Danica started Decadron today

Danica's count was 77 today - (day 7 after IVIg).

We saw her hematologist today, and he decided to give her the Decadron orally. Hooray - we don't have to go to the city every day for IV!!!!

He said that it will take three weeks to see if it works, so she can have IVIg if needed.

Our other option was to try the Rituximab, but he said that if it was his kid, he would not use it. That means that our next option would be to remove her spleen. I know that once it is gone, we can't put it back, but honestly, I think that I am ready to take that risk if it will give her her freedom back, and get her off of all these meds and IV's.

She has an ultrasound on Wednesday to check on her spleen.

We will repeat her CBC on Friday.

I will let you guys know how she does with the meds, and with her counts.

Wish us luck

Michelle

best of luck, michelle!!! I sure hope this works.
I am new to this, and just started prednisone 3 wks ago. My counts went up from 35,000 to 185,000, now they are down to 108,000 10 days after that good reading.....
I think this is gonna be a roller coaster ride!!!!!!!!
I hope Danica does well with this meds

Michelle and Danica

Good luck with the decadron - really hope it works with not too many horrible side effects. Let us know how it goes.

Ali

P.S. - we were both way out with the guessing game then Michelle! 77 is really good considering everything.

so this is really weird - Danica started the pills yesterday afternoon, and by night time - she developed petechia. she never gets petechia until she is under 15. I thought it was really weird considering her count was 77 yesterday.

I am debating on whether or not I should do a CBC today. She was also really warm last night, and although she was tired, she could not sleep very well. I got called to work to do an x-ray in the middle of the night, and when i came home, she was up, and said that she had not really slept yet. this was at 2:45.

She said last night that she was already getting irritable - oh boy, what is this going to be like for the rest of the week????

Michelle

Hope all goes well with the ultrasound and I hope her count goes up from the Decadron as well. I'm sorry she is already experiencing side effects. I hope she doesn't continue to have the side effects through the whole course of Decadron.

How long has Danica had ITP? Has she officially been diagnosed with chronic ITP? I hope splenectomy will bring her into remission if this is what they suggest for her. It may very well be Caitlin's next step if the Rituxan doesn't bring her in to at least partial remission.

Hi Michelle,

So sorry to hear that Danica is having such a tough time. Hopefully the Decadron will work and get her platelets to a safe level, without too many side effects. Zach has to go on Prednisone at the end of the week, so he can have his wisdom teeth removed during spring break - fun stuff! He's having it done at Regina.
Take care and best of luck.

Shelly

Shelly - nice to hear from you. I am sure you will have a fun trip to Regina ha ha ha. I hope Zach makes out okay.

Pauline - yes, Danica is Chronic - even though there is still a 10% chance of remission in the first year. However, given her history, I am not holding my breath on that one. Her doctors NEVER expected her to take the course that she has. They figured that she would recover nicely, and it would all be behind us - showed them didn't we? I am suprised that Caitlin's doctors opted for the Rituxan before trying the Decadron, or was that your choice?

Danica was diagnosed in June of 09, so it has been over 9 months now. My, time flies when you are having fun!!!

Danica is not sleeping very well. She is up lots during the night. Right now she is sound asleep on the couch, so I hope that I don't wake her while I am getting ready for work.

Her cheeks are flushed, and she is always warm, since starting the Decadron. We are noticing more bruises every day, but that is also a side effect of Decadron. She still have the petechia, but perhaps that is also caused by the Decadron.

She has not really shown signs of a ravenous appetite, which is a relief. She is watching what she eats, and is trying to eat very healthy -- good for her.

I will take a look at her when she comes for an ultrasound, and I may run a CBC on her, but it will probably be in vain. I think I want to do mostly for my curiosity. I am really trying to hold out until Friday to run it. However, if the petechia and bruising are worse, I think that I might.

She is also irritable, but is aware of it, and really tries to keep calm about things. I really have to give her credit for that.

Thanks to all of you for your concern.

Michelle