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  #1  
Old Thu Oct 31, 2019, 01:43 AM
Cheryl C Cheryl C is offline
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Transformation to AML

Hello to those who remember me from the last 7 years on the forum. After these years of relative stability, a week or so ago I had a bone marrow biopsy after experiencing a drop in platelet levels from 130k to 80k, plus other changes in my bloods. Yesterday I saw my haematologist and was informed that I have AML with 23% blasts, which is a shock as blasts weren't showing up in my blood until my most recent CBC/LFT. I can't start any treatment until further results come in for karyotype, etc in around 6 weeks.

Has anyone else on the forum experienced this level of blasts, and if so how quickly did they increase?
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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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  #2  
Old Thu Oct 31, 2019, 12:09 PM
Hopeful Hopeful is offline
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Cheryl -

I am shocked and so sorry to read this news! Although this forum is quieter than in years past, there are many of us that still check in. You are in my thoughts and prayers. Stay positive and strong!
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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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  #3  
Old Thu Oct 31, 2019, 06:05 PM
DanL DanL is offline
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Cheryl,

I am very sorry that you have experienced this transformation to AML. I went from being very stable and 2% to 3% blasts to over 16% blasts in my peripheral blood. While it may not have been classified as AML, I had a bone marrow biopsy 2 months earlier that showed me as stable.

I went into transplant about 3 weeks later and am fortunately still here. I was being treated with vidaza at the time of transformation.

I wish you the best moving forward.

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #4  
Old Fri Nov 1, 2019, 02:28 AM
Meri T. Meri T. is offline
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Blasts

Cheryl,
I am so sorry that the blasts have come that high all of a sudden.

My first bmb the blasts were 5.6%.
9 months later, the bmb showed the blasts at 8.7%, and a few weeks later I had my transplant.

My platelets at that time dropped too, needing platelet transfusions every 10 days.

I hope your karyotype will be good.
My prayers.
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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  #5  
Old Sat Nov 2, 2019, 03:08 PM
Barbara K Barbara K is offline
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Dear Cheryl

I am so sorry to hear this news and just wanted you to know I'll be keeping you in my thoughts and hoping your doctors are able to offer you a good treatment plan with promise of a durable remission. Your experiences taking extra good care of your health these many years and learning to navigate the medical system will surely be valuable assets as you face this unexpected challenge.

In recent years I have not been logging on to Marrowforums frequently, but I very much appreciated your postings in the past and will be checking in more regularly to hear your news and root you on.

Take care and best wishes, Barbara
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  #6  
Old Fri Nov 8, 2019, 02:06 PM
Rarity Rarity is offline
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Hi Cheryl,

I too am so sorry to hear this. My husband also started showing signs in his blood as well and one of the things to go to transplant. Praying for you.

Rarity
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  #7  
Old Thu Nov 14, 2019, 02:14 AM
Lifeguard Lifeguard is offline
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Dear Cheryl,

I too have not posted in years so I was so sorry to hear your news about your transformation to AML. I imagine it must be a real shock after so many years of living with MDS. I hope youíll be ok, and that you have plenty of support from family and friends.

Cheers Rachael
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Diagnosed MDS Del 5q October 2007, blood transfusions 2010, commenced Revlimid 2010. Transfusion independent.
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  #8  
Old Fri Nov 15, 2019, 06:28 AM
Cheryl C Cheryl C is offline
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Thank you all so much for your interest and support. It's hard waiting to get the final results so I can know what my options are going forward. Transplant isn't an option due to my age (72). In the mean time I'm having a battery of tests to check if there are any co-morbidities lurking around. Fortunately I still feel reasonably well most of the time. I'm so thankful for the years of stability and reasonably good health I've had.
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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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  #9  
Old Sat Nov 23, 2019, 06:53 PM
maggiemag maggiemag is offline
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Cheryl, I am also shocked! After being stable for so long, what a stunner. And all you had was a modest drop in platelets to signal a change. Wow. Well onward you will fight I know. I have heard good things about Venetoclax (sp?) with AML. Hope it's available where you live. Here they do transplants up to 75 if your overall health is good. Have you contacted other large medical centers? Maybe they have changed their limits??

Have faith and courage, and stay determined. We will be here for you whenever you need us.
Mags
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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  #10  
Old Mon Nov 25, 2019, 04:19 AM
Cheryl C Cheryl C is offline
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Thanks so much for the encouragement, Mags. My main symptoms are mild dizziness and nausea, and of course weakness and tiredness at times. I'm still able to continue with life as I normally live it but I can tell that this isn't going to last. My blood results are deteriorating a little with each fortnightly test. Last Wed they were Hb 9.4, WCC 0.7, neuts 0.2, Hct 0.272, Lymphs 0.3, platelets 78, MCV 105.

