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  • Non-Hodgkin's DLBCL treatment

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    Old 10-01-2020, 12:49 PM   #166
    PBLz
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    Re: DLBCL treatment

    Hi,

    Just thought I'd check in on you. I hope your radiation treatment has started as planned and that you breezed through your first session!
    Do keep us posted.
    Kind regards.
    __________________
    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 10-06-2020, 01:42 AM   #167
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Hi,

    Just thought I'd check in on you. I hope your radiation treatment has started as planned and that you breezed through your first session!
    Do keep us posted.
    Kind regards.
    Had my second session today. The linac didn't want to work the first couple of days last week so I will finish treatment Monday next week instead of Thursday this week.

    The treatment itself isn't demanding in the same way as chemotherapy or conventional radiotherapy, but I will be glad to have it behind me.

    I'll have a CT and a couple of specialist appointments in November and then I hope to enjoy the rest of the year without any medical drama.

    I have some kind of URTI at the moment and I'm hyper-vigilant. I keep having to remind myself that the onset of my lymphoma was rapid and dramatic, not a measly couple of barely swollen lymph nodes like I have at the moment.
    __________________
    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 10-07-2020, 12:25 PM   #168
    PBLz
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    Re: DLBCL treatment

    Quote:
    Originally Posted by Sparkle Lolie View Post
    Had my second session today. The linac didn't want to work the first couple of days last week so I will finish treatment Monday next week instead of Thursday this week.
    Did you actually get to your treatment facility and get sent back home, or did you get advance notice?

    Quote:
    Originally Posted by Sparkle Lolie View Post
    I'll have a CT and a couple of specialist appointments in November and then I hope to enjoy the rest of the year without any medical drama.
    Fingers crossed for you - hope you get nothing but good news in November!

    Quote:
    Originally Posted by Sparkle Lolie View Post
    I have some kind of URTI at the moment and I'm hyper-vigilant. I keep having to remind myself that the onset of my lymphoma was rapid and dramatic, not a measly couple of barely swollen lymph nodes like I have at the moment.
    You never did discuss what led up to your diagnosis. I'd be curious to have some notion or timeline, if you care to share on that aspect of things. My own process (I have indolent lymphoma) was truly lengthy - I mean, literally, years of symptoms that were ascribed to all sorts of other more or less plausible causes. Of course, the spontaneous fracture and resulting intensification of pain did speed things up somewhat toward the end...
    __________________
    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 10-07-2020, 01:25 PM   #169
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Did you actually get to your treatment facility and get sent back home, or did you get advance notice?
    They rang me before I needed to leave, thank goodness.


    Quote:
    You never did discuss what led up to your diagnosis. I'd be curious to have some notion or timeline, if you care to share on that aspect of things. My own process (I have indolent lymphoma) was truly lengthy - I mean, literally, years of symptoms that were ascribed to all sorts of other more or less plausible causes. Of course, the spontaneous fracture and resulting intensification of pain did speed things up somewhat toward the end...
    Last November I had lymph glands come up under my left jaw. This wasn't especially worrying as I have some dental problems on that side. I went to my GP, who prescribed antibiotics.

    A week later my left tonsil became really inflamed. The glands hadn't gone down so another lot of antibiotics was prescribed.

    Another week later, a sore and raw patch appeared on the roof of my mouth on the right hand side. Again, we put this down to dental problems and my GP prescribed more antibiotics and we agreed that I would seek emergency dental care early the following week. This was on a Saturday morning.

    That afternoon, the right hand side of my face went numb so I called the after hours doctor. He told me to go to the ED. They weren't thrilled about me going there but the ED doctor gave me a referral for imaging. I asked him if it could be something malignant but he said malignancy didn't usually present that way.

    It was a few days until I could get back to back appointments for the US and the CT. I had them done on the Thursday and picked up the images on the Friday. The report identified two cancerous masses and suggested that they were metastasised SCC.

    I went straight back to my GP who started the referral process for a biopsy and a meeting with an oncology team,

    My biggest mass was in my right maxillary sinus. I'd had sinus problems on that side for years but I'd had repeated scans which didn't show any mass so it's incredibly unlikely it had been there all along.

    All of this happened just before Christmas last year. By early January, I was in hospital and the sinus mass had grown so much that I couldn't open my right eye.

    Because the onset of my lymphoma was so rapid and dramatic, I feel OK waiting a little while to see what happens with my current enlarged lymph nodes. tbh, I also want to get this treatment behind me before even thinking about contacting my haematologist.
    __________________
    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 10-07-2020, 04:15 PM   #170
    PBLz
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    Re: DLBCL treatment

    Wow! That thing did move at lightning speed! My case history is more reminiscent of the frog sitting in a pot of water on low heat - never realizing he's being cooked :-S...

    Hopefully - if there was never any mention of an indolent component on your pathology report - the R-CHOP has wiped it completely out, and the radiation will rid you of the lung mass in time for a lovely Christmas celebration!

    I assume you are on a quarterly follow-up schedule with your hematologist at this point, so those new lymph nodes may not escape her scrutiny.
    __________________
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 10-07-2020, 06:36 PM   #171
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post

    I assume you are on a quarterly follow-up schedule with your hematologist at this point, so those new lymph nodes may not escsolvape her scrutiny.
    I am. I see her again mid-November but will ring for an urgent appointment if these lymph nodes get worse or don't resolve within a couple of weeks.

    I need to start getting used to the idea that sometimes my lymph nodes will just be doing their job.

    I would be more concerned if I didn't have an URTI at the moment.

     
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    Old 10-12-2020, 10:16 PM   #172
    Sparkle Lolie
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    Re: DLBCL treatment

    Finished SBRT yesterday. Now to try to get the house and yard into some kind of order before Christmas.
    __________________
    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 10-17-2020, 06:07 AM   #173
    PBLz
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    Re: DLBCL treatment

    Good for you! I am sure the prospect of Christmas celebrations will greatly help in your recovery ;-))
    __________________
    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 10-17-2020, 03:07 PM   #174
    johnr11
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    Re: DLBCL treatment

    Pleased to read treatment has finished, fingers crossed that's it and you can enjoy Christmas once you have the energy to fix the house and yard

     
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    Old 11-12-2020, 06:09 PM   #175
    Sparkle Lolie
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    Re: DLBCL treatment

    Just got back from seeing my haematologist. My haemoglobin is back over 100 and my neutrophils are normal. She described the rest of my blood results as "boring".

    She had a feel of the swollen lymph nodes in my neck and doesn't believe it's even worth scanning. She said she wouldn't have noticed them if I hadn't pointed them out and that it's probably my immune system starting to work again.

    I had a CT scan earlier this week to check on my lungs and she had access to that. It shows that my lung mass has shrunk, which was not expected this early.

    I feel like I can relax a bit for a couple of months now.
    __________________
    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 11-15-2020, 11:16 AM   #176
    johnr11
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    Re: DLBCL treatment

    Hi good to read such a positive update and early Christmas present after your rollercoaster ride, relax and enjoy each day, you deserve it. Really pleased for you.

    John

     
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