Rituxan

Caitlin is still getting her infusion but I'm guessing she will be done in about 30 min or so. She was doing pretty good but then about two hours ago, she started crying (being real quiet, but tears were streamih down her face) because her stomach was hurting real bad. The dr said that wasn't a normal side effect. She developed a low grade fever so they gave her more Tylenol. They will send us home with steroids as well. Caitlin is feeling a little better but her fever hasn't gone away yet. They only had to slow down her infusion once. She still isn't feeling much better so I hope when we get home, she will start to feel better. Count this morning was 10 and she has some huge black bruises on her back and looks like she was beaten.

We re home now. Caitlin has been sleeping most of the time. I think the benedryl really hit her hard this time. Normally it doesn't effect her that much. Her fever is up to 101.5 so I just woke her up to have her take more Tylenol. This is normal, right? At least that's what I'm getting from the Rituxan website.

I got a really sweet email from my boss. I'm out of days but I've signed up for a leave pool where you give up one of your days and then in he event that you need to use them, they are there for us. However, there are rules like you must be out 3 consecutive days in a row for the same thing and a few other rules to qualify. I've taken off on a wednesday & a Friday but let my dad take care of Caitlin when she was out on Thursday. (wasn't aware of that rule or I wld have taken off.). Anyways, my boss is actually encouraging me to take off tomorrow and Friday so that I can qualify. I just don't know if I feel right asking Caitlin's dr to fill out the paperwork when she says Caitlin should feel well enough to return to school tomorrow. I guess I will wait and see how Cait feels in the morning. She just said that I need to take care of Caitlin and not hae to worry whether I would be docked a day.

I'm glad she did ok. I only had a fever from Rituxan one time; in the middle of the night after the fourth infusion. Everyone is different though and that is a known side effect.

I'm glad to hear that your work is so understanding - I'm sure that's a relief!

I am keeping Caitlin home today. She still has a fever, but it is down to 100. Technically, I could have sent her to school with that since it is considered low-grade. But she is still complaining of her stomach hurting and is very dizzy when she gets up (feels like she is going to fall down), but I truly think this is just from laying down so much. I get that way myself when I've been sick and haven't sat up enough. She didn't have a chance to do her make-up work yesterday because she didn't feel well enough so I will let her do this today and hopefully the teachers will let me know today what she can work on at home to stay caught up.

I'm going to have to work from home because I have quite a few deadlines coming up. I could ignore it and take advantage of my day off, but then I know I will pay for it later by being super-stressed when I return. Not worth it!

Sorry Caitlin is reacting to the Rituxan. Hopefully it will work for her. I wish there were a leave pool for school (UNC Charlotte). If I miss class, I'm pretty screwed,lol.

Pauline:

When I had a fever from Rituxan, I was really dizzy too - it was strange. I felt like I was floating instead of walking. My fever wasn't very high either.

That's weird...it doesn't list dizziness as a side effect so I assumed it was just from her laying down so much. Her fever is finally under 100 now and staying around 99.5 and she feels better. Even though she had side effects to the Rituximab, they really weren't that bad. I really was expecting worse and she did much worse with IVIG. Also, the petechaie that she had all over her back and some of the bruising is already going away. Makes me wonder if the Rituxan is already starting to work.

I'd be surprised if Rituxan were working already. Did they give her IV Solumed? That might be helping.

I chalked the dizziness up to the fever, but it was a really weird dizzy that I never had before. I hope she's better tomorrow.

Oh, wouldn't that be sweet!?!

Fast rises--esp. to counts over 100K--usually portend very good things with Rituxan. A fast rise would be one that happens during the four weeks of infusion....

How long was her infusion time? How soon do you get a count? Caitlin always had hers before she even left the infusion room. I am soooo ready to go :woohoo: for you! Ann, Caitlin's (22) Mom

Pauline - how is Caitlin and did you get the rest of her rheumatology labs?

The rheumatologist left a message saying Caitlin didn't have to come back until June since she was already getting treatment and closely followed through hematology. I guess that means everything was fine with her labs but that they will continue to follow her as necessary. I am going to ask the hematologist if we can have a copy of all of her labs. Just not sure when we will see her again. Caitlin finally felt better Saturday morning. Had a 101 fever late last Fri night then I think her fever finally broke overnight. The nurse said she might have had a virus come on at the same time. They are going to keep her infusion rate slow today to see if they can avoid the fever and other sid effects that she had.

I am glad to hear Caitlin is doing all right!

Why not just email or call the hematologist's office and let them know you would like a copy of all her labs and when would be a good time for you to come by and pick them up. No point in waiting until you see the hematologist to ask, especially when you aren't sure when you will see her again.

Hope all goes well for Caitlin today!

