Has anyone had rEPOCH cycles for DLBCL ?

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  • Tlj_1979
    Tlj_1979 Member Posts: 4
    #42
    1 day at a time said:

    Good luck to you

    Hi Bernie,

     

    I sure hope your chemo is finished.  Nasty stuff we live through!  I had my CT/PET last Wednesday, and Saturday my Dr called me with the good news that it was a "normal" scan.  No signs of cancer, in complete remission.  Strangely, it did show a fractured rib that I didn't know about. I had a bad fall 6 weeks ago so it must have happened then.  My husband and I know that under these circumstances, hearing the word remission was the good news we wanted.  So many people when I tell them, innocently say things like, great, now your life is back to normal. You can put this behind you, etc.  To a point I agree, however, I also know that there's a little monkey on my shoulder, who is always going to be wondering if it will recur.  I hope with each passing day it gets easier to not think about it.  I'm ecstatic that I am in remission, so I'm riding that and enjoying lots of lunches out with friends to celebrate. I had my first Rituxan maintenance infusion yesterday.  Compared to chemo it's a breeze.  It took about 5 hours in the chair, but I slept through much of it it (thanks to Benadryl), and felt no ill effects afterwards or today. That will happen every 8 weeks for the next 2 years.  If it keeps away a relapse, I'm all for it!  In my case there was never any discussion of radiation, due to the nature of my cancer, so I sympathize with you if they suggest that you need it. That would be a tough decision I'm sure. Maybe a 2nd opinion would be helpful.

    Wishing you all the best!

    Remember to reduce the lorazepam gradually!

    My mom-r-epoch

    one day at a time, 

    i posted here awhile back regarding my mom.. She also has the double protein expression if bcl2 and myc that you have.. Anyways, she finished up 6 rounds of r-epoch On August 18.. She had a clean scan after round 3 and we are waiting for her next scan in about 2 weeks.  It seems in my moms case they are likely going to move on to stem cell transplant if her scan is clear. I'm wondering, did your doc present you with options at the end of treatment and rituxin maintenance  was your choice or was that the docs recommendation?  I'm just wondering what to expect as we move forward. I wonder how significant the double expression is when being treated with r-epoch. Also sonce she went into remission early on, is a stem cell even necessary.. So many uncertainties!!

    my mom is doing well- tired, anemic but otherwise good. 

    Wishing you all the best!

    tricia

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #43
    Tlj_1979 said:

    My mom-r-epoch

    one day at a time, 

    i posted here awhile back regarding my mom.. She also has the double protein expression if bcl2 and myc that you have.. Anyways, she finished up 6 rounds of r-epoch On August 18.. She had a clean scan after round 3 and we are waiting for her next scan in about 2 weeks.  It seems in my moms case they are likely going to move on to stem cell transplant if her scan is clear. I'm wondering, did your doc present you with options at the end of treatment and rituxin maintenance  was your choice or was that the docs recommendation?  I'm just wondering what to expect as we move forward. I wonder how significant the double expression is when being treated with r-epoch. Also sonce she went into remission early on, is a stem cell even necessary.. So many uncertainties!!

    my mom is doing well- tired, anemic but otherwise good. 

    Wishing you all the best!

    tricia

    Options

    Hi Tricia,

    It is a very positive thing that your mom responded so well and so rapidly.

    I am NOT very familiar with DLBCL, but I would ask her oncologist the same questions you asked us, and even ask for a referral for a second opinion regarding follow-on treatment options.  Her current doctor should take no offence at all at this request.   Depending on where she is receiving treatment, a second opinion may be easy to get, or you may have to go outside of the network she is currently in; this will cost money for the second opinion, but most likely is well worth it.  It would be preferrable to have this opinion done by the time her next scan is performed. 

    Obviously, SCT may in fact be best for her, it is just wise to verify.  In a very general sense, from what I have read from several of the 'regulars' here and the International experts they have spoken to or read over the years, SCT is possibly overused in some cases, when lesser maintenance therapies might work as well, especially on older patients (I have no idea how old your mom is). 

    Anemia is treatable with IV infusions in most cases, a fact I learned when given such infusions myself.

    But again, this is a generality, and may not be true at all in your mom's specific circumstances.  This all requires a little research on your part.

    max

  • 1 day at a time
    1 day at a time Member Posts: 9
    #44
    Tlj_1979 said:

    My mom-r-epoch

    one day at a time, 

    i posted here awhile back regarding my mom.. She also has the double protein expression if bcl2 and myc that you have.. Anyways, she finished up 6 rounds of r-epoch On August 18.. She had a clean scan after round 3 and we are waiting for her next scan in about 2 weeks.  It seems in my moms case they are likely going to move on to stem cell transplant if her scan is clear. I'm wondering, did your doc present you with options at the end of treatment and rituxin maintenance  was your choice or was that the docs recommendation?  I'm just wondering what to expect as we move forward. I wonder how significant the double expression is when being treated with r-epoch. Also sonce she went into remission early on, is a stem cell even necessary.. So many uncertainties!!

    my mom is doing well- tired, anemic but otherwise good. 

