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Drop in Platelets

  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 11 months ago #32659 by amberyard
Drop in Platelets was created by amberyard
My last count was 83 and got a CBC yesterday and just got them back. They are down to 32 :( so I made an appointment with the oncologist for next week. I really was thinking that they would be high, I'm feeling good and not bruising, I had a broken nose 2 weeks ago and it healed really fast and nice. I'm at a loss, he said I would not have to come back until it dropped below 50. So its up then down :(

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12 years 11 months ago #32660 by Winnifred
Replied by Winnifred on topic Drop in Platelets
ITP the roller coaster ride that one time your smiling and loving life and the next thing you know your on a downward slope and scared out of your wits.

I now just go with the flow and remember I love roller coaster rides!


Hope your counts rise to normal or stabilize at a count you can live with!

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 11 months ago #32663 by amberyard
Replied by amberyard on topic Drop in Platelets
Thanks! This is the best place to get support from...

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 11 months ago #32681 by dru
Replied by dru on topic Drop in Platelets
At least your count is still in the safe range and you aren't having symptoms, that is a good thing.

Like Julia said it is a roller coaster and there are lots of us on it with you :)
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12 years 11 months ago #32688 by Vdeutsch85
Replied by Vdeutsch85 on topic Drop in Platelets
I'm sure I've said this before, but this sight has been a lifesaver! I have great friends and family who are very supportive, but it's great to have people on the "roller coaster" with me!

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12 years 11 months ago #32689 by Vdeutsch85
Replied by Vdeutsch85 on topic Drop in Platelets
Amber yard,

When were you diagnosed? What treatments have you tried?

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  • weirdjack
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12 years 11 months ago #32703 by weirdjack
Replied by weirdjack on topic Drop in Platelets
I know the feeling. Two weeks ago my count was 39k and on the rise finally.
I got a CBC last Wednesday. Yesterday my hematologist called me to tell me the count was 14k.
No bruising, no bleeding, no real symptoms (other than fatigue)....no biggie.
Life goes on. B)

BTW: As he and I discussed on the phone yesterday; platelet counts rise and fall constantly, so it could be that I got a CBC when they were naturally ebbing. Plus, the platelets I do have are spanking new and super sticky....not many of them but they sure do work well. Been sub-5k so often over 10 years that what may be considered a low count really doesn't faze me now.
.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 11 months ago #32709 by amberyard
Replied by amberyard on topic Drop in Platelets
Diagnosed in 4/12, Pred, ruxitan 8 rounds

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12 years 11 months ago #32838 by Vdeutsch85
Replied by Vdeutsch85 on topic Drop in Platelets
I hope I can get to that point weird jack. I was having good counts for the past month. Then I started feeling very tired and achy yesterday. I could barely walk around zoo, but pushed myself to see some of the animals. I felt like I was 97. Today I have petichae from head to toe. I know my counts are low and this has happened several times before but still very frustrated and upset. :( we shall see what my counts are tomorrow. Hoping above 10 so no IVGs.
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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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12 years 11 months ago #32842 by Sandi
Replied by Sandi on topic Drop in Platelets
I thought for a second that you thought your counts were 97 based on how you felt. I almost blew out my mouthful of tea.

Good luck with the counts!

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12 years 11 months ago #32846 by Vdeutsch85
Replied by Vdeutsch85 on topic Drop in Platelets
Sandi,

Ha ha you are too funny. I should have said 97 years old! I saw kiddos in strollers and wanted to rent one so I could be pushed around and still enjoy the animals!
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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 11 months ago #33001 by amberyard
Replied by amberyard on topic Drop in Platelets
Started to have signs, bruising and gum bleeding. Test should be back in an hour or so and re check and hemo this afternoon. Will post as soon as I get them. Yesterday was a really bad day tired and weak, did not feel right at all.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 11 months ago #33002 by amberyard
Replied by amberyard on topic Drop in Platelets
Just got labs back and it went from 32 to 14..... :(
Stressed and lost.... :((

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12 years 11 months ago #33007 by jeffrey71
Replied by jeffrey71 on topic Drop in Platelets
Amber,

You hang in there. Call you doc and see what they to do. Just take it one logical step at a time. You know the drill. We all have the ups and downs of the "counts". Go and treat yourself to something you really like, my treat is ice cream. Hey, it doesn't nothing to the counts but it sure is nice for a bit!

If you need to rant rave and shout just let me know! I will help you do that! You know I am pulling for you and have you in my thoughts!

