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Newly Diagnosed with ITP, Scared,Really low counts 11 years 10 months ago #1661

  • Lorie85
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I'm a female 24 and I got my ITP news on the 1 Jan this year spent new years day in the hospital! Got a platelet transfusion and ended up bleeding out really badly and spent 5 days in intensive care unit. Got high dose steroids and prednisone but the counts don't stay up. I got dex pulse counts still didn't stay up. I've been to 0 platelets and thats frightening. I did four infusions of Cyclophosphamide (cytoxan) but my platelets are still at 3. the frustrating thing is that i'm not bleeding and i feel perfectly fine ( only the occasional blood boil in the mouth thats it). I have even gone back to work ( i lecture at a community college) I feel pressured by my internist and hemo to take out my spleen but i'm not ready. I'm scared there is so much conflicting information, and these drugs are terrible! Advice suggestions anyone? I'm just so frustrated and confused and my counts are scarily low!

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Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 10 months ago #1675

  • Joya
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Hi Lorie,

It seems like you've been a lot the last few months.. I'm very new to ITP so I don't really have any good advice.. I really hope you'll figure out what's the right thing to do for you and hope you'll be doing better soon..

Xx
Joya

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Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 10 months ago #1679

  • 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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Lorie:

Have you tried Rituxan? If not, you still have that option, or, one of the new TPO's such as NPlate or Promacta.

Hang in there.

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Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 10 months ago #1680

  • ddunn
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i am new to itp also. I go to the doctor friday, first visit since diagnosis in the hosp. I am trying to make me a list of questions!!!!
I have been in 3 times for blood, and the counts have been dropping. 185,000 first time, 127,000 second visit, 108,000 last visit which was yesterday. I am on 65 mg of prednisone, down from 80 three wks ago when i was released.
I dont really have any advise, but i am also newly diagnosed, and scared because the darn counts are dropping !!!!!
Any suggestions on questions for the doctor?

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Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 10 months ago #1691

  • mcafiero
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Hi There,

I'm curious as to how they let you back to work with your platelet levels so low.

I'm in the hospital right now. I had 5,000 when I came in. They gave me a transfusion and the next day it was up to 16,000. My hopes were shattered this AM when I found that I am back down to 5,000.

This is an incredibly frustrating condition. All I can say is that I empathize with you.

Heep posted,

Mark

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Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 10 months ago #1692

  • mcafiero
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Hi There,

I'm curious as to how they let you back to work with your platelet levels so low.

I'm in the hospital right now. I had 5,000 when I came in. They gave me a transfusion and the next day it was up to 16,000. My hopes were shattered this AM when I found that I am back down to 5,000.

This is an incredibly frustrating condition. All I can say is that I empathize with you.

Heep posted,

Mark

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Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 10 months ago #1693

  • Joya
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Hi Mark,

I live in Amsterdam, The Netherlands and here they don't admit people to the hospital unless there is a direct danger of bleeding.. When my counts are below 5 I get send home with a new dexamethason treatment and I just go to school and work.. You just have to be carefull.. But as long as you don't put yourself in dangerous situations you'll be fine.. I talked to my hem about admition cus I keep on reading about people being admitted.. He told me in America they are so scared of lawsuites that they don't take any risks.. And admit when ever counts are low.. I'm happy that it's different here.. Otherwise I'd be in the hospital all the time..

Xx
Joya

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Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 10 months ago #1694

  • eklein
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Mark,
Many US doctors do not hospitalize when counts are low and there are no signs of dangerous bleeding. I was working and living my daily life when my counts were 8. None of my doctors suggested hospitalization.

If your only treatment was a platelet infusion it's no surprise that your platelets dropped again. Platelet infusions might give you a few hours so they can remove a bullet or something, but not a sustained remission. Do you have an experienced hemotologist? There are many other treatments available.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 10 months ago #1696

  • mcafiero
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I think I have had ITP all my life, I have always been a bleeder. This sudden flare up is concerning to me.

All of the sudden I have bruises all over the place. I am wondering if they're going to take out my spleen, and then I wonder, OK if that doesn't work, THEN what.

I'd like to hear from people who have had serious ITP for a long time and how were they treated, etc...

Like the original poster here, I am pretty freaked out.

