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  • Non-Hodgkin's DLBCL treatment

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    Old 02-09-2020, 01:04 PM   #31
    PBLz
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    Re: DLBCL treatment

    Yeah... These are some of the minor goodies that go with treatment… Not much to do about the runny nose but make sure you've got plenty of tissues ready!

    Regarding the mouth sores, they can be thrush, or either sort of herpes (shingles…). I would take pictures and show my hematologist (weird selfies, huh? - just picture someone getting their hands on your cellphone and flicking through your photo album ;-)) so he'd know what I was talking about. Small spoonfuls of ice cream come in handy at times like this. Also think of rinsing your mouth several times daily with a sodium bicarbonate solution - that's what they gave me, along with a non-alcoholic mouthwash. There are all sorts of "magic mouthwash" formulas (with anesthetics) out there, depending on the cause of your sores and the amount of pain you're in. If they're not too painful and resolve within a few days, you should do fine. Just expect them to be back with every cycle… I ended up also having the more "classic" version of shingles (on one shoulder) fifteen months after my last chemo infusion - one more good reason to document all such outbreaks!
    Hang in there, and remember that this is better than the alternative.
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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 02-09-2020, 01:39 PM   #32
    Sparkle Lolie
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    Re: DLBCL treatment

    Mouth feels much better today after being drowned in saline rinses and carb soda rinses yesterday. Most importantly, there are no new sores and the existing ones haven't gotten worse.

    I went to see my GP about it this morning but for some unknown reason they are closed until after lunch. I've left a message for someone from haemotology to call me back. I need to have pre-cycle blood work done tomorrow so they might want to take a quick look while I'm there.

    I am on a herpes prophylaxis drug, but I know such things often only reduce severity rather than preventing an episode altogether.

     
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    Old 02-09-2020, 03:28 PM   #33
    PBLz
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    Re: DLBCL treatment

    Well then, it sounds like good news if those sores are so easily tamed! Just keep doing the rinses to fend them off from now on. Yes, I too was on Valacyclovir prophylaxis - and maybe that spared me worse outbreaks than what I did get. I was no longer on it when I got the more typical cutaneous episode, and my hematologist put me back on prophylaxis after that.
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 02-14-2020, 12:33 PM   #34
    Sparkle Lolie
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    Re: DLBCL treatment

    Started cycle 3 on Thursday, so I will officially be half way through R-CHOP soon.

    I expected what hair I have remaining to fall out on Thursday night and yesterday but it didn't, which I found surprising. I wonder if Thursday's treatment was a lower dose or whether this is just a case of "expect the unexpected".

    I'm going to ask my consultant for a Zofran prescription next week. The prescribing restrictions on it are ridiculous, but I'm tired of nausea waking me up in the early hours of the morning the first few days of each cycle.

    I had a bit of a meltdown the other day for no particular reason. I expect it won't be the last. I felt a bit stupid because I know that I've had a pretty easy run with treatment so far with fairly mild and transient side effects.
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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 02-14-2020, 02:57 PM   #35
    PBLz
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    Re: DLBCL treatment

    Congratulations on approaching the halfway point! Are you due for some imaging soon?

    Nausea control is essential - I am surprised you haven't been getting Zofran up till now! what has your hematologist prescribed in the previous cycles? I remember I had Emend (Aprepitant) as well as Zofran, and still found myself throwing up without any prior notice in the last couple of cycles… Actually, I even suspected the Zofran (could no longer stand it by the end of treatment) and much preferred the Emend.

    Don't worry about getting emotional - as I've had occasion to say before, the whole process of being diagnosed with and treated for cancer is a rough rollercoaster ride. Just make sure you let your medical team know about that too.

    I would expect the remainder of your hair to fall off in the next couple of weeks. Mine still tried to grow in between infusions (so I never had a completely smooth egghead), but these were 21 days apart. I don't know if yours will have time to even try with only 14 days between rounds...
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 02-14-2020, 03:10 PM   #36
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Congratulations on approaching the halfway point! Are you due for some imaging soon?

    Nausea control is essential - I am surprised you haven't been getting Zofran up till now! what has your hematologist prescribed in the previous cycles? I remember I had Emend (Aprepitant) as well as Zofran, and still found myself throwing up without any prior notice in the last couple of cycles… Actually, I even suspected the Zofran (could no longer stand it by the end of treatment) and much preferred the Emend.
    .
    No imaging until after I've finished chemo. Apparently it's not reliable if done between cycles if you're on 14 days. I'm not sure whether they will wait until after I've had the consolidation rounds before doing a PET. I will ask my consultant that on Friday.

