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.
Hi, all Ive been reading your posts for some weeks now and thought Id share a little bit of our familys situation. My Dad (aged 67) was diagnosed with AML approximately six weeks ago. Hospitalized for a partial bowel obstruction (related to an issue he has dealt with since he was a little boy), he underwent routine blood work in preparation for the possibility of surgery. The results of those tests were of concern to the hematologist/oncologist at Cape Cod Hospital, and he was sent to Dana Farber in Boston for a bone marrow biopsy. The bowel stuff, incidentally, has since resolved itself, and is now, as they say, the least of his worries.
While my Dad did achieve remission with the first round of induction, those were a harrowing couple of weeks, as he dealt with a range of complications some connected to his gut issues, others from the NPO situation, and a few other random things.
He is now finishing his last day of consolidation chemo, and will be released in the next day or two in anticipation of his stem cell transplant, tentatively planned for sometime in April. His doctor seems confident that he will have an appropriate donor.
The most worrisome thing that is going on (for the moment) is that he is intermittently suffering from severe headaches. It is our understanding that this problem is the result of small brain bleeds that happened due to his platelets having dropped to such a low point during the induction phase. His oncologist is watching this, and will keep his platelets at a higher level than what would be typical if this were not an issue. When these headaches make him too uncomfortable he treats them with a couple of oxycontin (or is it oxycodone?) pills. I wonder whether any of you have experience with headaches of this sort?
Anyway, I am certain that his issues are no worse than anybody else who is going through this ordeal, but it is so upsetting to watch him endure this. We are trying to absorb all that will be involved as he recovers from the transplant (to happen in April?). We are grateful to live so near to where he is being treated (Dana Farber/Brigham & Womens in Boston), and for the wonderful care he has been given by the nurses and doctors. This consolidation week has gone MUCH better than the induction stint, so that is something to be thankful for, as well. We have been told however, that right now is about is good as its going to be for a while, in terms of how he is feeling, and that the next weeks might be rough. Did others of you find this to be true of the post-consolidation phase?
Sorry for the lengthy post. Just feeling a little bit overwhelmed by all of this, and wonder how others of you are dealing with the anxiety both in terms of the day to day of what is involved with treatment, and also with the great worry about all that is to come (will the transplant go ok, ghvd, concerns re: infection, etc., etc.)
Anyway. Thanks for letting me ramble. Ive been reading and re-reading all of your posts for weeks now, and have been so impressed by the level of concern and support youve shown to all.
Robin
While my Dad did achieve remission with the first round of induction, those were a harrowing couple of weeks, as he dealt with a range of complications some connected to his gut issues, others from the NPO situation, and a few other random things.
He is now finishing his last day of consolidation chemo, and will be released in the next day or two in anticipation of his stem cell transplant, tentatively planned for sometime in April. His doctor seems confident that he will have an appropriate donor.
The most worrisome thing that is going on (for the moment) is that he is intermittently suffering from severe headaches. It is our understanding that this problem is the result of small brain bleeds that happened due to his platelets having dropped to such a low point during the induction phase. His oncologist is watching this, and will keep his platelets at a higher level than what would be typical if this were not an issue. When these headaches make him too uncomfortable he treats them with a couple of oxycontin (or is it oxycodone?) pills. I wonder whether any of you have experience with headaches of this sort?
Anyway, I am certain that his issues are no worse than anybody else who is going through this ordeal, but it is so upsetting to watch him endure this. We are trying to absorb all that will be involved as he recovers from the transplant (to happen in April?). We are grateful to live so near to where he is being treated (Dana Farber/Brigham & Womens in Boston), and for the wonderful care he has been given by the nurses and doctors. This consolidation week has gone MUCH better than the induction stint, so that is something to be thankful for, as well. We have been told however, that right now is about is good as its going to be for a while, in terms of how he is feeling, and that the next weeks might be rough. Did others of you find this to be true of the post-consolidation phase?
Sorry for the lengthy post. Just feeling a little bit overwhelmed by all of this, and wonder how others of you are dealing with the anxiety both in terms of the day to day of what is involved with treatment, and also with the great worry about all that is to come (will the transplant go ok, ghvd, concerns re: infection, etc., etc.)
