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My AML Struggle

leukemia aml aml aml diagnosis aml m4 leukemia

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#1 Johnny G

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Posted 13 December 2017 - 01:40 AM

Hello everyone,


Well i've been a regular on these forums, although I have never registered until tonight. So I figure I would start off by introducing myself and letting you know about my newly diagnosed Leukemia.


My name is John I go by Johnny G online. Some of the things I enjoy most are Computer Programming, Software development Web Development. Mostly my passion is Medical related. I love everything about Medical. 


Last November 2016 I was diagnosed with AML Leukemia. So I guess I'll take you guys back before that to give anyone else who's interested a chance to learn how all this came to be. Then I'll give you guys an update of my current status.


So around Jan 2016 I was having some dizziness this was a weird type of dizziness that was more of a rocking type feeling. Kinda like if your on a raft sitting in water and a small wave hits you every now and then, or the way an elevator first takes off and you feel that sense of movement. Anyhow I noticed this and I have bad anxiety already due to having OCD and some ADD when I was younger, but the OCD I still have it makes me do things over and over and count stuff all that fun stuff. So I was having this dizziness and it was freaking me out but I just ignored it the best I could.


  Also around this time or a few months later I developed a bad Sinus Infection, I mean my nose was always clogged up and I had a lot of Sinus pressure headaches, it was bad. Well this had went on for sometime and it just seemed to keep getting worse, or at least not getting any better. It was winter time in Missouri and there was a lot of snow on the ground. So that didn't help matters. So this was going on along with the dizziness and I had been to the Doctors a lot, they checked my ears, cleaned my ears, gave me ear drops, checked my heart gave me EKG's all that stuff, even done CBC labs. well nothing would explain this, even at one point I wore an Advent Heart monitor. So I'm having this sinus infection and also dizziness and this continues for quiet awhile.


A few times I have a minor nose bleed only in my right nostril, I mean when I blow my nose bloody snot and boogies would come out or crusted dried up blood. I didn't think much about it other than well sinus infection is causing it. Later on I start noticing these little pin size freckles start popping up on my inner forearms and some bruises would show up on occasion that I wouldn't recall how they got there. Also I had a couple night sweats, where I would wake up drenched in sweat, of course I though fever but I never had fever. So me being me and always fascinated with medical and being a hypochondriac most my life, I decided I better start researching my symptoms myself in the old Merck Book so I started thumbing through it and noticed a few things, like the tiny dots I thought were purpura, and of course I also found anemia for the dizziness. The sinus infection well that wasn't all that worrisome. Only when I started putting these all together I realized I was looking into more Blood conditions than the normal everyday common cold stuff.


The tiny pin size dots kept getting worse along with my dizziness I was getting short of breath real easy after a walk. I figured this was because of how cold it was outside and me having to breath through my nose was making me run out of breath real fast, I also had super high heart rates at rest my heart would be 120 or better. So I knew something was wrong, also my Anxiety didn't help in that area, my poor heart was beating like crazy. So with the dots popping up every where I figured maybe the Sinus infection spread to my blood and is causing some sepsis infection now. So I went to the doctor and he told me he couldn't do blood work unless I was running a fever. Well I wasn't running any fevers so the blood culture was not happening. You would think the Doctor would have recognized the dots as being petechiae and done other test right? Well that didn't happen.


So a few weeks went by and by this point im feeling bad, I'm pale I'm dizzy all the time my heart is racing, short of breath, still have bad sinus headaches and sinuses. So I'm in the shower and I'm washing my hair when I can't even finish washing my hair and all the blood is run out of my arms, they are completely numb I'm so lightheaded I have to squat down in the shower to keep from passing out, so here comes my anxiety again, heart is racing so I get out of the shower and head back to the doctors. I show the doctor my petechiae and how Im all dizzy and all this. So she had me lay on the table and started checking my spleen to see if it was enlarged.


She also looked up my last CBC which was about 5 months ago and noticed my Hemoglobin was low then. So she told me well you were anemic awhile back. She ordered a Emergency CBC Blood test and diagnosed me with Anemia, the results came back that I had low platelets and my hemoglobin was a 5.3. Ah Ha! that explains my rapid heart rate and my dizziness and my shortness of breath, man we are on the right track now. Little did I know we just brushed the surface of my problems. A doctor came in later in my room and said "Well It looks like Leukemia!" I said "Oh yeah how did I get that?" his reply "Well bad luck, I guess!" Great so at this point I didn't know how bad leukemia was. So I'm just puzzled at all this and how fast it all took place.


A little while later another doctor came in and he told me well I know they said leukemia but it's looking like it might be Myelodysplastic syndromes (MDS) cause your counts are coming up. They said they would need to do a Bone Marrow Biopsy to be certain. So they shipped me off to another hospital and the next day I got a BMB done. Some time went by and finally I talked to the doctor and he said yep it's not leukemia its MDS. I think when you got your sinus infection your Immune system went hay wire and started attacking your good cells. So he explained all this to me and decided to start me on some Prednisone. Well few weeks went by and I needed another red blood cell transfusion and some platelets and all that, so this kept happening counts would drop then Id need blood. So the doctor decided he's gonna keep upping the dose of prednisone so now im on High dose of 80mg a day. Eventually another bone marrow biopsy was ordered and this time it showed leukemic cells in my marrow.


