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.
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My grandmother (76 y/o) has been doing treatment for MDS since June 2008 on Vidaza. It's been 10 days since she found out that MDS has progressed to Acute Leukemia. She didn't know what type of Acute Leukemia and from what I'm finding it is AML. Does anyone know if it could be something else? Her result of her bone marrow test was 38 cancer cells to every 100. So, does that mean her blasts were 38%. Also, she was supposed to go into hospital immediately for 7-10 treatment. Could that have been the 7+3 treatment or the induction phase? My grandmother did get a second opinion and it was the same - doing the 7-10 treatment with 2 week recovery. She has been told she is too old for a bone marrow transplant. She stalled on getting the 7-10 treatment as my grandfather cannot be left alone for too long. She told me her HBG = 8.9 and Platelets = 22 this past Friday. She is meeting with the Dr. again this coming Friday to see if she has other options for treatment. I have never liked her Dr. and can't believe she is waiting so long to see her again, especially since she wanted to get her into the hospital immediately.
I have been reading a lot on the internet and forums trying to get an idea of how fast this can progress and would love to get some feedback from others that have gone through this or know someone that has. I live over 2,000 miles away and want to get an idea of when I should go see her before she gets too sick.
Appreciate any assistance!!
Brandy
I have been reading a lot on the internet and forums trying to get an idea of how fast this can progress and would love to get some feedback from others that have gone through this or know someone that has. I live over 2,000 miles away and want to get an idea of when I should go see her before she gets too sick.
Appreciate any assistance!!
Brandy
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Don't delay -- it is not going to go away or get better on its own -- it can only get worse without treatment. She may elect paliative care and that's OK if she does not want to face the miseries of chemo. But at least that will be a decision that she makes and not something that chance makes for her. I was 65 when I went through it three years ago, and I would do it again in a heartbeat ... even if I were 98. --dave
She is concerned about the chemo and vomiting. My grandmother had surgery for hiatal hernia - http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002122/ and she cannot vomit, only dry heave. She is not obese and does not smoke. The nurse said they can give her medicine for vomiting, but she still will be nauseous. She did say she can stop the treatment whenever she wants.
She was very interested in Heather's regimen, which I sent to her. She started taking Protadim - http://www.protandim.com/what-is-protandim/ a couple of weeks ago, which contains Turmeric Extract. But, I do not know the amount and if has the same effect as curcumin.
I really think she will get everything on Heathers list and hopefully it will help. I know she will do her research now that she has been told she has AML. She has her appt this Fri. and I will keep you posted.
Thanks again for everyone's feedback!
I received little information so far about my grandmothers appt. through my mother. But, I am to find out more later when my grandmother gets home. All I know, the Dr. suggested a diabetic injection under the skin 5-10 days to see if it works. Of course, my grandmother can stop at any time. She told my mom that she still has not made up her mind. I appreciate everyones concern about her doing chemo straight away, but I really do not believe she is going to do chemo and not sure about this diabetic drug. She is not diabetic. My concern is not getting her to do chemo or any other treatment if she doesnt want, but believe she still does not know the severity or fast progression of AML.
I do not want to lose my grandmother, but I do not want her to go un-informed. Either way, she is going to get sick and will need help. My family needs to make plans to help her and my grandfather. My grandfather depends on her so much and will need assistance when she gets ill.
I feel like am I the voice so to speak and have researched AML so much this past week. I did ask if she would try and find out the subtype, so I could get some idea. I have read several places that diagnosis is 4-6 weeks worst case scenario. But, there have been cases I read that they last for 6 months to a year(s). I do not know if those cases had MDS prior like my grandmother (for the past 4 years). Everything I read about AML with prior MDS in older patients has been grim. The statistics and articles are vague as I know it is a case-by-case basis and not much is documented in my grandmothers age range.
If there is anything you may provide, links, articles, experience, anything, etc., I have found some comfort in trying to find everything I can about this and need help on how to help my grandmother realize her options. I do not feel like I am over-reacting, just being proactive in an unpredictable disease that could quickly take my Hero.
I will keep this thread updated and thanks again for any information and support - Brandy
She is taking her protandim, beta-glucan, and oriental tea pills, which may improve her chances. She hasnt given up, she is just doing her own thing naturally.
I can honestly say that I felt relief that she acknowledged what I have been so anxious about the past week. Again, I do not want to lose my gm, but this is not my decision. I am now focusing on information to recognize symptoms of the progression and planning with my family of what we have to face. My gm has her mortality to face and we will prepare for the worst. Since my sister and I live over 2,000 miles away, we will arrange our time to see her. I am going to visit next Saturday for a week and my husband is coming later that week with our son. I hope that it wont be too late and just another of many trips we will get to see her. My sister and I want our selfish time with her without making her feel too vulnerable and our family needs to think of our grandfather.