Rituxan date

Yes, that's on my list of things to discuss with doc on Wed. Maybe he feels the Decadron will be enough of a pre-med.

What a way to spend an Anniversary! Taking pills every six hours. Plus, it's our club's first meeting of the year, so we'll be in the middle of it when I have to take my fourth pill. Steven's hoping to get the day off for my first treatment, not that he'll be able to be with me during infusion; but after.

Well, I had my first Rituxan treatment last Wednesday and today had my first blood test. My count today is...drumroll, please.....155! I haven't been that high in years unless I was prepping for a surgery. Is this normal; to have a count this high after just one treatment?

Congrats on the great count! That sounds very positive.

Lily

Great news, love to see success!!! Did you have any side effects from the treatment?

My daughter just had her first Rituxan treatment and she went from 8k to 68k the first week. The infusion went well she had no issues or side effects. She had a second one a week later but we don't know what her count did yet will find out i a few days. The second went really well too. Were hoping this keeps her in a safe range for awhile.
Good luck to you.
Shauna, mom of Emmy

Nancy, no side effects! Mind you, I was pumped with pre-meds. Got two doses of Benadryl. I hope tomorrow's session goes just as well.

Lili, I hope this is a good sign too!

Shauna, how old is your daughter? I wish her good luck too.

Wow Cindy - I think that's a record! Did you have IVIG or anything recently? What was your count before starting Rituxan?

Could the bump be the decadron?

A-ha....

Funny you girls mentioning the Decadron! I was thinking the same thing! But how do I know? My counts before starting were 42 on Sept.12, started Rituxan on the 15th. The last IVIG I had was in June with a count of 15. July was 37 and Aug. was 33.

Yesterday's count was 178. I'm glad to be "normal" but am kinda afraid of what's going to happen when I stop the Rituxan and Decadron. I'm off for my third treatment in a couple of hours. Treatment itself seems to be going ok. I'm handling the 90 minute infusion better than I thought I would. We go out to coffee with our ham friends on Wednesday nights, and I haven't missed one yet. I will be so glad when I don't have to get up at 2am to take the last Decadron pill before going for the Rituxan!

Thanks for the replies! Will keep you posted.

Well, I'm a little down today. Had my weekly blood test and counts are down. Not much and still within normal range. 112. But I was really expecting them to go up! Oh well, nothing I can do about that.

They will bounce around. Come on girl - you're usually at or under 20! This is spectacular!

Hi all this is Franny,s dad. Franny a great 9 year old girl, soccer player, was diagnosed ITP in july, 2010 with a 5 count. She went for a four day inpatient stay 1st day IVIG all went well count up 16. 2nd day another IVIG count up 30, and bad reaction headaches and abdominal pains, Hemo ordered MRI(turned out negative) and administered Dilatin for pain. 3rd day bone marrow biopsy (turned out negative) 4th day we were released
Fran's medical record showed a count 170 December, 2009. Thus today Fran's Hemo ofically declared her chronic ITP. Hemo wants four treatments of retuxamib one each week for the next three weeks. Today was the first it started with benedryl and about an hour and half into it Fran got reall itchy behind the ears and nap of the neck. Nurse stoped retuxmab then infused smaller ammount of ???anti -itch?? waited 20 mins. then started the retuxmab again all the way till the bag was done total about 6 1/2 hours with no bad reactions!! I think she reacted to a shampoo she has only been using for this past week. I applied cool wet paper towels along her hairline and nap of neck which seemed to cool down her scarlet itchy ears. We are happy to have treatment go so well for the first time with retuxmab. See you next week.

Thank you Sandi, I needed that! I know the 112 is awesome;I was just surprised it went down this week. Today is my last treatment! Hard to believe 4 weeks have gone by.

Softdesk, I was lucky, I didn't have anything like that. I did get warm and flushed tho. I told the nurses, but they didn't seem too concerned, they did take my temperature and it was normal. I have gotten that way the last two weeks too. Good luck to Franny!

Cindy that is a fantastic count! I'm so happy for you! My wish is a long long long remission for you!

Franny's Dad - I hope the same for Franny!

Thanks for your well wishes and good for you

My treatments are now done!!!! Now we play the wait and see what's going to happen game. I go for the next three weeks for blood tests and see the doc on November 2.

Cindy.... It's gonna be alright. And I'm believing your counts are going to keep going up! You gotta believe that too.

cindy,
Franny is done with her fourth treatment 10-26-10 doc said to wait two weeks to test we will test nov 9-10. Truth is she was up to 55 after 1st at 16 on the second, on 22 at the third now we wait till Nov. 9 and see. Franny had no reactions slept through the 5 hour infusions got up feeling pretty good. Good luck in your numbers on the second November.
Aloha Franny and her Dad

Since that little hiccup with the counts going down just before my last treatment, they've gone back up. Oct. 16, 209; last week, 217 and I go for my third test in about an hour. I still feel tired, but that could be my Fibromyalgia. I think my hema dr. will be pleased. Maybe I'll get back on my monthly testing again!

Glad to hear Franny's done with her treatments. I wish her high platelets. Keep us posted. Good luck with her test on the 9th!

That's great! Good for you!

Well, they're up even more. 298! I can't remember when I was ever that high since being diagnosed.

Live it up! And to think you had to wait allllll that time for Rituxan! Not fair.

:woohoo: 298?!!! You go girl! I'm excited for you!

Cindy you have put a big smile on my face!
What a fantastic response - I am so happy for you!!

Thanks, everyone. Yeah, I'm kinda excited about the number. Still nervous when handling sharp knives, tho! :laugh: I'm the kind of person who, when being careful, that's when things happen. hehe.

So, I saw the doc today. He's pleased with my counts since the Rituxan. He's so pleased, I can go back to 5mg Pred every 2 days, for this month. Next month, I get to go to 2.5 every 2 days. I should be off the Pred by the first of January. Yea!!!!! I haven't been off it since I was diagnosed way back in /04. I can't wait! And I get to go back to monthly blood tests.

Congrats Cindy! Just got approved for Rituxan. I hope i have a success story as great as yours

Good luck, Lorie! I wish you success with your Rituxan. When do you start it? Do you have to take Decadron for 24 hours before treatment?

haven't gotten a date yet but i'm scared and excited at the same time. Cautiously optimistic!