WVgirl2424's Journey:

Survivor: Leukemia > Acute Myeloid Leukemia (AML) > AML with Changes in Chromosome 11

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 6 years ago, Female, Age: 50

  1. 1
    • WVgirl2424
    • Experience with AML with Changes in...
    over 5 years ago
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    Acute Myloid Leukemia. It was listed wrong on here

    Oh No

    I had not felt well for a long time. I had been to the doctor twice, no blood tests were ran. One morning I came home from work, after a 12 hours midnight shift (I was Nursing Supervisor of NH) and told my husband that I felt like I was dying. He took me to the local ER and would not leave until they found out what was wrong with me. They said I was anemic but could find no blood loss through exams. The doctor said see my own physician and that he had ordered other tests that my doctor would receive. My husband and I went to the appointment two days later. I had told my husband that I probably was low on iron, folate or a B vitamin and he would give me injection to straighten things out. The doctor walked in and I said " well doc what am I low on?" and he looked at the chart, looked at me and said "nothing". I just sat there for a second and then tears began to flow. My husband was looking at me concerned and asked what was wrong. I had to tell him that I most likely had Leukemia and would have to have bone marrow biopsy to confirm, but I knew I had it. We cried for three days. In our 30 years together we had never gave up on anything. We talked and agreed we would fight this with all we had. I was sent to OSU James Cancer Center with 27% blasts and received initial chemo of 30days , 24 hours a day. My husband never left my side. I was kind of lost inside. I knew when the doctor said the worst AML I could have that I was in for a big fight. I had always been healthy, no health problems and now this?? I just had to pray to God for strength and guidance. I held onto my husband and here we are still praying, and holding each other.

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  2. 2
    • WVgirl2424
    • Experience with AML with Changes in...
    over 5 years ago
    WVgirl2424's Avatar

    bone marrow biopsy

    Procedure or Surgery

    This was the worst pain I had ever felt. The doctor numbed the skin but when they aspirated the bone marrow I almost passed out. He did not give me any medication what so ever and now after having it done quite a few times, I know he should have given me something for pain. They told me it was pretty painless that they numbed it so when my husband asked if I needed him to go in with me I told him no that it shouldnt be too bad. Boy was I wrong! I would rather give birth to ten babies. Not to scare anyone, but if you have this done tell them to give you a drug called dilaudid. It is the only drug that helped me with this pain.

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    • WVgirl2424
    • Experience with AML with Changes in...
    over 5 years ago
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    Decision Point

    When I became ill and diagnosed with Leukemia, I was employed and had been at this particular job for 9 months or so. While I was getting my initial round of chemotherapy I received a card from my boss saying how sorry she was that I had leukemia however, I was out of PTO time and had 40 unpaid unworked hours and so I was terminated....lost my job= lost my health insurance. I had to accumulate 15,000$ in medical bills in order to get a state medical card. The lady said I did not qualify for food stamps, my husband said " we did not apply for food stamps!" " we just need health care for her" . The hospital that I was going to was in a neigboring state and would not accept my card, so they sent me to WVU Ruby Memorial Hospital and Mary Babb Randolph Cancer Center. The next week OSU telephoned to say they would take the card and I could come there, I told them I would call them if I decided to come back. I went for my first appointment at WVU, met the nursing staff, my new physician. The doctor at OSU implied to me and my family that I was in remission and would stay there for extended period of time. I met this doctor, my husband and daughter and law were with me. I sat down and my husband and daughter in law were standing listening. The doctor informed me I had the worst type of leukemia you can have, then he told me that I would not survive without a bone marrow transplant. That I would only live as long as the chemo worked and eventually it would stop working. I was in shock but i grasp my husband's hand and ask the doctor to explain the diagnosis. It was at this time that I heard a whimpering cry and looked at my daughter in law's face, it was white with tears streaming down it, my husband grabbed her and sat her on the exam table. We explained to the doctor what we had been told. He pulled out a paper and as he explained what I had, treatment and recovery, he wrote everything down for me. He was the most compassionate physician I had ever met, and I am a nurse. The decision was made at that time, WVU was the place for me! They showed they cared, they told me the truth and said they would be there with me through it all, and they have.