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Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 10 months ago #1704

  • julia
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Hi Lorie and Mark, Glad you found the forum, now you can find the info to help you understand some of this and your not on your own. From what i understand a platelet transfusion is pointless unless your bleeding badly or about to go for an op.
Wow the Cytoxin sounds tough! Pred is bad enough! There is lots of treatments out there and personally id put spleenectomy as last option.
I was admitted with a count of 9k 3 yr ago. Pred stopped working and gave Azathioprine (Imuran) a go basicly because they are daily tablets. It rose my counts from 9K to 365k highest. I have minimal side effects, i found pred a million x worse! Rituxan seems to be working well in the US.
Good luck you will get there!
Take it easy
Julia last count 275k 50mg Azathioprine

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Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 10 months ago #1725

  • 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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Whether or not a person is admitted depends on several things; some doctors look at symptoms, not counts. Some look at the actual count and hospitalize regardless. Some hospitalize when a patient is first diagnosed, but do not hospitalize after that. They are all different. I've never been hospitalized even with counts under 5, but I also was able to take oral Prednisone and get my counts up within a few days. Sometimes, once you find what you respond to, hospitalizing is not necessary.

Platelet transfusions are fruitless and do not work for ITP. They can actually cause more harm than good, so if there is no active bleeding, it's not a good idea.

I know you guys are freaked out; everyone is at first. It takes some time to accept this and learn to live with it. Please also know that remissions are possible so even though ITP can be a life-long disorder, you might get breaks. I've had ITP since 1998 and have now had 5 years of remission. I know I can always relapse, but I'm not worried about it. If it happens, I'll just treat again.

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Re:Newly Diagnosed with ITP, Scared,Really low counts 11 years 10 months ago #1782

  • Lorie85
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Thanks Guys your post have been so encouraging! Sandi I was given an option between the chemo therapy and a spleenectomy because I was told my ITP is "very agressive". I dont respond well to pred, My counts keep dropping even on 80 mgs. The issue I have is that i dont live in the US. I live in a small caribbean island called Antigua pop. 80,000 we don't have a hemo on island I had to fly to the University hospital in Jamaica to see a hemo. Fortunalty the Dr I see here is a rhumatologist (kinda simmilar field, but she seems to plan to treat me like her lupus patients).

I asked about rituxan in Jamaica but the hemo there said it's expensive and if I didnt respond to dex pules i most likely wouldn't respond to it. Dont know how true that is. The cost however is staggering 2700.00 USd per infusion and i need 4. I dont have insurance (working on it through the union now, should have some soon) and so treatment is self financed for now. If I lived in the US i would have definightly given Promacta or NPlate a try. I God willing, would like to go to the US during my summer vacation if i still haven't found a treatment option that works for me by then and see what can be done.

Mark, the hemo in Jamaica says to stay home in bed and treat!It's not safe to go to work! The Rhumatologist at home said i should go out to work if i'm not bleeding. I went out on Monday. I needed to go back as i had not been to work for the year. and I'm happy with the decision at home all i thoght about was how sick i was and if i was going to have an Inter cranial hemmorage with counts this low at least at work i get to think about other stuff, and have a kinda normal life.

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 10 months ago #2117

  • NatalieM
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Hi there! As you are, I am also 24. I was diagnosed last year right before my 23rd birthday. It can be really scary. Trust me, I completely freaked out, thought I was dying and almost needed anxiety medications. Let me guess...you were like me. You were healthy, happy, feeling great and then BAM! You are told that something is wrong with you and you end up in the hospital wondering what the hell happened? I am all too familiar with that. Lucky for you (and me) you can turn to this discussion board for help and healing. These people helped me so much when I was first diagnosed and I am so thankful for finding these life long friends who know what we have been through. In regards to your question, be careful running around with those low counts. I know that you do not want to do a splenectomy (I didn't either) but it would be a good idea to look into other options. I did Rituxan a year ago and I have been in remission ever since. My fingers are still crossed that I can ride this out for a long time. Check into the treatment forum and look at your options. ITP is not the end of the road...just a speed bump. And remember, we are here for you if you ever need a little push! Keep your chin up! If you have any questions about Rituxan, just ask! This is the place for it!

Natalie
*Here's to high platelets!*

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 10 months ago #2129

  • ddunn
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Natalie...this is the treatment my doc has recommended. It scared the heck out of me, but I have gone back and talked to her more about it and feel alot better about the situation.
Please share your experience with me, tell me what to expect, side effects etc.
She said i would have treatment 1x a week for 4 wks.........I would love to hear more from you.....it is just scary reading all the warning signs!

