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  • Non-Hodgkin's DLBCL treatment

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    Old 01-29-2020, 10:12 AM   #16
    johnr11
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    Re: DLBCL treatment

    I found after a couple of cycles I got in to "the groove" and knew exactly what would happen and how it would feel so was more relaxed, fatigue and neuropathy became a cumulative issue but the rest was the same each cycle.

    sure you will feel less anxious as treatment progresses, but if not as mentioned above have a chat about it can be addressed.

     
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    Old 01-30-2020, 12:00 AM   #17
    Sparkle Lolie
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    Re: DLBCL treatment

    Chemo itself went fine but they weren't able to do the lumbar puncture and scheduled dose of methotrexate because my coagulation study was borderline.

    They don't seem overly concerned and said it's common, but they took more bloods to see if there's some underlying reason they need to address. I should hear back on that tomorrow. The lumbar puncture isn't time critical. I just need to have 4 of them done during my treatment (I had the first a few weeks ago).

    Also found out that my registrar is moving to another hospital next week, which is a bit unsettling. I really like her.
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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 01-30-2020, 06:58 AM   #18
    PBLz
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    Re: DLBCL treatment

    Well, keep us posted on your progress. Could the coagulation issue be due to insufficient time for your marrow to recuperate in between infusions? I have noted that you were having R-CHOP14, whereas I had R-CHOP21 - and I remember that I would only begin to feel better on day 11 of each cycle… Has your hematologist considered giving you more time, or does s/he think it necessary to keep the infusions coming in order to eradicate all cancerous cells?
    Did you get an opportunity to discuss your anxiety? Any help offered on that point?
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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 01-30-2020, 08:59 AM   #19
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Well, keep us posted on your progress. Could the coagulation issue be due to insufficient time for your marrow to recuperate in between infusions? I have noted that you were having R-CHOP14, whereas I had R-CHOP21 - and I remember that I would only begin to feel better on day 11 of each cycle… Has your hematologist considered giving you more time, or does s/he think it necessary to keep the infusions coming in order to eradicate all cancerous cells?
    Did you get an opportunity to discuss your anxiety? Any help offered on that point?

    I didn't see the consultant yesterday, only my two outgoing registrars. Any decision to change the schedule would be made by the consultant in consultation with the MDT.

    I know that the bloods I had taken a couple of days ago - which are the ones they take to check that I'm OK to go ahead with the next round of chemo - were OK.

    I didn't get a chance to discuss the anxiety with anyone as they both made flying visits, but it will be at the top of my agenda for next week's appointment with my consultant.

    One thing which was unique to my first cycle is that I was on 75mg per day of Prednisone for the 5 days prior to the start of the cycle and then 100mg per day for day 1-5, so 10 days in all.

    Update Second lot of bloods were fine. They think the first sample got contaminated. Good to know I don't have a cascading coagulation problem, which was the concern.
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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 02-01-2020, 12:30 AM   #20
    johnr11
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    Re: DLBCL treatment

    Now you are in to treatment watch out for the mood swings or steroid rage, you may not see it at first but others around you may notice a change. Most of us experience it at some point.

    John

     
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    Old 02-01-2020, 02:25 AM   #21
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by johnr11 View Post
    Now you are in to treatment watch out for the mood swings or steroid rage, you may not see it at first but others around you may notice a change. Most of us experience it at some point.

    John
    I'm familiar with the steroid moods as one of my children was a severe asthmatic when younger and used to be foul tempered after 5 days on steroids.

    My doctor did say that if I have any steroid related issues they would look at tapering them rather than stopping them suddenly, but it's been OK so far and I have told the family to let me know if I seem moody.

    I have started losing my hair now. I'm not too bothered by that but hope I don't lose my eyebrows.

    My second injection of growth factor is due tomorrow and I'm going to take loratadine beforehand as there is some research indicating that it may lessen the incidence of bone pain. I cleared it with my doctor.

    Otherwise, this heatwave is having more impact on me than my cancer at the moment.

     
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    Old 02-01-2020, 04:03 AM   #22
    johnr11
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    Re: DLBCL treatment

    Lots of people have said that anti-histamine helps with the bone pain so its good practice to follow, though here in the UK never offered sadly. With being on a 14 day cycle you may just get away with not loosing all your body hair as it did take some time before I lost my eyebrows and then eye lashes, but I did have 8 cycles over nearly 6 months as I had a couple delayed due to low neutrophil counts.