I think the only treatment available at my hospital is Azacitidine. Depending on my karyotype and the cytogenetics I may have to explore other options.
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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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  #11  
Old Thu Dec 12, 2019, 05:38 AM
Cheryl C Cheryl C is offline
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I saw my very nice haematologist/oncologist yesterday, and he informed me that my karyotype and cytogenetics are normal. I'm due to start Azacitidine on 13 January. He thinks that I might do well on it, so I'm hoping .... Interestingly he didn't rule out a transplant if the Azacitidine gets me into remission. That's a scary prospect tho'.

My AML is a bit atypical in that the peripheral blood blast count has stayed at 10% for the last couple of months and other bloods, though not normal, seem fairly stable. This means I can delay to enjoy some family time over Christmas before I start. If there is a deterioration, I'll have to get started sooner.

One of my son's friends is a retired naturopath and he has given me some good advice on how to build up my system before the Aza starts so I'm going to give that my best shot and right now I'm feeling positive and hopeful.

I would love to hear from people who have been on this drug and to know what side effects you have experienced, when the side effects started in the cycle and how long they affected you during the cycle. Thanks!
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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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  #12  
Old Thu Dec 12, 2019, 07:27 AM
Meri T. Meri T. is offline
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Hello Cheryl,
I haven't been on Azacitidine, but I just want to say great that both of your karyotype and cytogenetics are normal !

You are so positive ! Wishing you the best.
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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  #13  
Old Sun Dec 29, 2019, 09:36 AM
Callie Callie is offline
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CherylC - I haven't logged on in quite some time. Was very shocked and saddened to see your posts, as you became like family during Dad's bout with MDS and AML. As you'll possibly remember, my dad, Bailie, was on azacitidine for MANY cycles and did very well with it! He was able to live almost completely normally during this treatment. Just remember to take the meds for nausea and constipation - very important. Please know I'm thinking of you and really, really hoping for the best for you!! I know you'll continue to overcome!
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Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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  #14  
Old Thu Feb 13, 2020, 01:12 AM
maggiemag maggiemag is offline
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Hi Cheryl! I think it's been weeks since you last posted, so I am hoping you are able to give us an update in your situation? I'm hoping that it's all positive, and you are tolerating your treatment well. Have you found several different options, or is it still Vidaza?
Still sending positive thoughts and prayers your way, Cheryl.

Mags
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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  #15  
Old Fri Aug 28, 2020, 02:48 AM
Cheryl C Cheryl C is offline
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Hello there at last! Well I made it thru 6 cycles of Azacitidine and have gone into remission. Thanks for all the encouragement folks. It was a very rough road and I many times I ended up in hospital from side effects or infection.

I had 4 weeks off after cycle 6 and have just finished week 1 of a new regime of 5 days every 5 weeks. Hopefully Iíll be better on this. So far so good!

I hope youíre all doing well.
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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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  #16  
Old Fri Aug 28, 2020, 03:26 PM
DanL DanL is offline
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Hey Cheryl,

It's great to read that the Azacitadine is working well for you. I am sorry about all of the side effects. It really can drop your counts around week 2-3 of each cycle.

Here's to continued success and improving health!

Dan
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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  #17  
Old Fri Sep 4, 2020, 04:41 PM
Callie Callie is offline
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Oh, Cheryl!!! You don't know how happy I am to see your post. I'm sorry it was a rough road, but I'm soooo glad to see that you're doing okay. I've been thinking of you and wishing you the best!!!!
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Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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  #18  
Old Sun Sep 6, 2020, 01:04 AM
maggiemag maggiemag is offline
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Oh, praise God, Cheryl! SO glad to hear from you! Letís just think positively that the coming rounds will be easier. Thanks for posting!
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Margaret, age 68, dx MDS 5 q- 5/09- now RCMD; also MGUS. TP53 and TET2 mutations
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  #19  
Old Thu Oct 29, 2020, 02:26 AM
Cheryl C Cheryl C is offline
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Hello marrow forum friends.

Well, after remission I tried to continue on the lower maintenance dose of Azacitidine, 5 weekly (instead of 4 weekly) but within a week I was back in hospital again for a week with spiking fevers and rigors - so debilitating!

My haematologist completely agreed with me that I couldn't take any more. All up I had 10 admissions to hospital while having treatment. I still have lingering pseudo gout in my left wrist which suddenly appeared during treatment and attacked both wrists and one ankle.

Having said all this, the Azacitidine did put me into remission and for that I'm very thankful.

2 months post treatment I'm doing quite well. My bloods are still low (Hb92, platelets 53 and WCC 1.2 (neuts 0.9) but they've been fairly stable. I'm struggling to put on the 5-6 kgs I lost - too thin at 45.8 kg. However I'm walking for 1/2 an hour at least every day again (unless it's windy and raining). I thank God every morning that I'm alive, and my future is in His hands.

Thank you again for your support and encouragement!!
__________________
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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  #20  
Old Fri Oct 30, 2020, 02:49 PM
Rarity Rarity is offline
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Good for you Cheryl! Even though the bumps that come along with this disease, keep on fighting! Did they give you something to try and prevent gout during treatment? I ask this because my husband is on medication for that during his treatment with relapsing to aml. Wishing you a long remission! Take Care.

Rarity
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