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 10 months ago #2130

  • Lorie85
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Thanks Natalie! The forum had been a real god send because it's nice to know that people can have normal lives with ITP. and tyhe information and support i've recived so far is priceless. Yes Like you i was fine healthy young adult whos biggest worries were that I need a car and what am i going to study in grad school one day and then to be told the next day your really really sick. It's been 11 weeks since diagnosis and I think i'm still in shock. Mostly i'm tired of worrying and tired of all these pills and needles. This disease takes such a toll on me mentally and emotionally. It's so unpredictable, no generalizations can really be made because everyone's experience is different and the terrible roller coaster and disapointment of low numbers every week when i get back my CBC. :( .

I was supposed to have started azathioprine (Imuran) but i have a head cold and have to wait it out. So i'm jest here praying for the best till i can start to treat again.

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 10 months ago #2136

  • ddunn
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I feel your pain. I was diagnosed a month ago.........my counts were up after prednisone, but am still on 70 mg a day.....and counts are spiraling down.....it is so discouraging and u are right, a roller coaster ride!!!!
I will probably be starting rituxan...I am waiting on my 2nd opinion appt...
I went back and had a consultation with my doctor today...and i really do like her ....it is just all scary still to me...and i think i panicked....

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 10 months ago #2213

  • NatalieM
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Awww! I know exactly how you feel. I felt hopeless. It just bothered me how I couldn't control it! I did everything right...eating right, not smoking, not drinking, "paying my dues" so to speak and then I'm screwed over with this pain in the ass disease. Trust me...those feelings will slowly start to go away and believe it or not, your life will return to normal...or some sort of normalcy. When I was hospitalized my numbers started to rise due to Prednisone (which we all love so much here in the forum). That crap made me feel like crap. I couldn't complain though because it was raising my numbers. Well, when the dr. weaned me off of it, there they went again...CRASH, down to 32. I still remember that day, crying, sobbing, thinking I was dying, the whole nine yards. She wanted to do a splenectomy on me during my spring break (what a nice gift for a teacher, right?...surgery during spring break). She decided against it because of my job. Since the spleen is a factor in our immune systems she decided that I kind of needed it seeing as how I wipe noses, etc, etc, and God knows what else at my job. So...she decided on Rituxan. Honestly, I'm not going to lie to you and tell you that this didn't scare me. I actually cried in her office and asked her 3 pages worth of questions. "Is my hair going to fall out?" "Could I die?" "What if it doesn't work..." and a whole range of other stuff! She informed me that "No, your hair isn't going to fall out. This isn't chemo." She called it "bio-therapy...because it is taken from rats and is not all chemicals. So you might want cheese after it." The latter part was obviously a joke, but it made me feel better at the time. The other questions were followed with eye rolls and her normal response to me: "You are a healthy 23 year old girl. You are going to be fine. Research shows that this stuff is working more and more each day for patients with ITP." And so began my journey with Rituxan. Like you I had 4 rounds. One treatment a week. Trust me when I say this...it was NOT bad at all Some people on here have had reactions to the medication, but it turns out fine in the end. Honestly, I can't even remember the treatments because I slept the entire time. They take 5-7 hours or so and I know it sounds super duper scary, but trust me, if I can do it ANYONE can do it. I am the biggest chickenshit you have ever met. The people in this forum probably remember me from my crazy "am I dying" "what's happening to me" "do I have cancer" rant that I posted last year. If I could read that today, I would probably smile and nod my head. I had my Rituxan treatments last year and as of December my count was still up at 278. I go tomorrow to find out what my numbers are now. It has been three months and I am crossing my fingers and praying...but honestly, you know what? I know what to do if my numbers go down. I'll have to do what everyone on here does: realize that I'm not dying, life goes on, treat again, and don't let this pain in the ass disease rule your life. I promise from the bottom of my heart that things will get better. As for Rituxan, well...I obviously LOVE it. I would drink the damn stuff if I knew it would keep working for me. And believe it or not, you start to get use to the needles, the poking, the prodding..but after a while, as you WILL see (trust me) you won't need to worry about it any more. And plus, we're all here for you! :) If you have any specific questions, please ask. I'm here to make you feel better, just like these wonderful people made me feel not too long ago. *Here's to high platelets* ;)
*Here's to high platelets!*
The following user(s) said Thank You: kym

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 10 months ago #2215

  • ddunn
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U are such a sweetheart, and u made me laugh and u made me cry.
Did u ever have a bone marrow biopsy? The big "C" word is what scares me.....I am scheduled for a bone marrow biopsy friday and CANCER scares me.
All my other counts were fine.....just the platelets were low...but the thought of bone marrow...petrifies me.
My dad died of bone cancer ( multiple myeloma) one year ago last week.
My sister died of the SAME cancer October of 2009, she was 55.
They say it isnt hereditary........BUT it scares me!!!!!
The doctor said..NO, it is not multiple myeloma...so i try to feel good about it.
But what is this biopsy gonna tell? GRR.
Thanks for the wonderful post, you made my day.

