What else before Splenectomy???

Hi...

My name is Michael & I'm new to this community & also to ITP (so I think).
I'm writing from the hospital since I'm starting my 5th week of hospitalisation.

Everything started with a routine CBC giving a count of 25k, since then I've been in the hospital for a month now and been given all sort of treatment resulting only in mild, short-lived results. The highest result achived was 65k after 3 steroid pulses (1gm in 1hr for 3 consecutive days)later combined with the first dose of Vincristine; this only lasted for a day before droping to 30k and even lower the next day.

My case is considered very difficult for my Drs as I am asymthomatic and present no bleeding or other annomalies in blood. My bone marrow produces the platelets well but they are destroyed at the same rate. I even had a day when my count was 0 and I felt just fine, not even tired. And my spleen is not enlarged or hurts at all. I'm 20 years old right now and the only thing I have are some bruices and petekie.

Now to what I came for... My Hema told me this morning that if I don't respond to the last 2 treatments of Rituximab (Rituxan) She was going to consider Splenectomy (consider being almost sure that's her next step).

My opinion: I don't like the fact that Im having an organ removed for the "probability" of it working for me, even if it does, the remision is not permanent. Before considering Spenectomy... What do I have left???

I've been on the following drugs & treatments allready... Imuran(discontinued), Danazol(currently taking), had 3 secions of IVIG, I am on the 2nd of 4 Rituxan doses, took 2 doses of Vincristine. I am considering telling my hema about Nplate & Promacta but I don't know how to approach her with the topic & I wish to hear from people who had tried those two drugs before or after splenectomy and how did it go for you.

I know there is a lot of knowledge & experience in this community that can help me learn a lot more about what I have. I greatly appreciate any support. Best regards... Mike

Mike:

You've got my head spinning. Are you in the U.S.?

I don't understand why an asymptomatic 20 year old with a count of 25k was put in the hospital in the first place.

You are being pounded with treatments that are not usually used in the first month (specifically, Imuran and Vincristine). Some of those treatments can take time to work...you can't just take them for a short period and expect an impact. Rituxan can take 4 to 12 weeks after the last infusion to make a difference.

How long do they intend to keep you; until you have a normal count? Something seems really wrong in this scenario. Have you had a second opinion?

It sounds as if your doctor may also be "new" to ITP. I've never seen a survey, but I suspect most of us have NEVER been hospitalized because of low platelet count. Doesn't she already know about Promacta and NPlate? (You can search the many past threads and find a lot of reactions to those drugs.)

As someone who has had a splenectomy (which didn't put me into remission), I recommend you get a lot more information before you agree to the procedure. I wish I had. I didn't every try WinRho, for example, which has helped quite a few ITPers--and which is rarely prescribed AFTER splenectomy.

I know this is all confusing to me, the more I learn about the facts the more confusing it gets in terms of my case and how its being managed.

I live in Puerto Rico and hematologist here seem to be well informed about the condition but as allways with ITP it seems each one has their standar procedures and at least mine left splenectomy for "last"

I was put in the hospital after my gastro (because I also had some sort of colitis diagnosed more than a year before) who gave me the routine CBC recomended I should go because anything below 50k could be risky and I also had a cold and was caughing a lot.

I think you're right about being pounded with all of those drugs in just one month and considering it could take some time for them to work I would better consider now the Nplate & Promacta since it can help me get over 50k (wish is what the Doctors say they need to see before they let me go home) untill the rituxan & other drugs kick in... if they do kick in. It's kinda fishy because they want things to work fast so I can go home wish is something I really want to; I have a life to continue and its almost christmas, but still I think we all need patience.

I did heard her mention the two treatments but I think she didn't considered them because I have a normal platelete production in my marrow and giving me those would just increase the count so it could be destroyed by my immune system again. But still it could also increase it to such magnitud that it overwhelms the immune system so the count can go up a bit untill maybe by chance the other treatments kick in. Anything before considering removing my spleen. Ohh and what is WinRho? that is one treatment I havent heard of... I think. Thanks fot the replys!

Since many of us wouldn't treat at all with counts of 50 K, it is hard to believe doctors there would keep you, Mike, in the hospital until your counts rise to that number--unless there is some danger that didn't seem evident in what you have written.

I don't have any personal experience with WinRho (because of my splenectomy), but you can search the treatment section here and the past threads. WinRho is also called Anti-D, I think.

I will check it out, it sounds more familiar as Anti-D but my counts are really low now and although I have no bleeding, I do have bruices, some big dark ones in my arms and I do get some minor ones from the CBC they take every morning. They just say its to risky to let me go with counts under at least 50k, they dont want anything to get worst.

