Need to Vent! And. That. Is. All!

Ok...I am DYING laughing at all of these comments!!! The hot tub? That's great! And I am TOTALLY going to tell all my teacher friends about SHIT. That is amazing! So funny! Everything is still going pretty smoothly here for me! I am feeling good, except for a little cold (which my hema put me on augmentin for) She doesn't want me to get sick! I go tomorrow for my first Rituxan infusion! I am ready to get this done! A little nervous, but I had zero side effects last time, so I am praying for zero this time, too and hopefully some good counts from it! My substitute lesson plans were 17 pages long! EEEEEEK!!! WAY more work NOT to be there! CRAZY!!!

The only consolation I have is that I can sleep in until 8:00. I usually get up at 5:00! I mean, I would rather be at school, but when life hands you lemons........make lemonade, right? Staying positive! Thanks for your humor! It made me happy!

Natalie,

Good luck tomorrow! I wish you the best and enjoy your few extra hours of sleep!

Natalie,

Good luck! Got your back!

Jeffrey

Phew....Ok guys. So...I went in this morning for my Rituxan treatment. My platelets were at 140,000. My hema said she didn't want to treat this morning because they were over 100. So, I was sent home. I am torn...happy that I didn't have to do it but knowing that I am delaying the inevitable! It is just so strange! She is tapering me off the prednisone (I am on 40mg) down to 30mg. I am still scheduled for my "first" (should have been my second) treatment next Friday. She said with the taper (and given my history) they will probably fall a bit and we will go ahead with the treatments next Friday. However, she is a little surprised that out of no where my counts started responding. I have been on prednisone for 2 weeks (after that disasterous dex taper). My counts dropped all the way down to 60 and then 3 days later were at 128 and 3 days after that at 140. I also have a cold right now and am on antibiotics. I am just so confused. I explained to her that with my job, it isn't just a "oh I can't go to work tomorrow" type of thing. It takes planning and I have a lot of people (little people) depending on me. This rollercoaster needs to come to a halt at some point. I need some stability in my schedule! So, I am happy that I didn't have to do it, but at the same time wish I could have gotten it started and over with. Any input would be great. Thanks!

Natalie, this is a good thing! Going up on their own to that level is good. Some times you could be on your way to a remission--you just never know.

Good luck to you!

I understand about missing work, I'm in the same boat, very hard when you are a teacher. But, your health comes first, don't forget. Your students will be fine.

That is a good thing your platelets went up. Who knows, you may be able to go for a while without rituxan.

Natalie,

Wouldn't it be so nice if you end up stabilizing on your own it may be that your body just might have had a hiccup and you don't need treatment. Here is to hoping so!!

It could be that your "Tweatheart's just thought so much about you that all that good energy it taking over.

Cindy Ann

Natalie, Ellen's platelets were where yours are several weeks ago, she was scheduled for Rituxan, and the her platelets rose. Her hematologist "instructed" her to start Rituxan a week later. Ellen emailed back something like the following:

"My work is such that I cannot change my plans at the last minute without greatly inconveniencing my patients, my employer, and myself. I am not afraid of letting my platelets drop well below 50k on a temporary basis, and platelets temporarily below 20 do not scare me. Let's hold off rescheduling the Rituxan until I have back-to-back counts below 50k. Respectfully :whistle:, Ellen".

There was no drama whatsoever. Just "okay, we will take you off the Rituxan schedule". Ellen's platelets have been bouncing between 60 and 115 the last 4 weeks, and who know, they might just stay there a long time. Above 50k and even lower, we are really more concerned about the side effects of treatment than the low platelets themselves.

Often hematologists are medically overly aggressive because they don't expect their patients to be comfortable with "wait and see". They are more used to "DO SOMETHING NOW!!!" This is especially true if they work in oncology. Let them know clearly your comfort zone!

Thanks for that insight Rob! I really appreciate it! It's got me thinking! I am scheduled to go in on Tuesday and plan to really talk about this with them. She understands my schedule and is often a very understanding doctor. And I really do think it is exactly what you are saying. I think she may think that I want to "GET THIS OVER WITH LET'S DO THIS NOW!" A part of me does feel like that, but then again, a part of me would like to see where my counts level off without steroids. I think her biggest concern is that I do not have another uncontrollable nosebleed, which hasn't happened in years. But, let me tell you, the one I had was a DOOZY...3 hours long and uncontrollable bleeding and gushing. My counts were under 20 however, and haven't been that low in over 5 years. I think since I am tapering the steroids, it should speak volumes about my count come Tuesday. If they are lower, "good" then I can proceed. If not, I have some thinking and big girl decisions to make. As always, I will turn here for all my friends' advice and make my decisions based on how I feel and my instinct. I am just happy to be "normal" for a little while. I haven't been there for some time now...well, at least been that high without feeling like utter crap (dexamthesone! UGH!). I am going to rest this weekend, stay positive, and "take these lemons and make lemonade!" A little, tiny, minute part is hoping I am rebounding. But, the ITP monster and rational part is still making sure I don't "get my hopes up." Either way, I am smiling, so that is all that matters.

