37 and counting

So last platelete count was 37 since than i've gain 2 bruises and last night found a few spots. I'm now counting the days till i'm covered in spots and sitting at zero.


Anyone want to play a little game of wager?? First off if you don't know me when I drop I don't stop! So it is just a matter of time before I hit zero and have to treat! I will not treat will the spots and bruising are so bad they effect my ability to do daily life!

I figure 37 this last week I ought to be zero within the next 2 weeks!

I don't wish to sound rude or naive Winnifred, but why do you wait until you hit zero before you commence treatment?
Cheers,
Jac

Look Here Ms. Winnifred!

You take care of yourself! Keep an eye on things, you know the drill. Don't get yourself run down.

Jeffrey

I wait till I hit zero because as much as I get tired before that having bruising and spots. I treat my ITP by my symptoms not by the number. I wait till the symptoms are interfering with my daily life. Basically wait till i've been bleeding enough I start to get weak! I do this for several reason:

1. ITP or low platelets - no matter the number the platelets are supposed to be low that is why the diagnosis. Just because the number is low doesn't mean I can't live, work, and play!

2. With low platelets you can expect to bruise - So since I know my numbers are low I expect to have bruising. Especially if I bang myself.

3. My history has shown that I can do fairly well with the lower numbers. I once spent a months with numbers below 20.

4. Like my mother I react to long term use of medications or frequent use of the same drug - the more often I use it the worse the side effect becomes.

5. I have a fear of needles - enough said!

6. I am non-compliant - (doctors words) I am refusing to be "cured" by having my spleen removed.

I will give you an example what happens to me on medication. Antibiotics: majority state a common side effect nausea take with food. 1st time I take it no side effects. 2nd time some nausea near the end of treatment. 3rd nausea on and off throughout treatment. 4th time take the drug nauseated all the time. 5th time not only nauseated but start vomiting.
I now can not take any antibiotic without high doses of gravol taken before and after.

I understand your reasoning, but recently you ended up in the hospital and had a bad time with it there. You also have a history of an internal bleed. Wouldn't it make sense to have winro again when you got to 10 or 15 rather than 0? Take care!

I actually have a history of at least 2 internal bleeds. That was when I was doing IVIG and Winrho every few weeks to try and keep my counts up. Because Pred made me go insane and I didn't react very well to chemo. Only two options for me were IVIG and Winrho and spleen removal. Anything else out there doctor said no too.

Than after spending an entire weekend in and out of a hospital receiving IVIG I would end up right back there 24hrs later with what I called a body migraine and throwing up. That is when I started refusing that drug.

Than I started having reactions to Winrho/ Rhogam. Tried switching the brands to see if it made a difference but no go. So I avoided treatment found out that I could walk around for long periods of time with single digit counts and suffered bruising and spots. So that is when I started pushing the time frame and I ended up with a few zero counts.

The other problem is you have to be willing to get your counts checked regularly to catch me at those numbers. I won't I have one good vein and I'm not ever getting a port! My recent end up in emergency was because I came out of remission and had not kept up with the doctor all those years!

Winnifred wrote: 6. I am non-compliant - (doctors words) I am refusing to be "cured" by having my spleen removed.

Are you using the same doctor as RHofm50129?
She said her doctor "...says his thinking about this has evolved over the years. He thinks, I believe, that it is better for a person to remove their spleen and make them a non-ITP patient"

What is it with some of these doctors thinking a splenectomy is a cure - if it was we all could have one and close down this discussion group!

Because he is my old doctor thought he was a hematologist but turns out he is oncologist. In October I see the real hematologist.

I'm current researching ways for me to get Rituxan again and get it paid for. Found something that says if you had it in a study and it worked you can get it again. It is a paper that the doctor has to fill out.

To be sure he does this i'm doing research and getting info like the studies that say Splenectomy more effective if your under 40. The one that says your at a higher risk for stroke and heart attacks long term after the spleen is removed. (family history when mom died stroke and heart attack, her mom stroke her dad heart attack) Risk for sepsis and hospital acquired infections (after all I am a so called nurse).

I see the new one in October I will need treatment before than but that is ok. By time I see him I will be so loaded he will have to help me. My only concern is that each doctor has a limit of patients they can refer to this program!

After going to the conference this weekend and listening to patient stories, I was very scared! There are so many doctors out there than know so little about ITP. I guess the best thing we can do is keep advocating. I am going to bring my local hematologist( my itp specialist is 4 hours away so he consults and I see him every few months) a pdsa packet tomorrow. He might not read it, but maybe he will and learn something! That's all I can do.


I am definitely going to remove my spleen.... Ready to be ITP free like Roberta's doctor said....if it were only that easy.

I guess the IVIG is hard on veins? I get CBCs often, and though I do have quite a bit of scar tissue in the phlebotomists' favorite vein, even that still seems usable, and my others are accessible to professionals who know how to draw blood. I'm trying to say that just getting tested shouldn't have to ruin your veins.

Winnifred wrote: Because he is my old doctor thought he was a hematologist but turns out he is oncologist. In October I see the real hematologist.

That's all I've ever had, a hematologist/oncologist. Maybe the one in Hong Kong was just a hematologist though, she wasn't very bright though about ITP - not sure if my Tokyo doctor was just a hematologist or a hematologist/oncologist. I have been very happy with all of them except for the Hong Kong one.

The last few days I have been researching ways to get Rituxan free. Periodically making posts on my facebook about my research and how ITP is on the rare disease list. Made the mistake of using the word remission and right away a friend PM'd me "what kind of Cancer do you have?"


I have been trying to figure out how can I be an advocate to prevent someone else from going things I've gone through. I want people to know about ITP because I'm tired of explaining it. I'm tired of saying no I do not have cancer I have ITP. I want doctors to know about it because I'm tired hearing I could die in one breath and in the other at least you don't have cancer. I want doctors to know about ITP so they will listen to their patients and that will make getting treatments a bit easier.


karenr I am hoping my 6 year remission helped heal my veins but that said before remission when my ITP was active specially in the beginning I sometimes got blood draws twice a week, my doctor wanted them weekly. We really should try and find 2 good veins to use and alternate. I do not know about IVIG but I know when I did chemo they alternated my veins because of the damage it can do. Before I did the Rituximab study and went into remission I was starting to have trouble with my one good vein that they took blood from. The others didn't work so my doctor said no big deal we can always put a port in if that vein stops working.

Having a port opens up a hole new can of worms. they have to be flushed most often you end having to have heparin injected to keep it flowing so clots don't start. Than you also have to be extra careful when working and doing stuff.

Winnifred,

The chemo you speak of, was that the Rutuxan?

Jeffrey

Julia,

My veins are bad too. When I was getting rituxan the nurses wanted me to have a port because I was so hard to draw but my hems said no, for the reasons you said. I hope you are able to find a way to have rituxan. You have been through some frustrating times.

My doc is a hem/onc and is in a practice with 5 others. They all see both cancer and hem patients. Mine always listens to me and she will consider my opinion. She keeps up on research and has several patients on nplate and promacta. I'm fortunate to have her, it has made everything a bit easier to manage.

The chemo I did was cyclophosphamide. I worked for a bit almost 6 months. Rituxan I did through a study and it got me 6years.