"You Have Some Decisions To Make"

I had my labs done today and unfortunately platelets are 6. My primary hematologist is working in a different office today so I saw one of his partners. He looked at my mouth, told me I have a bleed and to stop taking the magic mouthwash (!!!) I didn't ask why. He gave me a prescription for pain meds and I got platelets for the third time.

He said "you have some decisions to make". Basically, it is his theory that my Rituxan treatment is not working. I've only had 2 of the 4 treatments. I'm scheduled for my 3rd tomorrow and I will see my own doctor. The doctor I saw today said he would recommend removing my spleen. I immediately reacted in the negative (I've read from many sources that if it works it is short-lived). He then said perhaps Nplate which I know nothing about yet.

My initial reaction is that he's jumping the gun. I hope my doctor tells me tomorrow that we should at least finish the Rituxan? My research reveals that for some people it takes several weeks for the Rituxan to bring platelet levels up - and for some people it lasts for years!!! I want that result This doctor said "in my experience people who are going to respond would have responded by now" with regard to me.

Any thoughts/advice much appreciated!!

Lin

I'm not a doctor. I teach kindergarten (waaaay different obviously) but I completely agree with you. He is jumping the gun. Tell him to slow the train down. It makes sense to me to at least FINISH what you started....Sometimes it takes Rituxan weeks and weeks to "kick in." He should know this. Meet with YOUR doctor and tell him how you feel! You don't have to do anything that you don't feel comfortable with! Could you "up" the pred in the mean time to get your counts in a safe range? I know this isn't pleasant, but sometimes it is a short term solution. Keep us updated!

Natalie

Hi Natalie,

Thanks for your response and agreement!! I said those exact words "finish what I started" to my mother tonight. As for the steroids - no way. It's been a long haul and determined by my hematologist I was on them "too long". I'm hoping my body is going to adjust to what has been a rapid taper of 80 to 0 in the past three weeks. Today is day 3 steroid free. I was on 60 a day for around 3 months post 8 days hospitalization. I left the hospital with 180 pills, erroneously thinking I was taking them for pancreatitis (they did diagnose ITP but I guess I wasn't listening carefully). It wasn't until those were gone at 6 per day that the surgeon scheduling gall bladder removal clued me in when i brought her a bloody pillow case and a bottle with one steroid left in it. It's kind of a long boring saga. My PCP ordered more steroids, I got through the operation and then to a hematologist.

I really and truly want no part of Prednisone unless it will kill me not to take them. Hopefully my doctor will agree with "us" and I can at least and in fact finish what I started. Thanks for your kind support.

Lin

Lin:

The majority of people here did not respond to Rituxan within a two week period. The published data doesn't even support that. I responded by week 4, and even that is a fast response by most standards. I've seen a small handful respond by week 2, most between 4 and 8 weeks, and a few by 12 weeks.

Yes, he is jumping the gun a bit. Also, platelet transfusions are usually a waste of time. They only last a few hours, if that. It's unusual to use that as a treatment and expect it to actually do anything.

Hang in there. It's early yet.

Hey Lin, Wow it seems your hurry up and wait is turning in to just a plain hurry up! I'm gonna say what everyone else is.....slow down! How could a fill in for your doctor even suggest a thing! As for the Rituxan. I know that even the possible side effects from it can appear as much as 21 days after the first treatment! I believe it could take even weeks after last treatment for it to start working. Seems the doc should know that.
Nplate has been working great for me. I've had 9 shots of it and my count hasn't gone below 125. It was even as high as 377! It's a quick thing. The longest part is waiting for the results of the CBC. I was usually out of there in under an hour.
I'm with you and the Prednisone. But it didn't do a thing for me. It seems to be working for you, so maybe in low doses....I dunno, you gotta make that decision for yourself. Can't wait to hear what's next!

Thanks all. To be clear - since I initially thought the Prednisone was prescribed for pancreatitis - I wasn't even seeing a Hematologist the first couple of months on it! I saw one in the hospital and he indicated "I" would be contacted. At this point I was pretty concerned with my gall stones and of course the pancreatitis. My PCP finally got in touch with the Hematologist and set up an appointment - but like I said - the first couple of months no blood work was being done or anything related to ITP. Of course the steroid use became critical pre-surgery and that's when the ITP saga began.

My levels in May have been all over the map in varying doses of steroid use so I don't really think my Hematologist believes it is "working".

I'm going in tomorrow with the attitude that I will listen to what he has to say and then ask to continue my Rituxan treatment for at least the prescribed 4 weeks. I want to give this treatment 100% of my energy and not worry about what (if anything) is next. I'm really sure my own doctor will agree. The ole "attitude is everything" is his credo. It's really true that everyone ultimately has to make their own way. This is gonna be mine and I feel good with my decision... with the help of all of you.

Lin

Hi I am new to this site & I am lookimg for some support/advice/.....

I have had ITP for about 15 years. After my diagnoses I went into remission for years (even had a child w/ no problems). I have now been fighting this up & down battle for a year and a half!!!!!!! I was hospitialized four times last year & had my spleen removed last July. For the past 4 months, my counts are going up & down, I am on steriods (been on for over a year, need to get off), have had NPlate shots, and rounds of IVIG. Last Monday I was @ 435!!!!!! My prednisone is down to 5 mg & I did not get an NPlate shot.

I go to my DR today & I am already feeling the anxiety & stress that is going to come with my CBC count. I have some petecia & I am sure my counts will be low. I want to be off of the steriods for good & I do not want another stay at the hospital. I saw that someone on this blog is staying steriod free, did you tell your DR no more steriods??
I need to get off them, looking for help & advice. Thank you.....

Also, not sure if anyone is from the Long Island area, I am looking for a 2nd opinion & may switch doctors. i have been with my oncologist for 15years, I feel that I need to find a way to manage this, not deal with up & down counts constantly, it's taking a toll on me.

Thank you again - Jessica

First, I'd suggest that you start a new thread by clicking on the "new thread" link, so your story isn't mixed with the original poster on this thread.

Second, I can't predict counts by petechia. I seldom have it even when I'm low, but when I do it's usually more releated to some activity (lots of walking on cement, etc) rather than my count. While a few will rapidly drop, most of us do a gradual decline over time, so if your counts were 435 last week they probably aren't that bad this week.

Jessica:

If N-Plate is working, there is no real need to be on steroids as well. Most of us either got to a point where we got off of steroids because another treatment was working, or we told our doctors that we wanted to get off and figured something else out.

Using N-Plate, your counts are going to bounce up and down constantly. N-Plate is a maintenance drug and there is no avoiding that. You can try to relax a bit since it does seem to be working and all it takes is another dose to get counts back up. Have you tried Rituxan?

5 mg's is a very low dose and shouldn't cause many side effects. I'm on 10 and have been for a very long time (not for ITP) and don't notice anything much.

Thank you for the feedback, it's appreciated.