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Maintenance decision Looking for Input.

PeprmntPat55's picture
PeprmntPat55
Posts: 60
Joined: Aug 2016

Great news for the new year!  Had a PET Scan just prior to my 4th cycle, Rituxan/Benda.  Onc says there is no evidence of cancer and the mediastinal tumor has decreased significantly , as have all the other lymph nodes that were enlarged.  

I had my 5th cycle today and Lord Willing my last will be the end of this month.  Now it's time to make a decision in regards to Rituxan maintenance.  Onc says maintenance would be Rituxan only, one infusion every 3 months for two years max.  I would have a follow up appointment with PET Scan prior to. If I decide maintenanc is for me, I would begin after the post treatment visit.  

Has anyone with Follicular Lymphoma had the Rituxan maintenance?  

Is there someplace I can search the stats in regards to maintenance/no maintenance recurrence?

Thanks so much, you all have been such a blessing to me!

PP55

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

What a way to start the New Year, Absolutely Wonderful!!!!!

Posts like these are such a joy to read.  I have follicular cancer, stage IV grade 2.  I was treated with Rituxan once a week for one month.  Then maintenance for four more infusions every other month.  I reached this decision with a specialist at Dana Farber.  Local doctors seem to do two years of maintenance.  I decided to go with my second opinion from Boston.  That was in 2014.  At the time I was told that there was no evidence that it was better to do it longer.  This of course was done with my records in from the the specialist.

Not sure if this helps but good luck and enjoy!!!!!!

PBL
Posts: 184
Joined: Jul 2016

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3309
Joined: May 2012

Patty,

My lymphoma was not one that has maintenance options, but what I have read matches what PBL just wrote:  It is better to do it than not.

It is not a guarantee, but helpful.. Lessening the liklihood of relapse only a few statistical points is probably worth the effort. And Rituxan is one of the milder chemo drugs used in the lymphoma world.

max

lindary's picture
lindary
Posts: 658
Joined: Mar 2015

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 

 

PBL
Posts: 184
Joined: Jul 2016

Hello again,

You may find it helpful in reaching your decision to look at this recent review of Rituxan maintenance for FL (http://www.lymphomation.org/MaintanenceR.htm). In particular, the following quote explains the difference in maintenance/no maintenance between patients with seemingly identical disease but different induction treatment:

"The treatment history seems to matter.  The RESORT study gave the advantage to observation for follicular lymphoma when the initial therapy was Rituxan x4; while the PRIMA study gave the advantage to maintenance Rituxan when used after Rituxan-based chemotherapy."

Take care.

PBL

 

PeprmntPat55's picture
PeprmntPat55
Posts: 60
Joined: Aug 2016

Thank you all so much for your input.  At this point, I do believe I've made the decision to go forward with maintenance.  I have 

so apppreciated this forum. 

PP55

NailsJHS
Posts: 13
Joined: Jul 2016

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 thenSealed

paella's picture
paella
Posts: 81
Joined: Jun 2012

 

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

 

FL Fighter
Posts: 1
Joined: Sep 2017

Here is a study that indicates Rituxin maintenance can be helpful towards ongoing treatment of Follicular Lymphoma even after taking the six rounds of R-Bendamustine. I understand that one infusion every three months is less toxic than every two months, but with a similiar outcome.

 

https://academic.oup.com/annonc/article/27/5/895/2769783/Factors-influencing-outcome-in-advanced-stage-low?related-urls=yes&legid=annonc;27/5/895&cited-by=yes&legid=annonc;27/5/895

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