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  4. 4
    • WVgirl2424
    • Experience with AML with Changes in...
    over 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I was admitted to WVU on their bone marrow unit for chemotherapy for 7 days. It was maintenance therapy, to keep me in remission while they tested my 5 sisters and brother for stem cell match. It was so very hard. I had been at OSU for 30 days of chemotherapy and it was horrible, diarrhea for 10 days and finally I refused to eat unless they gave me something to stop it. So, 7 days was still hard but knowing I would be back home soon was good. What I did not realize at that time was that I would feel fine while in hospital but a week at home and I felt awful. I went for blood tests at local cancer center (they faxed results to WVU, it is 3 hours from my home) my WBC count was 0.8. I would sit and wait for an hour to see the results because I usually needs blood and platelets. I was sitting with my husband and my cell phone rang, it was WVU. The nurse on the other end verified who I was, and then informed me that my older brother and younger sister were both matches for me, the doctor decided to use the brother she said. She said we will call him later today, you can go ahead and let him know, we know this is a special occassion for the both of you. All I could do is cry, I could barely speak, I handed my husband my phone and nurses came running at me thinking something was wrong. My husband had to talk to the nurse on the phone, then explain to the nurses at the cancer center. After I settled down, I called my brother. It was an emotional experience. Then my husband and I called our sons and then the rest of the family.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    • WVgirl2424
    • Experience with AML with Changes in...
    over 5 years ago
    WVgirl2424's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I entered the hospital on June 28th 2011. I was taken into surgery at 7 am the next morning where a PICC line and a Central line was placed in my chest, xray was done, echocardiogram was done. Immediately after that chemotherapy was started. My WBC count was taken to 0 between June 29th and July 3rd 2011. July 4th was my day off and the stem cell transplant took place on July 5th 2011. I went through so many emotions. I cried everyday. My brother was there from the 28th through the 5th, he was in pain from shots to increase his stem cell production, his joints ached so bad, I could see it in his face but he would not admit it. My daughter flew in from Brazil to be there with me for 2 weeks. I literally cried everyday, I cried happy tears, I cried sad tears. It is the most tramatic experience of my life, and I cared for me sister who passed away from cervical cancer 2 years after diagnosis. I felt I had no control of my life, my emotions, nothing!

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    • WVgirl2424
    • Experience with AML with Changes in...
    over 5 years ago
    WVgirl2424's Avatar

    stem cell transplant

    Procedure or Surgery

    The stem cell transplant was and is much like a blood transfusion, it took about 45 minutes because the cells do not pass through a IV pump, they run from gravity, the pump could damage the cells. It was a very emotional time, I lay there looking at my brother who is sitting at the foot of my bed, knowing what he went through for just this 45 minutes of what is a life saving procedure. It can save your life if you do not get GVHD. I think everyone has a small amount of GVHD, mine was extremely dry skin mostly to my face. After the transplant, I was in the hospital for about 10 days or so, untill my white count started climbing up again without any GVHD. At that point they moved my husband and I into an apartment connected to the hospital. It was wonderful, we could cook our own meals, we have a full apartment of our own. I left the apartment and came home after 42 days total, from transplant to discharge. This was great because they told me to be prepared for 100 days in, because for some it takes that long. After coming home, I went through my fingernails becoming brittle and breaking off, my hair started growing back, alot of constipation but fluids took care of that and diet, once I could eat fresh veggies and fruits with natural fiber in them. I also went through menopause while going through chemotherapy. They said it was a possibility and so I knew it would happen to me, I had already been about to go through it before (I had hysterectomy at age 27), now I was completely through it. This changes the dynamic workings of a woman and her sexual recreations. Dryness and a thin vaginal wall is what can really upset a woman. There is a cream for this, low in estrogen, so, I will use it as both my oncologist and my gynocologist assured me it is so low in estrogen that it was not dangerous. My husband has been so supportive, he is the one that needs people to talk to , all he did was listen to me talk crazy for days and days in the hospital. He said it has been worth it jut to have me back now. This past week I had all my teeth removed and dentures put in. Chemo had ruined my teeth from the inside out, so I needed 5 pulled now and dentists said I would just keep coming back until all pulled, so I just had it done all at once. It is painful, but not as painful as the blisters I had in my mouth after chemo, I had to have a pain pump at that time, it was horrible and lasted about 4 days. All side effects. All new changes to get used to.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  7. 7
    • WVgirl2424
    • Experience with AML with Changes in...
    over 5 years ago
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    Hair is back

    Celebration

    I awoke on a rainy day in October and went into rest room, washed face and then looked into mirror and thought hmmm I bet if I wet my hair I could comb it. It worked! I was so happy. I do have a wig, my husband bought it for me. I walked through our local mall and everyone staring at the woman with the bald head. He took me to the wig store and after the clerk put a few wigs on me and I didnt like them, my husband picked one out, telling the clerk it looked like my old hair. She put it on me and I couldnt see the mirror yet, but I could tell from my husbands face, it was good. She spun the chair around and I began to tear up, and all I could say way "there you are". I love that wig and will never give it up. It made me feel like a woman again, made me feel like no one was staring, and they werent. It was wonderful to have my hair, now it is about as long as a boy's haircut.... but growing.

