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

@zeedee1, what a relief that they approved the treatment you need.

Ruxience(rituximab-pvvr) is biosimilar to Rituxan (rituximab). It is an injection delivered intraveousnly (IV) under supervision of your cancer team. Here's more info from Mayo Clinic
https://www.mayoclinic.org/drugs-supplements/rituximab-pvvr-intravenous-route/description/drg-20469990
When do you start treatment?

Thanks for the info. I don’t know when I start . I just saw the approval on my Humana portal. Will let you know when I do. I’m assuming I’ll be staying on Imbruvics, prednisone and potassium as well . Thanks for being there. It really helps. Trying to hide my family from my down days.

Hi @zeedee1. Looks like the approval for Rituxan finally came through from your ensurer! I don’t know why we should have to practically beg for our meds but whatever, you’ve gotten the green light…so now the next step.

Starting a new drug can be a little intimidating. I’ve had Rituximab infusions and I know there are quite a few other members in Connect who have received this medication. For me, it was an absolute lifesaver. I didn’t have any side effects at all other than it seemed to quickly get my condition under control!

This medication is provided in an infusion center like your local hospital or your oncologist’s office. You won’t need a port but you will have a small IV line run in your arm or hand. Painless and will be removed after each session.

The meds are infused slowly to avoid any potential reactions. So you may be there for a couple of hours, especially for the first appointment. It’s very common for a slight allergic response during the first infusion. The nurse is right there with you, prepared with Benadryl and steroids that are injected into that IV line. I know it sounds scary but it is handled so matter of factly by the nurses that it’s really a non-event. If there is a reaction, the drip rate of the infusion is slowed down to allow the body to adapt. I never had another reaction after that with the other sessions.

For the infusion session, you’ll be able to get up, walk around, use the restroom, etc. Take along a little bag of activities, tablet, book, snacks, water…

It sounds like you’re being a real trouper with taking your meds and trying to remain stoic with your family when you’d rather curl up in a blanket and shut the world out. That’s a tough challenge being brave all the time. Your positive attitude and stoicism can be helpful in keeping you moving forward even on those bad days. But it really is ok to let your family see your vulnerable side. It’s ok to ask for help. And above all, listen to your body…if it wants naps or tells you to slow down or ask for help…listen. ☺️

You mentioned family members, do you have young children? Are there family members in the house who can help take away some of the daily stress loads of housekeeping and such?

Thanks do muchvthevthecheartwaingcresponse. My husband is here but has heart cindiotiin and kids live in denver and another daughter has 4 little ones so I’m blessed with family just not too close. A few neighbors are great but I hate to burden anyone. Not used to relying on other as they all have relied on me.
Will try to find out how soon I can start hopefully will hear today. I’m sure the oncologist and Humana thing in a real pain😞.
Anyway thanks again . You guys are a life safer.

As someone who is on IvIg for Sjogren's I have been treated for just over a year. I have had two sessions (each 2 infusions) of Retuximab and had no side effects. The discription you were given seems right on. Good luck. And I too have had to announce that I am stepping away from many of my duties for health reasons. It's ok and time other people stepped up to the plate.

Thank you for sharing. I am in stage for of my drug plane which means I have spent over $8000 and gave had no deductibles till next year. Now they are saying I will have to pay copays for this medicine. So tired of fighting these battles

Nobody has gotten back to me as to when I start. It was supposed to be three weeks ago before the approval debacle. They said a nurse will call when they receive the meds but Humana is saying even though I am in catastrophic phase of Medicare these infusions will,have Co-Pay?

Still not scheduled for infusion. Oncology pharmacy asking for huge co pay even though I am in catastrophic coverage on Medicare meds. On phone all day again with Humana and Oncologists office. No calls back. Starting to let things just take their own course ….

I’m not very knowledgeable about what meds are covered with Medicare and why you’re still required the large copay even after reaching the $8,000 level. I read over the info on the Medicare site and from everything I’m seeing, you shouldn’t have to pay out of pocket. Though it does stipulate, ‘covered drug’. I couldn’t find the list of covered drugs to see if Rituxan qualifies.
I had Rituxan infusions (almost 6 years ago) while on Medicare (Advantage plan). The infusions started in January. So basically, I was beginning the medical year having to reach the deductible. But looking back on my medical bills, the Rituxan was covered and I didn’t have a copay. Again, that was 6 years ago so I don’t know how much coverage has changed since then.
This is so frustrating for you and I’m sorry you’re having to fight for your medication! Hopefully someone with more Medicare experience will be able to pop into the conversation and give you some pointers.

I see oncologist Monday for regular follow up so I think I will just wait until then to ask for help. Cancelling this weeks labs since they were supposed to check on how infusion was going. Tired of being on hold all week. Thanks for the support