rituxan?? anyone???????? I need information....

Well, i just returned from my first doctor visit since being discharged from hosp feb 25, with ITP.

My counts were up to 186,000 a week after leaving the hosp on 80 mg of prednisone.

They have steadily dropped...to 108,000 on monday, and today 71.000.....GRRR!

She is going to start me on Rituxan Monday, i guess 4 treatments, one a week. Can anyone tell me their experiences?

I am going next Friday for a CAT scan, and a bone marrow biopsy....
All other counts were normal before prednisone, except the platelets.

I lost my sister in October to Multiple Myeloma, and my father last March to Multiple myeloma, so that scares me, but the hemo said she was 99 percent sure it wasnt anything cancerous......?????????

So here is hoping it is ITP and not a cancer, but now awaiting more tests and results....

Any one that wants to lend to this conversation and Rituxan experiences, Please Share!!!!
Thanks, i love this place!
Denise

Denise,
You should take a look at the old discussion boards, there is a search function, many of us have shared in detail our experiences with Rituxan. I'm sure many will share again here, but there is a wealth of experience documented on the old board.
Erica

thanks Erica, I will see what i can find over there too.

Denise

I just had my first rituxin treatment today. It went well. Won't know if it's working for a couple of weeks though. I was very anxious about this being cancer too. My mother passed away 7 years ago now to lung cancer (she never smoked). I am always asking my hema if this is really cancer and he keeps saying no. But I have to admit it was hard getting Rituxin in the Chemo room. Brought back sad memories. But I got through it! ANd you will too! Good Luck!

Denise, I'm not sure I have all the facts, but it sure sounds like the doctor is rushing into rituxan. Why not wait until you get the results of the BMB, and also see if your count levels out as the pred is reduced some more?

Also, you may want to check to see if your doc is aware of the research that low doses of rituxan seem to have similar results to high doses.

And (hate to bring this up) has your doc discussed the black box warning on rituxan?

Hey Denise... you do seem very worried about this don't you ~ can I just encourage you... my friend.

I've had my bone marrow fail to produce all blood cells and needed to look for transplant several times in the past. And you know, I've come to learn a lot about blood counts: white cells, red cells and all the cells... as you probably know too from your family's history.

I read the other day on this site that in ITP the Doctors purpose is to try and keep our counts as much as above 30 as possible. And even 30 is ok. So maybe just think about today... platelets around 71. (We all know they change regularly) And that count is OK.

Step at a time hey. Tests are horrible. But focusing on one thing at a time is what's helped me. The Ritux info on this site has been really helpful to me too! But every BODY is different. All the best with that. Keep in touch... and don't forget to breathe!

Found this great quote the other day: "Today is the tomorrow we worried about yesterday, and all is well." I need to remember that too.

Take care,
Jules

THANKS JULES. IT IS SCARY, FOR SURE. I LOST MY DAD AND MY SISTER TO BONE CANCER....IN THE PAST YEAR...SO OF COURSE AS MUCH AS I TRY NOT TO WORRY, ...I WORRY! ALTHOUGH ALL OTHER COUNTS SEEM OK EXCEPT THE PLATELETS..THEY ARE DROPPINGGGGGGGGGGGGGGGGGGGGG. SO MORE TESTS I GUESS.....I HAVE BEEN DROPPING SO FAST SHE DOESNT WANT TO RISK THINGS AND IS STARTING ME ON RITUXAN.....

what is the black box warning???????????????

she has raised my prednisone back up from 65mg to 70 mg a day

Here you can find what black box means!!

Xx

You can scroll to the bottom of this webpage for information about the black box warning:

www.drugwatch.com/rituxan/

I've had rituxan, but only a small dose.

And here is some information about using a lower dose for ITP than is used for cancer...something worth considering for a very expensive drug that takes a long time to administer and is not without possible adverse effects:

www.haematologica.org/cgi/reprint/haematol.12206v1.pdf

Thank you!!!!!!!!! Scary to read this stuff, huh????

Denise, have you gotten a second opinion? Again, I know I don't know all the specifics of your situation, but your doc seems a bit trigger happy with the drugs unless there are extenuating circumstances.

I left the hospital two days a go and the Hemo there said that Rituxan was not meant as a way to treat ITP. She said there is not 50 years of research on it yet. Not sure what that means. Hang in there.

my counts in the past two weeks have dropped, from 187,000 on 80 mg of prednisone, to 6 days later at 127,000 to 4 days later 108,000 then 3 days later 71,000. She said it was obvious the prednisone wasnt working anymore...and she is afraid next week i am going to be down in the single digits. So she wants to start me on Rituxan..........i really like this doctor, but i am just so confused, which i guess is normal...but reading about the Rituxan can be scary. I guess reading about any of them can be. I have read alot of success stories about it too, so i guess i need to think positive thoughts!!Q!

