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  • Non-Hodgkin's DLBCL treatment

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    Old 04-24-2020, 03:10 AM   #91
    Sparkle Lolie
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    Re: DLBCL treatment

    R-CHOP done and dusted. It was an emotional experience walking out of the infusion centre today and putting my thumb print on their tree of life.

    Because Australia has done so well in flattening the covid-19 curve, my consultant has decided to go ahead with inpatient high dose methotrexate after all. This will involve two hospitalisations of 4-5 days a few weeks apart. The first should be in about 3 and a half weeks.

    Unfortunately, covid-19 has also led to a shortage of the drug I take for pneumonia prophylaxis. The oncology pharmacy didn't have it in stock and neither do any local community pharmacies. It's currently due to be back in stock on 3 May. I only have 3 doses left so that's cutting it fine.

    I won't be having a PET until after the high dose methotrexate. Normally they would do one in a few weeks but my consultant is happy to wait because of my strong early response to chemo. So unless something changes dramatically, I can put scanxiety out of my mind for a while.

     
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    Old 04-24-2020, 04:53 AM   #92
    PBLz
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    Re: DLBCL treatment

    Congratulations on graduating from R-CHOP! What a lovely idea - a tree of life covered in thumb prints… We didn't have any particular ritual in the hospital where I am treated and followed-up :-(

    Quote:
    Originally Posted by Sparkle Lolie View Post
    Unfortunately, covid-19 has also led to a shortage of the drug I take for pneumonia prophylaxis. The oncology pharmacy didn't have it in stock and neither do any local community pharmacies. It's currently due to be back in stock on 3 May. I only have 3 doses left so that's cutting it fine.
    If there's no Resprim, maybe they could consider Atovaquone (which is what I had as I have a history of allergic reactions to a number of antibiotics) until they have stocked up again?

    Do let us know how the high-dose Methotrexate experience goes, and keep us updated on your Imaging results and progress to recovery!

    Take care,
    PBL
    __________________
    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 04-24-2020, 11:28 AM   #93
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    What a lovely idea - a tree of life covered in thumb prints… We didn't have any particular ritual in the hospital where I am treated and followed-up...
    I thought it was a better idea than ringing a bell, especially as a couple of other patients there yesterday have no more options left.

    I presume they will prescribe an alternative prophylactic if Resprim doesn't come back into stock quickly. I expect they weren't aware that community pharmacies have none either.

    Thank you for your good wishes. I expect I will be doing a lot of bitching about the next phase - it sounds brutal.

     
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    Old 04-24-2020, 02:46 PM   #94
    PBLz
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    Re: DLBCL treatment

    Quote:
    Originally Posted by Sparkle Lolie View Post
    I expect I will be doing a lot of bitching about the next phase - it sounds brutal.
    Hopefully, now that you've made it through R-CHOP, you'll just breeze through the Methotrexate. And if not, well, we're here for sympathy!

    Looking forward to reading your news.

    PBL
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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 04-24-2020, 11:19 PM   #95
    johnr11
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    Re: DLBCL treatment

    Congratulation on finishing rchop, its a nice feeling knowing you don't have to go back, hopefully the methotrexate will be straight forward.
    Love the idea of the of the thumb print on the tree of life, back in 2009 the was no bell on the day ward where I had treatment, though the his now, how things change.

    give yourself time and permission to recover and if you have a bad day know its ok and the norm,

     
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    Old 05-21-2020, 01:52 AM   #96
    PBLz
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    Re: DLBCL treatment

    Hi Lolie,

    I assume this week is methotrexate #1. Thinking of you, hoping you're in good shape, and that you find this new experience easy enough.

    Take care,
    PBL
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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 05-21-2020, 07:04 PM   #97
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Hi Lolie,

    I assume this week is methotrexate #1. Thinking of you, hoping you're in good shape, and that you find this new experience easy enough.

    Take care,
    PBL
    I go into hospital for the methotrexate this coming Monday. My anxiety about it is through the roof at the moment and I have to keep reminding myself that if it's really awful no-one can force me to have a second round.

    I will probably ask them to bring the PET forward. Not knowing how successful the R-CHOP was is quite stressful and another couple of months is a long time to be in limbo.

     
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    Old 05-22-2020, 05:57 AM   #98
    PBLz
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    Re: DLBCL treatment

    Quote:
    Originally Posted by Sparkle Lolie View Post
    I go into hospital for the methotrexate this coming Monday. My anxiety about it is through the roof at the moment and I have to keep reminding myself that if it's really awful no-one can force me to have a second round.
    I haven't had a taste of methotrexate myself, but I've been in the same room as patients who were getting it, and never heard anyone complain... Hopefully, you'll be just fine!

    Quote:
    Originally Posted by Sparkle Lolie View Post
    I will probably ask them to bring the PET forward. Not knowing how successful the R-CHOP was is quite stressful and another couple of months is a long time to be in limbo.
    I understand! I think we're all eager to know if treatment has been successful. However, if I remember correctly, it's not likely that they will move the PET up a notch, as they need to wait for a minimum amount of time while your marrow recovers - otherwise you might get a false positive (and no one wants that!).

