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

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  #1  
Old Wed Jul 20, 2011, 03:23 PM
Alice P Alice P is offline
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Wheatgrass and Iron Overload

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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Old Wed Jul 20, 2011, 07:05 PM
slip up 2 slip up 2 is offline
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Alice, this is very interesting, my husband has had transfusions since last Aug., we did use the frozen wheatgrass and his ferritin came down as well, he also takes ex-jade which he seems to tolerate once we arrived at an appropriate dosage.
He is finished his 2nd round of Vidaza and that seems to be working...it is 14 days since his last transfusion and his platelets are in the normal range.

I would still get him to take the wheatgrass but was concerned it might mess up the Vidaza.

From what I have read and understand from one his oncologists that the Vidaza along with the Revlimid seems to be working for some patients.
My husband was on Revlimid for 2 cycles and it did nothing, only lowered counts.
How our bodies respond so differently to the drugs.

Best of...to you and your spouse
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  #3  
Old Wed Jul 20, 2011, 07:22 PM
Alice P Alice P is offline
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Vidaza and Revlimid

I'm glad the Vidaza is working for your husband. John is on his second cycle of the Vidaza and Revlimid combo. So far, we haven't seen any effects other than lowered counts, but we're still hoping. We don't really have any other options at this time. He is 77, so a transplant is out of the question.
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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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  #4  
Old Thu Jul 21, 2011, 06:53 AM
Greg H Greg H is offline
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Wow! Great results

Hey Alice!
I'm a member of the wheatgrass club. Started with tablets, switched to powder (in a smoothie), but I somehow missed the freeze-dried capsule option.

Looks like there are a variety of options out there, If you don't mind sharing, which brand did you settle on and why? The world of supplements can be hard to negotiate, since lax product regulation means some brands are junk and others are great. Since whatever you were using worked so well, I'd be interested in knowing which brand you settled on.

Thanks much, and good luck!

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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  #5  
Old Thu Jul 21, 2011, 02:59 PM
Alice P Alice P is offline
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Freeze Dried Wheat Grass

Hi, Greg -

Actually, I first learned of the iron chelating properties of wheatgrass from your posts! I then looked at mdsbeacon.com and found the results of a study from India, reported at ASCO 2009, in which 30 ml of fresh wheatgrass juice daily proved to be an effective chelator. I looked at GNC.com, and the description for Eclectic Institutes Freeze Dried Wheatgrass Capsules stated that three of their 400 mg. capsules are equal to 1 oz. of fresh juice. Two ounces is approximately equal to 30 ml; hence, the 6 caps per day that John is using. GNC charges $39.99 per bottle, but I found the same stuff at Amazon for $24.33. Hope it works as well for you as it did for my husband.

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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  #6  
Old Thu Jul 21, 2011, 03:21 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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  #7  
Old Mon Jul 25, 2011, 07:56 AM
celebrations celebrations is offline
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Dear Alice and dear Greg,
beside the wheatgrass are you (or your husband) also chelating with Exjade?
Have you yet realized or even proofed the efficiancy of wheatgrass with your ferritin level having declined?
Do you need less Exjade then?
What's your physician's position to wheatgrass ? Does it go along with Exjade?

Would be happy with your answers !
and, Greg, I owe you one more post to the Revlimid-subject, It'll come soon.
Bye, Bergit
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female, 54, MDS-RCMD, trisomy 8, dx 2006, response to EPO and therafter VPA only for a couple of months, transfusion-dependent twice a month, watch&wait for SCT somewhen in the future with my brother as a donor
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  #8  
Old Mon Jul 25, 2011, 09:41 AM
Alice P Alice P is offline
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No Exjade

Celebrations -

My husband is unable to use Exjade. It is not for those who have high-risk MDS or whose platelets are below 50,000 (both of which describe John). So the wheatgrass is the only chelator we've tried. I can't prove that it was what lowered his ferritin level, but I can't imagine what else would have caused the decrease. His hematologist was previously unaware of the chelating properties of wheatgrass, but he was supportive of our trying it and is enthusiastic about the results. We have a three-month follow-up appointment at NIH tomorrow. It will be interesting to get their take on John's ferritin levels.

