The Leukemia & Lymphoma Society - Fighting Blood Cancers
45 Replies Latest reply: Dec 18, 2013 1:47 PM by peanut59 RSS

FOLLICULAR LYMPHOMA RELAPSE

zazoo Registered Users
Currently Being Moderated

RELAPSED FOLLICULAR LYMPHOMA-- Hello, everyone-- After a 7 year remission, my FL is back.(Had 6 R-CHOP) Preliminary suggested treatment: Bendamustine (Treandia) and Rituximab, with 2 years of maintenance Rituximab.  I may do this but want to know what else is out there. I know of zevelin and bexxar which sound promising. I want to see what clinical trials are available.  What have others done?

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    BeckyD Registered Users
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    I have nodal marginal zone lymphoma, which is treated in a similar way to FL.  I just finished treanda/R and was going to have 2 years R maintenance.  I didn't make it into remission, although there was marked improvement.  My Dr didn't want to do the maintenance since I wasn't in remission.  Instead, I'm back on watch and wait, and will get another scan the middle of August.  I'm also wondering what else is out there, since I'm not sure what wil be my next step if the next scan shows more disease.  ...BeckyD

    • Re: FOLLICULAR LYMPHOMA RELAPSE
      zazoo Registered Users
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      Hi, have you looked at clinical  trials in your area? There seem to be a lot of them out there with new monoclonal antibodies, etc. for the B cell lymphomas.

    • Re: FOLLICULAR LYMPHOMA RELAPSE
      zazoo Registered Users
      Currently Being Moderated

      Hi, Becky, I meant to ask, how were the side effects, etc. from the Treandia? I am very curious about that because that is still the most likely thing I might end up doing. How many sessions? Did you ever have CHOP or R-CHOP because I know how that was, was Treandia like that, if you know? I would definitely look into clinical trials and/or second opinions.

      • Re: FOLLICULAR LYMPHOMA RELAPSE
        BeckyD Registered Users
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        I didn't have R/CHOP.  My first treatment was radiation for my groin area.  Then the disease popped up in my abdomen and I was on watch and wait for three years.  Treanda/R was my first experience with chemo.  I wouldn't say it was wonderful, but compared to stories about CHOP it did seem mild.  For one thing, I didn't lose my hair, and I kept working (I'm a high school teacher) with just a few days off for the actual infusion and then two or three days after that, especially at the end of the treatment.  I had R alone, then four R/Treanda cycles, and then R alone.  As I said, there was marked improvement but not a remission.  Stomach problems were the worst for me, though the drugs to control nausea worked to prevent vomiting if not a rather sick feeling.  About two weeks after the infusion my temperatures ran high, but not over the 100.5 that they seemed concerned about.  Unfortunately, my Dr. said the drug was new enough that she didn't want to use it again if I needed it within two years.  Of course I may not need it.  My last watch and wait lasted three.  It is just nerve wracking to have this condition and not know when/if it will pop up and disrupt life again.  Keep us posted on your situation.  BeckyD

        • Re: FOLLICULAR LYMPHOMA RELAPSE
          zazoo Registered Users
          Currently Being Moderated

          Hi, Becky, thanks for the  info, very useful to me to hear about Treandia-- I got a good sense from what you said. I did have the dreaded R-CHOP and I did about what you did, took off a day or two or three after infusion, then back to work-- the last one,  #6, was the hardest, I remember I had to take a week off--- Treandia does sound "better."  What's next for you, routine testing to see where you're at?

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    porciniak Registered Users
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    Hi Zazoo,

     

    Lovely to get 7 years! 

     

    I'm not up on what's out there, but when needed  I use clinical trials dot gov, and  visited nhl cyberfamily and lymphomation dot org for updates and reviews, etc.

     

    A decade ago, after my first relapse sct was the first recommendation; but then that's been some time ago.

     

    After transformation I had an auto at the Hutch, 3 years ago now.

