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.
Cliff and I thought it would be good for everyone on the forum to enjoy and be inspired by all of the survivors' happy birthdays.
A "happy birthday" can be when you just got a good medical report, or it could just be any period of time you want to tell us about (e.g., Ben's 100 day birthday).
Please let's keep this thread positive -- if you are having trouble or issues, there are all of the rest of the threads for you, and we will surely help you. But we want this one to be one where those who have been just DXed can come and say: "Hey, all of these folks have made it and are celebrating -- I can make it too!!!
Please provide positive info from your recent exam if there was one. If not, just want to tell us about a time milestone.
Let me be the first to start. I got a great report yesterday. I had AML and still have MDS, but no matter -- I am three years and going on three months since my last treatment ... chemo only. I am now 69. Here are my important blood numbers: WBC: 4.8 (good); RBC: 3.64 (low); MCV:114 (high); MCH 39 (high); platelet: 110 (low). Might sound like bad numbers to you, but they have been consistently there for 3 and 3 now, so it just shows that survival does not depend on perfect numbers. My onc says as long as they don't change dramatically, that shows I don't have a blast problem (relapse). They don't want me back there for another six months. So wish me a happy birthday! -- dave
A "happy birthday" can be when you just got a good medical report, or it could just be any period of time you want to tell us about (e.g., Ben's 100 day birthday).
Please let's keep this thread positive -- if you are having trouble or issues, there are all of the rest of the threads for you, and we will surely help you. But we want this one to be one where those who have been just DXed can come and say: "Hey, all of these folks have made it and are celebrating -- I can make it too!!!
Please provide positive info from your recent exam if there was one. If not, just want to tell us about a time milestone.
Let me be the first to start. I got a great report yesterday. I had AML and still have MDS, but no matter -- I am three years and going on three months since my last treatment ... chemo only. I am now 69. Here are my important blood numbers: WBC: 4.8 (good); RBC: 3.64 (low); MCV:114 (high); MCH 39 (high); platelet: 110 (low). Might sound like bad numbers to you, but they have been consistently there for 3 and 3 now, so it just shows that survival does not depend on perfect numbers. My onc says as long as they don't change dramatically, that shows I don't have a blast problem (relapse). They don't want me back there for another six months. So wish me a happy birthday! -- dave
Cliff, this site is a true blessing. I have a friend who was diagnosed with ALL recently and I wished the ALL site had the kind of support for her that the AML site had for me.
I also lost a friend who was diagnosed w AML a few months after I was. She lived in california and we spoke often and texted regularly. I tried to get her on here, but she had three kids and not alot of time for internet. I was devastated when her BMT did not work. Just so everyone knows, she had MLL (Multiple lineage Leukemia) I think that means she had AML and ALL both. Not a good prognosis at all and very rare.
They diagnosed her with AML early and from the little she told me, my big doc said he thought is sounded like she had a biphenotypic leukemia. I didnt even know what he was saying, but it turns out he was right.
That is what is so amazing about this group. We do NOT kid ourselves about what we face, we educate ourselves and each other. We support and love each other in the good and the bad, but most of all we strive to make the future of this disease easier for those diagnosed.
I will forever appreciate this site and the members in it. Those that stay, AND those that come and go. I get it. I left for a few months after treatment ended. I wanted to live and NOT think of it, but I am so glad I kept my promise to Dave and Ollie to stick around.
Am I in fear of relapse? Pretty much every day. Do I know I will have a community to ask anything of if that happens? Yes, I do.
This site is aptly named. Daily strength indeed.
Chubby Ed
What is so wonderful about this website is that those of us who have passed many of the daunting milestones of this "journey" (to use a very overemployed metaphor) are here for our brothers and sisters who are just going through it now. As I have said many times, I wish I had had that guiding hand as I went through the trauma of diagnosis an treatment. I think that is why I have deeply repressed so much of the experience. It was so frightening to me, that it was better to compartmentalize that aspect of my life.
