Wondering about your treatment regimen for relapse NHL

dowgirl
dowgirl Member Posts: 13
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Dear members - I am new to this community and am seeking your input for understanding the treatment regimen for a relapsed B cell (aggressive) or marginal zoneNHL (MZL/indolent). My mother (age 56y)was diagnosed with B-cell NHL in March 2011. She finished 6 rounds of R-CHOP followed by radiation therapy (30 rounds) and was declared in remission/cured late 2011. However the most recent PET (June 2012 was-ve and Dec 2012 was +ve) showed she has a relapse. At this point, the Oncs are unclear (as more tests are being done) to determine which type of relapse is it. Based on my limited knowledge - I have a few questions and I wanted to seek the community's input on the same.

1. The onc mentioned MiB1 rate? Less than or equal to 38% indicates indolent. My mothers is on the border and so they are no clear whether it is indolent or aggressive

2. Another ONC suggested R-ICE followed by ASCT - we want to keep that as our last option - but I need to know other possible chemo/Rituximab or similar options before it comes to ASCT.

3. Upon a second opinion, the ONC suggested Treanda + R - not sure how patients have reacted to this and the overall success rate...

At this point I wanted to know from the community with relapse NHL either B-cell or indolent MZL - what are the typical treatment options your ONC advised and you received.

Thanks 

 

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #2

    Dowgirl,

    The only way for the doctors to know what strain of lymphoma your mother now has is with a biopsy. I am surprised that they are speculating on what course of action they might take, since the strain of cancer (after it is identified) will determine this.  Statistically, the most common strain in relapses generally is the strain the individual had before, although lymphomas not uncommonly come back as other lymphomas, or even leukemia.

     

    I personally would ask them why they are wasting time guessing at things, rather than performing a biopsy.

     

    Best of luck to her, and a Blessed Christmas,

    max

  • dowgirl
    dowgirl Member Posts: 13
    #3
    Max Former Hodgkins Stage 3 said:

    Dowgirl,

    The only way for the doctors to know what strain of lymphoma your mother now has is with a biopsy. I am surprised that they are speculating on what course of action they might take, since the strain of cancer (after it is identified) will determine this.  Statistically, the most common strain in relapses generally is the strain the individual had before, although lymphomas not uncommonly come back as other lymphomas, or even leukemia.

     

    I personally would ask them why they are wasting time guessing at things, rather than performing a biopsy.

     

    Best of luck to her, and a Blessed Christmas,

    max

    Follicular NHL Grade III

    Thank you Max - you are right - the relapse is FNHL grade III same as the first event. Grade III per the Onc is considered aggressive similar to the large B-cell (hence my confusion as well). I wanted to know from any other survivors of FNHL grade III/IV what their treatment regimen was.

    The oncologist has advised her to go for R-ICE followed by BEAM+ASCT. I have concerns with this treatment due to - high dose of chemo involved and the lack of options in an event there is another relapse. 

     

    I wanted to know more about the Bexxar/Zevelin therapies - is there a possibility of a SCT in an event of a relapse after Bexxar/Zevelin or is the bone marrow compromised with this?

     

    Thanks Max - hope you had a good christmas. I am looking forward to a good new year in remission for my mom. 
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #4
    dowgirl said:

    Follicular NHL Grade III

    Thank you Max - you are right - the relapse is FNHL grade III same as the first event. Grade III per the Onc is considered aggressive similar to the large B-cell (hence my confusion as well). I wanted to know from any other survivors of FNHL grade III/IV what their treatment regimen was.

    The oncologist has advised her to go for R-ICE followed by BEAM+ASCT. I have concerns with this treatment due to - high dose of chemo involved and the lack of options in an event there is another relapse. 

     

    I wanted to know more about the Bexxar/Zevelin therapies - is there a possibility of a SCT in an event of a relapse after Bexxar/Zevelin or is the bone marrow compromised with this?

     

    Thanks Max - hope you had a good christmas. I am looking forward to a good new year in remission for my mom. 
    Strategy

    Dowgirl,

    You are thinking strategically and long-term which is, in my opinion, a good thing. I know a few regulars here underwent R-ICE, which I have heard is a pretty harsh regimine.  The docs, or a little narrowly focused Google research, out to answer the question "Can R-ICE Chemo be followed by Stem Cell Transplantation ?"   I suspect that the patient's age and general health will be areas of concern.

    I hope this leads you to some firm answers. I had a nice Christmas here in the "Sunny South," although it has been windy and freezing !  I honestly foucsed on firerplace hardware for Christmas gifts! 

    May you be blessed with good news soon !

     

    max

    .

  • Unknown
    Unknown
    #5
    dowgirl said:

    Follicular NHL Grade III

    Thank you Max - you are right - the relapse is FNHL grade III same as the first event. Grade III per the Onc is considered aggressive similar to the large B-cell (hence my confusion as well). I wanted to know from any other survivors of FNHL grade III/IV what their treatment regimen was.

    The oncologist has advised her to go for R-ICE followed by BEAM+ASCT. I have concerns with this treatment due to - high dose of chemo involved and the lack of options in an event there is another relapse. 

     

    I wanted to know more about the Bexxar/Zevelin therapies - is there a possibility of a SCT in an event of a relapse after Bexxar/Zevelin or is the bone marrow compromised with this?

     

    Thanks Max - hope you had a good christmas. I am looking forward to a good new year in remission for my mom. 
    R-ICE is tough..

    I'm in the middle of it right now... (been on a break for 3 weeks now, so I can say it's doable.. nervous about next round & ASCT though.)