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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  #9  
Old Mon Jul 25, 2011, 12:46 PM
Lbrown Lbrown is offline
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My doctor said I could try it, but I will continue with the exjade too. See what happens. I know my ferritin stays around 1200, and I haven't been able to get it any lower. I get 2 units of red cells every 2 weeks.

Deb
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  #10  
Old Mon Jul 25, 2011, 10:38 PM
Reneesctmiller Reneesctmiller is offline
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My husband is on high dosage of exjade right now as well, I want him to start taking wheatgrass to try to lower his levels - he has the blood test scheduled for tomorrow, but we think his ferritin is back up in the 3000 again The lowest level we've been able to get him to in 2 years is 1400. If wheatgrass will help, that will keep us from having to go back to the desferal infusions, which is what he was on last year for 9+months.

Alice P, would like to hear NIH's position on wheatgrass then!
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Renee, wife of Brian age 44; dx Prca 2009 & possibly CLL, w/iron overload; treated with prednisone, cyclosporine, rituxan/cytoxan, Exjade & Desferal; spleen removed 10; currently transfusion dependant w/iron overload; on Exjade & pending next step in treatment. Patient at Mayo Clinic, Jax, FL.
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  #11  
Old Tue Jul 26, 2011, 03:56 PM
Alice P Alice P is offline
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NIH

Today was John's three month follow up after being released from the Phase I study of Estybon (ON 01910.na) at NIH. One of the doctor's jaw dropped when we told him about John's experience with wheatgrass. Dr. Olnes, the principal investigator of the study, was of the opinion that there is no harm in using the supplement for iron chelation. We will continue to do so. Now if only the Vidaza + Revlimid combo would start showing some results!
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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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  #12  
Old Wed Jul 27, 2011, 03:44 AM
celebrations celebrations is offline
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Dear Alice,
"Dr. Olnes, the principal investigator of the study, was of the opinion that there is no harm in using the supplement for iron chelation. We will continue to do so."

Sounds good. Seems that I get more and more encouraged to do so aswell. Thank you very much.

As for the other drugs your husband is taking I wish you success!
Bergit
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female, 54, MDS-RCMD, trisomy 8, dx 2006, response to EPO and therafter VPA only for a couple of months, transfusion-dependent twice a month, watch&wait for SCT somewhen in the future with my brother as a donor
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  #13  
Old Mon Nov 14, 2011, 05:16 PM
mzwalker mzwalker is offline
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Smile Using fresh wheat grass for iron overload

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.
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  #14  
Old Tue Nov 15, 2011, 01:54 PM
akita akita is offline
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You should notice your levels and intake of wheat grass juice. Variations of ferritin levels can occur, also climbing again after successful reduction. The long term results count.. There exists a study where patients were iron-chelated after a stem cell transplantation. They had very high ferritin-levels in the beginning. After one month of weekly or bi-weekly phlebotomies the ferritin-levels had decreased - from a very high start-point from e.g. 6000 to 4000 ferritin. But later then the decreasing of the levels was not so much anymore, and after having reached normal ferritin-counts and stopping the phlebotomies the ferritin- levels climbed up again, so that maintaince -phlebotomies were necessary to hold the level. I don t know if the situation with iron chelation with wheat grass is really comparable - but you should take in account that the short-time- results could variate.

What i know are only the results of the patients of the MDS study ASCO 2009.
http://www.asco.org/ASCOv2/Meetings/...stractID=33788
with the presentation third row right
http://www.asco.org/ASCOv2/MultiMedi...sessionID=3112

From what i read the best results come from drinking the wheat grass juice fresh only a few minutes after harvesting. there are instructions on youtube how wheat grass can be grown easily at home. I also do this since a few weeks, because there is no shop for fresh wheat grass in vienna and the frozen one by post is too expensive. It is also important to take the wheat grass splitted up in 2 or 3 portions daily (like they did in the study).

