Ken52's Journey with AML with a Translocation or Inversion...

Patient: Leukemia > Acute Myeloid Leukemia (AML) > AML with a Translocation or Inversion in Chromosome 16

Patient Info: Diagnosed: about 6 years ago, Male, Age: 64

  1. 1
    • Ken52
    • Experience with AML with a Translocation...
    over 5 years ago
    Ken52's Avatar

    Diagnosed

    Oh No

    Howdy all, I am feeling well enough today and chemo fog lifted quite a bit today! I am not sure if I will end up rambling or make some sense , bare with me! Hoping all having a blessed day. I woke up last March 2011 to a little numbness, did not think much about until I was walking the puppies, mention to wife - I ended up in the er and hospitalized, diagnosed with sleep apnea , having had a mini stroke that night. I ended back in the hospital Good Friday, ready to be discharged Easter, but I mention to doctor I had reoccurring fevers, came on each evening... lucky for me the doctor kept me in the hospital, a week later I was given a BMA and early results indicated leukemia - MDS. Blast count was 11 on April 29th? All I understood at that time was blast should be below 5, the higher the number, the worst it was. The oncologist recommended me to MD Anderson as I would possibly need a bone marrow transplant. Another BMA May 10 at MD Anderson along with a multitude other test. My daughter and wife were with me when we saw the doctor the 11th. We were looking at pamphlets about MDS when the doctor came in and introduce himself to us. Fantastic manner, straight forth and very compassionate. He told us we were looking at the wrong pamphlets, I had AML, they were still sub typing it. A moment in time I will never forget, He gave me/us the results of the BMA taken on the 10 May, Blast were at 44... uhm I thought - sure going up fast, at which point I ask - seems pretty fast - aggressive as count was 11 less than 2 weeks before. He said yes. I still had not come to grips with this leukemia thing... I now asked him - If I do nothing what kind of time am I looking at? I am not sure what I was expecting, but when he said - a matter of days - up to a month or so. ???? I think I started realizing how bad this was. When I saw my wife's and daughter face is when it actually sunk in to my dense skull. :( VERY BAD.... It was highly suggested I start treatment asap, like the next day 12th... Wow - I needed to get a few things in order asap! Doctor said a day or so OK. The quicker treatment started, the better my chances. Friday the 13, my doctor confirmed the diagnosis AML with inversion 16 and a kit exon 17 mutation... what all that meant I later learned. He did tell me if I had to have a leukemia, this was one of the better ones to have. I was admitted that day for induction therapy, which would be 28-35 days - being in isolation, with three different chemo's medicines being administered.

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  2. 2
    • Ken52
    • Experience with AML with a Translocation...
    almost 5 years ago
    Ken52's Avatar

    2007-0147

    Clinical Trial

    Opps should put this way earlier - this actually should be #2 in order of happenings -. oh well. the study title is " A phase 2 study of Fludarabine, cytarabine, Filgrastim and Idarubicin in newly diagnosed core binding factor associated acute myelogenous leukemia". wow - that is long . I just pulled up the particulars on this study recently. I am sure I was told all in the beginning, but I know I do not remember much that first week - so much thrown at me. What is crazy is some of the symptoms listed for one the medicines - I have now - year later, but did not have when given. ? maybe something else causing them - who knows with chemos .

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  3. 3
    • Ken52
    • Experience with AML with a Translocation...
    over 5 years ago
    Ken52's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Saying all I do - hoping to show there is light in this tunnel called Leukemia. I was given a cocktail of Fludarabine, cytarabine, and idarubicin for 5 days along with some injections. I was given numerous blood and platelet transfusions to help my blood recover. What help me the most was the very positive upbeat attitude of my nurses, Pa's and doctors. This in turned help me stay very positive and keep a good attitude also. Another tool which helped was Caringbridge.org, a web site for patients - family with health issue. My wife or myself were able to enter information - family and friends responding - this help tremendously while in isolation.... I was a miracle happening! The normal stay for induction is between 28-35 days. The doctor shocked the PA, nurses and myself, when he said my counts had recovered enough to be released after 19 days or so. Wow - I got to go home, but under very strict conditions, as any infection could be very bad. BMA were taken a week and 2 weeks later.... Results were great - good enough to show remission, but I would still need to do 5-6 rounds of consolation chemo, this to help ensure the stragglers were destroyed so I can stay in remission. I had 4 more rounds of chemo over the next 4-5 months, each round consisting of 2 different chemo's treatments given three days in a row with hospital stay of 4 days each. The doctor decided against the last 1-2 rounds ( round 6-7) as the chemo was taking a toll on me.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • Ken52
    • Experience with AML with a Translocation...
    over 5 years ago
    Ken52's Avatar

