I have similar situation with my dad right now. I am attaching my post from another message. It’s rather long and rambling bottom line he has been getting dacogen treatments that have helped. My 85 year old father has Congestive Heart Failure and COPD. A several months ago he went into A Fib not unusal and we went to ER. From the blood work they said his WBC was too high and they couldn’t find infection. I took him to primary his prostrate levels were extremely hight.. We went to hematologist/oncologist he did a bone marrow on him. By the time I took him for bone marrow test he was hardly able to breath and was in bad shape. Few days later doctor called and said he has AML and there is no treatment to call hospice he has between 1-3 months, which is what i was going to do I didnt want to tell him he only had few months to live. Some friends and family said he had a right to know and to take him to the oncologist. I’m glad I did. Doctor told him he knows whats wrong with him and he can help? He told me many of his collegues have been using drug “Dacogen” for older patients with this disorder. Not only was his WBC high, but HGB and plateletts very low. We decided he would start treatment that coming Monday 1 hour a day Mon – Fri… then test blood work one day a week for two more week then 3 week see doctor then following week start treatments again. We were under the impression he would have to do 4 cycles.. First cycle Mon, Tues, Wed, he was fine, by Thursday he HGB was getting low (harder to breath) and he had insomnia. Friday took him for his last treatment for cycle one and I told the nurse he is really bad in breathing etc.. They checked his blood count and his HGB was at 8.2 but because of his age, COPD and Heart Condition they gave him a blood transfusion. In a few days he started feeling better ..Starting Cycle 2 same regimen MON – Fri 1 hour then 3 weeks later repeat.. From Cycle 2 – Cycle 4 was most of the same he would start to feel the insomnia, more shortness of breath etc. but about a week after cycle finished he was better each time. The biggest problem was his insomnia. Doctor prescribed him low dose of ambien caused him to become psychotic and delusional, but he snapped out of it after about 15 hours. Next we tried low dose of ativan same thing he got psychotic and delusional. Finally by 5 cycle I said I am not trying any more prescribed drugs. (he also takes about 9 different pills for CHF and 2 Nebulizers and Spiriva for COPD) My dad lives with me and thank God for my daughter (28)she has been living with not working and has been great taking care of him because I can’t afford to lose my job. My father is a great man, but very stubborn and makes it very difficult for my daughter and I to help him. He really can not be left alone. He gave us a hard time for weeks about using a walker, he tries to take oxygen off and see how long he can go without it, etc.. He’s strong willed and I know he wants to gets better so he can go out again and not need constant oxygen etc. Anyway getting back to his cycle of treatments he was very disappointed when doc told him about cycle 5 and 6. He thought it would be 4 cycles and that’s it. Anyway we get to cycle 5 again he feels pretty awful by end of week and few days into following week, but this time he didn’t seem to be bouncing back like before. We went to see Doc the following week instead of just blood work since he didn’t seem to be getting much better. His HGB was at 9.2 and doctor said I think he should continue to finish cycle 6 and then they would check bone marrow. Original bone marrow showed 20% blasts. A few days ago he told me he had a pain in his chest, but he always refuses to go to hospital and ER. Yesterday I took him to doc again. I figured if he is still feeling this bad maybe starting cycle 6 on Monday may not be a good idea because we know that usually he starts out feeling good and then by end of week not so well. Yesterday doc mentioned something about CMML. I try to do a lot of research of my own on line besides what doctors say! I asked him, CMML, I thought he had AML. He replied that it’s CMML but it appears or works the same way as AML?? My father has become impossible.. He is constantly complaining won’t cooperate etc.. So after all this ( glad to vent) he will be starting his 6 cycle on Monday.. Yesterday his HGB was 10.1 but something is off..he is pale, still short of breath. Usually when his HGB gets to a 10 or above he was doing great, didn’t even use oxygen all the time. After next weeks cycle he will get a bone marrow test on Dec 2. Doctor said if it is helping and blasts are down they will try to continue treatments but will longer rest periods, maybe do a cycle once every 6 or 7 weeks, but he said if blasts are higher or not improved then to stop all treatment. I was thinking that since the HGB- 10.1 WBC(7.4) and Plateletts (80) I know none of this is normmal but better than it was that the treatments must be helping and that when they do bone marrow should come out with less blasts, but since none of the numbers are normal range maybe not. Is it possible that even though blood counts have improved the blasts may have increased. He has been getting different bone and joint pains. Another dilemma, because both the Dacogen can cause bone and joint pain from side effects but so can CMML and AML.. With all this rambling does anyone have any similar situation????
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