Good luck,

Margarete
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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 : Tue Nov 15, 2011 at 02:05 PM.
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  #15  
Old Tue Feb 28, 2012, 04:22 PM
Alice P Alice P is offline
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Wheatgrass Effect Didn't Last

I've been meaning to post for a long time but have only just gotten around to it. It was a difficult autumn with several infections and hospital stays. After an amazing initial reduction in John's ferritin after just weeks of wheatgrass use last summer, his level began to climb again through the fall. It was 4230 at the beginning of November and 10,762 by the end of the month. We were debating whether or not to try Exjade when John was admitted to the hospital with a serious staph infection. They sent him home after a week with IV antibiotics, but unfortunately, he suffered a heart attack and subsequent heart failure. He died on January 26. So sorry if I gave anyone false hope.
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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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  #16  
Old Tue Feb 28, 2012, 06:50 PM
Sally C Sally C is offline
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Dear Alice,
I am so very sorry for your loss. John was very blessed to have such a wonderful wife as his support.
May God rest his soul and provide comfort for you and your family.
God Bless,
Sally
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  #17  
Old Tue Feb 28, 2012, 10:01 PM
Alice P Alice P is offline
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Thanks

Thank you for your kind words, Sally. It has been a very difficult six weeks. But I wish the best to all those who suffer from MDS and for those who care for them.
- 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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  #18  
Old Tue Feb 28, 2012, 10:08 PM
Neil Cuadra Neil Cuadra is offline
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You have our deepest sympathies, Alice. This is such sad news but thank you for letting us know.

We almost felt like we knew John ourselves from the stories you've shared with us. If it's any comfort, please know that other patients and caregivers benefited from your participation in these forums, including your posts about NIH. We know better than anyone what you've had to go through so you are welcome to continue reading and posting at Marrowforums if it will comfort you. But there's only so much that people can do from a distance, so we hope that you have other friends and family around you.
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  #19  
Old Tue Feb 28, 2012, 10:23 PM
Alice P Alice P is offline
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Thanks, Neil. I remain interested in MDS research and will continue to follow the Marrow Forums and MDS Beacon. In John's obituary, I asked that friends who wish to honor him consider donating to their local blood bank or joining the Be The Match Registry. If anyone is interested, here is a link to the video I created for John's memorial service.

http://www.youtube.com/watch?v=rSaroEnmVtM
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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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Old Tue Feb 28, 2012, 11:47 PM
mausmish mausmish is offline
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Alice,

What a beautiful and touching tribute. Thank you so much for sharing this. My deepest condolences on your loss. May you find peace with your loved ones.

Karen
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #21  
Old Wed Feb 29, 2012, 05:43 AM
Birgitta-A Birgitta-A is offline
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Over the rainbow

Dear Alice,
What a good life John had with his beloved family and how sad that he lost the fight with the disease. Now he has found peace.
Warm regards
Birgitta-A
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  #22  
Old Thu Mar 1, 2012, 01:22 AM
cathybee1 cathybee1 is offline
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I am so very sorry, Alice. No words can help make a loss like this easier. And thank you so very much for posting the wheatgrass update here. It helps all of us so much.
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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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  #23  
Old Sun Mar 11, 2012, 12:55 AM
Alice P Alice P is offline
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Wheatgrass Offer

I have an unopened bottle of freeze-dried wheatgrass juice capsules that I'd be happy to send to anyone interested in trying it (see above caveat). Value is about $25. Respond with mailing address if you want it.
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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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  #24  
Old Sun Mar 25, 2012, 09:19 PM
Alice P Alice P is offline
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Wheatgrass Offer

What I meant was, the value of the pills is about $25, but I am not interested in selling them. I just hate to throw them away. So if anyone wants them for free, I'd be happy to send them, and I'll even cover the shipping costs.
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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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  #25  
Old Mon Mar 26, 2012, 10:14 AM
cheri cheri is offline
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Wheatgrass

Hi Alice!
Yes, I am interested! I had sent you a private message....but I will give you my mailing address here:
Cheri Decker
110 Ocean Rd
Corbin City NJ 08270

My ferratin is through the roof (over 7k) and I can no longer tolerate Exjade--I desperately need to start wheatgrass, and love the idea of capsules....Thank you so much!

Cheri
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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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