    The heat you are experiencing does seem higher than normal from what's being report overhere, and I would well imagine its very uncomfortable the closest I have been to high temps was a break in Lanzarote and it hit 40c+ on most days and the best thing was the cool pool.

    hope things continue to be uneventful for you

    John

     
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    Old 02-01-2020, 04:41 AM   #23
    PBLz
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    Re: DLBCL treatment

    Yes, I am sure the heatwave and related horrific current events are not helping you through this...
    Good to know the bloodwork was not a thing in the end!
    Regarding steroids, although there is a lot of talk about side effects - and on a more positive note - they do help keep you going when you might otherwise be bedridden with the fatigue resulting from illness+chemo. And, the side effects do not necessarily have to be spectacular. As mentioned before, I have had plenty of the stuff in the months prior to diagnosis, as well as 130mg/dayx5 every cycle of treatment, with no major issue.
    As for hair loss, it is a given with CHOP - in my experience, you may delay by a few weeks the moment when it is all gone by trimming it short, but you will get to that point nevertheless. Eyebrows and lashes have their own growth cycle, and if treated extra gently, i.e., no mascara, no eye makeup remover, no rubbing, will thin out but not vanish completely. I found regrowth to be sluggish and somewhat messy. Maybe your hematology nurse could offer some good advice on that.
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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 02-01-2020, 07:14 AM   #24
    Sparkle Lolie
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    Re: DLBCL treatment

    The dreaded chemo constipation has arrived. I have Coloxyl on hand but not Movicol. I guess I'd better start taking them a few days before the next cycle from now on.

    They gave us a stool chart showing what combination of the two to take based on the stool chart. Have started the Coloxyl and will grab some Movicol tomorrow - thank goodness pharmacies are open Sundays these days.

    I had my hair cut fairly short before I started treatment. For the moment it's thinning rather than falling out in big chunks (I have naturally thick hair and a lot of it) and I ordered some headwear today, so hopefully that will arrive before I develop noticeable bald spots. If not, I have a scarf or two laying around here.

    I'm booked to attend a Looking Good, Feeling Better session in a couple of weeks, so I'll ask about eyebrows and eyelashes there as the session is all about managing appearance changes (and we get given free cosmetics to boot).
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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 02-01-2020, 03:21 PM   #25
    PBLz
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    Re: DLBCL treatment

    It's a good thing you were prepared for constipation - it wasn't even mentioned to me, so hit me completely by surprise. Mine was severe (bordering on paralytic ileus) from the start of cycle 1, and was (due to other concurrent neurological symptoms) attributed to Vincristine-induced neuropathy, leading my hematologist to immediately withdraw Vincristine from my "cocktail".
    Apart from the medications, try to increase your daily water intake, as well as the share of fruit and veggies on your plate; clockwise abdominal self-massage can also be a great help.
    However mild or well-managed on your own, I strongly suggest you inform your hematology team on that and any other symptoms at your next appointment.
    I hope this helps.
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    Ttt 6xR-CHOP21 03-06/16 + Maint 12xRitux -end 04/18
    Currently in remission

     
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    Old 02-01-2020, 09:10 PM   #26
    Sparkle Lolie
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    Re: DLBCL treatment

    Quote:
    Originally Posted by PBLz View Post
    Apart from the medications, try to increase your daily water intake, as well as the share of fruit and veggies on your plate; clockwise abdominal self-massage can also be a great help.
    However mild or well-managed on your own, I strongly suggest you inform your hematology team on that and any other symptoms at your next appointment.
    I hope this helps.
    Unfortunately this particular cycle coincided with a heat wave. It was 46C here yesterday and I think my body just used the extra fluids to remain hydrated.

    I never want to eat when it's hot. I grazed on just enough snacky food to take my tablets and avoid my electrolytes going stupid. I was ravenous during the first cycle because it was cooler so it was less of an issue.

    The chemo nurses and the registrars are very good about asking about side effects, but I will definitely be mentioning it as I found out Movicol is available on prescription at a subsidised rate for cancer patients - so I will be asking them to write me a prescription.
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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 02-06-2020, 11:07 PM   #27
    Sparkle Lolie
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    Re: DLBCL treatment

    Saw my consultant again today. She's happy with my response to treatment so we're continuing the original plan - 4 more R-CHOP and then two cycles of rituximab and methotrexate only for consolidation.

    My new registrar is nice.

    I've planned a couple of things with my kids over the next couple of weeks which don't revolve around my cancer. Much as I appreciate their support, it will be nice to spend some time with them just doing normal family stuff.
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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 02-06-2020, 11:58 PM   #28
    johnr11
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    Re: DLBCL treatment

    Good update, and doing normal things will help, enjoy the family time

    John

     
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    Old 02-07-2020, 05:39 AM   #29
    PBLz
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    Re: DLBCL treatment

    Sounds good! Congratulations on that update. I assume everything is back to normal on the digestive front… Enjoy the family time.
    __________________
    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 02-08-2020, 01:28 PM   #30
    Sparkle Lolie
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    Re: DLBCL treatment

    Woke up to a mouth full of ulcers this morning. Thank goodness I have plenty of painkillers and a freezer full of soup.

    I've also discovered that your nose runs a lot when you lose your nose hair.
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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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