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 second potential donor/SCT date is going to happen! I check into the hospital (MD Anderson) on Tues, Oct 14 and begin 4 days of chemo starting Wed (Busulfan; Clofarabine; Fludarabine) and then 3 days of ATG. I'll get the MUD stem cells on Oct 21 from a 35 year old man in Europe who is a 14/14 match with me. I've felt really good about everything so far, but now that it's getting down to the wire, I'm having really bad anxiety issues. Really scared and I know that's normal, but that doesn't make it go away. :-(
I went to MDA on Friday for my Busulfan pre-test. Basically they gave me a small dose of it, and then checked my blood every hour for 11 hours to see how fast my body metabolized it. The results will determine what dosage I get in the hospital. They will do the same blood work on day 1 of chemo and adjust levels as needed for the next 3 days. They gave me Dialatin before the test on Friday, and I'll get that during the chemo too to reduce the chance of possible seizures. !!!
I have a 2 lumin PICC line right now, but Tues morning before I'm admitted they will put a central line in my chest and take the PICC out. I have a love/have relationship with my PICC and am curious how the chest port will be. Better? worse? I guess we will see!
Anyway, I'm trying to get packed and prepared for Tues but I find myself having small panic episodes when I'm packing, so I end up taking a lot of breaks. I've felt pretty strong and brave through this whole thing, and now I completely don't. I pray often for strength and I hope it comes back soon. I'm just really scared.
So, that's what's up with me! I'll be posting updates on this thread as things move forward.
Thanks for all this support and information here. This group is awesome.
Lora B
I went to MDA on Friday for my Busulfan pre-test. Basically they gave me a small dose of it, and then checked my blood every hour for 11 hours to see how fast my body metabolized it. The results will determine what dosage I get in the hospital. They will do the same blood work on day 1 of chemo and adjust levels as needed for the next 3 days. They gave me Dialatin before the test on Friday, and I'll get that during the chemo too to reduce the chance of possible seizures. !!!
I have a 2 lumin PICC line right now, but Tues morning before I'm admitted they will put a central line in my chest and take the PICC out. I have a love/have relationship with my PICC and am curious how the chest port will be. Better? worse? I guess we will see!
Anyway, I'm trying to get packed and prepared for Tues but I find myself having small panic episodes when I'm packing, so I end up taking a lot of breaks. I've felt pretty strong and brave through this whole thing, and now I completely don't. I pray often for strength and I hope it comes back soon. I'm just really scared.
So, that's what's up with me! I'll be posting updates on this thread as things move forward.
Thanks for all this support and information here. This group is awesome.
Lora B
Hoping you are recovering well. I know Julian's worst days were days +6 until about +10. Today is +11, and he already has neutrophils. He is feeling far better than he did just two days ago. Just know that we are thinking of you and praying for you!
Jacki
We haven't heard an update for some time, praying all is well.
Julie
I'm staying at a small house near the hospital with my mom mostly. My husband and the boys come on the weekends so that's nice. I started out my outpatient experience being extremely weak and fatigued. I'd just lay there and stare at the walls. I've been out 20 days now ( day +36) and am starting to feel less fatigued. I started physical therapy this week and it seems to be helping.
In addition to fatigue, I've had nausea too, and nothing tastes good at all. I force myself to eat, but am pretty much relying on Ensure drinks right now.
I developed GVHD rash on my chest but the steroid cream they gave me is doing it's job to clear that up.
I have been exposed to CMV and am on a clinical study take a med to prevent it. The doc said my blood had two CMV cells in it a
over a week ago, but has been negative since.
The Tacro (anti-rejection) med they give me leaches the magnesium out of my blood, so I've been getting IV and pill versions of supplements.
I get IV fluids everyday, MWF at the hospital and T, TH and weekends I get those self infuse pumps to administer to myself.
I went so many days with no improvement, that I began to feel down. But I finally feel a little better now.
My WBC and ANC have been in the "normal" range for the last 16 days. And Platelets were 148 today. So crazy. So thankful.
I got a BMB last week and it indicated that I have 100% of my donor cells! None of mine!!! (zero blasts). Extensive results still pending, but I'm feeling so good about that.
I hope everyone is doing well and has a wonderful Thanksgiving!!
So happy to read your update and happy to hear that you are doing good and 100% donor cells.
Things will continue to get better and soon you will get to go home and be with your family.
Karen
Your counts sound fantastic, and the better they are, the better you feel. I don't know if you had TBI as part of your treatment, but the throat sores that go along with that are awful. What have you been eating? Make sure to keep up your nutrition, even if you are eating the same thing for every meal (like eggs). Magnesium is always an issue after transplant and I was taking pills for a while. I never needed IV infusions, but then again, I have never been on steroids, tacrolimus, or sirolimus.
I am glad you are getting physical therapy. I didn't get any, and I think that slowed down my physical recovery. Keep walking, keep eating, I am thrilled that you are on your way to good health,
Cliff