    • Re: FOLLICULAR LYMPHOMA RELAPSE
      zazoo Registered Users
      Currently Being Moderated

      how was the stem cell transplant? No fun at all I'm sure. I "could" get that I guess, but I'm not mentally there yet--

    • Re: FOLLICULAR LYMPHOMA RELAPSE
      zazoo Registered Users
      Currently Being Moderated

      Congratulations on completing an autologous SCT. I wish I could say I had that under my belt-- it's one of those things you wish you "had" done but don't want to "do". How was the experience? Did you get heavy chemo beforehand? How long did it all take?  Thanks.

      • Re: FOLLICULAR LYMPHOMA RELAPSE
        porciniak Registered Users
        Currently Being Moderated

        Well, that's a long story, ; but, the first time it was presented to me I was not capable mentally of facing the challenge.  I wish now that I had done it earlier though. I would have had fewer treatments prior to the the auto and been a decade younger.

         

        Not that it was a piece of cake, but it's doable.  Of course I was at SCCA, aka The Hutch, and felt my life was in good careful hands.  Very Important.  I've since been to another center, name withheld to protect the guilty, and I feel grateful that I was in such a quality program.

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    gdafoe Registered Users
    Currently Being Moderated

    Congratulations on the first 7 years of remission.  The fact that you achieved such a long remission works in your favour because it indicates your fNHL is very responsive to treatment. Subsequent treatments are therefore more likely to be successful.

     

    Of course the worst thing about fNHL is that there are so many treatment options it makes it near impossible to choose from amongst them all. One day we  will have the technology to test people and find out which treatments will work best but until that day it is a guessing game.

     

    Personally I think either Bexxar or Zevalin would be good choices since they don't really use "drugs" which are generally more toxic and which risks you building resistance. However there is one problem that  I see. Since you have had quite a lot of Rituxan you may not get as good a response to Bexxar or Zevalin since they both target the same CD20 marker on the cell surface. It is known that people become resistant to Rituxan over time so this could an issue for you.

     

    However there are several new antibody therapies that are worth considering. All are in clinical trial stages now, so it is not always possible to qualify to get  them.  But the advantage to using antibody based therapies is that there is so little toxicity. Best to save the nasty stuff until it is really needed.

     

    Inotuzumab Ozogamicin: This one targest the CD22 marker so it is looking at a different target than Rituxan, Zevalin and Bexxar. Here is a recent article about it from Cancer Consultants. You need a free membership to view the article, but since it is free and they have TONS of good information it is worthwhile.

     

    Inotuzumab Ozogamicin Achieves ‘Markedly Long’ Antitumor Response in Indolent B-Cell NHL

    http://www.cancernetwork.com/conference-reports/aacr2012/content/article/10165/2055556

     

    Ocaratuzumab is another new antibody that is showing very high response rates in people who are refractory to Rituxan. It is a second generation antibody.

     

    Efficacy of ocaratuzumab (AME-133v) in relapsed follicular lymphoma patients refractory to prior rituximab

    http://abstract.asco.org/AbstView_114_100345.html

     

    Next is another next generation antibody. It is only in Phase I trials but the results are good enough to warrant consideration.

     

    Phase 1 study results of the type II glycoengineered humanized anti-CD20 monoclonal antibody obinutuzumab (GA101) in B-cell lymphoma patients

    http://bloodjournal.hematologylibrary.org/content/119/22/5126.abstract?sid=4ce6c5a5-c35d-4cd2-9891-fa73116363da

     

    You can find all those clinical trials and thousands more at the USA clinical trials government website. It is a very easy site to search.

    http://clinicaltrials.gov

     

    Of course there is also a very broad range of standard therapies to consider. Since you had such a good response to R-CHOP you might consider R-CVP. It is the same but leaves out the Doxorubicin, which comes with a lifetime limit. You would not have surpassed your limit yet with only 6 R-CHOP but since the Doxorubicin is potentially toxic to the heart, why risk more of it.

