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.
Hello Everyone!
I just found this group and decided that it would be a great way to get support from people who have been on the roller coaster called AML.
While I was joining the group my husband sat down next to me and said that he was already a member! Ha! I had no idea! I was able to go back and read his posts, the helpful information and positive comments from all of you! So I will introduce myself. My name is Christina and my husband is Tom. He hasn't posted anything since May, so I thought this would be a good opportunity to catch everyone up on the latest. I'll try to keep it brief! I am feeling well (most of the time) and have been able to get out and about. My son, Ben took a semester off of school to take on the role of caregiver. He ended up also being my chauffeur since I lost my license due to the seizures I had in January. He headed back to school in May to take summer classes. Thankfully I'm back to driving so that I don't have to rely on other people. I've lost a lot of weight and am working to put some on. I never thought it could be so difficult to gain weight! I've also lost most of my muscle mass. I was in good shape before I was diagnosed, so it's been difficult to ask for help with many of the tasks that I was doing on my own. I'm going to PT 2/week but I need to get motivated to do more. Unfortunately I'm at a high risk for infection because I am taking prednisone as well as sorafenib I had some GvH - skin and lungs. Thankfully they were mild. I'm not able to bike because my balance still isn't 100% and they don't want me to fall and break something. My platelets are around 50 when they last checked. They've been dropping by 5 about every week and I bruise like a banana.I'm hoping I won't need a transfusion. Swimming is out of the question because of germs etc...and working out at a fitness club fits in that same boat. It's frustrating to be unable to do the physical activities that I enjoy. Some days it gets me down. There have been a couple of new bumps. I had my ferritin level checked a couple of weeks ago and it was sky high. (around 7300) It was high when I had it checked at the end of February and it was around 3600. I am going to start a new discussion to see if anyone has had a similar problem. It's freaking me out a bit. Those darn transfusions. Unfortunately I won't be able to go back to teaching this fall. Schools are a cesspool of germs. I really miss the kiddos. The second bump was a UTI. I'm still working through that. Does anybody know if a UTI could be a sign of GvH? The urologist didn't think so, but he doesn't usually work with BMT patients. I will go in for more tests to make sure there isn't cancer somewhere. Ugh... That's it for now! Sorry, I guess it wasn't very brief! Thank you all for your support and well wishes. Please keep me in your prayers. They work! I have survived on 2 different occasions when the prognosis was not good. Oh...one more thing...My blood type finally changed from O- to B+. It's always good to be positive! :-)
Christina
I just found this group and decided that it would be a great way to get support from people who have been on the roller coaster called AML.
While I was joining the group my husband sat down next to me and said that he was already a member! Ha! I had no idea! I was able to go back and read his posts, the helpful information and positive comments from all of you! So I will introduce myself. My name is Christina and my husband is Tom. He hasn't posted anything since May, so I thought this would be a good opportunity to catch everyone up on the latest. I'll try to keep it brief! I am feeling well (most of the time) and have been able to get out and about. My son, Ben took a semester off of school to take on the role of caregiver. He ended up also being my chauffeur since I lost my license due to the seizures I had in January. He headed back to school in May to take summer classes. Thankfully I'm back to driving so that I don't have to rely on other people. I've lost a lot of weight and am working to put some on. I never thought it could be so difficult to gain weight! I've also lost most of my muscle mass. I was in good shape before I was diagnosed, so it's been difficult to ask for help with many of the tasks that I was doing on my own. I'm going to PT 2/week but I need to get motivated to do more. Unfortunately I'm at a high risk for infection because I am taking prednisone as well as sorafenib I had some GvH - skin and lungs. Thankfully they were mild. I'm not able to bike because my balance still isn't 100% and they don't want me to fall and break something. My platelets are around 50 when they last checked. They've been dropping by 5 about every week and I bruise like a banana.I'm hoping I won't need a transfusion. Swimming is out of the question because of germs etc...and working out at a fitness club fits in that same boat. It's frustrating to be unable to do the physical activities that I enjoy. Some days it gets me down. There have been a couple of new bumps. I had my ferritin level checked a couple of weeks ago and it was sky high. (around 7300) It was high when I had it checked at the end of February and it was around 3600. I am going to start a new discussion to see if anyone has had a similar problem. It's freaking me out a bit. Those darn transfusions. Unfortunately I won't be able to go back to teaching this fall. Schools are a cesspool of germs. I really miss the kiddos. The second bump was a UTI. I'm still working through that. Does anybody know if a UTI could be a sign of GvH? The urologist didn't think so, but he doesn't usually work with BMT patients. I will go in for more tests to make sure there isn't cancer somewhere. Ugh... That's it for now! Sorry, I guess it wasn't very brief! Thank you all for your support and well wishes. Please keep me in your prayers. They work! I have survived on 2 different occasions when the prognosis was not good. Oh...one more thing...My blood type finally changed from O- to B+. It's always good to be positive! :-)
Christina
Christina,
So great to hear from you directly. Tom did an awesome job keeping us up to date and I know many here including my family prayed for you. I provided the link above to connect the dots. I am chemo only so a can't provide any sct questions; however, I am getting my ferritin checked during my next labs because I have malabsorbtion issues so I need to know where my levels are.
Thank you for joining us and you continue to be in my prayers. You are proof that miracles still happen.
Blessings
Julie
Hugs and prayers.
Karen
I love your attitude!
I usually don't like to answer questions on this site, but if I can be of ANY, help, I will......my husband, Ben did develop issues with an excessive amount of ferritin, in his blood, we we told it usually comes from, the amount of blood transfusions, AML patients need during treatment. Ben was treated with a a reverse transfusion, where they actually took small amounts of blood from him. He had 3 of those treatments. 3 one made him really dizzy and "not well" for a couple of days....Drs. Conclusion..."they took too much blood at that time"
Too much iron can put a lot of stress on other organs, so it does need to be treated.
Your other question of UTI infections, was also an issue for Ben.
Later in his treatment he did have some issues, however, Ben had been in ICU with Septicemia twice, so that was, the reasoning there.
I am keeping you in my thoughts and prayer,
Hugs.......Sandra
Welcome to the boards. I think that you are doing great with a great attitude. Keep it up. I am happy to hear of your progress and success with transplant. It is always good to hear encouraging results from BMT. I was supposed to be getting my first day of chemo for BMT but the doctors here at Stanford want to try one more drug before going to BMT.
Just take the bumps one day at a time. You will get through this!
Vr,
John
I will keep you and your family in my prayers, again welcome, I'm glad you are here.
DaveJ
So glad to hear from you. What a trooper. We have heard from your husband and his last post had me worried quite a bit. ( Thank you Julie for posting Tom's last link...I'm slow and took me a while to put two and two together. ) Your hubby's strength has been a great encouragement and thank God for miracles as you are a living one.
Thank you for sharing and updating your status. You are quite an inspiration for all who are going through all the lumps and bumps on this journey.
I was so happy to see your post, I have often wondered how you were doing. You are one very strong lady.
Margaret