. (Exjade not an option due to low platelet)s.

Last edited by winkryda : Sun May 19, 2013 at 12:16 AM.
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  #32  
Old Sun Jun 9, 2013, 09:39 AM
Mary4Mike Mary4Mike is offline
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Iron overload and elevated liver enzymes

I am posting on this thread because I can't find where to begin a new topic. My husband has iron overload due to 140 transfusions prior to transplant. He has been doing phlebotomy for 3 years and his ferritin is still over 1000. It will drop to 700 and then jump to 1000. He is doing phlebotomy everyother week and they take 500 mls each time. Since doing this, his HGB has gone from 19 to 15. My question is, can phlebotomy cause elevated liver enzymes? His jumped up this past couple weeks after having been stable for months. He has had a liver biopsy and MRI of the liver and he does have considerable iron in his liver. I have read that iron overload can cause elevated liver enzymes and am wondering if this is what is going on. We are in Florida and not seeing the the transplant doctor, but we are in contact with her. Have any of you had experience with this problem? I am off to church, but will check back this afternoon. Thank you in advance for any input.
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #33  
Old Sun Jun 9, 2013, 01:34 PM
Sally C Sally C is offline
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Hi Mary,
I have a friend who has a congenital condition that makes his liver store iron. It did elevate his liver enzymes. His doctors had him do a detox that they prescribed. That along with a supplement called "Liver Support" has normalized his enzymes although he still has to have regular bloodwork.
The "Liver Support" only has 4 ingredients - Selenium, Milk Thistle Extract, Alpha-lipoic Acid, and N-Acetyl-L-Cysteine. He of course asked his doctors about taking this and they had no problem. In fact a few months later when they check his enzymes, they had improved so much the doctors asked him what he was doing. He told them the only thing he was doing was taking this supplement and eating all organic food. They just told him to keep doing what he was doing.
If you would like to know where to find this, please feel free to contact me via my e-mail address - shcalvert3@aol.com.
I hope this helps.
God Bless,
Sally
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  #34  
Old Sun Jun 9, 2013, 04:30 PM
Mary4Mike Mary4Mike is offline
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Sally ~

Thanks so much for your answer. I will check out Liver Support and if I can't find it, I will email you. We take many supplements and NAC and selenium are two, but I am sure this Liver Support is a proper blend and it is definately worth checking out.

BTW can you tell me how to start a new thread on this forum? I have looked the page over and can't seem to find where to click on. ....and I take supplements for eyes!

Mary
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #35  
Old Sun Jun 9, 2013, 04:59 PM
Mary4Mike Mary4Mike is offline
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Iron overload, phlebotomy, and Vit C

I am wondering if taking Vitamin C while having a high Ferritin is detrimental. I thought that it may cause the body to store iron. Is this true? Also, has anyone tried Lactoferrin to try to rid the body of iron? As I stated on another post here, my husband is dealing with elevated liver enzymes right now and I feel that Vitamin C would be a good healer for his liver. Any ideas on this.

BTW Sally, I found the Liver Support and just happened to have a similar product on hand - LiverClean- as a liver detoxifyer that we will begin today.

Still wondering how to begin a new post on here. Anyone???
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #36  
Old Sun Jun 9, 2013, 05:24 PM
riccd2001 riccd2001 is offline
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Start A New Thread...

From FAQ: How do I start a new thread?

A: To start a new thread: 1. Check if there is already a thread on that subject by browsing or searching.
2. Decide which forum is most appropriate for your thread, e.g., a new thread about headaches would probably go in the General Health Problems forum.
If you aren't sure which forum is best, take your best guess. The administrators may move a thread if they think it would be better in another forum, or merge it with an existing thread about the same subject, to help you get your question answered.
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5. Type a thread title and the comment or question that will be the first post in the thread. Please pick a thread title that indicates the subject. If you choose a poor title for your thread, the administrators may rename it.
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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  #37  
Old Sun Jun 9, 2013, 05:53 PM
Marlene Marlene is offline
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Hi Mary,

Vit C usually makes the iron more available in the blood stream. I think it pulls it out of the tissues and into the blood. So you basically have more iron removed when you chelate or do phlebotomies when taking it.
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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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  #38  
Old Sun Jun 9, 2013, 07:11 PM
Mary4Mike Mary4Mike is offline
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Thank you Marlene and Ric for your responses.

Marlene, I also read in one of my alternative books that the C should be taken in between meals, not with meals so as not to cause the iron to be absorbed. It also said to drink tea with high iron meals so as to block absorption. Have you ever read anything about Lactoferrin and if it would factor into being an aid with all this? I believe that Mike's liver enzymes jumped because the week before his whites and anc spiked. He wasn't really sick, but didn't feel the greatest - flulike. The next week, the whites were normal, but his enzymes went up. His ferritin also went up 300 points from where it was and he had had a phlebotomy. Do you have any ideas about this?

