1. < Blood Cancers & Disorders

Platelet infusions

Posted by corvairfan @corvairfan, Jun 1, 2023

Not sure if I’ve seen this. Platelets are 25(000) following about three years between 35-48. If they drop below 20, my hematologist will consider an infusion. How many infusions before other treatments are considered? No gum bleeding, very infrequent nose bleed (usually in dry /dusty) conditions. Current Hemoglobin is 12.5, normal for me.

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crhilston | @crhilston | Jun 24, 2023
In reply to @loribmt "Just checking in to see how your appointment went today…or is still upcoming perhaps. The transfusion..." + (show)
@loribmt

Just checking in to see how your appointment went today…or is still upcoming perhaps. The transfusion will help recharge your system again. Not nearly as fun as a Lemon Drop martini… I can’t drink those anymore either. Boy, our lives sure change abruptly when we least expect it. 🙃

I’m sorry to hear you have zero appetite. Makes it very difficult to feel like eating anything. It’s great that you’re still able to join your cohorts at breakfast and lunch. It really does seem to help when you’re sitting with a dinner companion to be able to eat, even if you’re not very hungry. Talking and eating seem to go hand in hand…I tend to overeat when I’m out with friends. Hah, and then I can make all kinds of excuses for eating things that are usually not on my healthy diet list!

It sounds like you’re in a very nice facility where you can migrate over to different areas as the need arises. You’ve certainly been blessed with a long, independent life. A friend’s mother who lives in Madison had her 93 birthday last week. She just moved to a similar facility where she is independent but has the ability to change services when warranted. That takes quite a bit of the worry away from unexpected life changes and having to move.

I hope your day at the clinic goes well. Let me know what you find out, ok? I promise I’ll always be frank and open with you so nothing is off limits. Hugs.

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Yesterday was one of the most bazzare yet. Routine CAC went well even though numbers showed no improvement. Upon returning home everything went topsy/turvey. I have no memory of anything happening for over 12 hours, including never going to bed. I have no idea of what's going on.

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Mentor
Lori, Volunteer Mentor | @loribmt | Jun 24, 2023
In reply to @crhilston "Yesterday was one of the most bazzare yet. Routine CAC went well even though numbers showed..." + (show)
@crhilston

Yesterday was one of the most bazzare yet. Routine CAC went well even though numbers showed no improvement. Upon returning home everything went topsy/turvey. I have no memory of anything happening for over 12 hours, including never going to bed. I have no idea of what's going on.

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What a weird event! I wonder what happened for you to have no memory of anything for over 12 hours. Where were you when you realized this happened? Did you wake up in bed?

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jun 26, 2023
In reply to @loribmt "What a weird event! I wonder what happened for you to have no memory of anything..." + (show)
@loribmt

What a weird event! I wonder what happened for you to have no memory of anything for over 12 hours. Where were you when you realized this happened? Did you wake up in bed?

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Hi @crhilston, just checking in to see how you’re feeling today. Anymore memory lapses?

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crhilston | @crhilston | Jun 28, 2023
In reply to @loribmt "Hi @crhilston, just checking in to see how you’re feeling today. Anymore memory lapses?" + (show)
@loribmt

Hi @crhilston, just checking in to see how you’re feeling today. Anymore memory lapses?

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Sorry to report nothing that's good news. Moving to assisted living tomorrow. Have decided I can't live alone any longer. Also, I have a consult with my oncologist tomorrow. Thins are moving quickly.

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crhilston | @crhilston | Jun 28, 2023
In reply to @crhilston "Yesterday was one of the most bazzare yet. Routine CAC went well even though numbers showed..." + (show)
@crhilston

Yesterday was one of the most bazzare yet. Routine CAC went well even though numbers showed no improvement. Upon returning home everything went topsy/turvey. I have no memory of anything happening for over 12 hours, including never going to bed. I have no idea of what's going on.

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I had a similar experience.Weird.

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Mentor
Lori, Volunteer Mentor | @loribmt | Jun 29, 2023
In reply to @crhilston "Sorry to report nothing that's good news. Moving to assisted living tomorrow. Have decided I can't..." + (show)
@crhilston

Sorry to report nothing that's good news. Moving to assisted living tomorrow. Have decided I can't live alone any longer. Also, I have a consult with my oncologist tomorrow. Thins are moving quickly.

