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.
First, I want to thank Dave for updating the list for me. For those of you who don't know, I have long had severe OCD and an anxiety disorder. Not that this is an excuse, but at times, my ability to function is compromised under extra stress and since Keir's diagnosis (11 months ago now) there has been a lot of that! I have a lot more to thank Dave (and Cliff and a few others who have reached out to me despite my weakness) for as well. My therapist asked me to avoid all things AML related that were not absolutely needed for a period of time to see if that helped with the anxiety. (it didn't and feel guilty on top of it!). It is part of the treatment but I do feel badly to disappear like that.
I have been and continue praying for you all.
Keir is doing well. He is five and a half months post transplant now. Next Wednesday he goes for his check up and bloodwork and I always get extremely scared at such times. Once in a while he has some digestive issues - he gags easily when swallowing certain foods, especially meat or bread, and will vomit then. Sometimes he has loose stool. Other than that he has no noticeable issues, other than perhaps some dry skin. He signed up for two college classes for the fall to try and keep up with his profession (video editing/film making). He is bored and lonely at times. We are still living with my elderly parents as our house is being torn apart due to mold which, of course, Keir cannot be around. It's a slow long job and my husband continues to work multiple jobs.
I think of you all daily and pray and hope to see updates from Warrior and others who have been away for a while.
My mom has not been well - could I ask for prayers for her also? She goes to the doctor on Monday and that has been a big worry for me also. Keir thanks all of you as well. He is much calmer than I am though still worries at times. He is anxious to get back to his life and we cannot believe it is nearly a year since all this started. At times it feels like a nightmare you don't wake up from, but at other times it feels all too real. We know how fortunate he has been compared to many and how comparatively smoothly his treatment and recovery have been. This board has been invaluable to me and I thank you all and apologize for having to vanish a bit.
I have been and continue praying for you all.
Keir is doing well. He is five and a half months post transplant now. Next Wednesday he goes for his check up and bloodwork and I always get extremely scared at such times. Once in a while he has some digestive issues - he gags easily when swallowing certain foods, especially meat or bread, and will vomit then. Sometimes he has loose stool. Other than that he has no noticeable issues, other than perhaps some dry skin. He signed up for two college classes for the fall to try and keep up with his profession (video editing/film making). He is bored and lonely at times. We are still living with my elderly parents as our house is being torn apart due to mold which, of course, Keir cannot be around. It's a slow long job and my husband continues to work multiple jobs.
I think of you all daily and pray and hope to see updates from Warrior and others who have been away for a while.
My mom has not been well - could I ask for prayers for her also? She goes to the doctor on Monday and that has been a big worry for me also. Keir thanks all of you as well. He is much calmer than I am though still worries at times. He is anxious to get back to his life and we cannot believe it is nearly a year since all this started. At times it feels like a nightmare you don't wake up from, but at other times it feels all too real. We know how fortunate he has been compared to many and how comparatively smoothly his treatment and recovery have been. This board has been invaluable to me and I thank you all and apologize for having to vanish a bit.
No need to apologize you have to do what is best for you and Keir.
I am so happy that Keir is doing well and trying to get back to a somewhat normal life.
My son was dx 4 months ago and I know what you mean about a bad nightmare. He is scheduled to go in for SCT conditioning on 8/22/14 and I am very scared.
I am also somewhat OCD and could not eat, sleep or concentrate when he was first dxd but joining this group and reading everyone's postings has helped me a lot.
I pray daily for everyone on this group and have added your mother to my list. Also when I spoke with my sister yesterday she promised to add everyone to her prayer warrior list, so we now have another 150 prayer warriors out there praying for us too.
Take care of yourself and never feel guilty for doing that.
Karen
So outstanding to hear from you how well Keir continues to progress to restored health. Please know my family prays for your to include your Mother daily.
God Bless,
Julie
My son is 33 and has MDS/AML.
Karen
Karen
I posted an updated on another discussion with reference to Keir and have copied below in case you didn't see it:
" Hi All,
I thought I would give a little update. I have been quiet on this forum but I have been following everyone on a regular basis. Whilst I've been rocked by some of the sadness that has occurred I am also uplifted by the success stories also. I am 5 months post transplant doing well. I have clinic visits every two months and blood draws monthly. They are still moments of stress for me but that stress is definitely beginning to lessen the further out from diagnosis I go. I have felt so well that my doctor allowed us to have a family holiday with her blessing. We are currently holidaying on the Gold Coast (for you Aussies you will appreciate us Tasmanians seeking out the warmth :). Have been swimming with my daughter, watching her surf and going for long walks along the beach - I am truly blessed.
Dave, could you please pass this update on to Lori for me. I read your update on Keir and I fully understand her reasons for backing away but Keir has been my transplant 'twin' having pretty much identical transplant dates that I wanted Lori to know that things can and will continue to go well for her precious son. "
I was also very relieved to read a medical report my BMT specialist had prepared for government assistance I was seeking which stated that he believed my survival was greater than 2 years and that from 24 months the chance of relapse is less than 5% at which time my anxiety levels should decrease significantly!! Can't think of a better incentive to reach that 2 year mark which if we keep doing as well as we are should be a walk in the park :) xx
Please don't feel any need to apologize for taking a break. It's very important that you take care of yourself. We all understand. :)
Hugs,
Monique
His next doctor appointment is Wednesday and true to form, I am a nervous wreck. This is the longest ( four weeks) he's gone without bloodwork since diagnosis. He is feeling good, looking good, and there is no reason to think anything but good thoughts, but I am "Anxiety Girl - able to leap to the worst conclusions in a single bound." So if you are inclined would you please pray, send energy, etc., to Keir that his bloodwork and overall well being would be good? He will be six months post transplant (roughly) and will be allowed to take some classes (video editing and photoshop) that will allow him to keep up with his profession if all is okay. He will also be allowed to get a flu shot.
I want to thank all of you for your support, your patience, your advice your prayers, your compassion and just for being there for Keir and me. Please know you are all prayed for daily.
I have not been the parent of an AML patient but I agree that it must be harder than being the patient. My heart goes out to you. Keir has done so amazing and is an inspiration to others who face a BMT. I think going longer between labs can be difficult after months of micro management. I truly believe Keir's counts will be great and he will begin to build a new normal. Praying for a great outcome on WEDNESDAY
Julie
Keir is always in my prayers. Being a mother of a son with AML and ocd also I work real hard on not having anixety all the time. Every time it starts to creep in I remind myself to have faith that he will be healed and say a prayer for him and everyone in this group.
Take care of yourself.
Karen
DaveJ
I fully understand your anxiety at the clinic appointments and too have started seeing someone to help me deal w it.
Never apologize for having to stay away, this is a very hard road for a caretaker as well!
Xxoo
Lea