     

    I've never heard this, but after the R-ICE & BEAM+ASCT there are no other options? Yikes! This crap had better work Cool

     

    I haven't heard much of Bexxar-Zevelin.. maybe someone will have an answer for you.. or you can ask doc/let us know your findings? Best wishes to your Mom!

  • dowgirl
    dowgirl Member Posts: 13
    #6
    unknown said:

    R-ICE is tough..

    I'm in the middle of it right now... (been on a break for 3 weeks now, so I can say it's doable.. nervous about next round & ASCT though.)

     

    I've never heard this, but after the R-ICE & BEAM+ASCT there are no other options? Yikes! This crap had better work Cool

     

    I haven't heard much of Bexxar-Zevelin.. maybe someone will have an answer for you.. or you can ask doc/let us know your findings? Best wishes to your Mom!

    Follicular?

    Dear Hiccup - is your treatment regimen for grade iii F-NHL?  Asct works for most. Keep up the motivation. I wish you luck.

    i want to hear from more members- although if you are not reading this post-I take it as a good sign that you are away on some fabulous vacation. Best wishes to all of you.

  • onlytoday
    onlytoday Member Posts: 609 Member
    #7

    Hi,

     

    I had Rituxan in 2010 for Stage IV MZNHL , Indolent.  In May of 2012 I relapsed (again Indolent) and had 6 months of Bendamustine (Treanda) with Ofatumumab.  Got GREAT results and am currently in a partial remission!  I always get a second (or third) opinion.  I trust all of my doctors- but this stuff is truly an art form! 

     

    Best of luck with everything!

     

  • Unknown
    Unknown
    #8
    onlytoday said:

    Hi,

     

    I had Rituxan in 2010 for Stage IV MZNHL , Indolent.  In May of 2012 I relapsed (again Indolent) and had 6 months of Bendamustine (Treanda) with Ofatumumab.  Got GREAT results and am currently in a partial remission!  I always get a second (or third) opinion.  I trust all of my doctors- but this stuff is truly an art form! 

     

    Best of luck with everything!

     

    Would you mind sharing what symptoms you experienced to know you were relapsed?

  • onlytoday
    onlytoday Member Posts: 609 Member
    #9
    unknown said:

    Would you mind sharing what symptoms you experienced to know you were relapsed?

    symptoms

    GKH,

     

    I again (just like at original dx) felt tired and just off.  Not myself.  No night sweats- some itching.  I had cut down to part time work and found that I was still exhausted all the time.  My blood work didn't show much except elevated IGM and Hemaglobin was low.  Had another bone marrow biopsy and that told them what they needed to know.

     

    Hope this helps. 

  • Unknown
    Unknown
    #10
    dowgirl said:

    Follicular?

    Dear Hiccup - is your treatment regimen for grade iii F-NHL?  Asct works for most. Keep up the motivation. I wish you luck.

    i want to hear from more members- although if you are not reading this post-I take it as a good sign that you are away on some fabulous vacation. Best wishes to all of you.

    not follicular

    Hi Dowgirl,

    My regimen is for grade III DLBCL, so I'm sure things are different. I did ask my oncologist on Friday, and he said that there are usually other creative options to be had if ASCT doesn't do the job. I guess they will try anything as long as you're up for it-- I'm sure there may be other options out there for F-NHL, but it's if the doctor is willing to try.

    I went with the ASCT because it was either that or radiate my liver, which I couldn't find a radiation oncologist that would consider it. I know that it's possible for any treatment option to fail, but, according to my onc, failing an ASCT doesn't render one incapable of futher treatment.. it's mostly your general health that will exclude you from certain chemo treatments, etc.

    It looks like there are many avenues for your mom.. I sure wish I could tell you the right one! I hope she is doing well!!

  • dowgirl
    dowgirl Member Posts: 13
    #11
    onlytoday said:

    symptoms

    GKH,

     

    I again (just like at original dx) felt tired and just off.  Not myself.  No night sweats- some itching.  I had cut down to part time work and found that I was still exhausted all the time.  My blood work didn't show much except elevated IGM and Hemaglobin was low.  Had another bone marrow biopsy and that told them what they needed to know.

     

    Hope this helps. 

    Symptoms

    GKH - my mum is symptomless for grade iiia fNHL. 

    Onlytoday - any idea how different the therapies are for relapsed MZNHL vs. FNHL ?

    Onc mentioned recently that FNHL at grade III is very similar to DLBCL. 

    Very confused .....

  • onlytoday
    onlytoday Member Posts: 609 Member
    #12
    dowgirl said:

    Symptoms

    GKH - my mum is symptomless for grade iiia fNHL. 

    Onlytoday - any idea how different the therapies are for relapsed MZNHL vs. FNHL ?

    Onc mentioned recently that FNHL at grade III is very similar to DLBCL. 

    Very confused .....

    MZNHL Vs FNHL

    Dowgirl,

     

    The treatments are almost identical.  MZNHL is much rarer and due to research restraints the docs rely on info from FNHL research because the Indolent of each are so similar. However, I have truly found that no disease is the same and no treatment regimens are the same.  It's all very individualized.  My best course of action has been to share info here and elsewhere and also read alot from RELIABLE sources (Mayo Clinic, etc) - not focus on statistics as they are from old data- and to always get a second opinion.  And... to be in a positive frame of mind as much as possible.  This type of cancer is very treatable.  It takes a bit to wrap your head around it but it is something that you can live with- for a long time.  But the beginnng part of the journey is very confusing and scary.  I'm glad you found this site- the people here are awsome and a weath of first hand knowledge.  Others will probably be joining our discussion as time goes on...

    I hope you get answers about your Mom soon. 

    All the best

     

     

     

     

     

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