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
Such great news that you have 14/14 match!!! Although I have not had a sct I can imagine the mixed emotions the prospect must bring. You are such an optimistic positive force on this site. Cheering others on in the midst of your own fight after your first donor feel through. I can only imagine what you've been through. But we both know who holds our future in the palm in His hand. Almighty God knows the path you are on and the outcome. Please try to rest in that knowledge. When I feel anxious, I say out load, I trust you Jesus. It helps.
As far as your medical question regarding the Hickman port, I had one for ten full months with not a single issue. My med team dies not use pic due to infections and clots.
Please remember, we do not know what tomorrow holds, but we know Who holds tomorrow.
Praying for you
Julie
don't feel like you shouldn't have a little nerves, its understandable.
Just take each day as you feel you have to, a 14/14 match is great news and just think it like having another bag of blood :)
its scary but stay positive and just think just another couple of weeks and you are on your homeward path to being a new person :)
good luck and just come and vent with us when you need
Wow a 14/14 match you will be feeling good again in a few weeks. Everything you are feeling is normal and as Julie said your are in Gods hands and he has found a perfect match for you.
Please know you are in my thoughts and prayers.
Karen
Debbie
We are all here for you and it's normal to be scared, we were for sure but once you have a plan and get started it's much less scary for some reason.
Plus you're at the best hospital in the world for this
Best of luck and stay heAlthy and strong before you go in!
Oh and eat!!!!!
Lea
PS -- Once you get it I might be able to give you some tips on taking care of it. I kind of built a holster for the tips so that they would not just dangle around. I built it out of the med tape they gave me. Please stay in touch.
Thinking of you, I think today was your transplant, I'm hoping everything went smoothly, including the prep chemo regimen, tomorrow is day +1, no more negatives!
As I said to Tony's new cells, every day, Go cells go!
Just wanted you to know that we were thinking about you and praying for your return to good health.
Karen
xoxo
Monique & Sal
Sorry I've been MIA over the transplant. I've had a lot of nausea over the last few days. It's Day +3 now. The transplant went well, except I had some reactions like high blood pressure during, which they treated with meds, and then I spiked a fever at the end. I've been on antibiotics to treat whatever that might have been, but it has gone away and I haven't had a fever in 2 days, so that;s good. They started the transplant at 9pm on Oct 21, so it lasted till about 4 am with the high blood pressure and fever. I was able to rest after that, but was completely wiped all day Wed.
Yesterday was better, but I still didn't get up and move around like I should have. Still feeling a little nausea so I really haven't eaten that much in a number of days. I ordered some breakfast and am waiting for that, so hopefully I'll get some of that down. I already took a small walk this morning. I can't believe how weak I am.
Anyway, other than that, I doing ok. I rcvd platelets and RBC transfusions yesterday and will rcv platelets again today. I haven't gotten bad mouth sores yet. Waiting on that. :-/
So that's it for now. That's so much for your kind words and prayers.
Hugs and love,
Lora
And congratulations on your new bone marrow!
I also had a reaction (in my case, fever and chills) and among other things I got antibiotics as well. Now on day +50, it's slowly becoming a memory....
Eating is tough but important. Try to get some protein in you, as I am sure everyone tells you.
Good luck and keep us updated,
Abby
Blessings
Julie
Happy to hear from you and to hear that things are moving pretty normal.
Like everyone says try to eat as much as possible when you can and walk.
Don't forget the mouth rises as Jeremy's mouth sores came in about this time and he started finding it harder and harder to eat. Drink Ensure when you can't eat.
You are in my prayers!!
Karen