Hi Pauline,
Just wondering how Caitlin's infusion went today. Hope it was uneventful and she feels better fast.
Karen
mom to Jordan

Hi, we just got home a little bit ago. Today's infusion was MUCH better than last week's infusion! She had a little bit of trouble breathing and her blood pressure dropped a little so they slowed down her infusion once. No fever today so that was a relief!! The next two weeks should go without any problems at all! Her count went up a little to 18. Not sure if that's anything to be excited about, but they kept saying...at least her count "doubled" so hopefully that continues so that she's in the safe range either next week or the week after.

I plan to email the dr to ask her if I can have a copy of the labs. Rheumatology said they would send me a copy home after two weeks but I haven't received it yet.

Hey, 18 is probably safer that under 10. Do you think her counts are less than they would have been had she not gone on the NPlate? I know that people's counts fall dramatically when they come off of it, and I assume this is because they're used to the stimulus provided by the drug, but do you think that eventually things return to normal?

Nplate is supposed to be out of your system 2 weeks after stopping it, but they monitor you closely for 2 months just to be safe. Caitlin has been off for almost 3 months now. Her counts before going on Nplate were at 13 so they are really right back where they were before she started. We were worried about her having more symptoms at lower counts, but other than petechaie, an occasional bloody nose, and lots of bruising...there really have been no other symptoms.

Interesting. I'm not surprised that it's out of your system so quickly, but I was wondering if perhaps it's like prednisone, where it takes your body a while to recover.

I hope the rituxan works for her.

Lily

I ended up picking Caitlin up at school yesterday. She slept/rested in the nurse's office for almost 2 hours before I got the message and was able to get to her. Her main symptoms were stomach cramping, bad headache, dizziness, and her bones hurt. There is a huge stomach bug going around so I'm not sure if she's catching something or if it's from the Rituximab. Problem is....she's complaining of these symptoms but she looks fine at times so it is hard to know if she wants my sympathy or if she is really hurting. I've always been able to tell when my kids were truly sick by looking in their eyes. Caitlin does look sick but it isn't consistent and I have to keep telling her to get back on the couch or in bed. She just now came in with a semi-fake cough and said her throat hurts! I don't want her becoming a hypochondriac!

I hope Caitlin feels better soon! I have the same issue with Brady - not knowing if he's truly not feeling well or what. Just this week he complained of a headache/ stomachache. I sent him to school but got a call in the afternoon and had to go get him. When he came home he ended up eating a normal lunch, so it didn't really seem like he was sick. I don't know if it's from missing so much school due to treatments, blood tests etc., in the past that they start kind've liking a little time at home? One of Brady's former teachers (who has 3 kids of her own) told me that she sends her kids to school unless they have fevers or are throwing up. But it's not always so cut-and-dry with our kids. And with a stomach bug going around your area (ours too) it's tough to know what to do.

Hope she's recovering!

Beth - mom to Brady (age 13, diagnosed 1/18/02), last WinRho treatment 12/08

Pauline and Beth

Your comments about being REALLY ill made me laugh. When I was a kid, my mum was a primary teacher in a very small school and teachers just never took time off, so if we couldn't go to school it was a real problem to her. I can only remember it happening once or twice. She used to have this rule that if we were ill enough to skip school, then we were clearly too ill to watch TV or do anything else nice. We used to have to stay in bed all day, eat this really horrible blanmange stuff and read for entertainment. It definitely put us off trying to have a morning off to avoid double maths or something. My brother, my sister and I used to joke that we had to be on the verge of being admitted to Intensive Care before mum would let us stay off school!

Anyway, her attitude has stayed with me. I am really reluctant to let the kids have sick days from school myself to the point where I sometimes think I go too far. Dougie had a day off with a cold in November because he had a really high temperature, but I can't remember the last time before that, and my 9 year old Laurence is in the really unusual position of being the only kid in his class who has never had a day off sick. When he had shingles I didn't know what it was (thought it was just a rash) so I carried on sending him into school although he was complaining about this rash hurting. LOL - I am a bad mother!!!

Ali

I've always been really cautious with my boys because of Josiah's immune compromise(his heart conditions made him immune compromised because his 02 sats were so low (68%) that his body could not fight off infection effectively. That and the high dose steroids for MS lately, and now Tim with his steroids and Rituxan. I don't take chances. I believe if someone is sick they should stay home. I actually get offended if someone is coughing (obviously sick) or compliaining of sore throat, etc at school (my school), runny nose, etc. Or when runny nosed kids come to public places like school or church...I really think sick people should stay home so others don't get sick. Its from years of my son being hospitalized by catching a cold and then getting pneumonia from it. I used to have a sign on my door listing symptoms and saying, "if you have any of these symptoms, don't bother to knock. Go Home!" lol. Call it PTSS, I don't know.

I completely understand what your saying there and taking time off school is fairly easy, but in a work position, i find it hard to take days off every single time i am sick as i only get 15 paid sick days a year, and although my current team manager and centre manager are very supportive of my situation, i still don't like to abuse their kindness by taking too many days off, especially if it is just because my platelets are low.