    Wishing you all the best!

    tricia

    Dbl Expression

    Hi Tricia,

    I'm glad to hear your mom seems to be doing really well.  I wish you all the best on her next scan.  It's very stressful waiting for the results, so hang in there.  My CT/PET scan 7 weeks after chemo ended was clear, so it is great to officially be in remission.  I can only hope it lasts.  I did have my stem cells harvested after my 3rd treatment, when I had a clean bone marrow biopsy.  My doctor said he wanted to harvest then to have a contingency plan in place, in case I relapse.  I am not having the stem cell transplant unless I relapse.  The rituxan maintenace I am having every 8 weeks supposedly lessens the chance of a relapse.  My understanding is that I would only be able to get Ibrutinib in a clinical trial if I relapse, I don't think for DLBCL it is available in first-line defense treatment.  It is hard to get a clear understanding of all these variables.  It is very complicated and each sub-type just a little bit different in terms of which treatments are best, etc.  It is exhausting and not what anyone wants to spend their time having to figure out.  Especially when the chemo knocks the wind out of your sails!  All the best to you and your mom.

     

    1 Day at a Time

  • oksamit
    oksamit Member Posts: 1
    #45
    JW01 said:

    outpatient vs inpatient
    Hi all.

    My husband is recently diagnosed with b-cell lymphoma, unclassifiable with Burkitt, stage 3. His oncologist at Sloan Kettering is telling us that outpatient is how they do EPOCH treatment there, starting from DAY 1!

    Has anyone gone through EPOCH+R as 100% outpatient treatment? The daily trip to/from the infusion center sounds stressful already. Granted that the cancer center is probably #1 cancer center, and they supposedly have the best everything for cancer treatment, is outpatient really manageable for EPOCH+R? And What about CNS prophylaxis? Did anyone get it during EPOCH?

    As we found out that two other hospitals in NYC (Columbia and Mount Sinai) do EPOCH as inpatient treatment. I am really concerned about unexpected problems that may happen at home (or at work since his doctor thinks he should continue working ...)

    What is your opinion/experience on this? Thanks in advance!

    inpatien was better for me

    I had my R EPOCH treatment in Mount Sinai inpatient 2013-2014.I was offered outpatient infusion with nirse coming to my house and setting up iv but i refused. It was correct decision. I had pleanty problems with airbubbles in iv system plus underskin leakage of medicaiton with antidote injections and iv, so i would recommend people to do inpatient if they can

  • NJ Bob
    NJ Bob Member Posts: 7 Member
    #46
    R_EPOCH

    I am 78 years old.  Today I go in for my 5th session of r-epoch and will do the sixth next. My pet scan shows no cancer and the

    Dr. says full remission. My question.  Is radiation necessary? The Dr. is recommending around 30 treatments after r-epoch, and

    I'm very hesitant and aprenhensive about radiation. I had the cancer in lymph nodes in neck.

  • NJ Bob
    NJ Bob Member Posts: 7 Member
    edited September 2017 #47
    Radiation after R-EPOCH treatment

    Has anyone had radiation after six r-epoch sessions? 

  • PBL
    PBL Member Posts: 366 Member
    #48
    NJ Bob,

    NJ Bob,

    Sorry no one has answered your question yet. I am not in a position to answer it myself, but I would suggest this:

    You might get more visibility by starting your own thread with a title such as the one you gave to your latest post, as this is a rather old thread, with the last post already over two years ago, and your question is not so much about R-EPOCH, which was its initial topic.

    I hope this helps.

    PBL

  • NJ Bob
    NJ Bob Member Posts: 7 Member
    #49
    PBL said:

    NJ Bob,

    NJ Bob,

    Sorry no one has answered your question yet. I am not in a position to answer it myself, but I would suggest this:

    You might get more visibility by starting your own thread with a title such as the one you gave to your latest post, as this is a rather old thread, with the last post already over two years ago, and your question is not so much about R-EPOCH, which was its initial topic.

    I hope this helps.

    PBL

    Thanks PBL, I'll try that.

    Thanks PBL, I'll try that.

  • Nicholas25
    Nicholas25 Member Posts: 7
    #50
    Radiation after R-EPOCH.

    I AM 5 weeks from last R-EPOCH treatment. Dr. Has not said anything about radiation. My blood numbers are up so not too much worry about germs but am still careful. My dr. Says I will get another scan in January. Feeling tired and have some soreness around my body.  I guess it just takes time.

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