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  • Non-Hodgkin's DLBCL treatment

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    Old 02-26-2020, 07:04 PM   #61
    Sparkle Lolie
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    Re: DLBCL treatment

    Just because this week hasn't been eventful enough already, I now have a blood clot in my right arm. Holy cow do those things hurt.
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    DLBCL diagnosed December 2019
    R-CHOP 14 started 16 January 2020
    R-CHOP completed 24 April 2020

     
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    Old 02-27-2020, 07:31 AM   #62
    PBLz
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    Re: DLBCL treatment

    Sorry to read your latest news… I suppose you've got either a PICC line or a port for your chemo. Any particular cause for that clot? Have they been constantly using the same arm for blood draws?
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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 02-27-2020, 11:25 AM   #63
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Sorry to read your latest news… I suppose you've got either a PICC line or a port for your chemo. Any particular cause for that clot? Have they been constantly using the same arm for blood draws?

    No port or PICC. They cannulate my forearm each time I have chemo.

    When I was in hospital, the cannula was in my left arm for most of the time so they were using the right elbow for blood draws. The cannula was re-sited to the right elbow on Sunday, so it was being used for my IV drugs the last two days I was in hospital and for blood draws the rest of the time.

    They had trouble placing a cannula yesterday due to how often the usual sites have been used recently. In the end, they had to use ultrasound to guide them.Those veins have tiny little micro-clots which prevent them from being able to advance the cannula. Those will apparently disappear on their own.
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    DLBCL diagnosed December 2019
    R-CHOP 14 started 16 January 2020
    R-CHOP completed 24 April 2020

     
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    Old 02-27-2020, 11:43 AM   #64
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    Re: DLBCL treatment

    Well, it's a pity! Haven't they offered to fit you with one of those vein-sparing devices? Chemo can do quite a job on your veins, especially when they are already being poked every few days for blood draws…

    It may not be too late even at this point, with you being only half-way through.
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 03-04-2020, 07:35 AM   #65
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    Re: DLBCL treatment

    Hi Just wondering how you are and has treatment gone ahead?

     
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    Old 03-04-2020, 11:35 AM   #66
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by johnr11 View Post
    Hi Just wondering how you are and has treatment gone ahead?

    Next treatment has been delayed a full cycle, so it won't happen until next week. As far as I know they will still do 6 cycles.

    My consultant did mention the possibility of putting in a PICC, but the two week break should make this unnecessary. I'm not fond of the idea given how much trouble I have keeping a normal cannula dry, and the infection risk doesn't thrill me either.

    Blood clot is slowly resolving but I can't see it being totally gone in a few days so I expect I will need to continue the Clexane until my next chemo.
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    R-CHOP 14 started 16 January 2020
    R-CHOP completed 24 April 2020

     
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    Old 03-04-2020, 11:53 PM   #67
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    Re: DLBCL treatment

    Hi sounds like you are on the roller coaster ride now which tends to go with diagnosis and treatment, hopefully that clot will sort itself and it will be a clear run in to the last treatment. In the UK they don't use lines unless really necessary so, so long as they keep switching arms you should manage to get those last 2 rounds and to a degree I found the were nurses who could get a vein straight away and others struggled, especially post treatment when I went to my check up clinics. At times you feel like a pin cushion.

     
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    Old 03-13-2020, 07:50 PM   #68
    Sparkle Lolie
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    Re: DLBCL treatment

    Had my 4th R-CHOP infusion on Thursday. I'm glad to have that one done in case we do have to change protocols.

    I was due to see my consultant yesterday but they've cancelled in person appointments for the moment, so she will be checking in with me by phone.

    They're trying to keep people away from the hospital as much as possible so I had a follow up ultrasound done on the DVT at an external provider yesterday. I don't know the results of that yet, and it's hurting again following the u/s so I'm a little concerned, but I should have heard from my team if there was any reason to worry.