     

    Bendamustine does seem like the most likely of the standard therapies for you. It gets great results and its toxicity is somewhat less than CHOP (and has no cardiotoxic side effects)

     

    There is also the option of having an autologous stem cell transplant. While this would be the most toxic and most difficult treatment it also has the potential to put you into a very sustained remission.  It is known that the more previous treatment you have had the less success the outcome from an SCT so having it as a second line therapy is becoming more common.  But it is not for everyone. I am lucky, I chose to have an autologous SCT as my second line treatment when I relapsed from fNHL in 2002. It appears that it cured me because I have been in remission for 10 years. My SCT was part of a clinical trial so I underwent extensive molecular testing for the 5 years following my SCT and even at the molecular level there was no evidence of disease. Age would play a role in your choice. The younger you are the better able to tolerate an SCT you will be. I was 42 when I had mine. The prospect of a VERY LONG remission was one of the deciding factors for me. At only age 42 I wanted something that would let me reach my retirement years.

     

    Greg Dafoe

    Webmaster: http://www.nhlcyberfamily.org

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    peanut59 Registered Users
    Currently Being Moderated

    Hi Zazoo,

    Haven't been on the boards for a while and thought I would post.  I don't know where you live but I would suggest that you look at clinical trials.  After multiple relapses following on RCHOP, maintenance Ritux, R-Benda and Bexxar, over a year ago I entered a phase I clinical trial of CAL101. it has steadily reduced my very bulky disease.  I have had no new nodes in over a year which is unprecedented for me.  I had a side effect of diarrhea for awhile but the docs now think they have figured that out and are treating it successfully with a drug called Lealda that is used for Crohns disease.  They are trialling CAL101 at multiple centers and are now enrolling Phase III arms.  You take a pill in the morning and one at night.  It is being administered on it's own or in combo with rituxan or r-Benda.  I am also hearing very good things about a new Abbott labs drug called ABT199.

     

    Do some checking around and let me know if I can help.  Best,laurie

  • FOLLICULAR LYMPHOMA RELAPSE
    zazoo Registered Users
    Currently Being Moderated

    Has anyone participated in a PHASE I clinical trial?

    • Re: FOLLICULAR LYMPHOMA RELAPSE
      peanut59 Registered Users
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      My CAL101 trial is a Phase I trial.  What questions do you have re Phase I trials and I can try to help.

      • Re: FOLLICULAR LYMPHOMA RELAPSE
        zazoo Registered Users
        Currently Being Moderated

        i like your name-- i was born in 59--  my questions about phase ones are primarily safety-- the drug has not been shown to be safe yet, that is what the phase one is for-- were you worried about that? what did they tell you about risks? were the side effects as predicted? better, worse? are you continuing the trial? its my undestanding that they will shut it down early if its not safe or not working to curb the cancer---

      • Re: FOLLICULAR LYMPHOMA RELAPSE
        zazoo Registered Users
        Currently Being Moderated

        hi again. I saw a lymphoma specialist today and he really likes the CAL 101 drug-- its not offered in AZ, though. Not cool. He is getting the ABT 199 though I think

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    RoyPatti Registered Users
    Currently Being Moderated

    I'm 54, was diagnosed in 1995 with the same.  I am waiting for results from my biopsy this past Friday.  Have been in and out of remission over the years. 17 years since diagnosis.  Extremely over anxious this time, more than ever.  Not sure why, but this is the first time I've used any websites for support.

    • Re: FOLLICULAR LYMPHOMA RELAPSE
      FRAN641 Registered Users
      Currently Being Moderated

      RoyPatti,  17 yrs WOW.  I have only been in remission 7 months, but the first time last year I only had a 3 month remission.  Those scan/biopsy tests can get my jitters going for sure.  Welcome to the group, nice people around here. 

