All About Rituximab

[Sangye]

Glad you finished the rtx. Now you just have to wait for it to kick in. You'll be feeling much better soon.

[LisaMarie]

i stilk feel that a mack truck hit me anf my lower back and hips and kegs are killing md hope i feel bettdr tomorrow so i can go go work....been in bed most of weekend...ughhh this zuck but it sill be worth it jn the end right?l

[elephant]

Sorry you feel so yucko!

[Sangye]

Lisa Marie, yes it will be worth it in the end. I totally understand. Rtx infusions kick my butt. Each week is worse and the second round was much worse than the first. I didn't think I was gonna survive the last infusion, I was so incredibly weak. Just hang on-- in 2 weeks you'll turn a corner, maybe sooner. Hugs to you meanwhile!

[LisaMarie]

Lisa Marie, yes it will be worth it in the end. I totally understand. Rtx infusions kick my butt. Each week is worse and the second round was much worse than the first. I didn't think I was gonna survive the last infusion, I was so incredibly weak. Just hang on-- in 2 weeks you'll turn a corner, maybe sooner. Hugs to you meanwhile!

thanks i will try be pstient

[talentx7]

Hi everyone, I was just told Carter will not do his 5th round of Ctx this Friday, they are giving him Rtx instead. I am really nervous about this, but they think he has had enough ctx and in the end the rtx has less damageing results. He started back to school this week, and he is so worried he won't feel well enough to return on Tues. Honestly, so am I. I am very nervous about him reacting to the medicine. Dr. said sometimes it can be severe? Has anyone had a reaction to this med? Dr. also said in 2 weeks he would get another IV of Rtx, then switch to imuran. Is this normal practice?

[Sangye]

The chances of an allergic reaction to rtx are very low. They give prednisone and benadryl before the infusion to minimize the risk even more. They start the infusion very slowly and increase it over the first few hours. This enables them to catch a reaction quickly. Some people have a mild reaction and are able to continue the infusion slowly and/or with more pred or benadryl.

There's no telling how Carter will react. Some people don't notice anything and go right back to their daily life. Others of us feel completely wiped out for days or weeks. It's best to just go into it assuming everything will be fine and that he'll tolerate it without any problems. Focus on the low toxicity of rtx and the great results they're having with it.

[LisaMarie]

I agree with Sangye...think positive and hope for the best....he is only geting 2 doses and they are 2 weeks apart....I recieved 4 doses weekly and start imuran on the third infusion...i am very sensitive to meds and felt like a mack truck hit me ...but i was still able to go to work....this last week has been the worse but I am learning to rest.....if you read other post other WG"S only get a scratchy throat.....so we will hope your son get a scratchy throat at most...cytoxin is a wicked drug with horrid long term side effects.....rituxan is better in the long run....so keep the faith and i will keep your family in my thoughts and prayers......

[Sangye]

Talentx7, I just noticed that you asked if it was normal to get 2 doses 2 weeks apart and then start imuran. There are 2 protocols used with rtx-- 1) weekly infusions for 4 weeks, or 2) 1 every other week for a total of 2. Since he's already been on ctx, it would probably be too much to give him the 4 infusions. That's used for highly active Wegs.

Regarding starting imuran automatically.... Using a milder drug right after rtx treatments seems to be all over the place right now. I was sure Dr Seo would put me back on Cellcept after my second round of rtx infusions, but he said it isn't necessary, and that I should just expect to repeat the rtx in a year. So far so good. This is something I would grill the docs about. What are they basing their imuran plan on? How do they know it's necessary? (I'm not saying it isn't, I just want them to give you the reasons for their decision)

I think of how my JHU docs discuss such things with me. They always quote the research and use evidence-based medicine. They discuss what research has shown to be effective, ineffective or inconclusive. It gives me confidence that they're not just pulling their treatment plans out of the ethers. You deserve that, too.

[Aunnie]

Hi All
I start my Rituximab infusions Sept. 10th. Im receiving 2 infusions ,2 weeks apart. With the infusions I will get Decadron,Benadryl and Tylenol.Im told I should have no major problems,maybe tired the following day.

LisaMarie and Sangye:

I know you guys had a really rough time with Rituximab. Did you have a rough time with Cytoxan??

My Doc said the reason for 2 infusions is because I don't have any Chest,kidneys or Stenosis issues, so only 2 is enough.He said they learned that from the RAVE study.
He said it should 2-3 months to notice improvementis that how it was for you guys?? I really want to go back to work...

I have tickets to see The Boston Pops with Keith Lockhart and also Kenny Loggins for ths SAT. evening but because of Hurricane EARL it is postponed to Sept 10th... go figure so now I can't go but at least I get my money back....
Well have a ice Labor Day week-end and good health to all!!

Aunnie