Maintenance decision Looking for Input.

A promising beginning for 2017.

I am currently on a two-year Rituxan maintenance (every eight weeks) for stage IV, grade 2 Follicular Lymphoma, following 6xR-CHOP21 chemotherapy. I am being treated at a teaching hospital where this is standard. I am nothing more than a patient, but as I understand it, the maintenance immunotherapy is what delays relapse in indolent lymphoma... With that in mind, I imagine that the longer I receive treatment, the better my chances of not seeing disease progression too soon - although, of course, nothing is ever guaranteed in that respect.

Hope this helps.

Take care.

I am currently on Rituxan maintenance every 8 weeks. This is after 6 cycles of R-Chop followed by 3 cycles of RICE. I was scheduled for Stem Cell but that was put on hold and then cancelled for several reasons. The official start of my Rtuxan maintenance is March 2016. I have a sister-in-law on the east coast who also gets Rituxan. She calls her treatment day "Spa Day".  She had gotten me to think of it the same way. I take the whole day off from work, bring my favorite snacks with me, a book and large bottle of water. I am usually there about 5 hours. The only problem I have is that the high dosage of Benadryl I get before the Rituxan gives me restless leg syndrome.  That goes away once the Rituxan starts. I just keep it a relaxing day 

NailsJHS said:

Hi PeprmntPat55,

Hi PeprmntPat55,

 I think we have the identical situation...I had 6 total rounds of benda/rituxan with NED after my PETS (one after fourth treatment and one after 6th treatment).   I was NOT given any maintenance options. If I recall correctly, they said there was not significant evidence that it would help. That is, in studies those that DID the maintenance vs those that DID NOT do the maintenance had almost identical results. BUT...now I'm a bit scared because most of you seem to be doing the maintenance. I'm being treated at Memorial Sloan Kettering so I would think they'd be at the forefront of all this, but who knows. I don't go back to my doctor until March but will definitely be asking her then

While I am about to start Maintenance Rituximab (once every 3 months for 3 years) my history is a bit different.  I was diagnosed with DLBCL (stage 4) + low grade Follicular back in ’11.  R-epoch followed (6 cycles, each 6 days long 24/7).  NED!  Had almost 5 great years, then the Follicular came back.  I had an autologous stem cell transplant in July ’16 and part of the prep for that was 4 rounds of Rituximab & Bendamustine. 

During my 5-year-remission, my onco told me to keep my eye out because the Follicular would be coming back.  I asked her how I’d know and she simply said, “you’ll know”.  And she was right….in late 2015, tiredness, a sort of “heaviness” plus muscle weakness showed up  – hard to describe but I just knew something was up.  After finding out the “F” was back (via bone scans, biopsies, Pet, labs), we decided on the stem cell transplant. 

I’ve been reading as much as I can about maintenance and from what I can determine, for me it’s a definite yes.  Plus I really trust my Onco at the City of Hope.  Maybe after a stem cell transplant, there are more reasons to do one and fewer reasons why NOT to, although it’s certainly not without some risks.  Rituximab hasn’t bothered me much whether part of the R-Epoch or the Rituximab/Bendamustine.  

Perhaps your doc at MSK is saving maintenance in case your follicular comes back?  It is not curable at this time but the longer the remission the better chance that a cure will be developed.  

There will be new ammunition and a good chance that you can avoid an SCT.  Not that the SCT was so terrible, although it took much longer to bounce back from than I expected (and just as long as all the clinicians said it would!)  I sure as heck don’t want to go through another one and maintenance might add the years of NED that I’ll need.    

paella