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  • Non-Hodgkin's DLBCL treatment

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    Old 02-22-2020, 12:15 PM   #46
    PBLz
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    Re: DLBCL treatment

    Well, I'm keeping my fingers crossed for you… Do let us know how things go.
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    Primary bone fNHL - dx at 52, Feb. 2016
    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 02-23-2020, 12:14 AM   #47
    johnr11
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    Re: DLBCL treatment

    Hi hope tomorrow brings some answers and resolutions when you see the consultant, normally all those issues are manageable and a delay to your next treatment may be wise.

     
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    Old 02-23-2020, 12:36 AM   #48
    Sparkle Lolie
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    Re: DLBCL treatment

    My neutrophils are back so I'm out of iso. Now to see what the echo shows tomorrow.

     
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    Old 02-23-2020, 05:58 AM   #49
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    Re: DLBCL treatment

    Good to read that update! Now, do keep us posted - I hope the echo brings nothing but great news.
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    Primary bone fNHL - dx at 52, Feb. 2016
    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 02-23-2020, 02:18 PM   #50
    Sparkle Lolie
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    Re: DLBCL treatment

    If the echo is OK and my bloods are stable, they are still planning on going ahead with this week's chemo cycle. I'm not sure how I feel about that. I might need to talk to them about it.

     
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    Old 02-24-2020, 12:08 AM   #51
    PBLz
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    Re: DLBCL treatment

    They may have some good reason to keep the pace - however, you are entitled to hearing (and understanding) the therapeutic logic behind that. I might ask the consultant hematologist what difference in outcome they would expect to see if you were to delay the next infusion, or even change to a three-week cycle for the remainder of treatment. By the way, have you had a chance to ask the consultant about the neuropathy?

    Be sure to voice your concerns so they can address them clearly.

    Kind regards,
    PBL
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 02-24-2020, 12:55 AM   #52
    johnr11
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    Re: DLBCL treatment

    I was on a 21 day cycle and had 3 of mine delayed, 2 due to neutrophil counts below 1 and the last one due to shingles and it made no difference to my outcome and the consultant was not concerned about delaying. He explained if they did delay treatment I would probably become ill which would only lead to delays for other reasons.

     
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    Old 02-25-2020, 11:30 AM   #53
    Sparkle Lolie
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    Re: DLBCL treatment

    Out of hospital now. None of the tests they ran to determine the exact nature of the infection showed anything, so it remains a mystery bug.

    Echo was fine so there is no need to alter the course of treatment because of cardiotoxicity.

    The "neuropathy" is actually something called hand-foot syndrome (palmar-plantar erythrodysesthesia). The next cycle is being delayed until next week and they may swap out one of the current drugs for another. My consultant is going to talk to some lymphoma specialists and let me know when I see her for follow up on Friday.

    They have said from the outset that there is no problem with delaying a cycle for a week if necessary. As I only have 3 R-CHOP cycles left I expect that they will try to keep the gap between 4 and 5 and 5 and 6 at 14 days but it will all depend on how things go with cycle 4.

    Now that I know bit more about what was actually happening, I'm inclined to power through if possible. A lot of the effects I suffered are preventable with rigid management.
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    R-CHOP 14 started 16 January 2020
    R-CHOP completed 24 April 2020

     
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    Old 02-25-2020, 11:50 AM   #54
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    Re: DLBCL treatment

    A positive update and it sounds like they are keeping you well informed which does not always happen, may be they plan to change the vincristine for vinblastin years ago it was not considered as bad when it comes to neuropathy

     
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    Old 02-25-2020, 12:02 PM   #55
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by johnr11 View Post
    A positive update and it sounds like they are keeping you well informed which does not always happen, may be they plan to change the vincristine for vinblastin years ago it was not considered as bad when it comes to neuropathy
    From what I can find online, doxorubicin is the more likely culprit. Dose is one of the risk factors, so they might try reducing that for cycle 4 and seeing if the problem persists.

     
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    Old 02-25-2020, 12:17 PM   #56
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    Re: DLBCL treatment

    Hmmm… interesting! I don't remember your mentioning any redness or swelling accompanying the pain in your feet.
    As mentioned before, my hematologist told me that he didn't mind stopping the Vincristine as it wasn't the most essential drug in my R-CHOP cocktail at least… Then again, I had such severe neurological symptoms from the first infusion that I believe there really was no other choice…
    Glad you're feeling better, at any rate. I hope all goes well for the rest of your treatment, and expect they'll be keeping an eye on you from now on.
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 02-25-2020, 12:30 PM   #57
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Hmmm… interesting! I don't remember your mentioning any redness or swelling accompanying the pain in your feet.

    Yeah, that really only happened in the last couple of days before I landed in hospital. The pain preceded the other symptoms by a few days, although I did have some peeling of my hands last cycle, but I put that down to "normal" chemo skin stuff.
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    R-CHOP 14 started 16 January 2020
    R-CHOP completed 24 April 2020

     
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    Old 02-25-2020, 12:45 PM   #58
    PBLz
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    Re: DLBCL treatment

    Quote:
    Originally Posted by Sparkle Lolie View Post
    I did have some peeling of my hands last cycle, but I put that down to "normal" chemo skin stuff.
    Yes, I guess we all more or less tend to assume whatever side effects we experience are just standard… I also have come to suppose that most of our doctors have little to no idea of what really goes on in between appointments…
    My guess is, they will probably ask more precise questions from now on.
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 02-25-2020, 02:11 PM   #59
    johnr11
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    Re: DLBCL treatment

    Quote:
    Originally Posted by Sparkle Lolie View Post
    From what I can find online, doxorubicin is the more likely culprit. Dose is one of the risk factors, so they might try reducing that for cycle 4 and seeing if the problem persists.
    From a quick look your research sounds right, I have seen people post about the redness but not the condition, we learn all the time, let us know how the consultation goes

     
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    Old 02-26-2020, 05:53 PM   #60
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    Re: DLBCL treatment

    Greetings,

    I know I am coming late to this post, but I just found you all today. First, hello PBL(z)! It is great to read that you remain in Remission!

    Sparkle Lolie, it sounds like you are managing these harsh treatments very well overall and I am glad that PBLz and johnr11 have been able to provide such awesome advice and support during this very difficult time. As you can see in my signature, I survived a fairly harsh and aggressive treatment plan to get to Remission. My first six rounds were on a 21 day cycle though and all in-patient (hospital), not a 14 day cycle like yours. I did have a one week delay after my second round because I spiked a fever and after being admitted to the hospital, they discovered I had acquired an infection in my PICC line. My treatments took about 5-1/2 months in total. If you have any questions, especially pertaining the the High Dose Methotrexate rounds, please feel free to ask. I am sure you have heard that the effects of the rounds are often cumulative. One of the most challenging for me was extreme fatigue over time. I know everyone's experience is a little unique, but I did find after getting through the 6 DA-R-EPOCH rounds that the High Dose Methotrexate rounds were most tolerable. Stay strong and as johnr11 mentioned earlier, do try to keep moving and walk as much as you can when you feel up to it. I did feel as though I was fighting a major war, but I did not feel brave. I felt like what you and PBLz expressed-I mean, really what is the alternative? The remission rate is pretty high for DLBCL especially if there is no CNS involvement. My top medical team recommended the two rounds of HD Methotrexate for consolidation, which is what it sounds like you and your team are planning. Glad you are out of the hospital and moving forward toward Remission!
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    6 rounds of DA-R-EPOCH, 2 rounds of High Dose Methotrexate, 11-Intra-thecal infusions of alternating Methotrexate and Cytarabine
    In Full Remission for two years now (since Feb 2018)

     
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