      Take care, fran

    • Re: FOLLICULAR LYMPHOMA RELAPSE
      porciniak Registered Users
      Currently Being Moderated

      Wow, another old timer, older than me, lol.  Not age but dx, mine was in '98.

       

      @ DDB, I agree with zazoo, twice the size in a year is not necessarily indicative of transformation.  Biopsy will tell.

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    ddashbrook Registered Users
    Currently Being Moderated

    Hi Zazoo, can I ask what your signs/symptoms were of your relapse?  I'm 10 yr's out from diagnosis and 9 yr's completion of FND+R and experiencing an enlarged cervical lymph node (inguinal was my primary diagnosis site) with headaches for past 2 months.  Just now putting the 2 together.

    • Re: FOLLICULAR LYMPHOMA RELAPSE
      zazoo Registered Users
      Currently Being Moderated

      Hi, Ddashbrook! I had a CT done of my heart following an "interesting" EKG (that part is fine) and they found a mass in my left lung-- when I finally got the PT scan, the lung mass was "active" and two inguinal lymph nodes were enlarged. Mine started with left inguinal nodes way back when. I've been fatigued and short of breath but that's been going on for years, really, even when scans were clear, so think just kind of a fluke that the EKG found a lung mass. I was due for a scan anyway, so don't think the EKG "saved" me. But I do give my regular PCP credit for doing the EKG, I wasn't really "due" for one, which started the ball rolling.

       

      What do you think? You have a long remission going there. Now that I've relapsed, the doctors seem freer to talk about "my" life ahead, wih multiple scans, multiple treatments, etc.

      • Re: FOLLICULAR LYMPHOMA RELAPSE
        ddashbrook Registered Users
        Currently Being Moderated

        I naturally think the worst, predisposed to it for some "odd" reason :-/  I do have an appt tomorrow for an exam, apparently my health insurer has decided that PET Scans must be requested with proof of need which is a new thing.  I assume they'll start with some sort of scan.  It has been a long time since my initial diagnosis but I remember they started with a biopsy, not sure why that wouldn't be what they start with this time.

         

        I hope the best for you and your situation and many years ahead for you Zazoo!

        • Re: FOLLICULAR LYMPHOMA RELAPSE
          ddashbrook Registered Users
          Currently Being Moderated

          Follow up, had my scan and lymph node in my neck shows "active uptake" and I meet with surgeon next week to schedule a biopsy.  I did get my hands on last years PET scan report and see that it mentions this lymph node and it's twin on the other side at 10mm, the enlarged one is at least twice as big now.  Since fNHL is indolent I'm wondering if this means I have transformed to agressive form such as DLBCL.

          • Re: FOLLICULAR LYMPHOMA RELAPSE
            zazoo Registered Users
            Currently Being Moderated

            Hi, DDB! I don's see transformation at all from what you've said-- lymph nodes growing is what they do, mine are growing, the ones with new FL in them. I have a hot one on each hip, but they are all follicular-- I had 7 year of remission-- the only way to find out is with the biopsy as you know but the likelihood is for this to stay the same kind of L.

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    shazoo Registered Users
    Currently Being Moderated

    Hello, everyone-- After a 7 year remission, my FL is back.(Had 6 R-CHOP) Preliminary suggested treatment: Bendamustine (Treandia) and Rituximab, with 2 years of maintenance Rituximab.  I may do this but want to know what else is out there. I know of zevelin and bexxar which sound promising. I want to see what clinical trials are available.  What have others done?

     

    Zazoo here-- I thought I would update. My follicular lymphoma relapsed after 7 years in remission. After a LOT of study, I have been in a clinical trial  since August 2012. I am receiving a monoclonal anitbody labelled CDX-1127.  It is supposed to hit on CD 27 and perhaps activate the T cells to strengthen the immune system. I have had 2 rounds of 4 infusions and am on my third round. The drug may have stopped the FL from growing and spreading but (so far) has not shrunken any masses or nodes. I'm disappointed that there is no shrinkage if growths but am staying in the trial because overall tumor burden is low, its not spreading, etc. I am also way interested in avoiding the hard stuff (been there, done that with R-CHOP). Side effects are almost non-existent, nothing compare to CHOP. I may be a little queasy, tired after an infusion but, again, nothing close to "real" chemo (as we all know). This trial is a phase I.