Mary~
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #39  
Old Mon Jun 10, 2013, 08:31 AM
Marlene Marlene is offline
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It is true that vitamin c will increase the uptake of iron from food. However, unless you have hemochromatosis, the body is pretty good at regulating that uptake based on need and that should not be a big concern. I think taking vitamin one to two hours before a phlebotomy could be helpful. I would get a buffered Vitamin C as it's easier on the tummy when taking between meals.

Green tea, coffee, red wine and anything else with tannins will reduce the uptake of iron during a meal. And green tea has other health benefits as well.

On lactoferrin...it's been so long since I read about it that I can't recall how effective it is. John never tried it. I think I know one person who did but did not see much of an effect.

It's not unusual for the ferritin to increase in the presence of an infection or inflammation so I would not worry about that right now. Just keep an eye on it. 300 is not a big jump. Ferritin is actually a good thing in that it binds the free iron making it safe. Bacteria loves an iron rich environment.

Regarding the liver enzymes....those too can take a hit with an illness and may not have any clinical importance. I know you always have to be concerned with GVHD of the liver so it does warrant watching. If they are slightly elevated, I wouldn't panic just yet. If the infection caused it, then they will most likely normalize over time.

Watching all these numbers can drive you to drink. They certainly played with my emotions. My mood would shift with each new lab report.
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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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  #40  
Old Mon Jun 10, 2013, 11:31 AM
Mary4Mike Mary4Mike is offline
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Marlene,
I really appreciate your input and knowledge on these topics.
We have asked for another liver enzyme test on Thursday when he goes for his regular labs. His AST was 121 and ALT 213. I hate to jump into any treatment for this right away (steroids?) I contacted the transplant doctor back home and she suggested watch and see and perhaps the next step would be an ultrasound. I like this approach. The hemo/onc down here suggested we see our family practioner down here, which we will should things not turn around. One other thing to throw into the mix. After these labs were drawn, he broke his collarbone in a bicycle accident. The inflammation alone will most likely play havoc with his numbers. He has opted not to take the presribed pain meds because of the toxicity to the liver. He is taking ibuprophen and several homeopathic remedies.

Thanks again and I hope that things are going well for you.

Mary
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Mary, wife of Mike age 70; diagnosed MDS RARS 1999. Tried Vidaza, Revlimid, and Dacogen. SCT 10/1/09 at U of MI; induction FluBu2; sister perfect match donor. 5 years out, little to no GVHD. Off all meds. God is good
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  #41  
Old Mon Jun 10, 2013, 01:34 PM
Marlene Marlene is offline
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Yikes!!! Well, healing bones can/will cause an increase in his ALT. So I wouldn't be alarmed if it is still high. Don't know about the AST. But it can take while for LE to normalize after an infection or trauma especially when the liver's iron load is high.

Sounds like you may have to wrap him up in some bubble wrap next time he goes out on his bike.

I have really become a fan of homeopathic medicine. Probably one of the most misunderstood alternative medicine disciplines. It's simple and complex at the same time. I don't go to the dentist without my arnica. John responds really well to them.
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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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  #42  
Old Sun Aug 10, 2014, 12:57 PM
Alfred Alfred is offline
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buy wheat grass

Quote:
Originally Posted by mzwalker View Post
After learning about the effectiveness of wheat grass for iron overload on this site, I consulted with a nutritionist & a nurse who's knowledgeable in alternative medicine. Both suggested using the fresh version as it is thought to be more affective. But, where to get it? Whole Foods in my area didn't have a juice bar. Try Jamba Juice, I thought. Yep. I go daily for a 2 ounce cup with an orange slice (best on an empty stomach). In just 2 weeks my blood tests showed that my iron level dropped from 253 to 136, transferrin saturation went from 89% to 53% and ferritin dropped from 1416 to 961.
You can buy frozen wheat grass juice at www.dynamicgreens.com I have used wheat grass for 5 months, the same dosage as used in the Indian trails with no decrease in ferritin levels. This is not to say it does not work for others.

Alfred
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  #43  
Old Wed Sep 24, 2014, 05:42 PM
DanG44 DanG44 is offline
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Wheatgrass capsules

I am new to Marrowforums but I am hoping to get information on the brand of the wheatgrass capsules Alice had talked about in 2012. It appeared they were very effective in lowering John's ferretin level.

Many thanks
Dan
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Dan, 70 year old male, dx MDS 2010;treated with VIDAZA. remission for 15 months. Re started VIDAZA; did not work a second time. Transfusion dependent since 2013. Started Procrit 5 weeks ago. Exjade 1500 MG a month ago.Considering Dacogen
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