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  • Non-Hodgkin's DLBCL treatment

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    Old 06-15-2020, 02:07 PM   #106
    PBLz
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    Re: DLBCL treatment

    Way to go! Hopefully this will get confirmed with the Pet-scan results in a few weeks.

    Fingers crossed for you this week.

    How was the recovery in between Mtx #1 and #2?
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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 06-15-2020, 05:07 PM   #107
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Way to go! Hopefully this will get confirmed with the Pet-scan results in a few weeks.

    Fingers crossed for you this week.

    How was the recovery in between Mtx #1 and #2?
    Had a fair bit of neuropathy and the mucositis and oedema persisted for a few days after discharge but I was mostly OK by the end of the break.

    I did get more tired, but I guess that's to be expected after 5 months of chemo.

     
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    Old 06-16-2020, 12:21 PM   #108
    PBLz
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    Re: DLBCL treatment

    Quote:
    Originally Posted by Sparkle Lolie View Post
    I did get more tired, but I guess that's to be expected after 5 months of chemo.
    Yes, it would have been surprising if you'd felt otherwise! All in all, though, you seem to have fared pretty well.

    Now, do let us know when you have your PET scan results. Fingers crossed for you until then.

    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 06-19-2020, 02:00 AM   #109
    Sparkle Lolie
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    Re: DLBCL treatment

    Home again and that's my planned treatment now concluded.

    Now we wait to see what the PET shows in a few weeks. My haemotologist is fairly confident of a complete response but if there are any small remaining areas of concern the plan is to nuke them with RT, so I already know the next step should one be necessary.

    For the next few weeks, though, I plan to spend a lot less time thinking about cancer than I have over the last 6 months.

     
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    Old 06-19-2020, 08:01 AM   #110
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    Re: DLBCL treatment

    Quote:
    Originally Posted by Sparkle Lolie View Post
    For the next few weeks, though, I plan to spend a lot less time thinking about cancer than I have over the last 6 months.

    That sounds like the best plan to me!

    I wish you a speedy recovery from treatment, and hope for the best possible news from you in a few weeks!
    __________________
    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 07-14-2020, 02:42 PM   #111
    Sparkle Lolie
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    Re: DLBCL treatment

    My PET will be done during the week starting 3 August.

    I still have some lingering neuropathy in my feet, which is slowly improving. My hair and eyebrows are growing back. I still feel nauseous quite often.

    My consultant said that I can't go "normal" places or have my granddaughter overnight until I'm off prophylaxis, which will be another 5 months. I really wasn't expecting that and it's deflated me quite a bit.

    I feel like I'm developing agoraphobia from all this staying home. I'm hypervigilant regarding any little ache or pain, which I hope will subside after my PET. Cancer is no longer the first thing I think of when I wake up, but it still consumes a substantial portion of my mental energy.

     
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    Old 07-14-2020, 05:32 PM   #112
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    Re: DLBCL treatment

    Good to read that your recovery is unrolling according to plan. Slow and steady is the word!
    Of course, we all want to get our normal lives back as soon as we're done with treatment, but our bodies (and minds) need a bit more time... Enjoy what little improvements you get on a day-to-day basis, and soon you'll be able to spend time with your granddaughter again!
    Regarding aches and pains, something I found really helpful is daily isometric exercises and gentle stretches (such as yoga). Chemotherapy causes muscle loss and you need to regain some strength and mobility, otherwise aches and pains will end up ruling your life.
    Try not to worry too much, and focus instead on the fact that DLBCL is one lymphoma strain you can actually get rid of for good! Even though the PET scan is still a couple of weeks away, I am sure your hematologist has assessed the evolution of your symptoms over the course of treatment, and must have given you some indication of what s/he thinks the results will be. Trust in that until then.
    __________________
    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 07-15-2020, 02:42 AM   #113
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Even though the PET scan is still a couple of weeks away, I am sure your hematologist has assessed the evolution of your symptoms over the course of treatment, and must have given you some indication of what s/he thinks the results will be. Trust in that until then.
    She said that if the PET shows any residual activity they will treat it with RT, but she doesn't think that will be necessary. I'm mindful that my LDH was in normal range after the first round of HD-MTX and above normal after the second, though. I have another clinic appointment next week so I will have a clearer idea then of where my LDH is heading.