    • Re: FOLLICULAR LYMPHOMA RELAPSE
      jgold Registered Users
      Currently Being Moderated

      My NHL came back after two years of remission after RCHOP.  I am on a trial protocol based on Bendamustine and GA101, just finished fourth treatment and all lymph glands have shrunk back to normal size.  I still need two more treatments and then two years maint with GA101.

       

      So far this treatment is much better tolerated than RCHOP, and while I do have a little more nausea and a bit tired it is a breeze is comparison.

       

      I wish you luck in your treatment, hopefully the end result will be long term remission.

       

      Best

       

      Jim

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    shazoo Registered Users
    Currently Being Moderated

    zazoo here-- for several months i have  been in a clinical trial with a new monoclonal antibody, targeting CD 27. Resuts  maybe great, maybe just pretty good-- the C has stopped spreading to new sites, but what is there is still there, maybe increasing a millimeter in size every 3 months or so. They call this "stable." 

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    hiram361 Registered Users
    Currently Being Moderated

    hi zazoo,

     

    after a relapse in 2012 the dr put me  on Revlimid. Four months later in remission. it was the easiest treatment I went through.

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    peanut59 Registered Users
    Currently Being Moderated

    Hi Hiram,

    Are you still on Revlimid or did they stop it? Did you do in combo w rituxan or on its own?

    Rev plus rituxan is an option for me if cal101 (Aka gs1101 or idealisib) stops working,

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    peanut59 Registered Users
    Currently Being Moderated

    And sorry I vanished for awhile from the boards! It has been over 2 1/2 years and I am still in the cal101 trial. While it is a phase I trial, Gilead is now enrolling Phase IIIs.  It is a kinase (enzyme) inhibitor targeted to kill the enzyme that the malignant cells need to survive,

     

    I would encourage relapsed fNHLers to seriously look at clinical trials. There are several new agents, all targeted. When I entered the Cal trial, my only remaining option was an allo transplant with an unrelated donor. The risks of that felt far greater than trying the clinical trial.

     

    Since I am now a long term cal101 patient, I am considered in maintenance so scans are determined by my onco. The last time I saw him was two months ago and the nodes that were previously palpable are now normal size. All of my blood counts are completely normal, even my white count.  I take one CAL101 pill in the morning and one at night,

     

    And so many options if this fails me - another kinase inhibitor - ibrutinib- looks great. It has had such good results for indolent NHL as well as CLL and is being fast tracked by the FDA. Also Revlimid plus Rituxan another great option. I spoke to a trial site up at UC Davis and they are seeing excellent results and is the therapy is easily tolerated.

     

    Then there are the antiPD-1 agents, t-cell reverse engineering and vaccines, which have a long way to go, but could also be promising.

     

    This is my second clinical trial and I have found them to be well worth trying.

     

    Pls let me know if you have any questions for me and I will check back. Xxxlaurie

    • Re: FOLLICULAR LYMPHOMA RELAPSE
      hiram361 Registered Users
      Currently Being Moderated

      hi peanut59,

       

      I too am going to Ucla oncology with Dr black and Dr Pinter-Brown. they put me on Revlimid rituxin treatment for one year. I have now been off of Revlimid for 11 months. no bad side effects other than skin irritations. but it was so much easier than chemo. I think I was the second patient for ucla on the regiment.

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    peanut59 Registered Users
    Currently Being Moderated

    I see dr Devos, was just in today getting more of my cal101 pills. So they think you are relapsing? I see you posted on other thread. Good news is that there are more and more options.