Anyway. Thanks for letting me ramble. Ive been reading and re-reading all of your posts for weeks now, and have been so impressed by the level of concern and support youve shown to all.
Robin
Welcome to this site!
Do not apologize for your anxiety. You love your Dad and you want the best for him, I was treated in NYC, but I am very familiar with Dana/Farber having rotated there while I was a Fellow at BWH. It is a great place.
Everyone's experience is different. I was diagnosed with AML at age 58. Like your Dad, I had a terrible time with my first induction (I had to have a second one). I developed a terrible situation with my bowel that send me to the ICU. After that experience, I must say that, although this treatment is no fun, I did not have a particularly difficult time, including the consolidation and the preparation and receipt of the bone marrow transplant. I am now an 18 month survivor (I've lost count) and feel well at age 60. That's what I pray for your Dad. Do they know what the cause of your father's longstanding bowel issues are? Did he have surgery as a child and now has adhesions? In any event, it sounds as if he has weathered the storm and the seas should be calmer from hereon out. When you know more details about his transplants, we can all put our two cents in and help answer any questions you have. This is a very cohesive, supportive group and we want you to feel free to ask anything, vent your frustrations, or just tell us some good news about your Dad.
Cliff
I am really encouraged to learn of your experience with consolidation and the period that followed. I am so glad to read that you continue to do well, and am deeply grateful that you have been so willing to share your knowledge and experience with the many others who have visited here with questions and worries. Thank you.
Robin
Welcome. You've come to the right place to find support and a lot of help with your questions and concerns. I am very sorry to hear of your troubles. My dad was 67 when he was diagnosed as well. One of his first and major symptoms was the headache. Hopefully a pain pill will help with the discomfort he is experiencing right now.
My dad had 2 rounds of consolidation chemo. He felt fine going through the consolidation himself, but a week or 2 later was a different story. He got very tired and he suffered from the mouth sores. Those were his biggest complaints.
I absolutely HATE this disease, and I don't like to use the word hate... I will be thinking of and praying for you and your dad. My dad was everything to me and it broke my heart to watch him go through this. Just know that you are not alone and we are here to help whenever you need us. Take good care. xo
We are all here to support you in this time. You have come to a great place. Do not hesitate to lean on us. Sending love and good thoughts to your dad.
Ed
Sorry your dad is going through this. I had terrible headaches when my HCT and PLT counts were low. I used oxycodone, and once my counts came back up they went away. So see if there is any correlation between his headaches and counts, it might be a good way to catch things early. I usually ended up with Neutropenic fever about a week after my consolidation dose was done. I would be readmitted to the hospital for IV antibiotics. They never found a source for my fevers, but blamed it on my Neutropenia. Make sure he watches for fever, chills, and shakes when at home. Continue to monitor for infection and stay away from crowds. Then just as my counts started to recover and I felt better, time again for more chemo! It is tough, but stay determined, he will get through this. I hope and pray things go smoothly for him.
Take Care,
Suzanne
I forgot to address the headaches your Dad has been having. I wouldn't put small strokes high on the hit parade. Many of us got bad headaches in the periods of induction, consolidation and conditioning before transplant. I had almost daily migraine auras. I think that Two Boys and Suzanne are right on the money. The headaches will end.
In the meantime, your Dad should get whatever he needs to be comfortable. Be optimistic and look at all of us who are doing well. He has you for strength and good doctors for the rest.
Cliff
Robin
Everyone of us here know exactly how you are feeling. I thought I had a cold I couldn't shake and had 4 meetings planned 11/18/2011 (My day of diagnosis). I asked the doc who diagnosed me when I should COME BACK for an appointment and he said "You will be checking in today. Right now." I said for how long? He said for about 30-40 days!!!!! For the next 8 months it was all about cancer. There is a light at the end of the tunnel. Remember that.
