Things just got worse. Diagnosis is now acute leukemia (AML)
8 months ago I was diagnosed with low risk MDS. I had a bone marrow biopsy last week and my Doctor just call on the phone and said my MDS has progressed to acute leukemia. She wants to immediately get me started on a (I think she said)) low dose of some chemo and some pills for a week. She said the name of the pills but I was in shock and I don't remember the name. Maybe another week of chemo if necessary. She said hopefully it will put it into remission.
Does this sound familiar to anyone? We talked for at least 30 mins and she said a lot. Can anyone fill in the blanks not that I've come back to my senses? Thanks to all.
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I asked this question else ware and it should have been here.
Here is the question. I have acute leukemia and wondering if exercising to the point where I don't feel good, affects my blood counts when tested? Click the link below to view the responses
https://connect.mayoclinic.org/discussion/acute-leukemia-and-exercise/
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1 ReactionGood morning, @twitt1949 A couple of things to mention after looking at your blood work. With your Hemoglobin at 9, you're 'a quart low' as my doctor used to joke when he'd see my lab results.
Hemoglobin is a protein in red blood cells that carries oxygen and carbon dioxide in the blood. So, when your level is lower than normal, you'll feel more fatigued and tire easily if you're working too hard.
Your platelets are also low at 36 (36,000). Platelets are responsible for helping your blood clot. When they are lower than normal you can have excessive bleeding from cuts, nose bleeds or notice more bruising.
I know you're getting ready to enjoy a family vacation together. Just be mindful of your energy...don't over do! It's ok to be lounging in a camp chair! And please, this is not the time to start juggling axes or anything. 😅
And a little reminder that your immune system isn't very strong right now. It's super important to avoid infections...whether bacterial, fungal (from dirt, damp leaves, etc.) or viral.
No wading in a lake or river. Even small nicks can introduce bacteria to your body.
Have you heard from your doctor if it's ok to go on vacation? It will be crucial for you to begin your treatment as soon as you return.
Was there another blast count number?
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1 Reaction@loribmt Hi Lori. My doctor has me do a weekly blood draws. I will get a blood draw next week and my doc is planning on a video telephone call on the Aug 12 th to discuss the the blood draw and we will also discuss the vacation.
In the last pet scan there was was a small thing that showed up in my sinus area. My cancer doctor contacted my local ENT (ear, nose and throat) doctor to investigate what the pet scan seen. I met with him the other day and he wanted to do a biopsy, which he did this afternoon. Since my platelets was 36 they gave me a small bag of platelets just to be sure we didn't have a bleeding problem from the biopsy. I wish I wasn't 2 1/2 hrs from my cancer doctor.
As far as blast count, Aug 3rd I attached. Not sure if that is right or not. Seems like I heard my previous blast count was 27 thats why they changed it to acute leukemia . I might be mixed up, as I don't think it would go from 27 to 2. I welcome your thoughts Thanks.
Well, tomorrow is the big day. I am meeting with my cancer doctor from the U of Mich. Not sure exactually what he has planned but probably a bone marrow biopsy/ blood tests?. He/we couldn't get the other pet scan and other tests from the VA. We tried but don't know what the problem is/was. He said he has to have a base line to start with then retest after the shots and pills to see if there is any difference/change.
I had to talk with a girl in the office (maybe a patient advocate) and if we have any question, need help etc is is always there to help. I don't think she is a nurse. Anyways she explained what treatment I will have etc. She said I will get a shot for 5-6 days which is Vidaza and pills every day, which are Venclextra. If I understand her I will be on pills every day. I get the shots for 6 days then off for 20 days or (maybe 6 weeks)? Something like that. They say they tell everyone the appointment is about an hour for the shots but usually less than 30 mins.
Can anyone fill me in on these two drugs. How old are they? Did you have any side affects form them?
Any other in formation about them would be great. (Good or Bad) I'm looking for any info. I want to know what to expect. Thanks
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3 Reactions@twitt1949
Take this process a day at a time. Blood numbers at the low level are a sign. It is good to hear you are on your way to being treated. Blood tests and all those truth tellers.
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1 Reaction@katgob Thank you for your comments. I was hoping to hear if the drugs they want to put me on are good, not so good, average, or are as good as anything else. I get the feeling my treatment is not so good or there are better choices.
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1 Reaction@twitt1949 I have CLL vice AML, but do take Venclexta (400mg) daily. I've been taking it for 15 months. I have had no noticeable side effects with the possible exception of my hair thinning and turning very silver (the drug pamplet does mention dogs taking the drug during early testing had their coat turn white so perhaps I'm a bit canine). Some people complain of nausea and/or diarrhea while on it, but that hasn't been an issue for me. All-in-all a very effective and tolerable drug. You have to take with food and the meal should include some fat as the drug is fat soluble. Good luck!
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2 Reactions