Rituximab Round Two

[Sangye]

You're so sweet, Dale. I'll definitely do that.

Each of us has something that makes the Wegs more painful. That's mine. It has made me less judgmental, though. Good things come from breaking through old patterns.

[elephant]

Yeah! No tears, and that is a nag from a friendly little elephant! You continue to make people smile and laugh. It is very frustrating...sorry you are going thru this, but they will never know. But we understand and that is why it is great to here at this forum.

[Sangye]

I just scheduled my first infusion for next Wed (March 3). Gotta start bright and early (8:30 am), which means getting up at 5 am. Well, at least the benadryl knocks me out for an hour or two during the infusion.

I scheduled the following 3 on Tuesdays so hopefully I can get in to my therapist by Friday each week. The last time I did rtx I was too sick to see my therapist for the entire month. The combination of a big hit of pred, feeling like death and no therapy made October a nasty month for me!

[elephant]

Yipee! So glad you start soon! Recovery is on it's way! So happy for you Sangye!

[onatreetop]

Wishing you a better experience this time. Going in strong will make a big difference. The happy face helps too. Sending you all that I have at the moment! Relief is on the way after the investment. Go in postitive and laugh with with all the others. It always makes me feel better joking with all the help and others waiting and waiting. Passes time in a good way. Some people think I was crazy but I actually suggested boardgames and cards. But that only works if the people are scheduled the same day and time so it is tuff. But might as well make the best of it right?? I have learned so much in this last year from all you andfrom all the time in the office waiting. I am no longer afraid to talk to anyone or suggest things to pass the time. Some people are very open and surprised others say no thanks and thats fine too. Anyway, the pred is making me rambal again. Hope you hang in there and walk through this one quickly and find remission shortly.

[snooz23]

Sangye, first off so happy you are off for your second treatment. I hope it goes smoothly and really knocks the wgs down and out this time. I am also curious why you are much more keen on Rtx. vs. cytoxin? Are there a lot less toxic properties to rtx? I know you had a horrible experience w/ reaction to it and I am just trying to weigh some of my options before my visit to Cleveland on Tues. They will be laying out some treatment change options to me and I know these will be two of them. Another one thrown my way is switching to infused mtx. vs. pills. I am sort of leaning that way however I am wondering about rtx.? That may be the drug that really gets it for me? Just curious to the pros and cons you weighed for rtx. treatment. I am like you in that I cannot believe I am at a point in my young life that I am almost asking for these horrible drugs!! By the way I also enjoyed your list of why wgs. is "worse"/different than cancer.

[Sangye]

Onatreetop--I'm as chatty in real life as I am in this group. I enjoy talking to the nurses, other patients, etc... I never met a stranger, as they say.

Snooz-- Rtx and Ctx are totally different classes of drugs. Here's a brief summary :

Rituxan (rtx) = monoclonal antibody that binds to your B cells (WBCs that make antibodies) and destroys them. It's not chemo and doesn't have the toxic side effects and damage that chemo does. It directly targets the B cells.

Cytoxan (ctx) = heavy-duty chemo that controls Wegs by its side effect of severe toxicity, which suppresses the immune system. Major side effects, major damage to DNA, collateral damage, infertility, etc....

Dr Langford will decide if you need something as strong as ctx or rtx, or if you can use something milder like mtx. She'll clearly describe the pro/con of each.

[JanW]

Thanks as always to Sangye for her excellent description of all of the meds.

As I said in another thread, we Weggies are clearly all about -- "what do you take, what do you take?" and, in my specific case, I can look at Weggies here who have had SS surgeries and SN (saddle nose) surgeries, and have seen that they have had them done in totally different ways. Do you do the laser or the cutback on the SS? Do you use ear cartilage or rib cartilage to rebuild the nose? I think that the important thing is that any doc or surgeon at any time can justify what is being done in your case, and that you are educated enough to say -- why not cytoxan or why not mtx? In my (very limited) experience with my docs, this has made a world of difference. They treat you like a smart, sensible grown up, and you have a much better conversation about your health.

[pberggren1]

Hey Sangye are Rituxan and Rituximab the same thing? And what is the difference between Cellcept and Rituxan?

[snooz23]

So if it is available to me I may even want to consider changing to rtx. from mtx. just because of the chemo classification. The one downfall of the rtx. that they have discussed w/ me is that they really don't know what the long term effects will be? I appreciate your clear explanation, it is helpful.