Waldenstrom's: Should I take the new medication (rituximab)?

Good news. Everything finally approved . First session Dec 12 5-7 hours.Reality hit tonight.

good luck zeedee1, I have had about 20 infusions of rituxan now (latest was yesterday) and all went very well except the first one. I had chest pain and confusion, but they put something in my IV and I was fine. So, if you notice something not right - SPEAK UP, they are there for you.

Good morning, @zeedee1. Well, finally, some good news for you! Now you can go ahead with those Rituxan infusions.

I know that first session looks intimidatingly long but may not take the full day. The extra time is built into your appointment because the drip rate needs to be slow for the first appointment. From my experience, the subsequent infusions were finished much faster. I think I mentioned in one of my earlier replies, that it’s fairly common for a mild reaction with the first infusion.
Even though I was forewarned that there may be a reaction, I had no idea what that would feel like. For me, it was an itchiness in my throat that came on very slowly. It started on one side and felt like something was caught under my tongue…like a piece of food. (I hadn’t eaten) Then the sensation migrated to the other side, at which point it dawned on me that this was a reaction. I touched the call button and my nurse came right in. I told her what was happening and it was handled quickly with the addition of Benadryl and a steroid injection into the IV line. The reaction stopped immediately. Then the drip rate was slowed even more and I never had any more issues or side effects. You may not have any reaction but I just wanted to let you know that it is common and that you don’t have to be apprehensive about this appointment. ☺️

Anyway, prepare for that long day by bringing a lunch and snacks, bottled water and an activity bag. There’s usually internet connections so brought my iPad to watch movies, or read. Sometimes I’d bring hand stitching projects or small water color note cards to paint, etc. You’re not confined to a chair all day. You’ll be free to get up and walk around pushing an IV cart. You can go to the restroom. Usually infusions centers have an area with water, juice, snacks. The day goes faster than you might expect. ☺️

It should all go smoothly! Will you please let me know how you did with your appointment?

Will do! You guys have been wonderful . Thanks for being there for me

Had my first infusion yesterday . Took 5 hours. Thought it would be one and done but guess I need to go back next month and it’s a serious. Feel like I got hit by a truck and zero sleep but verv fatigued nausea and other symptoms may hit by Sunday, I was told there wasn’t a copay but there was? Anyway glad it’s done for now. Anticipation is the worst.

@zeedee1, checking in. How are you feeling 10 days later? Have the symptoms improved?

I had a couple of bad days then felt pretty good 😇www lady night fever and cold sweaty back, I set oncologist Monday, to go over new labs. Any ideas how many infusions I will need?

On way to oncologist for lab results and to see if I need more infusions. Cold night sweats returned theee days ago, fatigue and low grade fever.. wonder if j will add. Chemo to the rituxon?

Rituxan isn’t a once and done. Usually there are a series of 4 or more treatments to give an accumulative effect. So you may find that’s all you need for now and not added chemo. But it will be good for you to discuss this with your oncologist! Wishing you only good news today! ☺️

Since I need 6 more treatments do side effects get worse also?