Rituxan 7 weeks later

I posted this question in the wrong section, so I am starting again. It is 7 weeks since my last rituxan treatment and my platelets have been fluctuating between 120,000 to 150,000. I wish they were higher. Is there any correlation between lower numbers and how long the treatment lasts?

I have not seen anything published on this, but I have read of anecdotal evidence for it. On the other hand, my wife had a weak partial response in August 2014 and remains in partial remission treatment-free with platelets in the 50s to 60s.

120000-150000 sounds like a great response. Not sure why you want them higher.

I agree with Emily. That is a good result. The aim of ITP treatments is to have a count above 50k.

Agree here too. No reason to have counts any higher. ITP can also be a thrombotic disorder for some people, so higher is not always better.

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

Joanne:

Talk to us. Okay?

Thanks! I am just so uptight about all of this. Trying to stay positive. Platelets are the highest they have been since September.
I am hoping this will put me into a long remission like some of you have.
Sandi, how long between treatments can you have another rituxan? I don't like the thought of doing another one too soon?

Rituxan lasts, on average, a year. Most do not have Rituxan before that year is up mainly because if it doesn't last a year, they don't consider it enough of a success to use it again. If it does last a year, some will do another round.

I know you are nervous about counts, but the toxicity of treatments should be considered. Many would agree that it is better to use the lowest possible doses and the least amount of drugs possible to manage ITP. ITP is rarely fatal even at low counts and it's okay to maintain counts around 30k or higher. Counts do not have to be normal. You've had a good response and this is the time to try to relax and enjoy a normal life.

After my first round of Rituxan, my counts stayed above treatment level for 13 months, then I treated again. I had a bad reaction to Rituxan though and could not use it again. I ended up in remission anyway at that point and have not had to treat since (2005).

Take each count as it comes and try not to worry in between. ITP patients who are monitored and respond to treatment rarely ever have complication from ITP itself.

Thanks Sandi. So there is hope that I can achieve a long term remission even though my numbers aren't considered "normal". I am trying to hold on to the hope here.

Your numbers are considered to be normal. ITP is defined as counts consistently under 100k. The reference ranges show 140k to 150k as normal low, but that is just an average.

Some people are perfectly happy with a partial remission, which is counts above 30k for a period of time. Like Rob's wife. Her counts are not normal, but she's fine with any sustained count that lasts. The goal isn't always to keep high or 'normal' counts, it's to keep counts high enough to not have to treat (above 30k or without symptoms).

Hi Rob
When you say weak response, do you mean her numbers were below 100 in the first few weeks after treatment?

He means that his wife's counts have stayed in the 50k to 60k range since treatment. That is a partial response. Rob can give more details.

Wanted to follow up and ask a few questions. I am about 10 weeks since my last rituxan treatment. Yesterday my count was 158,000. Two weeks ago I saw another hematologist and my count was 217,000. Could different Drs have better or different machines? Just surprised by the difference.
Anyone else out there have similar results with rituxan? How long did your remission last?

My remission has lasted since 2008. If I get sick like when I had pneumonia or take antibiotics my counts will dip but go back up to normal. You should have a good long remission since you are having normal counts.
Erica

Joann:

Counts fluctuate. It's perfectly normal. It's rare to get the same reading twice, even if they are taken an hour apart. There is constant production and destruction, so counts will bounce around a lot.

My first Rituxan remission lasted 4.5 years. My second, ( I treated again after I crashed) lasted 3.5 years. Last time my numbers went down, I did the "3 day fast resets the immune system" test.

news.usc.edu/63669/fasting-triggers-stem-cell-regeneration-of-damaged-old-immune-system/

www.medicalnewstoday.com/articles/277860.php

I fasted 3 days a month for 6 months. Surprisingly, it was not hard for me to fast 3 days. Only the 3rd day I felt a little jittery. Results: The first day my bleeding gums stopped. The next month my bruises disappeared. I have not had any symptoms since. But I am very careful with what I eat. Yeah, you're right I didn't go to get my counts done. So, it's not scientific. I have a hemo appointment sometime this month after not seeing him for a year, and I will find out what my counts are.

Good luck!

Wow, what a story! I'm planning to start a fast on Monday. You did 3 whole days? What did you drink?

Yes! I drank water. Not everyone can do it so easily. Dr. Longe who did the original research told one person who emailed him (he doesn't accept emails anymore) that you can have 100 calories a day. It really helped to feel satisfied. And food tastes fantastic! You'd be surprised how much cabbage soup you can have with 100 calories. (Cabbage, potato, carrot.)

Not everyone can fast. Here is a good reference page for that. In fact this website is very helpful with different types of fasts etc.

www.allaboutfasting.com/who-can-fast.html

Thanks!