    I have Maxolon for nausea. It works OK in that it settles things down within 30 minutes but it doesn't actually prevent the nausea. For some stupid reason only 4 doses of Zofran can be prescribed per cycle for chemo here (it's different for radiotherapy) and only for nausea which occurs within the first 48 hours following treatment with cytotoxic drugs. I don't pretend to understand the logic, although such restrictions are always cost-driven in some way.
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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 02-14-2020, 04:20 PM   #37
    PBLz
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    Re: DLBCL treatment

    Hmmhhh… Yes, of course… Must have enough to go round. Metoclopramide is much cheaper, so, understandably, more easily prescribed. I couldn't have any though, as it was incompatible with the Atovaquone (pneumonia prophylaxis). Which also causes nausea, by the way… I simply hated the stuff.

    How did your mouth sores resolve?
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 02-14-2020, 04:52 PM   #38
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post

    How did your mouth sores resolve?
    I still have one slightly sore spot but the rest have gone. I expect they'll try to make a reappearance around the same time this cycle so I'm hitting the salt and bicarb rinses hard.

    I'm on Resprim Forte for pneumonia prophylaxis, which is 800 mg of sulfamethoxazole and 160 mg of trimethoprim. I take one tablet morning and evening on Mondays and Thursdays.

    By the way, did anyone else who had R-CHOP get a scratchy throat and a slight dry cough for a couple of days after their chemo? I keep forgetting to ask my consultant about it. It passes in a couple of days but it's regular as clockwork.

    I take loratadine anyway from day 0-5 because it is supposed to help with the bone pain from the growth factor injection, so I'm not worried about it being an allergic reaction. It's mild but it's annoying.
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    Old 02-15-2020, 06:19 AM   #39
    PBLz
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    Re: DLBCL treatment

    I would say the scratchy throat and dry cough is likely to be due to the Rituximab. Don't forget to tell your hematologist next appointment. Maybe the loratadine does attenuate it a bit, but it's worth mentioning.
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 02-15-2020, 07:09 AM   #40
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    Re: DLBCL treatment

    Hi the throat and cough could also be due to the growth factor injections, when my consultant was a young doctor his consultant was running a trial and all his students were enrolled, he advised he suffered flu like symptoms for no more than 7 days. So the anti-histamine could be damping down the effects. Though as mentioned do raise it at your next check up.
    Re sickness I also had aprepitant and was never sick, I did feel sick a couple of times which felt odd as the drug blocks the receptor that triggers you being sick.
    Your doing fine so far so fingers crossed it continues through the second half of treatment.

    John

     
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    Old 02-19-2020, 12:12 PM   #41
    Sparkle Lolie
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    Re: DLBCL treatment

    This cycle has brought a couple of surprises.

    I'm having trouble getting around because my feet feel like I've walked on hot concrete or sharp gravel whenever I put any pressure on them. Even standing on carpet hurts. I see my consultant tomorrow so I'm hoping she has something in her bag of tricks to address this.

    On the other hand, the skin on my face and my body is the clearest it's been for decades.
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    Old 02-20-2020, 10:03 AM   #42
    PBLz
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    Re: DLBCL treatment

    Yup! That's very likely to be Vincristine neuropathy - not much to do about it but reduce dosage or discontinue altogether to avoid permanent damage (some of it may be reversible within a few months). Your consultant will assess your nerve function and tell you what she can do for you, as her primary goal - understandably - is still to buy you several years survival from the disease that first brought you to her… What my hematologist told me was that he wasn't worried about stopping the Vincristine as it was not the most essential part in my treatment - but then, I have Follicular lymphoma (not DLBCL), so the aim in my case is not to cure me but just to stop it in its tracks for as long as possible before we need to treat again, always with that same goal.

    Regarding the skin, I have experienced the same (although my skin was very dry and I got into the habit of using body oil after showering - not to mention the crevices on my hands). It did, however, have a distinctly "old ivory" yellow tinge to it that screamed "I am very ill"... Anyhow, enjoy while it lasts, as all - in that department at least - will return to normal within a few months of treatment completion.
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 02-20-2020, 04:34 PM   #43
    Sparkle Lolie
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    Re: DLBCL treatment

    Currently in hospital with febrile neutropenia.

     
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    Old 02-21-2020, 12:56 AM   #44
    PBLz
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    Re: DLBCL treatment

    Sorry to read your news. Wishing you a speedy recovery from this episode. Has your hematologist discussed slowing down the pace of your treatment to give you more time between infusions?
    __________________
    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 02-22-2020, 11:15 AM   #45
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Sorry to read your news. Wishing you a speedy recovery from this episode. Has your hematologist discussed slowing down the pace of your treatment to give you more time between infusions?
    Unfortunately it's the weekend here so I won't see her again until Monday. I would say that a lot will depend on how quickly my bloods show improvement.

    I'm retaining fluid at the moment and they're concerned about that, although not panicking.

     
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