I am happy you can go into this holiday weekend feeling so positive.

Good luck to you Natalie, and enjoy your holiday. Here's to high platelets!

Natalie!
Good for you! Great counts! You are normal! Me, Rob, Jack, Sandi, Julia, Mj, Ania, Sandi, Dru, Cindy Ann, and most others will never be normal, AND our platelets are low too! hahahahahahahahaha

No drama on the appointment! Just go and enjoy this time of normal counts that you have been given! Good for you! If I may suggest, just enjoy everyday, when you have an issue deal with it! If no issues happen enjoy!

To tell you the truth if a doc wanted to treat me for low platelets with a count of 100k or so, I would run, and get a new doctor!

You are doing fine! Enjoy the Labor Day weekend!

Jeffrey

Jeffrey, I agree with you 100%!! Exactly right on.

Hey everyone,
It's me with an update! Well, I went to my hematologist today (I go twice a week these days!). I started the slow taper off of prednisone and am at 30mg and have been for the past 5 days. I dropped down from 40mg. My last appointment was last Friday when they cancelled my Rituxan treatment (my platelets were at 140,000). My hematologist's eyes almost popped out of her head. Well, they were thinking with the taper, my platelets would start to go down a tad. Well, today at 30mg my platelets were at 197,000! WHOA! Where did THAT come from? I am just flabbergasted. I'm tapering the prednisone and they go UP? I must say, I am very happy! But, I am not getting my hopes up, as I know this disease is crazy and nothing is ever "stable." I am still doing a slow taper and by my next appointment (Monday) I will be down to 20mg of prednisone. Given my history (I have been writing down my platelets and prednisone dosage for the past five years), as soon as I get to 20mg, the platelets start to go down. However, I am staying positive and hoping and praying that maybe JUST MAYBE my body is rebounding back into remission on it's own? Can this be possible? I mean the relapse came out of NOWHERE, so can the remission come out of nowhere, too? I have a cold right now (which should have brought down the platelets) and I'm on antibiotics (which also doesn't help) and my steroid dosage has been tapered down (usually causes a slow drop) but my numbers have increased! Oh, I sure do hope I don't get my hopes up too high. They cancelled my "treatment" (it should have been my first Rituxan, since they cancelled the last one) for this Friday, so I am thrilled that I get to go to work! Yay! I love Fun Friday. We have good snacks on Friday (prednisone talking). Maybe I'll make my "tweethearts" cupcakes if I'm feeling frisky....Anyways, any input would be great! Thanks guys.
Natalie

Natalie!

What great news! I am very very happy for you! Keep the faith and smile more than you need to!

Jeffrey

That is exciting news! Keep us updated!

WHOOO HOOOOO!!!! Congrats Natalie - just take the blessings as they come - don't worry so much about if your counts might drop.

It is OK to enjoy the good times!

Cindy Ann

Natalie,

Congratulations! This does happen! So enjoy yourself and try not to dwell on it right now.
Platelets are unpredictable!

That's great, Natalie! Sometimes there is no rhyme or reason to ITP, so you have to just go with the flow.

Great news Natalie! Enjoy

dru wrote: Great news Natalie! Enjoy

Dru!

Any prednisone in your future? I am getting behind here! :blush:

Jeffrey

I hope you are well!

Great news!

Jeffrey - I resemble that statement! lol

Well Jeffrey,
I just tapered from 20mg to 15mg pred and still can barely get off my couch. No manic cleaning for me! I could though send you my dog who is also recovering from knee surgery. She is to take 2 ten minute walks daily.

I am off all roids feeling good and my house is a mess but not in a cleaning mood! Any roiders want to take a stab at it?

I get a good idea and everyone moves in on it!

Hey Dru! When is your birthday???? I'M THE BABY!

Jeffrey

Sorry to disappoint you, Jeffrey, but I am the baby. I'm only 54.

Actually, it's me.

Actually it's me.... 28

We have a lot of young ones on this board! And, I'm one of the seniors!

CindyL wrote: Sorry to disappoint you, Jeffrey, but I am the baby. I'm only 54.

CRAP! (Actually Sandi is, but I am keeping my mouth shut! I do not want a cyber slap down!)