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Hi @crhilston, this is a wise and pragmatic decision to move over to assisted living, especially with these weird episodes you’ve been experiencing. Having a nursing staff keeping an eye on you and being there should you need anything will be comforting.
I know you wanted to stay as independent as possible and that luxury is so hard to give up! I’m never one to rely on assistance either but boy, did I have to learn in a hurry that I don’t always get to be in control and, that relying on other people to help me wasn’t so bad after all. Asking for help is one of the hardest things to do!

So I hope this shuffle over to assisted living will at least bring some peace of mind that you have back-up right there for when you experience a ‘not so steady’ day.

It will be interesting to learn what your oncologist has to say about these lapses you’re having. I wonder if it’s related to the low red blood count. Will you be having another transfusion?
Best wishes for a smooth move today. I hope your new neighbor’s are friendly. ☺️ Air-hug!

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1 reply
crhilston | @crhilston | Jul 1, 2023
In reply to @loribmt "Hi @crhilston, this is a wise and pragmatic decision to move over to assisted living, especially..." + (show)
@loribmt

Hi @crhilston, this is a wise and pragmatic decision to move over to assisted living, especially with these weird episodes you’ve been experiencing. Having a nursing staff keeping an eye on you and being there should you need anything will be comforting.
I know you wanted to stay as independent as possible and that luxury is so hard to give up! I’m never one to rely on assistance either but boy, did I have to learn in a hurry that I don’t always get to be in control and, that relying on other people to help me wasn’t so bad after all. Asking for help is one of the hardest things to do!

So I hope this shuffle over to assisted living will at least bring some peace of mind that you have back-up right there for when you experience a ‘not so steady’ day.

It will be interesting to learn what your oncologist has to say about these lapses you’re having. I wonder if it’s related to the low red blood count. Will you be having another transfusion?
Best wishes for a smooth move today. I hope your new neighbor’s are friendly. ☺️ Air-hug!

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Again, thanks so much for talking to me via connections! I am on a once-a-week infusion schedule now, however, I'm not sure it helps. But, why not try? I had my weekly CBC yesterday; the numbers are nearly all negative with slight ups and downs here and there. I did get a new concern though. Absolute immature granulocytes went from steady to 290 in one week. According to Mayo, this is an early marker for sepsis. Your thoughts?

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Jul 1, 2023
In reply to @crhilston "Again, thanks so much for talking to me via connections! I am on a once-a-week infusion..." + (show)
@crhilston

Again, thanks so much for talking to me via connections! I am on a once-a-week infusion schedule now, however, I'm not sure it helps. But, why not try? I had my weekly CBC yesterday; the numbers are nearly all negative with slight ups and downs here and there. I did get a new concern though. Absolute immature granulocytes went from steady to 290 in one week. According to Mayo, this is an early marker for sepsis. Your thoughts?

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Good evening. LGL’s - the immature granulocytes- can be symptomatic of a variety of conditions. Typically with AML you’re overproducing white blood cells that are immature as a result of your myeloproliferative disease. The over producing cells spill into your blood so the measurements in blood results are higher.
But, as you mentioned, LGL’s can also be an indicator of an ongoing infection that is stimulating your bone marrow to produce high levels of WBC to defend against the infection and released before they are completely mature.

Do you have a fever or signs of an infection?

If that happens, the treatment plan could most be IV antibiotics. As AML progresses you have white blood cells all over the place but they are immature and not functional, making you susceptible for infection. It’s quite common for AML patients to have multiple infections. When I was admitted to the hospital the day I was diagnosed, though I had no indication of infection, I was immediately put on infusions of 3 different IV broad spectrum IV’s as a prophylactic measure. That was common for me during my many months of chemo.
So please keep an eye on your temperature. If it is elevated to 100.3 you need to call your oncologist’s office for direction.

I think it’s a really great idea that your doctor has suggested weekly infusions of an abrogator for you! You’re right, there is nothing to lose but everything to gain. ☺️. What is the name of your new medication?

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