    I'm trying to avoid doing things which will aggravate the hand-foot syndrome as much as I can this cycle. We'll just have to see if it makes any difference.
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    R-CHOP completed 24 April 2020

     
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    Old 03-14-2020, 12:58 AM   #69
    johnr11
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    Re: DLBCL treatment

    Hope the dvt pain is more discomfort from the procedure rather than something sinister, having the 4th done is a big step towards the end of treatment, fingers crossed for an uneventful couple of weeks and that treatment goes smoothly despite the threats from covid 19.

     
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    Old 03-14-2020, 01:33 AM   #70
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    Re: DLBCL treatment

    Hi,
    I second John's remarks and wishes.
    I will add - as previously said - that chemotherapy in itself is aggressive stuff, so that even if the dvt has resolved (and I hope it has), your veins may remain more sensitive than before treatment. This will fade away after treatment is completed and blood draws become fewer and farther between.
    Are you keeping on the 14-day schedule, or have you been put on a slower, 21-day pace for the remainder of treatment?
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 03-14-2020, 01:48 AM   #71
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Hi,
    I second John's remarks and wishes.
    I will add - as previously said - that chemotherapy in itself is aggressive stuff, so that even if the dvt has resolved (and I hope it has), your veins may remain more sensitive than before treatment. This will fade away after treatment is completed and blood draws become fewer and farther between.
    Are you keeping on the 14-day schedule, or have you been put on a slower, 21-day pace for the remainder of treatment?
    21 days.

     
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    Old 03-14-2020, 04:21 AM   #72
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    Re: DLBCL treatment

    That's good - the extra week should enable you to recuperate better in between those last two infusions.
    Have you been instructed on how to manage the hand-foot syndrome? Just curious…
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 03-14-2020, 01:50 PM   #73
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    That's good - the extra week should enable you to recuperate better in between those last two infusions.
    Have you been instructed on how to manage the hand-foot syndrome? Just curious…
    Lots of moisturiser which contains urea and trying to avoid things known to aggravate it as much as possible. I was the one who suggested it, although my consultant said that she would have because trying to get that fourth cycle of R-CHOP was preferable.

    Removing the offending drug is the only way to prevent it, though. Otherwise it's no exposure to temperatures above lukewarm and minimal friction on hands and feet, which is extremely difficult to follow.

     
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    Old 03-14-2020, 02:25 PM   #74
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    Re: DLBCL treatment

    Watch out with the urea - when used daily it can actually end up irritating your skin further. My dermatologist recommended it, but after a while I had to stop using it due to worsening of my persistent dry skin.
    One thing I did throughout treatment, that you may want to try, is alternately using the greasiest possible creams/ointments (vaseline- or paraffin-based formulas, dexpanthenol- or hyaluronic acid-rich), in a thick layer at bedtime, with a pair of cotton gloves and socks on top of that to avoid buttering my sheets … When I had crevices, I would cut out a reasonably snug-fitting finger from a disposable glove, slip it over an even thicker layer of ointment, and maintain it in place with a bit of surgical tape. I found this alleviated the pain, kept the area clean and helped speed up healing. However, it was necessary to keep that going for a couple of days after it seemed to have closed, otherwise it would reopen right away.
    I hope this helps.
    __________________
    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 03-14-2020, 03:11 PM   #75
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Watch out with the urea - when used daily it can actually end up irritating your skin further. My dermatologist recommended it, but after a while I had to stop using it due to worsening of my persistent dry skin.
    One thing I did throughout treatment, that you may want to try, is alternately using the greasiest possible creams/ointments (vaseline- or paraffin-based formulas, dexpanthenol- or hyaluronic acid-rich), in a thick layer at bedtime, with a pair of cotton gloves and socks on top of that to avoid buttering my sheets … When I had crevices, I would cut out a reasonably snug-fitting finger from a disposable glove, slip it over an even thicker layer of ointment, and maintain it in place with a bit of surgical tape. I found this alleviated the pain, kept the area clean and helped speed up healing. However, it was necessary to keep that going for a couple of days after it seemed to have closed, otherwise it would reopen right away.
    I hope this helps.
    I have E-45, which is paraffin-based, so I will give this a try. I need to moisturise way more often than the 2-3 times a day I'm using the urea cream anyway. I'm also using heel balm cream. I'd bought a few thick moisturisers just before the hand-foot syndrome flared up.

     
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