Jeffrey

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12 years 11 months ago #33021 by ashybobashy
Replied by ashybobashy on topic Drop in Platelets
I know thwt feeling. Last year I was told my platelets were 14 and told to carrying on working. I was like so anxious it's so annoying. Keep updated, hopefully it's just a drop and it will be up n no time.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 11 months ago #33023 by amberyard
Replied by amberyard on topic Drop in Platelets
Thanks so much Jeffrey! Doc wanted to put me in the hospital and give me platelets I do not have that kind of money. So dex 40mg for 4 days. CBC tomorrow to see if the counts are up if not I have no choice but to get the platelets. I am hope the are up!!!

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12 years 11 months ago #33035 by jeffrey71
Replied by jeffrey71 on topic Drop in Platelets

amberyard wrote: Thanks so much Jeffrey! Doc wanted to put me in the hospital and give me platelets I do not have that kind of money. So dex 40mg for 4 days. CBC tomorrow to see if the counts are up if not I have no choice but to get the platelets. I am hope the are up!!!


Keep me posted!

Jeffrey

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 11 months ago #33129 by amberyard
Replied by amberyard on topic Drop in Platelets
Update got re checked on Friday am and came back at 17k. Then my husband got a call when I was driving back to work to go to the ER. Doctor wanted them above 20k. So last night and this morning I got IVIG's 4 bottles. Count at 34k when I was starting the 4th one. So talked to the doctor getting 4 more starting around 8pm tonight. If things are going up h e wants to let me go in the am. Husband went to check on the dogs and my Cheno is depressed. He hasn't really moved; he is where I left him upset on the arm chair.

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 11 months ago #33131 by amberyard
Replied by amberyard on topic Drop in Platelets
Photo's from the hospital.... hoping to get out tomorrow!!! Keep your fingers crossed!!
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12 years 11 months ago #33135 by Vdeutsch85
Replied by Vdeutsch85 on topic Drop in Platelets
I hope you get your counts up and get to go home tomorrow! Has a hematologist talked to you about any long term treatments?

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12 years 11 months ago #33136 by Vdeutsch85
Replied by Vdeutsch85 on topic Drop in Platelets
Your dogs will be happy to see you! My dogs do not leave my side when I'm not feeling well. They really are the best medicine....they make dealing with itp a lot better!

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 11 months ago #33137 by amberyard
Replied by amberyard on topic Drop in Platelets
Yes the rx company will be paying for it. It is called Promacta. has anyone been on it?

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12 years 11 months ago #33144 by jeffrey71
Replied by jeffrey71 on topic Drop in Platelets
Amber!

Quite a photo shoot! :) Hope you are doing better!

Jeffrey

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  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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12 years 11 months ago #33147 by dru
Replied by dru on topic Drop in Platelets
Hope you are doing better now :)

Many people here on promacta. Also info on it in the treatment section.

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12 years 11 months ago #33149 by Vdeutsch85
Replied by Vdeutsch85 on topic Drop in Platelets
Amber,

I'm glad they have a plan in place for you! Good luck with Promacta. You should probably talk to weird jack. He calls himself the "poster boy" for it. Keep us updated! :)

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 11 months ago #33153 by amberyard
Replied by amberyard on topic Drop in Platelets
Vdeutsch
My dogs are the same will not leave myside; sure do miss them!

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12 years 11 months ago #33184 by jeffrey71
Replied by jeffrey71 on topic Drop in Platelets
Happy Memorial Day Amber!

I hope you are doing better! Let me know!

Jeffrey

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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 11 months ago #33191 by amberyard
Replied by amberyard on topic Drop in Platelets
Tired weak and sore today. But I'm sure that is normal for been poked tons of times at the hospital. Got some really nice new bruising from the hospital. Trying to document everything with photos and paper work. I need a new binder the one i'm using now is full. Got lots of phone calls to make tomorrow too lady's that help people find ways to get groups to pay medical bills for people that don't have the money and no insurance.

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12 years 11 months ago #33194 by jeffrey71
Replied by jeffrey71 on topic Drop in Platelets
You hang tough! The important thing is that you are getting better!

Jeffrey
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  • amberyard
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  • Lowest count 0-1k highest count 1,247,000 11/2/21. 189,000 N-Plate 527 Weekly CBC
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12 years 11 months ago #33257 by amberyard
Replied by amberyard on topic Drop in Platelets
CBC was today re check tomorrow should find out count about 10:30am. Still have a headache from the IVIG's trying to relax with the dogs and wait for it to go away. Will get new RX in mail on Friday just have to talk to the doctor and see what he wants me to do.

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