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  8. 8
    • WVgirl2424
    • Experience with AML with Changes in...
    over 4 years ago
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    I did do clinical trial when transplant was done.

    Clinical Trial

    I had to take a cholesterol med for days prior to transplant and 30 days after transplant. My donor took it 30 days prior to and then stopped med. Now we see how the trial goes.

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  9. 9
    • WVgirl2424
    • Experience with AML with Changes in...
    over 4 years ago
    WVgirl2424's Avatar

    Hair is back

    Celebration

    I have hair but prior to leukemia I had very long hair. Ofcourse I lost all of it after chemo. This Christmas I was looking at pics of last Christmas. Last year I had a shading of hair, now I have had 3 trims and have an actual short hairstyle. I use a shampoo from Sally Beauty Supply and it has helped my hair grow.

    1 Comment
  10. 10
    • WVgirl2424
    • Experience with AML with Changes in...
    over 4 years ago
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    Milestones

    21 months post transplant without signs of graft vs host disease! Blood work almost completely normal! Only downside is muscle and joint pain, stretching helps with those ailments!

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  11. 11
    • WVgirl2424
    • Experience with AML with Changes in...
    over 4 years ago
    WVgirl2424's Avatar

    Mouth dryness

    Side Effects

    I have many side effects from my stem cell transplant. Joint pain and mouth dryness is a daily reminder. I drink at least 8 glasses of water a day and try to stretch and exercise daily but it continues. The one part that is with me daily is the worry that the cancer will come back, or will pop up in another area of my body. That is a risk I was told of before chemotherapy. However, when you have 3-6 months to live you really don't care about side effects of the treatments to save your life. This isn't really a complaint, I'll gladly live in this pain and discomfort forever to be able to be at my husband's side, watch my children grow older and watch my grandchildren grow. I have 2 grandchildren, both teens. They came to me at ages 5 and 6 when my son married a perfectly wonderful woman and the children brought him even more love into his life. We all truly love them as if they have always been here. However, I do want to see a grandchild born, watch them grow, hear their first words or see their first steps. At times I feel guilty for wanting to see this when the grandchildren I have are the light in my life. They visit often, they call just to say they love me, they are my little loves. On with my questions, how long does the mouth dryness last on average? And, are there any other AML survivors through stem cell transplant out there that has an idea on life expectancy? My doctor says with technology, survivor lengthens. That if I make it 2 years, I could live like I always did, never have cancer again. I know studies are continuously being done. Just wondering current life expectancy. It's all confusing, some smile acting like I've beaten it and ones act as though it's coming back anytime. Sorry to stray off topic, just really looking for something, I know no guarantees. Thank you

    1 Comment
  12. 12
    • WVgirl2424
    • Experience with AML with Changes in...
    over 3 years ago
    WVgirl2424's Avatar

    Other

    Oh No

    Diagnosed win Graft vs Host Disease 11/2013. it's is of the skin in nature

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  13. 13
    • WVgirl2424
    • Experience with AML with Changes in...
    over 3 years ago
    WVgirl2424's Avatar

    Photophoresis

    Drug Therapy or Medication

    Had a smart port put into right cheat 11/2013. Started photophoresis treatment ate 1/2013. I get treatment once weekly, which is 6 hours driving round trip. This treatment requires my blood to go through a machine and separate m Zt cells from other cells. Then T cells are treated with a drug called uvadex and put Nader uv light to activate med. then is returned to me. For the next 24 hours I must wear sunscreen and uv protective glasses as the med makes me uv sensitive. I am already seeing improvemt, small but there so I am lucky. It's been 4 treatments so far and doc didn't expect signs of improvemnt usually 2-3 months. I have 75% survival rate with this disease, better odds than with leukemia. God is always with me, blessing me and comforts me. Pray he does the same for all of you.

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  14. 14
    • WVgirl2424
    • Experience with AML with Changes in...
    over 3 years ago
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    Anniversary

    Celebration

    2 1/2 year anniversary them cell transplant

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  15. 15
    • WVgirl2424
    • Experience with AML with Changes in...
    about 1 year ago
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    Chronic GVHD

    Oh No

    Told last year that my GVHD is chronic and treatment will continue monthly until they stop working, then there is nothing they can do but possibly another transplant. However, my doc has not put that into the treatment plan.

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  16. 16
    • WVgirl2424
    • Experience with AML with Changes in...
    about 1 year ago
    WVgirl2424's Avatar

    Anniversary

    Celebration

    7/5/2016 5 years since stem cell transplant. Last year I walk/ran over 1000 miles. Even with GVHD, eating healthy, staying fit, getting treatments and enjoying life as much as possible

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