Question: I've been hearing a lot about Rituxan and i had my first round of treatment about 3 months ago. My doctor has since suggested a 2 year maintenance using Rituxan. Has anyone else had or been on a maintenance treatment. If anyone could give me any advice or suggestions i would appreciate it. I'm just not sure if it is a good idea. I'm in 4th stage now but like i said i just had my first round of treatment. Thank you.

N writes: My first chemo was R-CVP. I attained CR but it only lasted 5 months. 2 and 1/2 yrs later I needed chemo again and received the B-R. We decided RM was appropriate since remission was so brief the last time I had chemo. I am feeling fine. White counts continue to decrease but neutrophils are fine. It is such a difficult decision, like so many other decisions we have to make, but I am hoping for decades of remission!

C writes: I was in a clinical trial and on Rituxan maintenance for 5 years, one dose every 3 months. I then progressed a bit and had 4 rounds of Rituxan and week apart. It did not work, but it was not enough to have any other treatment, but kicked me out of the trial. Am back on watch and wait, it has been two years with no progression, actually decreased nodes as of late. Not sure what I would do if I had to do it over again- it is a crap shoot. I can say it kept me progression free for 5 years, but maybe that would have happened anyway. I would have to say, I do not think of having 'lymphoma' as much as I did when I was on maintenance. I am stage 4, grade 1 and diagnosed almost 7 years ago. I was a little anxious that the Rituxin did not work for the 4 rounds, and thought maybe I had become resistant to it, but I feel I have been off of it for 21/2 years so hopefully I will be ready for it again whenever the time arises. I dont think that it has been proven to become resistant. I had no side affect at all, Good luck in your decision-crystal balls would sure be helpful! !

V writes: Keep an eye on immunoglobulin levels too. Immunology at NIH is now following patients with permanent immunoglobulin limitations following Rituxan. Some folks can apparently develop persisting hypoimmunoglobulinemias after as few as a couple of rounds of Rituxan. So it has helped a lot of folks get into remission or to stay there, but some may also end up on monthly IGG infusions forever with permanent vulnerability to infection.

L writes: One of the relatively rare but serious side effects is a major decrease in neutrophils (neutropenia occurs in ~7% of the patients doing a 4 week treatment and is probably much more frequent on maintenance but frequency rates are not published to the best of my knowledge).

Antonio was on a maintenance schedule for about 7 months. He was doing really well until is neutrophils dropped to ZERO and stayed there for about 3 weeks (very scary! It was worse than with chemo because it was an abrupt drop from borderline 500 before weekly rituxan to zero 2 days later. Plus, it took much longer to recover than with subsequent chemotherapy treatments (we had extra-extra-extra doses of neupogen and the doctors and us were wondering the neutrophils would ever recover. They did but the stress during those weeks in isolation as if he had done a bone marrow transplant was tremendous. So my advise it for anyone that does maintenance rituxin keeps a close eye on the neutrophils.

B writes: I didn't have any side effects, did 6 rounds of R with chop and 2 years of maintenance.

K writes: I think we all have had very different experience. I have only done 4 rounds of Rituxn ever (once a week for 4 weeks) and honestly never felt any side effects.

E writes: In May I finished 2 years of Rituxan maintenance after RCHOP. Fatigue was my only side effect. It would hit in week three. I would feel exhausted for about three weeks. My energy would improve and I would be back to normal in 8 – 10 weeks. I worked through all of the Rituxan treatments and took some kind of a walk every day. Some days it was only a couple of blocks, but most of the time I did 1.5 – 2 miles. I would take a 20 – 30 minute nap each afternoon when I was really tired.

L writes: Whack-a-mole, that's funny.... I think of it as internal mildew. Rituxan would be like the bleach. Gotta keep an eye out & keep after it. I'm about halfway through an 8-week course of Rituxan, and two years ago I had a 4-week course. It knocks me out but a little less each time, and I think my thyroid issues are more to blame for a lot of my symptoms than the lymphoma and treatment.

S writes: You will hear so many different experiences...it's hard to know what to do! I had R-CHOP in 2005 and chose not to have Rituxin maintenance. I just had my annual CT scan and continue to be in complete remission, with no signs of lymphoma for 7 years now. If I'd had R-maintenance, I'm sure I'd be crediting that for the long remission when in fact, it would have happened without it. For others, it's different. Gather facts, discuss with your onc, and pray for wisdom!

T writes: I received R-CHOP for stage 4, grade 1 follicular lymphoma with a very bulky tumor in early 2008, with residual 'scar tissue' showing on CT after treatment. My oncologist was highly recommending R maintenance afterward. Before the 2 years were up, I had developed Hypogammaglobulinemia - low levels of immunoglobulins (Igs), had chronic sinusitis, felt chronically tired, so we ended one treatment early. (I was not enthused about Ig infusions, with the high cost & more side effects to consider, and declined them.) 8 months after ending the treatment I was in relapse (same location) and have been on watch and wait for close to 2 years now. No way of knowing whether the R was staving off the relapse or just not having an effect. After the initial shock of the relapse wore off, I have to say I've felt much better on W 'n W. Some of this, I'm sure, is psychological--I hate being a 'patient', and going back in for all those infusions put my head in a bad place. If there really is no improvement in survival, I'm not sure I'd opt for the maintenance, but it really seems to be a matter of the individual's choice at this time, what you are comfortable with in the amount of treatment. Comparing PFS in R maintenance with no treatment never made much sense to me, since R m is just more treatment. Hopefully in the future there will be a maintenance drug that supports the immune system, rather than suppressing it, with even fewer side effects.

K writes: Fatigue was a lot worse with cup, I worked all through retuximab maintence and now am only working 6 hrs a week, economic factor not the drug. Plus I'm in my 60s and a nurse, so fatigue is multi faceted.  Hopefully your onc is keeping a close on your labs.... Like another of said. Thyroid can also be an issue and synthroid is my friend.

J writes: I was wondering did you get really tired with the rituxin maint? I was so tired when I did the 4 weeks of rituxin I would get tired just getting out of the chair walking to the kic. I am really nervous about this treatment it starts on Thursday this week.