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  • Non-Hodgkin's DLBCL treatment

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    Old 09-08-2020, 02:20 AM   #151
    Sparkle Lolie
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    Re: DLBCL treatment

    Officially got told the biopsy results today. Low grade, early stage carcinoma of the lung is confirmed.

    I was given the option of either surgery or SBRT and chose the RT. Now I wait for someone to contact me about an appointment with the radiation oncologist.

    I expect that planning treatment will take a few weeks, but I'm hoping I can have it done and dusted before the end of October.
    __________________
    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 09-08-2020, 01:14 PM   #152
    PBLz
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    Re: DLBCL treatment

    Sorry I wasn't there for you today - had my own scheduled monitoring CT and MRI today, so my computer was out of reach.

    Are your doctors confident that the radiation therapy will wipe this thing out?
    __________________
    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 09-08-2020, 06:25 PM   #153
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post

    Are your doctors confident that the radiation therapy will wipe this thing out?
    They seemed very confident yesterday. I will know more after I've spoken to the radiation oncologist on Friday. My understanding is that I will still have a couple of fallback options open to me.
    __________________
    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 09-09-2020, 10:44 PM   #154
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Sorry I wasn't there for you today - had my own scheduled monitoring CT and MRI today, so my computer was out of reach.

    Are your doctors confident that the radiation therapy will wipe this thing out?
    How did the CT and MRI go?
    __________________
    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 09-11-2020, 02:18 PM   #155
    PBLz
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    Re: DLBCL treatment

    Oh, they're routine, you know - almost completely dozed off in the MRI tube... Will not hear about the results in a while.

    You must have seen the radiation oncologist at this point. How did it go?
    __________________
    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 09-11-2020, 02:44 PM   #156
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post

    You must have seen the radiation oncologist at this point. How did it go?
    I met with the radiation oncologist yesterday and the plan is to have 5 fractions of SBRT over a week and a half, starting in a few weeks.

    I need to have a high resolution CT done on Monday and then a planning CT done later next week. The high res CT is to check for fibrosis, which would increase the risks of SBRT.

    The cure (his word) rate I was given is 90%, which is what I'd found from my own research.

    I'm happy with the plan and just want to get this over and done with.
    __________________
    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 09-13-2020, 02:19 PM   #157
    PBLz
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    Re: DLBCL treatment

    Quote:
    Originally Posted by Sparkle Lolie View Post
    The cure (his word) rate I was given is 90%, which is what I'd found from my own research.
    90% cure rate sounds pretty good! Here's hoping for a quick, definitive cure for you!
    __________________
    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 09-13-2020, 03:08 PM   #158
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    90% cure rate sounds pretty good! Here's hoping for a quick, definitive cure for you!
    I have a high res CT scan this afternoon to check for fibrosis. As it would change the treatment plan and three R-CHOP drugs are known to cause it, I won't relax until I know the results.

     
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    Old 09-13-2020, 09:57 PM   #159
    PBLz
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    Re: DLBCL treatment

    Of course, there is always a chance that the proposed course of treatment has to be reconsidered - but let us hope the bad luck stops here...

    Please keep us posted on your results.
    __________________
    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 09-15-2020, 12:11 AM   #160
    Sparkle Lolie
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    Re: DLBCL treatment

    High res CT was fine so I have a planning CT tomorrow morning and then have my first treatment on 29 September.

     
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    Old 09-15-2020, 05:45 AM   #161
    PBLz
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    Re: DLBCL treatment

    At last a bit of encouraging news! So, you should be able to put that behind you by the end of October...
    Have you discussed any possible side effects with the radiation oncologist?
    __________________
    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 09-15-2020, 01:33 PM   #162
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    At last a bit of encouraging news! So, you should be able to put that behind you by the end of October...
    Have you discussed any possible side effects with the radiation oncologist?
    Should be finished by the third week of October.

    The high res CT scan was related to side effects. The worst potential side effect is radiation pneumonitis, and fibrosis elevates the risk of that from less than 1% to 50%.

    I will be at risk of spontaneous rib fractures and nerve irritation at the chest wall. Both of those are managed with analgesics.
    __________________
    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 09-19-2020, 04:22 PM   #163
    Sparkle Lolie
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    Re: DLBCL treatment

    Had planning CT last week and got tattooed.

    On Friday they called me and asked me to come in for another planning CT. I'm apparently good enough at breathing the tumour away from the chest wall that they think they can reduce the radiation field.

    So I won't get an appointment-free week before starting treatment, but the reason why is a good one.

    This has been a very different experience for me than the diagnosis of and lead up to treatment for my lymphoma.

    I was astonished by how few people had even heard of lymphoma, given that it's the 6th most commonly diagnosed cancer here. By contrast, everyone has heard of lung cancer (the 5th most diagnosed) but a lot of those people are misinformed and still believe it's an automatic death sentence.

    Despite the massive progress in cancer treatments over the last 10 years, it's obvious that cancer education is lagging far behind.
    __________________
    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 09-20-2020, 07:29 AM   #164
    PBLz
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    Re: DLBCL treatment

    Quote:
    Originally Posted by Sparkle Lolie View Post
    Had planning CT last week and got tattooed.

    On Friday they called me and asked me to come in for another planning CT. I'm apparently good enough at breathing the tumour away from the chest wall that they think they can reduce the radiation field.

    So I won't get an appointment-free week before starting treatment, but the reason why is a good one.
    Yes, it does seem to be an excellent reason! I assume that the smaller the field, the lesser chances of side effects from the radiation. Have you been given any advice on skin burns from treatment?

    Quote:
    Originally Posted by Sparkle Lolie View Post
    This has been a very different experience for me than the diagnosis of and lead up to treatment for my lymphoma.

    I was astonished by how few people had even heard of lymphoma, given that it's the 6th most commonly diagnosed cancer here. By contrast, everyone has heard of lung cancer (the 5th most diagnosed) but a lot of those people are misinformed and still believe it's an automatic death sentence.

    Despite the massive progress in cancer treatments over the last 10 years, it's obvious that cancer education is lagging far behind.
    Quite right - I too had a similar experience - and that led me to not going into any details with most people, as they clearly had no prior understanding of lymphoma. Most of the time, in the realm of hematologic cancers, people are familiar with the word leukemia - generally understood to be a dread disease - and have no notion of a whole gamut of diseases under that generic name. As regards lymphoma, they have heard the name Hodgkin's disease, without associating it with the category "lymphoma". It does contribute to the feeling of loneliness we patients experience while going through diagnosis and treatment and life thereafter...
    Thank God for online forums!
    __________________
    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 09-20-2020, 02:00 PM   #165
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Yes, it does seem to be an excellent reason! I assume that the smaller the field, the lesser chances of side effects from the radiation. Have you been given any advice on skin burns from treatment?
    I asked about that and was told that I shouldn't have any burns with so few treatments, but they do give all patients sorbelene to use on any skin irritation.

    The one side effect which can't be eliminated is the risk of spontaneous rib fractures, although that risk is quite low.


    Quote:
    Most of the time, in the realm of hematologic cancers, people are familiar with the word leukemia - generally understood to be a dread disease - and have no notion of a whole gamut of diseases under that generic name.
    It's quite odd as both leukemia and Hodgkin lymphoma are both less common than NHL here. Perhaps they're better known because they tend to affect younger people.
    __________________
    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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