Only time will tell if Rituxan is a worthwhile treatment for ITP. Long term side effects are not yet known; it's only been around since 1997. It may be a bit harsh in some cases where ITP is not severe.

The only two treatments that have been around for 50 years are Prednisone and splenectomy. Not sure I'd agree that a treatment has to be around for 50 years in order to use it. Seems very old-fashioned and limited.

Denise,

Let me make sure I understand: your count has never been lower than 35K and you don't have bleeding symptoms...they found the low platelets because you were in the hospital for unrelated symptoms...is that right? And your doc wants to start you on rituxan even though you are currently at 70K? You've never been in the single digits but your doc is worried you'll be there next week and that's why she's starting rituxan? I must be missing something :huh:

Looking back, around Christmas, i had some terrible bruising....really bad, and a bloody nose, etc,...of course at that time, i didnt know i had this, and I attributed it to Blood pressure etc, because i was having terrible headaches, was monitoring my BP which i8 have never had trouble with...and i was having terrible ringing in my ears. I finally got an appt with a doctor, and in Feb went to the doctor. At his office i had a terrible bp 171/100 and just felt terrible......he did an EKG and sent me to the hosp after an abnormal finding.
IT was there that they ran tests, and found the low platelet count. I am thinking because of the symptoms i had back in December...which included a terrible menstrual cycle....that put me in the bed for 4 days.....( I should have gone to the doctor then) but at the age of 52, i just htought...yea, menopause....etc.anyway, looking back, i see a lot of symptoms, now that i know what they are. my platelets were at 35,000
She started me on prednisone, and my counts immediately started up, 45,000, the next day 65,000...then 95,000 the third day and released me.
I went back for just CBS 5 days later, and it was at 186,000, so they reduced my 80 mg prednisone to 75. I went back 6 days later, and it was 127,00 , then after 5 more days it was 108,000, then yesterday it was 71,000....
It is steadily dropping.
She has me set up for rituxan on tuesday morning, and I go to the hosp as an outpatient friday for a bone biopsy and a CAT scan.
She was going to do the bone marrow biopsy in the hosp last month, but when the counts reacted to the steroids, she put it off. Her hope was to wean me off the prednisone, and atleast down to a very small dose. But that isnt what happened.
She wants to rule things out i guess with the bone marrow biopsy and cat scan.
All my other blood counts were in normal range, although now the White blood cell count is a little high, due to the prednisone they say...
Anyone's thoughts? I am just getting too much information too fast and am in overload!
I am confused. I want to trust the doctor, but the more i read, the more confused i get!!!!! Help!

Some people only respond to prednisone at high doses. Im one of those. I only seem to respond at high doses of pred 50mg or higher. Ive done rituxian 3 times in 3 yrs. I didnt get a fast response the first 2 times, (12 weeks the first time and 8 weeks the 2nd time) this time Im not sure I responded at all. My counts are hoving between 20 and 30 right now. Not great numbers but better then 1 or 2. I tend to bleed under 20 so thats when I treat. Your doctor seems quick to treat when your counts arent that low. Perhaps before you start rituxian you should get a 2nd opinion, maybe you can find someone more expiernced with ITP. I know at my hema office im the only pt with ITP--and there are 6 drs there. My hema is expiernced with ITP he worked at a county hospital and saw many more patients then he does now in private pratice. But you should look at the treatments page and discuss the possible treatments with your dr. I know Rituxian was the 4 or 5th treatment I tried. Most insurance companies wont cover rituxian until you have failed 2 other treatments. So that may be another reason the try another treatment first.

Denise, what city are you in? Perhaps there is an ITP specialist you can see for a second opinion. Most hematologists are also oncologists and deal mainly with cancer...not that this is true of your doc, but it's hard to stay up on the latest research for everything, and your doc might just be recommending the drug she knows.

My own personal opinion is that you should ask to delay the rituxan. Your count is not dangerous, and you know that higher doses of pred will boost it, so if it was me I'd slow down. I have had a count as low as 3 and nothing bad happened to me, so if your count drops a bit more you can take action then. I don't believe rituxan should be used before it's necessary--it's not a treatment to keep platelet counts up, it's a treatment to get them up when other things have not worked.

