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.
Just to give you some back ground. My husband in addition to the 9:22 Philadelphia translocation also has the 8:21 translocation for AML. There has only been 5 or 6 cases world wide. He was initially diagnosed with CML in September 2013, all seemed to be traveling along ok until December when he started to have the same symptoms as diagnosis and has just recently returned to hospital (3 weeks in so far) where they are now treating him for the AML.
He has also a myeloid tumor in his spine which has rendered him unable to feel (initially) anything from his nipples down. Over the past 2 weeks he has had radiation for the tumors and intravenous chemo to kill it all off. He has been told to give up his work (for at least the next 12 months). This has improved slightly with him being able to move his hips and the nurse advised that a little feeling in the very top of his legs. I know I should not think of things this way but I am so frightened that he will end up in a wheel chair. The next step is by putting chemo directly into his spine to assist in treating the tumors.
Our home is also 2 hours from where the hematology clinic is and the specialist hospital also. It is hard as since he can not work I have to keep working and also just because I leave the house does not mean thing stop needing to be dealt with. I feel guilty coz I can't be there more often but I am not sure I would be able to handle sitting in a hospital day in day out. We would run out of things to discuss eventually and his sickness would take over our life. Keeping things regular gives me a sense of normality and gives me the strength to be strong for him.
Apparently his leukemia is now very aggressive but have assured me that he has progressed as expected. I have been so frustrated as the 2 types seem very different in treatment and how they work. Up until a few hours ago I was not understanding what was happening at all, the doctor called me after me calling to speak with a nurse today to get more understanding. My husband is fighting and tells me that he sometimes can't focus on what the doctors are saying leaving me completely in the dark.
Unfortunately after all this treatment he will be sterile, with a very small chance that he won't. So I am coming to terms with the fact that children are pretty much off the cards. Due to the tumor in his spine and the feeling loss he was unable to give a sample for storage for use later.
He is still in the hospital and has just become neutrphillic (not sure of spelling) and it is hitting him pretty hard. He has an infection and having blood transfusions. They are talking stem cell transplant in the next few months and are currently looking for a match.
Just wondering if people can give me info on their experiences. Maybe a little reassurance?
He has also a myeloid tumor in his spine which has rendered him unable to feel (initially) anything from his nipples down. Over the past 2 weeks he has had radiation for the tumors and intravenous chemo to kill it all off. He has been told to give up his work (for at least the next 12 months). This has improved slightly with him being able to move his hips and the nurse advised that a little feeling in the very top of his legs. I know I should not think of things this way but I am so frightened that he will end up in a wheel chair. The next step is by putting chemo directly into his spine to assist in treating the tumors.
Our home is also 2 hours from where the hematology clinic is and the specialist hospital also. It is hard as since he can not work I have to keep working and also just because I leave the house does not mean thing stop needing to be dealt with. I feel guilty coz I can't be there more often but I am not sure I would be able to handle sitting in a hospital day in day out. We would run out of things to discuss eventually and his sickness would take over our life. Keeping things regular gives me a sense of normality and gives me the strength to be strong for him.
Apparently his leukemia is now very aggressive but have assured me that he has progressed as expected. I have been so frustrated as the 2 types seem very different in treatment and how they work. Up until a few hours ago I was not understanding what was happening at all, the doctor called me after me calling to speak with a nurse today to get more understanding. My husband is fighting and tells me that he sometimes can't focus on what the doctors are saying leaving me completely in the dark.
Unfortunately after all this treatment he will be sterile, with a very small chance that he won't. So I am coming to terms with the fact that children are pretty much off the cards. Due to the tumor in his spine and the feeling loss he was unable to give a sample for storage for use later.
He is still in the hospital and has just become neutrphillic (not sure of spelling) and it is hitting him pretty hard. He has an infection and having blood transfusions. They are talking stem cell transplant in the next few months and are currently looking for a match.
Just wondering if people can give me info on their experiences. Maybe a little reassurance?
I am so sorry to hear that you and your husband are being made to suffer through such an ordeal. AML (let alone AML + CML) is no picnic at any point, but it seems extra cruel that you should find yourself here so early in your married life. I don't have any practical experience with the particulars of your husband's situation, as my 69 year old dad is dealing with a more straightforward case of AML, I think, but there are others here who will have experienced some of what you are dealing with, I'm sure. They will reach out to you.
