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  #1  
Old Thu Jan 21, 2021, 01:17 AM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
AML relapsed

Hello forum friends

It's probably about a year since I posted. I had 7 months of Azacitidine for AML starting in January 2020. It was the most miserable time of my life with constant hospital admissions for rigors and fevers. I eventually developed pseudo gout in three different areas, and it was just a nightmare to be honest, but eventually in July I came into remission.

My haematologist wanted me to continue a maintenance dose of Azacitidine and I tried but it just put me back in hospital again with fevers in early September so I stopped treatment and managed to hold it in remission until maybe a month or so ago when blasts started showing up in peripheral blood results.

Now I've fully relapsed to AML with Hb down to 74 last week. Two bags of packed cells on Friday took that back up to 84 yesterday, but my platelets have dropped further to 12. White cell count yesterday was 0.7 with neuts 0.1.

I'm trying to remember what I can do naturally to raise platelets. Any ideas anyone?

I'm wondering how many of my old friends from 2011 onwards are still on the forum?

Thanks everybody ... Cheryl
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Thu Jan 21, 2021, 06:09 AM
Meri T. Meri T. is offline
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Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 165
Platelets

Hello Cheryl,
I replied to the Covid shots before I read this mail. I am very sorry you have relapsed into AML. I'm not the 2011 friends, maybe they've all got better and just once in a while come back to say hi.
You used to advise me on nutrition etc, and I hope you are eating and sleeping alright. It helps with the treatment ahead.
Platelets live around 10 days!? I used to have transfusions every two weeks. They dropped fast. Wheat grass and Papaya leaf tea are recommended, though I drank Aojiru(it was easier to buy Aojiru here). It helps the platelets, though I still needed transfusion in the end. Hope this helps.
Meri
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Female born 1965, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin, liver, stomach, esophagus.
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  #3  
Old Thu Jan 21, 2021, 12:34 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,359
I am so sorry to hear that you relapsed. I will have to look for some specific to platelets but off the top of my head, Vitamin d3 and K2 (45 mg/day) may be useful overall. Thorne Research has the K2 and I think Life Extension has a formula for bones which include 45 mg K2.

I remember reading about using Sesame seed oil for platelets, also known as Perilla Oil but can't find the info right now. High dosages can reduce platelet aggregation like blood thinners but shouldn't be an issue at lower doses. John was able to take omega 3 oils when his platelets were at 5K. I recall that it took at least 6000mg of fish oil in order for it to have a blood thinning effect. It helps to know your clotting time. We found his own low platelets worked very well. I'll keep looking though.

Marlene
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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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Old Thu Feb 11, 2021, 05:00 AM
Cheryl C Cheryl C is offline
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Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 843
Hi all

Thanks for responding Meri and Marlene.

Waiting for bone marrow biopsy results now. My counts last week were Hb 92, platelets 5, neuts 0.1 and WCC 0.9. I feel surprisingly well considering. I still walk every day. My blasts were up to 30% when the AML came back, but last week had dropped a bit. I've started needing regular transfusions.

I've been taking papaya leaf extract along with my other usual natural medicines but I must confess I've taken a break from my Vitamin D lately. My options will depend on the results of my latest biopsy, which I expect to receive next Wednesday afternoon (Aussie time).

I do so want to see my grandchildren (youngest 11) grow up, but I know that God is with me regardless and I'm totally trusting Him for the final outcome.

All the best everyone!
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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Old Sat Feb 20, 2021, 03:52 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 725
Hi Cheryl,

I am so sorry to read that you have relapsed. I wish I had some advise on how to naturally raise platelets. I am glad that you are able to walk daily, as that helps with the mental aspects of this disease.

I will keep you in my thoughts and prayers.

Take care!
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53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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