Oh and I forgot to mention that I was set up like a week ago for something called Plasmapheresis where they take your platelets, separete them from plasma and give you new plasma but I was moved to another hospital for that. My hema, the one who gave the order did it because my platelets where extremely low, I even had 0 one time and because she saw something called "fibrinogeno" (dont know the correct translation) go low in a blood test.

the thing is that when I arrive at the other hospital with the order of getting the plasma done, another team of doctors take charge and make some tests. I spend my first night in intensive care because the procedure is done in intensive care and the next day was all questions by many other doctors untill one of them came and said I didnt need the plasma and it would not be done because my "fibrinogenos" where good and plasma is done mostly for TTP cases and not ITP and so I spend two more nights without standing from that bed since its intensive untill the doctors there decide to send me back to my original hospital again wish was a relief because I actually love this hospital (not that I would rather be home) but its a childrens hospital and Im suppostly a child untill 21.

anyway, plasma wasnt done, im back in the hospital but this time in the oncology floor and Rituxan was the next step along with the second dose of Vincristine. Untill now my counts still the same under 50k. Im going to sleep now since its 2am and tomorrow morning Im talking to my hema about my idea with the Nplate and other drugs and about considering leting me off. I will immediatly keep posted about my count of tomorrow and about my doctors reply to my opinion. thanks for the good replys.

Hi Michael, I suspect that the two other drugs your hema talked about are Nplate and Promacta as they stimulate the marrow to make more platelets so you have more than can be destroyed. As long as the count doesn't go too high, not far above 50 is the aim, then all is fine.

The other hospital is right, plasmaphoresis is not done with ITP. Vincristine is also reserved for bleeding cases where nothing else works as it can cause permanent neuropathies so do be careful with that. Imuran by the way takes 3 months to work.

Many of us have had counts below 10 and still just go to work and do our daily stuff. As long as there's no bleeding to speak of then we don't worry.

The newest international guidelines are at bloodjournal.hematologylibrary.org/content/115/2/168.full which may give you some ideas.

As of this morning my count was an estimated 10k, my hema told me she would give me the 3rd Rituxan dose by tomorrow along with the 3rd Vincristine wish Im not very pleased about because I know about the side-effects although I have tolerated it well.

I did managed to talk to her about Nplate and Promacta before actually considering splenectomy and she seemed rather receptive and listened pretty well. She saw that I did my reaserch and told me she had tried a similar treatment in the past resulting in horrible side-effects but were not the new treatments I was telling her. She then asked for the names and said she would read and look into them wish made me feel reliefed considering doctors sometimes don't listen, but she did.

Still going to recieve the Rituxan & Vincristine tomorrow, hope it doesn't destroy whats left of my good health. But I think the idea of them letting me go home with low counts is still pretty far away.

I started reading the article on the guidelines and it's pretty interesting, will keep reading them later when I have time to concentrate without interruption.

I think what's left for now is just waiting...

Mike - you are being given incorrect information. Please read this - it's about bone marrow and platelet stimulation meds:

www.pdsa.org/forum/6-general-itp-discussion/11698-bone-marrow-biopsy-and-production-answers.html

Vincristine rarely works for ITP and I sure wouldn't used it after only a month at the age of 20. I have neuropathy (Lupus related) and I can tell you it's not fun. Some people are very miserable having it....mine hasn't progressed to that point yet.

My suggestion is to keep doing your research and be vocal about your findings. I'm not sure that your doctor is all that familiar with current ITP treatments. Plasmapheresis is not used for ITP - it doesn't work. Decadron might actually be a good option at this point.

Yeah I think you're right. Now it has come to the point I'm actually reaserching more each day since it has just been a month and I don't even know if I have an actual ITP diagnostic written in plain paperwork.

I already had a bone marrow biopsy and everything whent well with platelet production and no bad cells.

The Plasmapheresis that my hema sent me was mostly because of the low "fibrinogenos" wish later returned to normal for no apparent reason, at least it wasn't done.

I have a Vincristine dose tomorrow and Im thinking of telling her to see if she can cancell it because I do fear the neuropahty and Im already recieving the Rituxan. It has been two Vincristine doses now and I feel "slow" on my stomach and some jaw ache. Will ask her about Decadron tomorrow to see what she has to say about it. But what is the course of action for Decadron? What does it actually intent to do?

Decadron or dexamethasone is a steroid designed to work as an immunosuppressant so it stops the antibodies from being made. It's given at very high dose, it's four or five times more potent than prednisolone (Prednisone) and can have wicked side effects but it's usually only given for four days and then stop.

Decadron (dexamethasone) is not much fun, but it seems to work for many of us as a 'quick boost'. I've used it a few times to get platelet count up from less than 5k to a safer 20k zone. Works well for that.

They want your count to be over 50k before they will release you? GET A SECOND OPINION !
Most doctors and hospitals I know of feel 20k is a safe point, unless there are other factors.
The only time I allowed myself to be hospitalized for ITP, they released me when I reached 20k. Normally the 50k level is used in relation to having surgery.

Many of us live just fine on counts from 10k - 50k. The new TPO drugs use 50k as a goal. The dosage is adjusted with 50k as the target count. I've been using Promacta for 2 years and 50k is my 'normal count' (swings between 40k and 55k).

Seriously, it sounds like your doctor has little or no experience with ITP. Don't volunteer to be his lab-rat, ask for someone who has experience. It is your life and your health....

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