I hope that you are able to find support in family and friends - this is a tough road, and it will be important for you and your husband to have a soft place to land from time to time. Of course, you will find support here, too, and we will do whatever we can to help you through this.
Best wishes,
Robin
Robin
I was so saddened to see how one individual has to deal with two horrors at the same time. His doctors will get him through this and he will be able to start over with a new and healthy bone marrow. We are with you and him all the way. Many of us, including me, have had transplants and can help you with any questions you have about the preparation and aftermath. Hang in there.
Cliff
I am sorry your husband has to deal with such an onslaught of different
issues.
I totally understand that you must be overwhelmed, i remember how I felt. when my husband, Ben was diagnosed in January 2012. I never knew there were so many different types of leukemia.
I am thankful, you have come to our group, because i know you will get different opinionselt and answers to ALL your questions. Also the support that you will need at this crucial time.
I am not sure if your husband will have other family members around but he will need constant re-assurance and support from someone close to him. So many things are happening to him right now, he needs someone there to put it all together. It will help him get through every obstacle he faces. I know there are financial issues, which can be overwhelming, but where there is a will, there is a way.
I hope you take a deep breath and think about things for a little while, perhaps some of our group will give you a different perspective on things.
Thinking of you and you husband.
Both know we are all here for you...
Sandra and Ben.
As others have said, I am so sorry you have had the need to join our group; however, you are in the right spot for support. Where I am treated, at LDS Hospital in SLC, Ut, I have met two individuals in similar situations. One gentleman had CML, AML and ALL and a 30 year gal who has posted on this site (Rebecca) had ALL and AML which is biphenotypic leukemia. Rebecca had a transplant this fall and is doing amazing. Based on that, I don't think this is as rare as you've been told.
My understanding of CML is that 95% have the 9:22 Philadelphia translocation and I know that the 18:21 translocation of AML is one of the most favorable to treat-Dave is beyond four years in remission with this type.
I am certainly not trying to minimize or downplay your husband's situation at all-it is absolutely more than anyone person should EVER have to bare.
As far as spending time in the hospital with your husband everyone's preference is different. I was diagnosed almost a year ago at age 48 and spent 28 days in the hospital. I have three daughter 9,11, and 13 and did not like them to visit the hospital due to the exposure to infection for me and them and the overall depressing environment. I did not want my husband to spend the night with me or spend hours by my side because I needed him to keep home life as normal as possible. Plus I had awesome care from the staff there and felt safe enough to be there by myself.
Just my perspective.
I will pray for you and your husband
Julie
Now it is very strange to me that someone could come down with CML and AML at the same time -- both of mutations, and perhaps the chemo will deal with both of them. But yes, the treatment are quite different, although they are probably treating the AML primarily. CML -- the Philadelphia translocation, which he has -- is not nearly the problem of AML, and it is quite treatable. But they will just have to deal with the most critical thing first.
If this is his first time to be neutropenic then he is going through a fairly strange agony. Be sure that he washes his mouth out at least hourly with the salt/baking soda solution they will prescribe. I found that much better than the mouth wash, although some do better on it -- depends on the individual. I washed out every time I went into the bathroom, which was quite a bit due to the combination of the saline drip and my drinking quite a bit of fluids. The metallic taste in his mouth will last for as long as he is neutropenic, but it will go away once the blood numbers get back up. All this and more are on the web site.
For now, please think of any questions you might have that we can help with, especially with regard to side effects. The digestive system (top to bottom) needs a lot of good blood, and when it is deprived all kinds of bad things can happen -- it hits different people in different ways. At this point it is a matter of patience and endurance -- to just hang in knowing it will not always be this bad and things will improve soon.
My wife was my caregiver and my grown kids would come to visit once in a while -- one lives in CA and another in DC -- I am in AL. She was there quite a bit -- they set up rooms for them to stay near the hospital. I never stopped working and that was great therapy -- my work is always fighting the clock to get things done (on the computer), and nothing makes time fly like fighting the clock. If you can get him on the computer I think that would be a great help if he is not already.
Please give us your questions -- things might look bleak now with all of these things hitting at once, but I am sure they will deal with the most important things first. -- dave
I must admit we are currently going through the stages of why us? What did we do to deserve such a battle? For me and no doubt him too why am I being punished? I guess at the end of the day, this is the hand we have been dealt and I have always believed that things happen for a reason...this time why? I am really not sure, it will present itself in the years to come.