So they admitted me in MU Hospital Columbia,Mo great place by the way! So I'm sitting in MU Hospital and the Oncology team is starting me on a  7+3 Regiment of Cytarabine Idarubicin. 5 days of Cytarabine and 3 days of Idarubicin. I guess this is standard treatment or at least main line. So I started Induction Chemotherapy in December 2016. Man it was terrible, at first it was all good, they put a PICC line in my right arm and all that stuff. One day I went into vTac started having palpitations real bad. However the worse part is a developed a condition known as Sweet Syndrome. It's where these little pimple like things pop up and man they grown into some ugly sores that can get about 2.5 inches in diameter, they burn and hurt and man it sucks I had them all over my face and everything. In fact heres a picture of it.




Attached File  me.png   794.2KB   12 downloads


Well anyhow I finished chemotherapy and the Sweet syndrome cleared up, it was treated with believe it or not High dose Prednisone, I just can't get away from that drug. So my counts wouldn't recover as fast as the team wanted so they gave me some neupogen shots in the stomach.Then they done a Bone marrow biopsy to see if I was in remission. Turns out I wasn't.


After being discharged from the hospital which I was there 4 months. I met up with an outside hematologist, who also done a BMB and came back and said You don't have AML you have to have 20% or more blast to have AML. You have CMML so he diagnosed me as CMML and started treatment with Dacogen or better known as Decitabine. I would go and get this for 5 days at a time. Well I done this for awhile. The doctor said I had CML that turned to AML and now im at CMML. Wow hold up here how many different diagnosis are you guys trying to give me here. Lets see MDS, CML, AML, CMML hmm. somethings not right here. I'm a leukemia magnet, I guess I got all of them whats next ALL? No seriously though, i'm starting to wonder at this point if I just got poisoned with chemo for nothing.


So now I'm getting this chemotherapy, decitabine and I also am trying to find away to move my treatments out to California so I can be out there with my Brothers and my Mother, who I haven't seen for years. As I had been living in Missouri with my father who just recently passed right before I got sick with Cancer. So I finally get out to California and get setup to where i'm seeing a Hematologist and still getting the decitabine treatments.


Some time passes and my platelets keep crashing. I'm having to get platelets every week. So the doctor is wondering why this is, he done a Bone marrow Biopsy and didn't detect that much blast at all, yet my platelets keep crashing fast. So eventually I'm still working my plan which is to get into UCLA, I finally get to UCLA and get a new doctor. Who does BMB and re-diagnosis me with AML Refractory not having achieved remission. Oh boy! So we started Re-Induction Chemo in September 2016. I had this time High Dose Cytarabine or (HD-ARAC) regiment. 


During the Re- Induction I broke out with Sweet Syndrome again and it was bad again, and they treated it with high dose Prednisone again! Also I didn't achieve remission Again! It took me 28 days to get out of the hospital, before my ANC came up to 500. So I said man i'm taking a break, they wanted to admit me like almost a couple weeks later, before Halloween, I said no i'm gonna spend Halloween at least out of the hospital with my nieces. So I did.


So now I'm back in the hospital and on a new regiment called MEC - Second line Salvage Chemotherapy  it involves the drugs Mitoxantrone, etoposide and high dose-dose Ara-C. So I finished my chemo and guess what I broke out in Sweet Syndrome again for the third time, even though they had me on pre-op steroid meds before they started. This time the Prednisone didn't work. So they had to get rid of it with Potassium Iodide. So currently I'm here in the hospital waiting on my ANC to get to .500 so I can go home I been here 25 days so far. That's my story and where I'm at so far. I hope it can help someone, or at least give you something to read. I'm now a member of this forum and also I am in the process of creating my own medical forums. So you can check that out if you like. Sorry for the long post but I didn't want to keep reading everyones post and not contribute at least something. My Hair fell out too, and also I'm bored in here so a long post just seemed like a good ideal. Take care everyone.

#2 Gcasa


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Posted 13 December 2017 - 08:17 AM

You are amazing!
You have presented an interesting case history. You are both patient and historian of your illness. I'm impressed with your ability to be both clinical and involved. Please keep posting.

#3 wanderer


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Posted 13 December 2017 - 10:03 AM

What a wild path you’ve been down! Diagnosis-wise they have certainly thrown every letter of the alphabet at you. Your story is a potent reminder of the need to be your own advocat. Hoping your ANC will rise quickly and get you out of the hospital soon.

#4 Paul R

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Posted 13 December 2017 - 11:30 AM

Wow. What a journey. Stay on top of this.

#5 Noodle


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Posted 13 December 2017 - 02:21 PM

Greetings Johnny G,

Thank you so much for sharing your journey!! Your fascinating story is/will be valuable to others as we all realize no two AML experience is the same. Just like you, until this post, many come here and never share.

MEC is the big gun chemo for induction. I am confident it will get you into remission. The great news is you made it through. When will you have your BMB to check for remission?

Praying for remission.




DXD 22 March 2013 AML M4 Inversion 16 Negative FLT 3 & CKIT

Induction 7+3 & 4 Rounds of HiDAC, lowered dose due to slow count recovery.

Qrtrly PCR & Phlebotomy for high iron stores

Almighty God is my redeemer and HEALER!!@

Psalm 103:1-5 — “Bless the Lord, O my soul, and forget not all His benefits.... who heals all your diseases..

Mark 10:27 (New Living Translation) — Jesus looked at them intently and said, “Humanly speaking, it is impossible. But not with God. Everything is possible with God.”

#6 CarrieR


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Posted 19 December 2017 - 11:21 AM

Hi there!  Thank you for sharing your story!  Youve been through a lot, but with a positive attitude it looks like.  Who is your onc at UCLA?  My hubby was treated there.

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