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.
Thank you for all of your feedback and support concerning my skin issue. I had a biopsy done on it and, heartbreakingly, it has been diagnosed as leukemia cutis. I just don't understand how it keeps coming back. I've had so much chemo and a bone marrow transplant. I hate the "R" word, but this is the second time it has returned now. I just don't get it. I feel so healthy and normal, despite these skin lesions. But, I have also developed some swollen lymph nodes in my groin area. My doctor called yesterday saying he wanted me admitted ASAP for more chemo. This was devastating to hear as my birthday is approaching soon, and I cannot imagine spending my 26th birthday in the hospital.
My mom told him that his phone call made me hysterical (which it did). And then he changed his stance. He is now going to meet with us on Saturday to discuss treatment options. Has anyone heard of doing chemotherapy for AML as outpatient? I know it sounds bad, but I don't know what I would do to myself if I had to go back in the hospital again. I hate the way I'm treated in there. Like I am helpless and incompetent. And I lose my dignity every time. My doctor is also thinking about doing another bone marrow transplant, but this time from my other brother who was also a 10/10 match.
I know I should be grateful that my doctor still thinks I will be okay in the long run and that he still has options to treat me. He says my blood and bone marrow and spinal fluid are still clear, so I don't know how this is happening.
Finally, I am wondering if anyone knows of any sedation drug that I could receive if I do have to go back into the hospital? I just can't do this anymore, and I know I will not be psychologically well or a very good patient if I have to go back in. It might sound crazy, but I want to ask my doctor if he can just keep me on something while I'm in the hospital, just so I can get through it without completely losing my mind.
My mom told him that his phone call made me hysterical (which it did). And then he changed his stance. He is now going to meet with us on Saturday to discuss treatment options. Has anyone heard of doing chemotherapy for AML as outpatient? I know it sounds bad, but I don't know what I would do to myself if I had to go back in the hospital again. I hate the way I'm treated in there. Like I am helpless and incompetent. And I lose my dignity every time. My doctor is also thinking about doing another bone marrow transplant, but this time from my other brother who was also a 10/10 match.
I know I should be grateful that my doctor still thinks I will be okay in the long run and that he still has options to treat me. He says my blood and bone marrow and spinal fluid are still clear, so I don't know how this is happening.
Finally, I am wondering if anyone knows of any sedation drug that I could receive if I do have to go back into the hospital? I just can't do this anymore, and I know I will not be psychologically well or a very good patient if I have to go back in. It might sound crazy, but I want to ask my doctor if he can just keep me on something while I'm in the hospital, just so I can get through it without completely losing my mind.
Please never give up, not at your age, you have so much more, are meant to do so much more. And it seems that they are on the brink of the cure for everybody.
I and lots of others will be praying for you, for your cure, for a long healthy and happy life for you. Never think you can't get through this, you can, you have too, there is no other choice. And the fact that your med team is confident and has a plan in place speaks volumes. You will beat it once again.
DaveJ
But there is much wisdom in Daves words and they are really making process. YOU MUST find a way to stay positive and hang in. There is hope and lifevwaiting to embrace you.
Dont know how religious you are or are not, but prayers is powerful stuff and maybe the only stuff we can control in this damn AML world.
Ive taught college students (literature) for years. Can you find something for which you have a passion and try to focus some energy there? Animals?
If i can do anything for you, just ask.
Prayers
Hugs
Hugs and prayers.
Karen
I am so sorry to hear this news. You have been such a fighter and I believe this will continue. As you know, so much depends on your attitude through all this so let's concentrate on all the positives.
First, your doc is optimistic.that is huge. Second, you have two 10/10 sibling matches-what a miracle. Third, you are young and strong. Fourth, your bone marrow is clear. And fifth, and most important, the almighty God of the universe loves and cares for you and will give you the peace that passes All understanding. As others have said, ask for Him to comfort you and I promise you will feel better.
Relative to your medication question, at dx I was given an anti depressant, celexa and xanax for anxiety. If you feel that meds will help you cope ask for them. I know they helped me. I'm praying for you.
Blessings
Julie
It probably depends on what is involved with your chemo and the type I would think but it would not hurt to discuss the possibility with your doctor. I pray that they find the best treatment plan for you and that things get easier.
Debbie
That's just what you are...a warrior. You will get through this, no matter what path you choose. Just keep fighting. I tried to get some helpful information about leukemia cutis for you, but can't really find stuff on the etiology or treatment, but will keep looking.
You should be on an SSRI to decrease your anxiety, which is very warranted. Anything that will help you relax a bit is good.
Praying for you.
Cliff
I met with my doctor last Friday, and b/c everything was still under control, and my blood counts were all normal, he was going to allow me two weeks at home, to spend my birthday before being admitted to the hospital for more chemo (Apporx. 3 week stay this time w/ 5 days of chemo.)
However, that following Monday night, as I was going to bed, I suddenly felt like I was having a heart attack. I'm not one to make big deals out of nothing when I feel a bit off, but I knew something was wrong. I went to the ER for tests and discovered that the leukemia made my white blood cell count shoot through the roof and was causing a thickness in my blood, making my heart feel like it was going into cardiac arrest.
Although my heart was unaffected overall (thank goodness) from this, I was immediately admitted for my chemo treatment. Tomorrow is my final day of this chemo regimen. The leukemia has been cleared from my blood and the leukemia cutis is clearing from my skin. In a few weeks I will receive a bone marrow biopsy to determine if I am in remission again. Then, my doctor is giving me a while at home to recover, and is shooting for a "reduced intensity transplant" from my other 10/10 match brother in June.
Once again, I did not see any of this coming, but I can only take it all a day at a time, and right now my doctors are happy with my progress. Trying to keep focus on everything important in my life and everything that I want to stay in my life. My best to you all! Thanks again for the support!
It's so hard to keep your eye on the prize on this stupid long journey. I wish you all the best and an ultimately healthy future.
Again, if you feel like your anxiety is getting to be too much, please don't hesitate to talk to your doc about it. You are fighting for your life, and have every right to be anxious.
Hugs and prayers.
Karen
DaveJ