    quite a few side effects

    Side Effects

    Quite a few side effects - nausea, pain, bowels messed up, head aches, rashes, some hair loss on arms and legs (I went bald on purpose before entering induction - I did not want to wake up with hair in the bed). Bone Marrow Aspirations BMA's - ugh :( My body seem not to like the two different PIC lines I had. Blood clots formed on my left side due to PIC line I had installed in May? Another PIC was done on my right side in July - Blood clots again, so it was removed in July. - ugh - so now I had to be pricked every time I had a blood draw on an out patient basis... 2-3 times a week minimum. The IVs would be used while hospitalized. So I was faced with needing blood thinner injections for the blood clots, but one can not do blood thinners when platelets are low, which happens every time chemo is administered. We worked through it.... Yes a lot of downs, but what I have to say here is I am very fortunate having the doctors, hospital and ability to have this - these treatments - it beats the alternative! Also I lost a lot of body strength due to so much time in the hospital. Chemo brain - this is the strange one to me. Today - I am almost like my old self, I can remember and do pretty darn good. Then there are days - oh well - they can only get better! Bone pain - legs and hands - ugh... numbness and tingling comes and go. Shortness of breath - I also had a heart attack while I was in the hospital - Hum - I did not realize I was having at all - so there are heart conditions now. I figure chemo is about like the round up one sprays on and kills weeds. Main thing is to keep the round up on the weeds and not the tree - flowers or good plants... Well with leukemia - the chemo will effect every part, organ in ones body. I still say it beats the alternative for myself. Even with all these downs - I do everything I can to try and stay positive. In between each chemo, I ended up in the hospital, anywhere for 4-10 days. My blood counts would bottom out about a week after chemo... I would need blood and platelet transfusions numerous times. My heroes are Blood donors - to watch the blood and platelets transfusion - without these I would be no more. I have appointments with neuro, pulmonary, heart and dermatologist. Some of the side effects. My heart doctor told me the great thing is research has come so far as treating and getting different cancers in remission, the down side is the effects it has on one body is harsh and can cause other serious side effects. These other side effects hopefully can be treated also... kind of where I am. Some lumps showed up, so I had biopsies on my arm this last week - doctor found a suspicious spot on my back, so that was also biopsied... waiting on results here. Oh yea - I think the chemo acted like fertilizer for my hair - I seem to have more now than before I was treated!!!!

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  5. 5
    • Ken52
    • Experience with AML with a Translocation...
    over 5 years ago
    Ken52's Avatar

    Remission

    Celebration

    After induction, my numbers were good enough to say I was in remission! I continued with 4 more rounds of chemo and the last two BMA still show remission. I did get a positive count on my last BMA on one portion of the test -something no good, but the count - percentage was below concern level, still waiting on results of one more portion of the test. I am regaining body strength - a lot of physical therapy has helped. I am now able to complete a 6 minute walk test without stopping. I have had two excellent days since I started this journey - one a month or so ago and today - feeling good and brain working. I am hoping for many more of these. So I am starting to have more good days along with my bad days which is a good thing! I wanted to get outside and do something crazy today as I feel like I can, but I figured if I was ever going to put some of my journey down, I better do it on my next excellent day - which is today. Opps - I am way past due for meds - hum - my remembers not quite good as I thought - lol Have a great day!

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  6. 6
    • Ken52
    • Experience with AML with a Translocation...
    about 5 years ago
    Ken52's Avatar

    Other

    Side Effects

    Well, I just noticed how I should be entering information - kind of in order, which my previously is not - kind of jumble together. I am in remission, but have memory problems/ get things mixed up at times, heart problems, low blood counts, nerve problems, leg - hand, bone pain. Just part of the process, currently wearing a heart monitor. I have had dizzy - almost black out spells - doctors still trying to figure those out - maybe meds

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  7. 7
    • Ken52
    • Experience with AML with a Translocation...
    about 5 years ago
    Ken52's Avatar

    Anniversary

    Celebration

    One year ago today, April 29, 2011 was my first Bone Marrow Aspiration while in a local hospital. This started my journey, finding out preliminary results on May 3, then recommended to MD Anderson in Houston. Another BMA taken May 10 and confirmation between the two on May 11 I had AML. Hospitalize with induction chemo on May 13, 2011. So several days I could use for my one year anniversary. I reckon May 3 would be actual date, but I have chosen to celebrate for two weeks. I will start April 29 and ending on May 13 each year.

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  8. 8
    • Ken52
    • Experience with AML with a Translocation...
    almost 5 years ago
    Ken52's Avatar

    another BMA

    Procedure or Surgery

    Wow -waiting the results from the last BMA - I finally had a not so bad BMA. I did have to let the PA know it was still hurting. This time another dose of pain killer was given- this helped. Now the waiting game - 2-3 weeks before I get the results.

    Went as Expected: Neutral/NA
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  9. 9
    • Ken52
    • Experience with AML with a Translocation...
    over 4 years ago
    Ken52's Avatar

    Finally out the house! Mini Vacation

    Celebration

    I finally had 3 weeks without Doctor appointments. Took plenty O2, with replenish locations noted and pa in law pack me up and away we went. I enjoyed every minute of this much needed get away. Highly recommend to all - if you can get out and away - Do It!

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