By they way, what did they do for the high BP, headaches, and abnormal EKG? Maybe a treatment for something else is causing a drop in your platelets. Prednisone can't be helping your BP!

Denise:

I know you are confused. Everyone is at first. I did some things that my doctor suggested that I wished later I hadn't done. For example - the bone marrow biopsy. He said do it, I did it. Of course it didn't hurt anything to have it done, but it wasn't necessary. I'm not telling you to cancel yours. If you'll feel safer having it done, then do it. Chances are, you'll get the exact same report that most of us got: marrow is fine, platelet production is fine. However, newer research shows that the bone marrow biopsy does not prove that production is okay, and most people with ITP also have production problems.

I also wish I hadn't started Prednisone for the second time when my counts were 60. My doctor told me to do it, I did it. If he told me that now, I'd definitely insist on counts below 20 for that.

It's important to trust your doctor, especially at first when you don't know how you will respond to things. I can't determine for you what counts will be safe for you. Everyone has to find that out for themselves. It makes sense to start Rituxan before counts are in the single digits because it takes time to work. But - if you never get that low, it may not be necessary at all. Deciding when to treat is tough because you don't want to over-treat, especially if ITP becomes a fixture in your life. Over the years, the treatments begin to cause damage and you wonder if it would have been better to hold off once in a while.

Some doctors are very aggressive and some are too passive. It's important to be sure that you have one in the middle. It's also important to be an active part of the decisions. You have to sort of go with your gut as far as decisions go. If you're not sure about something, there is no harm in waiting a bit until you are sure.

What if you go back for the next CBC and your counts are up?

Sorry if I confused you even more. I'm sure I did.

Whew! This is quite a thread! We all know that I'm really new here too, but I gotta agree with everyone else Denise. It seems kinda quick since your count is over 20. I'm wondering if my rituxan treatment might not be to soon too, but I've been on prednisone for over a month now with no effect at all. Even after getting platelets my count hasn't been over 38 since diagonised and it dropped to 11 two days after my 2nd transfusion. Last time it was checked was 7.
I know your treatment starts next week, but I surely would have a very long discussion with my doc before I started.
We support you what ever your decision!

thank you everyone for all of your great words of encouragement and advise.
I have decided since i cant get in touch with the doctor this weekend, I am going to type her a letter...right now, and fax it to her office. Maybe she will get it over the weekend, maybe not, but it will be there monday morning......Maybe i can go back in Monday and talk to her ....I was so dumbstruck when she told me my counts had dropped again....and i think i just kind of sat there and went thru the motions. I didnt ask things i should have!!! Now i think about all of these things, and it is eating at me.
So i am gonna put them in writing.......and go from there.

Thanks again!!!

Just to confuse you still further........

One of the things that I have discovered about ITP over the last year that my son has had it is that there is no such thing as a pattern. To paraphrase the consultants secretary, the only predictable thing about ITP is its unpredictability. No two people have the exact same condition, and over the course of a year, one person may go through any number of patterns. Over the last year, Dougie has had six months where his count never once went over 20K. Then it suddenly changed and he started this yo yo effect where he used to have a week of 100K+ counts, a week somewhere in the middle and a week or so at around 30K. More recently, that seems to have changed again and he seems to be sitting around 20-40K all the time. And the same applies to bleeding and symptoms. Some people have petechiae at really high counts and some have them much lower. My son only used to get them at 15K or below, but at the moment he has them with counts of 30K.

I guess what I am trying to say here is that your doctor can't possibly know what your pattern is and neither can you because you haven't left the ITP to its own devices long enough to find out. It could be that you bottom out at 30K, or maybe not. If you do bottom out at a safe number for you, then some of the drug treatments seem quite tough on your body for something that isn't strictly necessary. It depends on your symptoms, but I wouldn't personally advocate treatment for my son unless his count was under 10K and even then it would depend on the circumstances. And you need to remember that bruises and petechiae, however scary to look at, won't kill you. Its real bleeding - nosebleeds, GI bleeding, problem periods etc that matter. Doctors in the UK and from what I read on this site in the US also are tending more and more to treat based on symptoms and not counts. A low count is not necessarily a problem in itself.

Whatever you do or don't decide to do, you need to be happy with the decision. If you need more time or information, ask for it. If you want to try something less radical first, then ask for that. You do need to trust your doctor, but also remember that you are in charge, not them.

Good luck, Ali

U make so much sense, Ali. Thank you.

