Acute Myelogenous Leukemia (AML) Support Group
Acute myelogenous leukemia (AML), also known as acute myeloid leukemia, is a cancer of the myeloid line of blood cells. Patients with AML usually present with symptoms such as fatigue, bleeding, infection, prompting medical attention. An abnormal blood test reading will then result in further testing in a hospital with a hematologist to determine AML.
My husband was diagnosed with AML 6 weeks ago. He went to the ER because he had been weak several days. He thought he might have a stent clogged. After taking blood the ER doctor came in and told him he most likely had AML. We were shocked to death. He was admitted that night.
In a couple of days a bone marrow biopsy was done. The next day the oncologist confirmed AML. He told him he would have the 7 day 24 hour chemo. He really did not have a real hard time with the chemo. His numbers came back up better than the doctor thought. He said his body would not be able to withstand the consolidation chemo. He is 73. He said after rehab he will do another chemo (don't know the name yet) on an outpatient basis. It was not a cure but only to prolong life. This statement was very discouraging to me .It really left no hope.
He is in rehab now and has done great. He only has another week before we go home. He also goes back to the doctor next week.
I just cannot believe there is no better hope than this. Has anyone experienced anything like this?
In a couple of days a bone marrow biopsy was done. The next day the oncologist confirmed AML. He told him he would have the 7 day 24 hour chemo. He really did not have a real hard time with the chemo. His numbers came back up better than the doctor thought. He said his body would not be able to withstand the consolidation chemo. He is 73. He said after rehab he will do another chemo (don't know the name yet) on an outpatient basis. It was not a cure but only to prolong life. This statement was very discouraging to me .It really left no hope.
He is in rehab now and has done great. He only has another week before we go home. He also goes back to the doctor next week.
I just cannot believe there is no better hope than this. Has anyone experienced anything like this?
Hugs and prayers.
Karen
I'm sorry that your husband relapsed. I've been there. I've also been told that the medication I'm currently on will only prolong my life. I just turned 50 and am not ready to give up. I was offered the opportunity to be a part of the ASP2215 study in February after my post SCT. I figured I should try since the prognosis otherwise wasn't what I was ready for. Of course there are never any guarantees when you are part of a trial. Unfortunately my experience wasn't good. In short, I developed PRES from the medication. In layman's terms, my brain swelled up causing seizures and coma. (for about 7 days) The "R" in PRES stands for reversible. Thank goodness it reversed. I was very close to not making it. Family, close friends and clergy were called because it was so serious. Anyway...that was just my experience. I asked my transplant doctor if there were others who had the same problem. Nope! Just me. One other person passed away from a brain hemorrhage. So of all the people that have been in the study, there have been very few severe side effects. I've heard that it has worked for others.
Getting a second opinion is a good idea. I doctor at Mayo Clinic in Rochester, Minnesota. I have been very pleased with every doctor I've seen. They are great at collaborating with physicians outside of the Mayo system as well as with their peers, of course. I've met a lot of the doctors during my 7 month stay in the hospital.
The oncologist that I was seeing told me straight up that a stem cell transplant would be my only hope for survival. I wouldn't be here today if I would have chosen not to have it. I have always had hope. I also have a rather large prayer group. For me, that helps give me hope. I haven't been a part of a church for a few years. Interesting how things change when your life is on the line. People are calling me a miracle because of the 2 times that I was close to not recovering. God is good! (I'm not pushing my religious beliefs on you by any means. I feel good when I tell people about my story and how prayer and the doctors got me through.)
It's important to not give up hope! Positive thoughts help immensely. Sometimes it's very difficult to be in such a tough situation, but it's possible! I say that from lots of experience! I was not a very positive person prior to my diagnosis, but somehow the desire to live helped my glass be half full, rather than half empty. :)
Sorry I've rambled. It's kind of therapy for me.
My prayers go out for you and your husband.
Please keep us posted.
Christina
I have been in remission for 27 months now, still getting monthy labs and I still don't understand my labs sometimes. I do now because white cells and platlelts both start from the same immature cells that sometimes when one goes up the other may go down a little. More important than your husbands WBC is his ANC absolute nuetrophil count. Usually, if this is above 1 all is ok. Is your husband receiving nuepgen shots to stimulate WBC? I had them between every chemo session-gave them to myself without any trouble.
I am so pleased to hear you have a prayer network as support and please count me in that group. I truly felt the loving arms of all the prayer warriors during my fight. Miricles still happen and God is a healing God and the great physician!
Blessings
Julie
I was just wondering what the results off your husband's bmb was. I'm so sorry to read this about your dx. you are absolutely correct, The God who created all, is in control. Do you have a treatment plan yet?
Praying for you both
Julie
You and your husband have been on my mind and prayers. How did the Dr visit on the 23rd go and was his BMB clean? Also, what is the latest on your DX?
Julie
Julie, I will have surgery after Christmas. Unless something else is found during surgery, I will only have a hormone pill for 5 years and radiation. I feel very blessed and I am positive the Lord will see me through this as well. Thank everyone that prays and please continue to remember us both.
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I am thrilled about Byron. Just another bit of evidence of God's existence and goodness.
The same will happen to you. The tumor will be completely removed, will not have spread. It will be cured by the surgery, but the insurance policy of the pill and radiation will make it a definite. The same procedure cured my mother!
XO
Cliff
You both continue to be in my prayers
Julie