My job doesn't require me to do a lot of pyhsical things, i sit at a desk all day. I'm sorry but i go to work with a sore throat or a little cough all the time, Sometimes it is just not feasable to stay home. I just make a point of not being too close to people and to wash my hands if i cough or sneeze. If i don't seem to be getting better or am getting worse, of course i will then go to the doctor, but it can take a few days to even get into see the Doctor. My work also gives free flu shots every year as well cause we are in an air-conditoned building with over 200 people in the building.

15 sick days is a lot! I only get 7 and never take them anyway. Can't....there isn't anyone to take over for me and my job has to get done. Deadlines.

But oh! How many times I've gone running out of there because my kids were sick at school and I had to pick them up. When they got old enough, I'd take them home and fly back to work.

For me 15 sick days out of 365 is not a lot, i have a lot of other medical issues to deal with other then just ITP, so for me it is not a lot, for other people it might be heaps, just depends on what your situation is.

I meant it's a lot for the average person. I don't know anyone who has that many sick days a year. Most people I know don't have any. I thought I was lucky with 7.

I think maybe in the next year or two, I will be able to pick Caitlin up from school and let her stay home alone. I tried it for a half day earlier this year when we thought maybe she had the H1N1 virus, but was not running a fever. She ended up scaring me half to death because she said she was having trouble breathing when she sent me a text. She tends to be somewhat dramatic so it's hard to tell when something is really serious or not unless I can actually see it through her having a fever or if she has symptoms (her eyes, overall appearance).

Donna...I can understand why you would feel that way, but unfortunately...the majority don't follow that so I don't blame you for homeschooling. I will make Caitlin go to school as long as she isn't running a fever. That's just the way it has to be so that she doesn't fall too far behind in school. I had a student throwing up the other day and I was about to send her to the nurse and she said her mom would ground her if the school called her to have her pick her daughter up. So I allowed her to lay down in a room connecting to my office that really doesn't have many students going through it. She said her mom can't afford to take any days off work and she won't allow her to stay home alone, so she is at a disadvantage. (Single mom trying to raise 3 kids on her income.)

I consider myself really lucky because we do get 10 sick/personal days and then we also have our normal holidays & summer break. We are allowed to carry over 5 of those days and if we never use them, they are paid out to us after we retire, which is really nice. I have always had to use my days for the girls and rarely ever take off for myself (maybe 1 day, 2 if I'm really sick).

Now, back to my Rituxan topic (lol)...did any of your children (or you) get any really dark bruises after Rituxan? Caitlin keeps getting more and more bruising and they are dark black bruises so they really "stand out". I'm actually making her keep her jacket on all the time just so I don't have to deal with dirty stares from people that don't know us.

Crazy how different things are for everyone, and how hard/easy it can be to get time off. Work is really great with me - no problem getting time off for Danica. I can't use sick time though (I have about 800 hours). We get 5 "family Leave" days per year, and I usually save up overtime and bank some of my call backs (either 3 or 4 hours per callback, so it can add up quickly). I don't work full time - so if Danica needs to go to the city on a certain day, I can sometimes switch it so that I work on a day off, and take the day off for her that I was supposed to work.

We have livestock as well, so my days off are pretty much spent on the farm. I just finished my winter lambing (only 7 ewes). The other 100 will be in May. I usually take the entire month of May off. Calving has started, and there are about 200 cows to calve.

Pauline, i sure hope that Caitlin starts to feel better. Poor girl, she is so active, and can't do stuff.

Michelle - mom to Danica

Just got home from Caitlin's 3rd infusion. She did not feel good at all today and really hates the Benedryl. She thinks that is what makes her feel worse than the Rituxan itself, but of course...it's hard to tell when there's other meds. She is still complaining alot about her stomach hurting. The nurse told us to try to giving her Benedryl tonight before she goes to sleep to see if that helps for tomorrow since she has been sick the last two Thursdays after the infusion. She also said we could give her Tums so I might try that. I think if it wasn't for her stomach hurting, these infusions would be going very smoothly! Caitlin complained alot about her stomach hurting when she was on Nplate, IVIG, and espeically when she was on Prednisone so I really think she has a sensitive stomach when it comes to meds.

Not so great news...count went down to 13. The nurse was concerned so she called the hematologist and she said to give it at least 2 weeks after the last infusion to work and that she probably needs the full course before we see any results. I hate this waiting game, but I am glad next week is the last week of her infusion, AND Spring Break for me and the girls!

Week 4 from first infusion is when a bunch of us, myself included, see results - good luck! Erica

Hi guys. Very interested in hearing you talk about Rituxan (or called Rituximab in Australia). I am participating in a clinical trial here... and Rituximab isn't freely available as a treatment. They are offering for me to trial it twice - the first one given 2 weeks ago. And if counts don't improve in a few weeks they will give it to me once again. ONCE only. But you talk about receiving it regularly...?

My platelets have been steady around 20-25. And the only other option if it doesn't work is removing my spleen. So hope it works then!

Jules