Denise, it's been over 8 years, but I was in a similar situation.

I was at about 100K on 60mgs of pred, and my hema (first hema) said if my count didn't go up as we tapered that I'd be having a splenectomy. I asked when, and he said "in the next several weeks". Even though I pretty much believed him, I said I thought a second opinion would be a good idea before surgery.

I did my homework and found a doctor who was a hematologist, not an oncologist, and went in with my records and told him I wanted to avoid a splenectomy--and he talked me through the other options (one of which was rituxan, but he thought there wasn't enough of a track record for it then).

I still have my spleen. I used WinRho to boost my counts for several years, and then tried a very low dose of rituxan when the research came out on that. It didn't seem to do anything, but 6 months later my platelets rose on their own to over 100K and have been there for about 18 months now.

Now, had I had my spleen out, maybe my ITP would've disappeared and 8 years later I wouldn't be hanging out here still talking about it, but I'm still glad I kept it...some day I might need it. All to say that my first hema might not have been "wrong", but he also wasn't "right" for me.

thanks! I really liked the doctor....in the hospital she was so thorough, not in a hurry, listened to my concerns..( my dad and sister died in the past year to bone/blood cancer ( multiple myeloma) and i was scared to death. She said she was 99.9 percent sure it wasnt anything to do with cancer because all my blood counts were good except the platelets. She started me on the high dose of prednisone, and the counts started coming up, and rapidly...she said that she felt my bone marrow was making the platelets, they were just getting eaten up, and cancelled my bone marrow biopsy that she scheduled. Well now, she has scheduled it again for next Friday.
She took lots of blood in the hosp, ran lots of tests, did a sonogram of the kidney / spleen/ bladder...
i went in originally for high blood pressure and chest pains, which I still havent finished the testing on that, because the cardiologist wanted the blood issue taken care of first, and i go back to him the end of the month. They did an echocardiogram, and a chest xray that all checked out fine.
I am supposed to have a stress test soon.
I am so consumed with this blood disorder...grrr!
I am on bp meds, that i have never been on before. They sent me home with bp meds from the hospital.
This doctor is a hemotologist, oncologist and internal medicene.....
I know i have to be comfortable with what i decide, and right now i am not!
thanks for letting me vent.

Denise, I should probably just keep quiet, but your story really frustrates me. You went to the hospital with symptoms that are causing you pain and are potentially dangerous, and instead got treated for a lower-than-normal but typically safe platelet count. And....now your hematologist is suggesting a pretty drastic treatment that is not without side effect and is very expensive...and the cardiologist is taking a back seat and waiting? I'm glad you're on BP meds, but keep in mind they may be contributing to the fact that your platelets are dropping.

Are you in a large metropolitan area? If so, I'd suggest a second opinion from a hematologist at a teaching hospital. See if you can find someone who has an interest in "benign hematology" or something similar.

Like someone said earlier...what a thread!!!

Denise, my daughter hasn't had ITP as long as some of these other people, but I've read enough to know that Rituxan at this step is way too fast! My daughter went through different treatments before trying Rituxan and that is usually the way to go. The hematologist needs to try more of the first-line treatments because you haven't had ITP very long. That article that PDSA just issues is a huge wealth of information. If my daughter's hematologist wasn't an ITP specialist, I would be printing out a copy for her.

It truly sounds like you are really worried about having multiple myeloma and that is also a realistic concern because of having two close family members die from it. However, the hematologist would have found some abnormal cells when looking at your blood smear. They were really concerned with my daughter's counts when we came in because she had both a very low wbc and low platelets. In fact, the first thing they told us was that it was either leukemia or ITP and the reason they were looking into leukemia was because of the low wbc and some other factors that were off in her blood through her CBC. However, with one look at the blood smear, they knew right away that it was not any kind of cancer and it was just ITP. Caitlin continued to have a low wbc but then over the last two years, it has normalized and the only true thing wrong with her blood is her low platelets. As a parent, we really wanted a better explanation of why things were wrong with her blood, but I've finally realized that "excessive" worrying is worse for my health than anything. I find this website to help me mentally because I find that my daughter is normal because there are thousands of other people out there living with ITP and probably a couple thousand more out there who have ITP and don't even know it. I think the bone marrow biopsy will probably do you some good just to get that even deeper consolation that this probably just is ITP and nothing more. You rarely find people on here who have gone on to find something more after their bone marrow tests.

Hang in there Denise...we have all been where you are at now and things will get better from a mental standpoint even if your platelets take a few more dips in the future.