Ed
I just lost my reply. :(
I know that it is so disconcerting for one's life to suddenly seem preoccupied with the horror of a terrible disease. That is why we are all here for you. We too have been sidetracked by our illness in a way that none of us could ever have anticipated. The thing is, Robin, that we have all made the journey to the summit of our misery, and now many of us have had the good fortune to take the exhilarating ride down the hill to good health, renewed love of life, and a future full of hopeful plans. I wish the same for you and for the others on this site that are just a few months behind us.
Cliff
Cliff's wisdom is so true. It is a period of time. No matter how long. I wanted to recount some of my last post. My 8 months of treatment were about MUCH more than Leukemia. They were about friendship, growth, renewed and strengthened relationships with family and loved ones. I went to China! I worked, I laughed, I struggled...I lived my life. Yes, Leukemia was a major part of it, but it was NOT all about cancer. There are many lights inside the tunnel as well. There will be much time spent together that might not have before diagnosis. This is indeed a silver lining to it all. Thank you Cliff, as usual, for giving me perspective.
Ed
Between you and Robin Roberts, I am amazed at how quickly you both got your lives back on track. Bravo!
Cliff
I have suffered from headaches throughout my journey. I have three very distinct style headaches and each has has its own cocktail and reason. Early on CT and MRI scans were in order. I am a 48 year old woman, diagnosed in Ju e 2012. I did have an incidental finding of a lesion, but turns out its not a big deal and not the cause of my headaches. Some headaches are medication related.
I have had migraine headaches that are treated with Imitrex. I have had sinus type headaches and dull occipital(back of head) headaches, that are usually handled with Oxy.
Obviously, you are worried and you have no doubt come to the right place for the "been there, done that" experiences.
I will pray for your dad. I hope that the road becomes easier.
Peace, love and hope,
Andrea
Headaches are just part of it -- my whole thing started with them. It is good that they are watching your dad closely.
If he just got through with his last chemo he will not hit bottom for probably about five more days. If he runs a fever or otherwise is feeling real bad, get him back for a blood draw and it might be justified to get his platelets up with a transfusion. This could be quite important to combating any bleeding in the brain.
They should have told you (perhaps they did when they said he is not going to feel any better for a while) that the effects of the chemo take a while to be realized. The chemo is killing the blasts but also his good blood cells, and so a transfusion might be the best thing to get him feeling better. No doubt he is neutropenic, and just because they sent him home, don't let down your guard. Keep him away from people, wear the mask when outside of his room, don't touch anything that could be questionable, wash hands every chance he gets, stay away from the vegetables that could carry bacteria. These are the things that will get him at this point, not the chemo. It is really important that you do not let your guard down until he is no longer neutropenic.
I am 69 and a three year plus survivor -- treatment was chemo only. I was DXed with AML/MDS with and 8-21 translocation. At my age and with my situation my onc said that a transplant was just break even. It sounds like in your case they feel it will be to his advantage. It is best to go with your med team, but I would ask them about the tradeoffs. Cliff had some extra procedures that seemed to minimize the GvHD -- I would be sure to explore those options as well.
We will be praying for your Dad. Be sure to tell him not to chance it if he is feeling dizzy or light-headed. I passed out when I was about at his stage of the game and could have really hurt myself ... my head hitting the concrete floor woke me up. So tell him to get down in a chair as fast as he can if feeling light headed ... get up slowly and be sure his head clears before walking around.
He is just about though it, and he is going to make it. Don't let up at this point. Keep doing all the good things that got him to this point. He is better outside of the hospital now because if he picks up some of the stuff in there, there's not much they can do about it. My onc told me I was safer at home. -- dave
You must be very worried about your Dad and how lucky he is to have a daughter helping him. You have to be happy about him achieving remission!
I didn't get headaches during chemo but I recently suffered badly for over a month when I had lumbar punctures. The headaches are so debilitating and worrying, so let the doctor work that out and have your Dad enjoy being chemo free for a while. Like the others have said, take precautions to avoid infection but also it's a time for him to get a bit of strength back. You go through so much physically, mentally and emotionally during treatment and need a bit of recharging after.
I hope your Dad's counts come back quickly.
Nicole