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 10 months ago #2221

  • NatalieM
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Ok, here's the deal. Don't worry yourself about things you don't know. I've come to learn this. If it consumes your life, then you don't have one. If you think about having the "C word" everyday, well then you might as well have it, since it consumes you. I can say this because I have been there, done that. And you know what? Those hemotologists really know what they are talking about ....if she says it isn't that, then it ISN'T! And you know what else? If they were that concerned they would have sent you to have it done the day you were told you had low counts. Unfortunately for me, I was all screwed up and my day went like this: 1. horrendous 3 hour nosebleed. 2. urgent care to stop said nosebleed. 3. routine blood check at urgent care "just to check it out" since I lost so much blood. 4. told by the dr. that my counts were "extremely too low" and that I was going to be rushed in an ambulance to the hospital. 5. taken and booked a room on the cancer floor 6. given a bone marrow biopsy an hour later.

Yes...as you can imagine I was a little bit of a train wreck! But...low and behold, I was fine...just had ITP. If the dr. were that concerned about you, something would stick out in your bloodwork for them to do it immediately. So, take comfort in that. Also, the cancer you speak of is not hereditary, so why are you stressing so much? When they do the biopsy and rule out everything else (which they will) then you can breathe a sigh of relief and take comfort in the fact that you just have ITP. Never thought you would say that would you? I never thought I would either...but the disease puts things in perspective. You'll be fine. Put on your brave face. I've never had children, but I've hear that the biopsy is a walk in the park compared to that...so, if you have had kids then you can again, breathe a sigh of relief. Good luck! My prayers are with you! You will get through this. I like to think that God wouldn't give me anything that I couldn't handle. I'm sure it's the same for you. My fingers are crossed for you! :)
*Here's to high platelets!*

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 10 months ago #2223

  • ddunn
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Thank you, Natalie. Thank you. I am trying very hard, and you are so logical...and that is what i needed right now.
I have had very little sleep, too much prednisone.....and my emotions are on a rollercoaster...LOl
These boards are fantastic, and i thank you and all the others for taking the time to give me wonderful encouragement.....and i will keep you posted.

Denise

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 10 months ago #2225

  • NatalieM
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Trust me Denise,

It will get better. And you know...I'm not a very logical person, but I've slowly become more logical thanks to this ITP crap. I mean really, if you think about it, it makes sense. Why worry about something that you a. don't even know is true and b. you can't really change either way? I can say this because my hemo almost put me on anxiety meds because this disease RULED my life. I was constantly googling (which you should NEVER do in my opinion), calling the dr. , and slowly driving myself crazy. I finally had my "big breakdown" as I like to call it in her office in which I sobbed and asked her a million bajillion questions, including those about the "c word." Just thinking that I had something wrong with my blood that I couldn't fix really bummed me out. My doctor told me and this is a direct quote: " I have never met anyone who had ITP that developed cancer because of it. They are two totally different and unrelated things. You have an autoimmune disease. It is totally unrelated to cancer." This was coming from a hemotologist/oncologist. So..I took her word for it and calmed down. And the biopsy was not bad, either. They actually do them right in my hemotologist's office. They gave me some medication to calm my nerves beforehand...so ask for that good stuff :) Also, find something that interests you and will take your mind off of this whole mess, scrapbooking? crafts? ...and put that computer to bed! No more googling! You'll make it through this. I hate to say I told you so..... :)

Natalie
*Here's to high platelets!*

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 10 months ago #2227

  • ddunn
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please please please.......i hope you can say I TOLD U SO!!!!!

