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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 had another blood draw and test today. My blood counts are pictured below. They weren't real concerned as its normal. But they did give me another bag of red blood. I can't wait for the day I will feel normal again. I don't feel good and I still have to take those darn pills which I think are making me feel bad.
Whats the difference between RBC's and Hemogloben?
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3 Reactions@twitt1949 Hang in there, Terry. I know, this is a really rough period during a chemo cycle. When all the blood numbers get low, it seems to take morale right down along with it. Raising my hand in a ‘me too’ moment, I remember! It gets better! But takes some time. The goal is to rid the body of cancer cells.
You asked the difference between RBCs and Hemoglobin. RBCs (Red blood cells) are the cellular components of blood that are responsible for transporting oxygen. Hemoglobin is the iron-containing protein within red blood cells that binds oxygen for delivery to tissues. So, using an analogy, RBCs are the vehicles, and hemoglobin is the cargo that enables oxygen transport, if that makes sense. This is all with an un-caffeinated brain! 😅. The lower either of those two numbers go, the more sluggish you feel.
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9 Reactions@loribmt Is there anyone that is taking acycloir 400mg , Cresemba 186mg , levofloxacin 500mg, developing a funny test in their mouth? Tests like chemicals or an aspirin that is dissolving a little in my mouth ?
Right now these are the only three I'm taking daily now is:
acycloir 400mg
Cresemba 186mg
levofloxacin 500mg
I think these are anti fungal, anti bacteria, anti infectious or something like that.
Is it normal to have the funky taste in my Mouth?
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1 Reaction@twitt1949
Hi Terry, actually all three of the meds you’re taking may leave a funky taste in your mouth. It’s not unusual to have a metallic or sour/bitter taste from levofoxacin, Acyclovir or Cresemba. With the chemo you’ve been on, you might experince a loss of smell and taste for a while too.
Sometimes it can help to gently brush your tongue and rinse your mouth after taking the meds. But since this is all systemic, there may not be much you can do to combat the taste.
You could try sucking on some hard candy like lemon drops. But you also want to be careful not to add too much sugar to your diet. Lower starch in the diet can aide in preventing yeast infections.
Drink plenty of room temperature water every day too. Helps flush the meds through your kidneys. ☺️
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3 Reactions@loribmt Thank you Lori. Your a god send for us.
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2 ReactionsOf the three drugs, I am on acyclovir. No creepy taste in my mouth. My metal taste was during my breast cancer treatment and the drug was Lynparza. I 2nd water and small little hard candies when the last overwhelms. I hate to say i got used to the metal taste and it took me a month after i finished the pill to realize i did not have the metal taste.
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4 Reactions@twitt1949 I have been on 400mg twice daily acyclovir ever since my release from the hospital in April 2024. Levaquin 500 mg each day for 7 days when my neutrophils fall below .500. The side effects from the Levaquin are overall worsening body aches. The metal taste was predominate when I was on intensive chemo the first 6 months of treatment. My AML is in deep remission however I am now being treated with INQOVI for MDS. This has resulted in me losing my hair like when I was first going through treatment. I must admit I am very upset as this “side effect” is not mentioned anywhere in their literature or website. My pharmacist contacted the Manufacturer and they confirmed hair loss was possible but not common. I am going to talk with my Hem/Onc on Wednesday and see if I can go back to Dacogen/Venetaclax (was on for AML) to treat the MDS. I do not want to lose any more hair. Keeping prayers for all of us on this roller coaster called cancer!
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7 Reactions@katgob aren't you well past your first year post transplant? Why are you still on Acyclovir?
@twitt1949 .I take the same drugs you are on..i have lose my sense of taste..i guess it is gone forever because I have to stay on them. Also take venetoclax and vidaza. For aml
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2 Reactions@sonieaml my oncologist told me when you go from mds to aml ..it does never go back to mds..conflicting i know. I had mds that advanced to aml....in remission now. I wonder in lori to find out ...she great with getting information
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3 Reactions