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  • Non-Hodgkin's DLBCL treatment

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    Old 03-14-2020, 04:15 PM   #76
    PBLz
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    Re: DLBCL treatment

    Quote:
    Originally Posted by Sparkle Lolie View Post
    I have E-45, which is paraffin-based, so I will give this a try.
    Sounds good! Let me know how that works for you.

    Quote:
    Originally Posted by Sparkle Lolie View Post
    I need to moisturise way more often than the 2-3 times a day I'm using the urea cream anyway.
    Yes, I remember reflecting on how that was a full-time job! Between popping all those pills and syrups through the day, moisturizing, going for walks to try and keep what little muscle mass I hadů And I must say, what with the megafires and now CoVid19, you've really picked your year!

    Take care.
    __________________
    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, 05:16 PM   #77
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    And I must say, what with the megafires and now CoVid19, you've really picked your year!
    We still have seasonal flu season ahead of us, too!
    __________________
    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 03-15-2020, 04:18 AM   #78
    PBLz
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    Re: DLBCL treatment

    Only one thing to do: Stay positive! - and stay safe.
    __________________
    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 03-15-2020, 11:23 AM   #79
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Only one thing to do: Stay positive! - and stay safe.
    The complications during cycle 3 really did a number on my confidence, to be honest.

     
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    Old 03-15-2020, 03:22 PM   #80
    PBLz
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    Re: DLBCL treatment

    I do not know the statistics on this, but I think I can safely say - based on the time I have been on the forums - that many lymphoma patients experience some form of complication in the course of their chemotherapy. And it is no wonder, either: chemotherapy is a harsh treatment against a serious disease.
    Keep the faith though: this will pass and should soon be a fading memory as you recover.
    __________________
    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 03-15-2020, 05:11 PM   #81
    Sparkle Lolie
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    Re: DLBCL treatment

    I just realised that it's two months today since I started chemo. It feels like it's been much longer.
    __________________
    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 03-16-2020, 01:29 AM   #82
    PBLz
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    Re: DLBCL treatment

    Yes. Time does tend to expand and contract in our experience. It felt like chemo would last forever, and then, at some point after treatment was over, time picked up speed again...
    __________________
    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 03-26-2020, 07:53 PM   #83
    Sparkle Lolie
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    Re: DLBCL treatment

    Saw my consultant this morning. She doesn't want me leaving the house other than to go to the hospital. They don't even want me to go to my GP. I'm to ring them if I need any prescriptions written.

    Because the location of one of my tumours makes me "high risk", my final two R-CHOP cycles will go ahead unless the infusion centre has to close. A PET will be done after those.

    She still thinks it was methotrexate which caused my hand-foot syndrome so I won't be having any more of that - so no more lumbar punctures (I was due to have two more and also to have high dose methotrexate as an inpatient once R-CHOP is finished).

    I will still have the rituximab which was going to be given along with the high dose methotrexate, but most likely as an outpatient.

    My final R-CHOP cycle will be 4 weeks from today. Suddenly, that seems very close.
    __________________
    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 03-27-2020, 12:45 AM   #84
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    Re: DLBCL treatment

    Hi, good to read that treatment is still going ahead and you have clear instructions from the hospital, these unique times are certainly creating challenges we never thought we would see. In the UK people are having treatment cancelled and life for some has become very unfair.
    Stay safe and stay as well as you can.

     
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    Old 03-27-2020, 12:06 PM   #85
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by johnr11 View Post
    In the UK people are having treatment cancelled and life for some has become very unfair.

    I noticed that on the Macmillan forums. In the US, people have started to receive letters explaining how access to intensive care/ventilators will be triaged. Those letters are fairly brutal.

    Here, were expected to run out of intensive care capacity between 7 April and 10 April. And yet too many people are still treating this like an unplanned holiday and ignoring social distancing advice to gather at places like beaches.

    We really need to go into UK style lockdown and it should have been done a few weeks ago. Everyone I speak to is furious that hasn't happened yet. Escalating restrictions by degrees is causing people to not take this seriously enough and it's going to cost lives.
    __________________
    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 03-27-2020, 01:58 PM   #86
    johnr11
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    Re: DLBCL treatment

    I would say life was similar here until Monday and the mood has changed very quickly and the majority are now being sensible, I am now self isolating for the coming few months as this unfolds. `Unfortunately as its advancing I can now say I know people who have experienced it and a friend has lost a good friend within 36hrs of being admitted to hospital.
    sad times ahead

     
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    Old 04-02-2020, 06:03 PM   #87
    Sparkle Lolie
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    Re: DLBCL treatment

    Currently at R-CHOP 5 of 6.

    The number of patients and nurses per bay has been halved and the nurses have been divided into teams which have no contact with each other. Only nurses are allowed in the patient kitchen now.

     
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    Old 04-02-2020, 11:35 PM   #88
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    Re: DLBCL treatment

    Good that treatment has gone as planned, 3 weeks and that will be it and then the wait for the scan, as you approach the last treatment you might want to google a paper called life after treatment by Dr Peter Harvey a UK physiologist as not sure if we can post links the way we used to. It explains how you will feel and think and its pretty much 100% right and helps with the transition into rehab.
    Hope the next 3 weeks are uneventful and treatment goes as planned as it is unique times.

     
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    Old 04-02-2020, 11:56 PM   #89
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by johnr11 View Post
    Good that treatment has gone as planned, 3 weeks and that will be it and then the wait for the scan, as you approach the last treatment you might want to google a paper called life after treatment by Dr Peter Harvey a UK physiologist as not sure if we can post links the way we used to. It explains how you will feel and think and its pretty much 100% right and helps with the transition into rehab.
    Hope the next 3 weeks are uneventful and treatment goes as planned as it is unique times.
    I downloaded that paper early in my treatment and have already read it a couple of times. I'm sure I will refer to it frequently in the coming weeks.

    Getting closer to the moment of truth is a bit scary. I know that I have responded to treatment but the extent of that response remains a mystery until the PET.

     
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    Old 04-06-2020, 08:36 PM   #90
    Sparkle Lolie
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    Re: DLBCL treatment

    Having an attack of the blahs today, mostly due to cabin fever, so I just ordered a ridiculous amount of bulbs. I may not be able to garden properly at the moment, but I can still stick things in the ground and water them.

    My doctor's finally has flu vaccine so I'll head down there first thing tomorrow morning and get jabbed. I'm not thrilled about being around others, but my specialist wants me to have fluvax ASAP, so I'll wear a mask and be careful. I need some new prescriptions anyway so two birds, one stone.

    I'd really like to be knitting socks and slippers at the moment but knitting sets off the neuropathy in my fingers so I guess that will have to wait until I've finished chemo.
    __________________
    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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