I must admit I am jealous of the young couples I see walking down the street with not a care in the world , so in love and happy where as our prospects seem to be falling in a heap day by day. We may have to sell our house as it is not at all suitable for wheelchair renovations.
When I met Kyle, I finally found someone who understood me and found my best friend in the world and I am struggling to remember a time when things were easy and happy and find it hard to foresee that again for our future and I am scared. I am trying so hard to remain positive but things seem to be getting worse before they get better. I guess that is the nature of the beast, our current saying "tomorrow will be a better day".
Infections have kicked in today and really don't sound pleasant. He can't feel is bladder, due to the myeloid tumors and such he can't go to the toilet and has possible ulcers as there is blood in his stool, they assure me that this is ok. However there are no ulcers in his mouth which I read was common. No solid food and nothing by mouth as from today.
Dave, I have started to read your online book. At chapter 4. Thank you for sharing your experiences. It is hard to find real life perspective.
Thank you again to everyone for your support I really appreciate your perspectives and interest in us. Julie, I would like to thank you also for your input as I think my husband is much like you, you sound like a very strong woman and can only imagine how hard it must have been for you.
I am not an overly religious person but have started praying for the odds to be in our favor.
The emotions, quetioning, looking for meaning and desperation are all very normal. You both are so young with so much of your life before you. At first, I wondered if I was being taken away from my daughters because I was not being a good mother. I have a strong belief in God and His devine will so I put my trust in that. Many only want to hear the positive and feel good part of the Bible but the Bible states over and over that beleivers are not garenteed to have an easy life, in fact to the contrary it says in this life we will have trials. God did not give me cancer not your husband; however, I believe events occur in our lives for a reason.
One of my doctors noticed me reading my Bible while receiving induction. She asked if she could pray with me. I saw her three to four times per week and everytime we prayed. She told me she could not garentee me that God would heal me because His Will is beyond our comprehension, but she did promise I would help others through my experience-what a blessing these times were.
While one of our daily walks my nine year old daughter asked us all to list the good things that had come from my cancer-WOW! All three of my daughters began to list several blessings that had come from the trials. Out of the mouths of babes.
Now, I am sorry if this offends, I am not attempting to convert. I am just sharing my struggles and victories through Christ Jesus! I am confident I would not have made it through without my God.
Illness is not fair, especially cancer, especially AML but life is not fair. Everytime I visit the hospital I meet someone who has it so much worse than me. Five people who were in the hopsital with me have since passed away, one just tow days ago. This news crushes me just as the news of our warriors passing here like Andrea.
I have learned to live in the moment (more) and try to appreciate every moment. Your husband is dealing with far more than I ever had to deal with and at such a very very young age but I beleive he will prevail.
My family paryers for your family daily along with all others on this site.
God Bless you two
Julie
His last dose of chemo (for now) was Friday and are starting to give him injections to help build his white cell count. He has had radiation, chemo injections into his spine and intravenous chemo and lots of it.
Still no feeling in his legs.
I am starting to feel that he might not ever make it out of there and can't remember the last time I have been able to hug or kiss him.
Robin
Phil
I am so sorry that you and your husband are going through this. I think it must be the hardest on the caregiver because as a patient you fight each battle as it comes, but as a caregiver it is so hard to sit and watch. I do not know why this happened to me or to you, I still do not understand and it is unfair. I do know God is with me every step of the way, someday I may understand or maybe not. I am keeping you both in my prayers. I do not know if this is helpful right now, but the Leukemia and Lymphoma Society does have some grant money for those diagnosed with CML ( not AML, I keep looking), if you are feeling up to it ask your Social Worker, she or he can set you up. You just being by his side speaks of love and devotion and you are doing one of the hardest jobs in the universe right now.
Take Care,
Suzanne
He is off to rehab to see what feeling/ movement they can get back in his legs. Fingers crossed.
He is worried though, that they have advised him that he will need to go back for another round of chemo in 2 weeks time. Is this normal? Doctors always say it is nothing to worry about at this stage but I am starting to worry about what I should be worrying about since it seems like everything is nothing!
Unfortunately, now he is not in a position where he is strong enough for a stem cell transplant. He is really weak. The doctor shared with us that the doses of chemo given his situation were 3 times that of someone with your "standard range AML" that was a scary notion I must admit.
Good news and grey areas are better than no hope.