     
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    Old 07-24-2020, 03:52 PM   #114
    Sparkle Lolie
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    Re: DLBCL treatment

    Saw my haemotologist yesterday for the last time before my PET.

    My PET will happen some time during the week starting 3 August but I won't get the results until my next clinic appointment on 14 August. My haemotologist said that something always shows on the PET so she wants to run the scan past the MDT on 11th before giving me the results.

    All of the staff were wearing masks yesterday and we currently have a lot of community transmission, so she doesn't want me leaving the house except for medical appointments.

    Latest LDH was under 200, so that's good.

     
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    Old 08-03-2020, 05:51 PM   #115
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    Re: DLBCL treatment

    Tomorrow is PET day and scanxiety is in full force. I'm more anxious about this one than the one which was done prior to starting treatment.

     
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    Old 08-04-2020, 12:37 AM   #116
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    Re: DLBCL treatment

    Hi, that's totally normal as we all hope for the best and just in case prepare for the worst, you may also find it a bit of an anticlimax to when you get the results on the 14th. My specialist nurse actually rang me after the report went to the MDT meeting so I did not have to wait to see the consultant. My results were not straight forward as I had a chunk of scar tissue due to having a large mass so the was some uncertainty which was discussed when I saw the consultant.

    Hang in there I am sure all will be fine, just keep telling yourself that when the doubts creep in.

    John

     
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    Old 08-05-2020, 12:41 PM   #117
    Sparkle Lolie
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    Re: DLBCL treatment

    PET is done. It was uneventful except for blood going everywhere when the cannula was inserted - after all those times when we couldn't get good blood return during chemo.

    I was going to take a peek at the images when I got home yesterday but the DVD drive on my old laptop decided to stop working, so I shall just have to wait.
    __________________
    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 08-15-2020, 09:58 PM   #118
    Sparkle Lolie
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    Re: DLBCL treatment

    PET showed no remaining signs of lymphoma so I will now go to 3 monthly follow up appointments and 6 monthly CT scans for that.

    Should I have an early relapse, we'll go straight to trials - there's some pretty exciting trials underway here which treat lymphoma at the molecular level, so I'm surprisingly unphased by that possibility.

    However, my haematologist wants me to see a lung specialist. When I was diagnosed with lymphoma a lesion was detected on the lower lobe of my left lung. It's been detected on all subsequent imaging and showed positive on the PET (I didn't think to ask the SUV).

    They weren't especially concerned about it back in January and she's not particularly concerned about it now as it hasn't changed in any way during the last 7 months, but she wants a lung specialist to make the call on whether it should just be monitored by the 6 monthly CTs or whether a biopsy is warranted.

    I'm aware that about 20% of lung cancers are indolent and should be left alone (the stuff you learn once you have a cancer diagnosis is amazing), so it will take some good reasons to persuade me to do anything other than watch and wait, but it looks like I'm not off the cancer roundabout just yet.

    I am utterly amazed by how unflustered I am about this. If you'd told me a year ago that I wouldn't panic about having a lesion on my lung, I wouldn't have believed you, but the last 8 months have been a rapid learning curve about the current state of cutting edge cancer treatment.
    __________________
    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 08-16-2020, 01:40 AM   #119
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    Re: DLBCL treatment

    Hi, that all sounds like good news especially if your were unlucky to have an early relapse, re the lung I cannot remember what they were called but I know Po (Jim) and others on the old site had things show up that turned out to be nothing, so lets hope its the case for you.
    I would agree the watch and wait approach and monitoring via scans is the way to go as the biopsy procedure is not without risk.

    enjoy your recovery and release from those regular hospital visits.

     
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    Old 08-16-2020, 03:49 PM   #120
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    Re: DLBCL treatment

    Hi,
    So, you've wiped this thing out - very happy for you!
    If the lung nodule has been the same throughout treatment, then it may very well not be anything to worry about. Do keep us posted when you've seen the pulmonologist!
    Just a little caveat though: you are likely in what I would call "survival mode", and the calm with which you deal with such news as "there's still that lung nodule" may well be attributable to that. Anxiety can still catch up with you at some later point in time... I don't want to bring your spirits down, but it's better to be aware of the possibility and watch for early signs in order to nip that in the bud.
    Take good care of yourself.
    PBL
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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