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canceled next Hemo appointment 5 months 3 weeks ago #71406

  • gozorakgogo
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been awhile since ive visted here. Ive been stable at 100 for nearly 7 months now with cbc every 3 months. I had to cancel next months appointment because of work but now instead of rescheduling I dont think I will. I think Ill just pretend this past year has been a bad dream unless and until I show signs of another platelet drop. Is this foolhardy on my part or should I just forget the whole thing? Whats the point anyway if ive been stable for this long?

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canceled next Hemo appointment 5 months 3 weeks ago #71407

  • MelA
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I did the same as you are thinking of doing - for a number of years my count stayed between 85k & 125k (IF memory serves me right), I'd just see my PCP for yearly physical and he would do blood work. Then in 2002 I had to have a tetanus booster - no signs of a platelet drop, just a "feeling" - sure enough my count had tanked, thankfully my hematologist whom I hadn't seen in years found my records in the basement storage area and I was once again her patient.

I think what I probably would do over is talk with my hematologist and see if she would see me on a yearly basis just to keep in touch and get a count done, and that way I was an open book if needed her again.

You do what you feel is right for you! But personally I couldn't pretend this past year was a bad dream, it wasn't.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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canceled next Hemo appointment 5 months 3 weeks ago #71410

  • ImPatient
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It's what my doctor suggested to me: If I stay stable long enough, quit therapy until signs show. If you can do that... I often can't. Last time I was at another doctor's who doesn't even have anything to do with this he noticed:"Oh your skin looks like your platelets dropped, you should go to the hospital immediately." Didn't seem that bad to me but he turned out right.

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canceled next Hemo appointment 5 months 2 weeks ago #71416

  • jessmeyer
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I agree with others in that you should talk to your Hemo. I have been in remission twice, once for 7 years and once for 2.5 (am back with ITP currently). I always know when my ITP is back, almost to the day. That being said, I usually get blood tested every 6 months when in remission and weekly / monthly when in treatment (and for the first few months after treatment).

My Hemo said to me, when I was early in my first remission, that I would know before a blood draw if my ITP was back. He has always been right!

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canceled next Hemo appointment 5 months 2 weeks ago #71417

  • gozorakgogo
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What did you experience as far as symptoms that led you to know your low platelet levels were back/ I ask out of curiosity. I understand that everyone is different. I am guessing that my platelet levels were really low for a month and a half before my hospital visit and diagnosis. Thats about when the bruising, smelling and tasting blood, and Petechiae and extreme fatigue began gradually growing worse until that first cbc indicating a level of 2. So does this mean that I probably wont show symptoms unless and until my levels are exceptionally low? I understand that some with ITP will experience bruising and such with platelet levels in safer ranges.

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canceled next Hemo appointment 5 months 2 weeks ago #71418

  • gozorakgogo
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wow. What a long way we have come from having to find records in the basement(kudos to your DR for keeping those records) to patient access to all records and comments via an app.

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canceled next Hemo appointment 5 months 2 weeks ago #71421

  • jessmeyer
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Good question, and everyone is different. I don’t really have a middle ground with platelets. Mine are either normal or very low. My two most noticeable symptoms are bruising and a very heavy period. With bruising, I will get huge, dark bruises and have no idea how I got them. I currently have 7 or 8 on my body, and some are 6 inches in diameter. That doesn’t happen when my platelets are normal. With the period, I can go from a normal experience one day to an almost scary situation the next. It is a very significant difference. I have other symptoms, but those are the most noticeable.

When I was first diagnosed, I think I had been dealing with low platelets for 8+ months. In hindsight, I was living with really scary symptoms and didn’t tell a doctor until my annual physical in August (which triggered a blood test, a 4 day hospital stay, a diagnosis, and 8 months of treatment before the first remission). I say 8+ months, because I went to the ER in January of that year for a nose bleed that was gushing and had lasted for two hours without stopping. The ER never ran a blood test but did ask me if my home had radiator heat (which it did), so they blamed it on dry air. I got a dehumidifier and didn’t have crazy nose bleeds again. Of course, I didn’t tell them that my periods usually lasted for 3 weeks out of the month and were extremely heavy, and I didn’t show them the bruises covering my body. I was 24 and scared and stupid (which I can easily say now, 10 years later).

The first two times I had ITP, my lowest counts were literally 0. This time (which started officially today with my blood test), I am at 16k. That isn’t crazy low, but my normal is around 300k - 350k (which is what I was at in December at my last blood draw).

If I had to guess, I think my ITP came back two weeks ago. Memorial Day is the first day I remember seeing a bruise on my arm and had no clue what caused it. Stubbornness is what made me wait two weeks until I went in for a test.

You know your body the best. You know when something is wrong, and ITP is a huge wake up call for you to pay attention to those things. But, make sure your Hemo is on board. I think, at minimum, you could ask for less frequent tests.

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canceled next Hemo appointment 5 months 2 weeks ago #71432

  • gozorakgogo
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ITP was more of a beat down by a 2x4 destroying my delusion of forever youth and health lol

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canceled next Hemo appointment 5 months 2 weeks ago #71433

  • jessmeyer
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Very fair. I felt similarly in the beginning and still do, at times. It sucks having this hang over your head. It sucks that no one knows what it is, so you can’t just tell someone you have ITP, you have to tell them a whole story. It sucks to not feel good or look good (the “are you safe at home” question is well intentioned but embarrassing because you know people are noticing the gross bruises on your arms and legs). It sucks to be on steroids and have your emotions and energy levels and sleep cycles messed up. Don’t brush aside or diminish that. It is ok to be pissed that this rare and frustrating disease picked you. I just try to balance those feelings with the good ones. It does make me appreciate my healthy moments more, when I am in remission and don’t have to worry about my platelet count.

Hang in there!

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canceled next Hemo appointment 5 months 2 weeks ago #71438

  • gozorakgogo
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Actually Ive never been angry, afraid, or depressed throughout the past year. Confused and anxious over those first few months? Absolutely. If anything, because im shallow and superficial I hate the way the past year has wrecked my body and its appearance. "Its better to look good than to feel good" as Fernando used to say on SNL. Now I neither look or feel good. Apart from my feelings on no longer looking good without my shirt off or having been to the tanning salon in over a year I rarely think about ITP or the possibility there might be a relapse in the future.

Anyway the actual reason I am updating is that after signing on to my Riverside Hospital MyChart I see that even with my canceled Hemo appointment next month there is an appointment on the books for September. I wont cancel that one as it will have been 5 months since my last appointment. Ill see where Im at then

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canceled next Hemo appointment 5 months 2 weeks ago #71445

  • MelA
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I too have never been angry or depressed or afraid because of ITP. Anxious when my hematologist in Hong Kong kept panicking if my count dropped - anxious when back home and my count did hit the gutter and more treatment needed, so anxious that I gave myself a case of the shingles :(

No tanning salon - gozorakgogo think of it this way, you are keeping yourself from skin cancer!

Glad to hear you do have an appt in September - I think it is a good idea to keep in touch with a hematologist, can't hurt a thing.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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