CindyL question about Rituxan

Read in a post in the General ITP section where you said your hemo was able to get you Rituxan. How did he do it?


At the doctors appointment my old doctor preceded to tell me that my platelet drop was my fault because I didn't have my spleen out. Started quoting again the success rate was 80% and he wouldn't be a good doctor if he didn't remind me that I should get my spleen removed. I don't want it removed unless I absolutely have to. Winrho works the best and the fastest at bringing my counts up and I was under the impression you can't have Winrho when you don't have your spleen.


That said once he realized how long it has been since I did the Rituximab study and haven't had symptoms. He now wants to contact the study doctor to see if there is a way he can get Rituximab again for me. Part of me wonders if I offered to pay for the drug would they give it too me!

So if you have any information that may help I would appreciate it.

Julia - I don't have your answer but I HAD to say something. Your doctor just made me MAD. Really mad! Your fault? I don't think so!

Your fault - your fault? Oh my word!!!!!!!!!!! Seriously? Are you staying with this doctor?

That is awful your doc said it was your fault! You are right you can't take winrho without a spleen. So then you would lose the most reliable treatment if the splenectomy failed.

Julia,

My ITP is my fault too! I breathed and lived long enough to get it. I am sorry but that doctor is a #$@!%^&&**(*())(*&^$Y^&%%#@! Just sayin.... You, you are perfect! :)And of course so am I!

Jeffrey

Julia,

Hang in there! That is upsetting that a doctor told you that. From what i have seen on here and my personal experience, some docs think that is the answer for everything. that means they are not up on research unfortunately. I want to know why he doesn't have his spleen since its so easy and comes without risks. I did Rituxin in January. It did not work for me but my insurance had no problem covering it for me, so I really think if you fight with the insurance company they would take care of it, especially since it was successful in the past.

Remember ITP is not your fault or mine or anyone on here. In fact when my doc first met me he said wow you are tiny, a non-smoker and drinker, exercise, and are 27. Nothing you could have done could have stopped this.

My dr won't let me try WinRho since he doesn't feel comfortable with the black box warning on it. He finally agreed to Promacta. I have been through 5 rounds of Rituxan in the last 3 years, the last round didn't work at all for me. Rituxan is very expensive. The hospital charges my insurance about $19,000 each time (and the normally protocol is 4 weekly treatments). So, that's almost 100k!!! That's not pocket change...

Hey Julia, sorry I didn't see this sooner! I was at my parents' place with my mom.

I'm not really sure how my dr. got approval for the Rituxan. He got it for 3 of us that I know of. One girl I know was going to go to TO. for it and pay for it herself, but I'm pretty sure she got it here. I don't think it worked for her and I'm not sure about the guy.

The doctor uses it on his Cancer patients so maybe that's how he got it approved. I don't think it was very long between the time he said he was going after approval and he got it. I don't see him anymore, he "released" me. Now I'm just under my FD's care.

Oh, and ITP is YOUR fault? I think not! Time for a new doctor!

Sandi I'm used to people saying things are my fault.

You have to understand he's one of many doctors who were told the only cure for ITP is a splenectomy. So when a patient refuses the cure to their illness. Than of course it would be there fault!


That said I am so sick and tired of people telling me it is my fault! I figured it was useless trying to explain to him that he was wrong so when he quoted me 80% success rate in having the surgery. I calmly stated the studies I've read show the success rate as 60% and that rate has been known to drop over time.

My old doctor wasn't a hematologist just an oncologist and they no longer do hemo patients only cancer patients because we have such a high rate of it around here.

They did bring a hematologist into the office so I have an appointment to see him in October. Until than I am officially a patient of that office. So if my counts drop again and I need treatment I won't need to go to emergency. It can be booked in the day treatment clinic.

While I wait my old doctor is going to try and get the study doctor to see if he can get me Rituxan again because it worked so well for me.

Jeffrey have you been listening to Pink again?? hehe by the way I love her son perfect!

Julia!

You surprised me! I love Pink! LOL and I know what you are talking about!

Jeffrey (but I am ya know!) hehehehehe

Ok Julia, watching Dark Shadows now! You seen it?

Haven't seen or heard of Dark Shadows will watch the trailer. Ok just did while posting this and as soon as possible I will be watching the movie if not owning it. I love Johnny Depp he sure knows how to play a character!

My Hematologist has been on that for kick years but I just keep refusing. Rituxan worked great on my ITP. So it's is NOT your fault and the decisions regarding treatment or not to treat is yours.

Julia,

It is a pretty good movie. You gotta watch and listen close! Typical Johnny Depp. Did you know a lot people mistake me for him??? :laugh:

Jeffrey

Jeffrey have you been taking Pred? Cause I hear it can dilusions lol

Julia!

I am crushed..... Ok, I look a little more like Brad Pitt.... :sick: What is your favorite Johnny Depp movie? Mine is 9th Gate. Yup! I am a touch dark! LOL

Jeffrey

Ok do you remember this movie? Benny and Joon I truely like most of all Johnny Depp's movies except Sweeny Todd (found it stupid).

Benny and Joon could watch that over and over!

Yup - Benny and Joon! Love that movie! "It's not my tree" was the best line!

Sorry to bust in on this conversation.....but my favorites are What's Eating Gilbert Grape ( i also thought leo was spectacular in it!)Benny and Joon and of course Edward Scissorhands( so creepy yet so sweet)! Sorry just needed a non itp/ non work moment for a minute!

Vdeutsch85 we all need those moments!


Burst in anytime! Don't know about What's eating Gilbert Grape but loved Edward Sissorhands.

No other 9th Gate fans?????

No other 9th Gate fans?????

Too be honest, while I liked the original '21 Jump Street' series, most of the Depp flicks haven't done much for me.
I pretty much lost all interest in Depp after he sold his soul to Disney (arrrrghh matey....show me the doubloons).
I did like Keith Richards as his dad though.
However, I must admit that he did a great job as a comedic Barnabas Collins in the Dark Shadows flick.
.

You def need to see it! Leonardo Dicaprio plays a young man with a severe mental disability. It was when he was very young. It was his break out performance. Johnny Depp plays his older brother who is trying to find a life for himself while still having to help and support his family.

I loved Gilbert Grape. Very good movie.

Ya'all are killing me! I thought sure there would be a "9th Gate" fan on here!!!

I don't even know what 9th Gate is! I don't watch TV a lot.

It is a kind of dark side movie. I don't know if you would like it or not. I did but I am not quite on center!

I'm a little odd too. I love Waking Dead and Breaking Bad.

ok watch the first one the Gilbert movie is next. Couldn't find 9th gate but will keep looking.

I watch true girlie movies (steel magnolia's, stepmom) than I watch my type of girlie movies (die hard all of them) Bruce Willis with killing and blood every girls dream! Than I have my scary movies (Rose red, haunting in conneticut(sp) those types of movies).

Describe 9th gate to me maybe I know it and just don't remember the name!

I have watch the 9th Gate several times - enjoyed it each and every time. I love the little details!

"A rare book dealer, while seeking out the last two copies of a demon text, gets drawn into a conspiracy with supernatural overtones."

Cindy Ann