    Will be thinking of you next week then! Do keep us posted, ok?

    PBL
    __________________
    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 05-29-2020, 09:10 PM   #99
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    I haven't had a taste of methotrexate myself, but I've been in the same room as patients who were getting it, and never heard anyone complain... Hopefully, you'll be just fine!



    I understand! I think we're all eager to know if treatment has been successful. However, if I remember correctly, it's not likely that they will move the PET up a notch, as they need to wait for a minimum amount of time while your marrow recovers - otherwise you might get a false positive (and no one wants that!).

    Will be thinking of you next week then! Do keep us posted, ok?

    PBL
    Got home yesterday. What a tedious experience. I'm glad I only have to repeat it once, although two weeks feels like it's far too early to go through it again.

    I see my haemotologist for follow up in few days so hopefully I will find out then exactly when she plans to do a PET.

     
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    Old 05-30-2020, 02:48 AM   #100
    PBLz
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    Re: DLBCL treatment

    Make the best of that recovery time, then!

    Just one more round, and you'll find out what your prize is.

    Fingers crossed!
    __________________
    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 06-03-2020, 01:44 PM   #101
    Sparkle Lolie
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    Re: DLBCL treatment

    Saw my haemotologist yesterday and PET will be about 6 weeks after the next round of high dose methotrexate, so around the end of July.

    I'm adding some information about the high dose methotrexate protocol as it's pretty brutal and it might help others to know what they're in for if they're facing it in the future. I was given high dose methotrexate and intrathecal methotrexate because one of my masses was in my sinus cavity, putting me at higher risk of developing CNS involvement.

    I was admitted to the ward on a Monday afternoon following a rituximab infusion in the morning. Around 6pm they started running fluids and bicarb. From that point on, every wee I did (and that was a lot) was measured for volume and PH. Once the PH was high enough, the methotrexate was started - around midday on the Tuesday. The methotrexate ran for roughly 7 hours and I had two cannulas until it was finished.

    Once the methotrexate was finished, they started giving me folate every 6 hours. I had blood tests to measure my methotrexate level on the Wednesday, Thursday and Friday morning and I couldn't be discharged until my level was 50 or less. It was 5600 on the Wednesday, 112 on the Thursday, and 30 on the Friday. The methotrexate level had to be processed at another hospital and didn't come back until late afternoon each day, so there was a lot of waiting around for it to come back.

    I did retain fluid so I was given lasix for that and I was given mouthwash and antibiotics for mucositis - these were both continued for a few days after discharge. I had nausea for the first couple of days after the methotrexate and was given medication for that as well.

    I feel mostly well again now, although I still have some residual numbness in my fingers and feet.

    My haemotologist was running early today so I had a chance to ask her about a couple of things I've been wondering about.

    She said it will take about a year for my immune system to recover from chemotherapy.

    I asked her how high dose methotrexate works to prevent CNS involvement and it basically doesn't. Although it's often referred to as a prophylactic measure, it's given in case there is undetected CNS involvement because 1) the standard chemotherapy drugs don't cross the blood brain barrier and 2) the prognosis for lymphoma with CNS involvement is so poor that it is better to treat as though it exists than assume it doesn't.
    __________________
    DLBCL diagnosed December 2019
    R-CHOP 14 started 16 January 2020
    R-CHOP completed 24 April 2020
    HD-MTX completed 29 June 2020
    PET 5 August 2020 shows no remaining signs of DLBCL
    Adenocarcinoma of lung confirmed 8 September 2020

     
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    Old 06-03-2020, 02:01 PM   #102
    johnr11
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    Re: DLBCL treatment

    the finish line is close now so hang in and you will soon be able to put some of this behind you and great explanation of the procedure

    John

     
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    Old 06-03-2020, 02:11 PM   #103
    PBLz
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    Re: DLBCL treatment

    Glad to read that you're doing well!

    Very clear account on high-dose methotrexate. It might be worthwhile to add that this is not for all lymphoma cases - only for specific presentations/tumor sites which are more at-risk for CNS involvement.

    Do keep us posted as you (hopefully) turn the last page.
    __________________
    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 06-03-2020, 05:44 PM   #104
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    It might be worthwhile to add that this is not for all lymphoma cases - only for specific presentations/tumor sites which are more at-risk for CNS involvement.
    Done.
    __________________
    DLBCL diagnosed December 2019
    R-CHOP 14 started 16 January 2020
    R-CHOP completed 24 April 2020
    HD-MTX completed 29 June 2020
    PET 5 August 2020 shows no remaining signs of DLBCL
    Adenocarcinoma of lung confirmed 8 September 2020

     
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    Old 06-15-2020, 12:40 PM   #105
    Sparkle Lolie
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    Re: DLBCL treatment

    In hospital now for my second round of high dose methotrexate.

    I asked about my LDH yesterday, and it's within normal range. That's a hopeful sign.

     
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