    • Re: FOLLICULAR LYMPHOMA RELAPSE
      hiram361 Registered Users
      Currently Being Moderated
      peanut,  my Dr has been telling me about the cal101 treatment. he said good results have been shown in Fnhl.I rather choose that than a bone marrow traI hope transplant. my problem with clinical trials is that I had two cancers at dx. so they tell me I'm not a candidate
      • Re: FOLLICULAR LYMPHOMA RELAPSE
        peanut59 Registered Users
        Currently Being Moderated

        Your doctor could try for compassionate use for cal101.

        Also ibrutinib close to approval, they could use that as alternative.

        I found out yesterday that they are now combining Revlimid with ibrutinib. Ask your doctor about that. Could be more efficacious.

        • Re: FOLLICULAR LYMPHOMA RELAPSE
          hiram361 Registered Users
          Currently Being Moderated
          I will tell him thank you
          • Re: FOLLICULAR LYMPHOMA RELAPSE
            peanut59 Registered Users
            Currently Being Moderated

            Checking in Hiram, what is the latest for you?

            I am still good, saw dr. Devos this week. Nodes still normal size, blood counts still normal, still taking full dose of cal101,

            • Re: FOLLICULAR LYMPHOMA RELAPSE
              hiram361 Registered Users
              Currently Being Moderated
              hey peanut that's good to hear. I have to wait till December 18th to go back. the node is still the same size, which might be a good thing. but I'm pretty sure they are going to do a biopsy
              • Re: FOLLICULAR LYMPHOMA RELAPSE
                peanut59 Registered Users
                Currently Being Moderated

                Hey, Hiram! I like when you call me peanut. That is what my dad called me til the day he died.

                So write after you have your dec 18 visit and let me know what the plan is. My next study visit is jan 2,

                Dr. Devos flew to ASH meeting to present the data on CAL101. Should be lots of news coming out of those meetings.

                 

                Happy holidays! Maybe we could meet up sometime - where in LA do you live?

  • Re: FOLLICULAR LYMPHOMA RELAPSE
    peanut59 Registered Users
    Currently Being Moderated

    I think you go to the doc tomorrow Zazoo, how are you feeling?

    My sinuses are bothering me likely from the warm and polluted so cal air.

    • Re: FOLLICULAR LYMPHOMA RELAPSE
      hiram361 Registered Users
      Currently Being Moderated
      hey peanut,   I'm hanging in. I feel your pain with the allergies. I also like a respiratory infection, but that's over. just found out from the Dr still wait and watch. he said the bump seemed to change firmness and did not grow. he even doesnt want to do a pet scan yet. I trust him he had been right on. so I continue to watch and wait
  • Re: FOLLICULAR LYMPHOMA RELAPSE
    peanut59 Registered Users
    Currently Being Moderated

    yay for w and w, hiram! i like that idea lots.

    I see de vos on Jan 2 for a study visit. they will do my labs and i will pick up another supply of cal101. he has said that we won't scan until things feel changed or i get symptoms, happy about that after 7 years of non-stop scans. i figure if i develop a secondary cancer from all of the scans in 20 years, they will have a pill i can take for that! that's the only way i can deal with scans. my last scan was in april 2013.

    i actually went to whole foods yesterday and they suggested a couple of homeopathic remedies for the sinus pain in my cheeks, which in the past has pretty much resulted in a need for abx. i decided to try something different this go round and within 6 hours of taking the homeopathic remedies, my cheek pain was gone. could have just been a coincidence, but i will stick with this remedy the next few days and see if i can kick it out.

     

    are you staying in so cal for the holidays?  my family is all in new england but we are staying here this year. should be a nice relaxing break. my 13 year old son has two weeks off from school so we will get lots of r and r in.

     

    keep me posted, maybe some time we can meet up for a coffee? would be fun to compare notes? i live in santa monica, where do you live?  xxxlaurie

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