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 9 months ago #2266

  • Lorie85
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This is so interesting Natalie and Denise. I never thought about the c-word. My mortal fear was that i had Lupus. My mother's sister died from lupus when she was 32 leaving 2 young children, and it really took a toll on the whole family. (Everyone still gets teary 22 years later when they talk about it) The first two weeks after diagnosis waiting on the ANA and SLE tests were awful. Then i also went google crazy and read ITP can be pre Lupus indicator. I had a friend in University who had lupus and she was sick all the time, walked with a cane because the disease had attacked her hip bone and at the time she was 25. I used to take notes in class and then give them too her. Honestly the c word dosent make me so scared, I can cut it out or chemo & radiation it away. How do you get away from your own immune system? you need it to live.

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 9 months ago #2269

  • Melinda
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Lorie85 wrote:

Honestly the c word dosent make me so scared, I can cut it out or chemo & radiation it away.

Wow, that's an interesting statement! My friend who died from cancer in December after having gone through chemo and radiation for almost 2 years would have loved to have cut/chemo'd/radiationed her cancer away. I bet even the wonderful older woman I knew would have liked to have had that happen too - after cutting it out and having chemo and radiation her breast cancer metastasized. And that is only 2 people of many I know who have not been able to cut/chemo/radiation their cancers away. If you ever do get cancer I hope that it can be cut/chemo'd/radiationed out.

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 9 months ago #2276

  • Lorie85
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Ohh dear, My comment may have come off as insensitive Melinda :blush: . especially since cancer takes so many lives and touches so many people. I am also sad that those wonderful people you knew have passed on. But I also know people who have victory over cancer. I have a co-worker who is a 2 time breast cancer survivor and she's such a fighter I truly admire her. A friends wife also had breast cancer and was able to remove the lump and have chemo and has lived cancer free for the last 10 years or so.


Maybe i need to do more research but from my experiences (2 lupus, My aunt and my friend and 1 other friend who has ulcerative colitis) and reading about auto immune diseases there is no "victory"... only remission :(

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 9 months ago #2277

  • ddunn
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Natalie, I want to thank you from the bottom of my heart for making me feel better. I laughed, I cried and I shared your posts with my husband. He looked at me, and said you know what Denise? She is so RIGHT!
I have read your posts i know 5 or 6 times.
Thanks again for taking the time out of your day to make someone feel so much better.
U are a blessing.

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 9 months ago #2281

  • ddunn
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Lorie, I had a great aunt die of Lupus, my dads side of the family, and that scared me too..but the doctor told me the other day she ruled that out when i was in the hosp, which i didnt realize. So i felt better about that. My other concern, and I guess the heaviest on my mind, is my dad and my sister. I have lost both of them in the last year, my dad at 77 last March, and my sister , age 55 in October. They both had a NON hereditary cancer...bone and blood......Multiple Myeloma....
My doctor said she was 99 percent sure I didnt have that...........and Natalie is so right, if she said i dont have it, i dont have it!!so I am trying not to worry...but heck it is scary, and the not knowing is terrible!
Natalie is right, I JUST have ITP ( see natalie, i said it!) and in a couple days she is gonna say to me 'I TOLD YOU SO'.........
THIS IS THE ROLLER COASTER RIDE FROM HELL.
But this board is such a blessing.

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 9 months ago #2282

  • ddunn
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Yes, Cancer is a very very scary thing, and i have lost 2 precious people to cancer. WE have a valid fear of the stuff, because it doesn't care where it strikes. My dad and sister went thru 4 and 5 years of cancer treatments, stem cell transplants, radiation, chemo....they ran out of options.....there was nothing left for them to do.
I don't think Lorie meant anything by her post, i think she was just trying to give some comfort.
The C word is scary....to some of us, others it may not be...depending on our life experiences!!!
The other thing that scares me is Leukemia! and i forgot to ask my doctor about that one.
WE always think the worse, dont we?

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 9 months ago #2284

  • Lorie85
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Denise I'm so sorry to hear of your loss.
Yes, we often think the worse... but as Natalie said All we have is ITP. (thanks for the support Natalie).... We're going to stay positive and keep each other posted!

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Re:Newly Diagnosed with ITP, Scared,Really low cou 11 years 9 months ago #2290

  • 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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Ladies:

Lupus cannot be ruled out. I also had all the standard Lupus tests upon ITP diagnosis - all were negative - and Lupus ended up hitting me 8 years later. It can develop slowly and may take a long time to diagnose. I didn't have any symptoms for a very long time. Well, I guess ITP was the first symptom.

I'm not telling you this to scare you, only to make you aware that it's a possibility. On the bright side, while it's not a picnic, many people with Lupus live long, productive lives.

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