There was a time, especially when Ollie relapsed and went to hospice, that I was beginning to think that DS was beginning to get to me in a negative way. I found myself continuously worrying about everyone, spending sleepless nights waiting to find out that they were on the rebound. When Ollie died, that was my low point. I think I cried more about his death than Ollie would have about himself. He had that wisdom, that calmness about him, and a realism that not everything is destined to go in the most satisfying direction. I am over that now. I can think of Ollie and laugh about some of his comments, his farmer Brown suspenders etc. I have realized that the commonality of diagnosis is perhaps the smallest thing that keeps this group together. Rather, it is the incredible concern we have for one another, a true respect for our individual life situations, and a sense of humor that lightens everyone's burden. I cannot see myself leaving this group. I love everyone here and often wonder to myself . . . how is it possible that such an incredibly diverse group of people can begin by writing to a group of strangers and so quickly feel their ups and downs as if those physical and emotional tribulations were taking place in our own bodies. It is a very strange and wonderful emotion that washes over me from time to time because of the beautiful "poetry" that I read here every day.
I have never in my life felt so comfortable being so "familiar" with those on this site. When would I (even jokingly) have called someone I don't really know "chubby" or call Andrea "Bozz" (which I am not certain doesn't grate on her). I have lived my whole life giving pet names to everyone I love, and the fact that I am starting to do that just reinforces the way I feel about all of you.
So..enough drivel. Eddie you really struck a chord in me tonight and I am celebrating Andrea's 1/2 birthday with her (half way to 100 days) and getting ready to wish you the best on Feb. 27.
Cliff
By the way I just love the term 'happy birthday' my little 3yr old Georgie never uses the word birthday without happy in front of it. It's always a 'happy birthday' to her, the things we could learn hu!
With love,
Ed
What wonderful news! Happy Birthday! Is February also your last month of consolidation? Have a wonderful day! And here is to no more long needles!
So wonderful to hear everyone's good news!
Take Care,
Suzanne
I am ecstatic on both accounts - that you liked Dr. Berman and that your results were great. I don't get another BMB until September. Maybe we could coordinate our visits. When r u there again? So today WAS your "birthday!" Tell me when to light the sparklers.
Cliff
Would love that. Let me know as the time nears. I live right across the park from Sloan, so I will just come buy you a cup of celebratory coffee or tea when you visit anyway.
Ed
Peace,
Andrea
I remember you went for radiation in early January. Just wondering which birthday you are coming up on, but it seems to be close to two months! If so, I wanted to send out a happy birthday to you as well. Has day 50 arrived?
Ed
I think that Eddie should be magnanimous and let a first year medical student do his next bone marrow biopsy. It's strange, when I was in training, I must have done 300 bone marrow biopsies and 500 liver biopsies. Now that I am older, I think it was bad form for me to be allowed to do them. I never once had a complication with either procedure, but I ALWAYS hurt the patient when I did the bone marrow aspirate. They would let out a yelp (the discomfort only lasted seconds), and I was always unhappy causing pain to anyone.
Interestingly, I do not find BMBs at all painful. True, I get xylocaine first, but after that all I feel is pressure. So the choice is yours, Ed. You can let a med student torture you, or you can wait for the next BMB by Dr. Berman, who is undoubtedly a pro. Since you enjoy them so much (hurts so good), I think you should definitely volunteer. After all, the rest of us don't want to deprive you of the honor.
Cliff
March 8 will make 18 months for me! I haven't enjoyed birthdays as much in recent years as I do now. So let's see . . .according to my calculations, if I were a leap year baby, I would be 15 years old. If I were a dog, I'd be 10.5 years old. So being 1.5 years old sounds really young. Maybe I should throw a tantrum when I enter the terrible TWOs in September. I went to the dentist today for an urgent placement of my permanent crown, since the temporary fell off. He asked me if I am still using a teething ring!
Cliff