Hi Sarah,
It's the Queen of Low Platelets (wish I were the Queen of England though, she is good and old and healthy). The signs you need to watch for are:
- Excessive bleeding from cuts or scrapes (and probably heavy menstruation for some).
- Black, tarry stools
- Red blood in stools
- Easy bruising
- Petichiae (red spots under skin)
- Abdominal pain
- Severe headaches
These are the most common signs of internal bleeding due to low PLT. They don't all have to be present. My PLT for the last 2.9 years have waffled from 20,000 to 70,000. When I was first dx, my PLT dipped to 80,000 right away. The onc freaked out and took me off Gleevec twice in 3 months I started. It did not help. I had other issues too, so it was decided that I stay on Gleevec no matter what. Nothing was done for the low PLT because I did not show any signs of bleeding. It is possible to to be given a PLT transfusion if needed or shots to help your body make more.
I have learned that platelets are queer little things. You can have a really high PLT count and they don't do a very good job of helping you to clot, or you can have a normal amount and the same issue. You can have low PLT and clot normally (or not). That has been my issue, (even at 20,000, but I never had any treatment for it). Nevertheless, since PLT counts fluctuate all day, like all blood counts do, sometimes I can tell when mine are not working well. Recently, I have been bitten 100 or more times from mosquitoes (not kidding, and yes, I use insect repellent; DEET doesn't work, so I am on the quest for better). Anyway, I have been sprouting long oozing leaks from the scabs I scratch. I also have a huge bloody splotch near my collar bone and petichiae all over my chest (but if my memory serves me correctly, I have always gotten petichiae--little red to medium sized red flecks-- on my neck and chest, just not big splotches). However, I wore a huge and heavy backpack for 6 hours at a children's museum, and wandered a Chicago tourist trap (Navy Pier) last Thursday with a 35 lb. 3 yr old who screamed and cried if I didn't carry her . So, if you notice anything you think is awry, just go over what may have caused the bleeding. It may be something that would for any person without CML or blood issues, (i.e. insanely heavy backpack, heavy toddler, etc.). Nevertheless, I have my period now and it is mild. I split my knee open the other day by walking into the corner of a sharp wooden drawer (thought I could clear it between it and the dishwasher, but the klutz I am...). Anyway, it clotted immediately. So, overall, I would say the quality of my PLT are mostly good. These are the kinds of things I always watch for. If things were to change for the worst, I would call my hematologist.
Like with low WBC and HGB, PLT are a judgement call with oncs. Some have higher thresholds than others before they want to intervene. Most people cannot hold off bleeding at 20K or below. Some oncs feel uncomfortable with ANC below 1.0 and some like to wait and see what happens. If things seem to be working at low levels, then there is no need to do anything. I would just advise to be careful, (like, no extreme sports or maybe you should use an electric razor). In time, you will begin to understand your body and its flux. But you might have an onc intervene at some point and suggest some plan of action. You could always write again and play it against us to see what we experienced.
Now, since I have not read all the posts, I will stop here. I think someone mentioned issues with anemia. I just so happen to have major influence in that kingdom (speaking of being a queen of something). I have had dangerously low HGB in the past and dealt with it for quite a while.
BTW, I am now on Sprycel. My PLT have always been low since starting a TKI. They have never really recovered. Most people have their PLT return to normal.
But I am still here, apparently stable, and seemingly clotting well.
Please take care. Try not to get too worked up about this. It can really scare you. My last onc put me through the wringer. Like I said, there are PLT transfusions and shots. As a matter of fact, there are shots and transfusions for almost anything.
Good luck and good health,
Tedsey