49yo - Just diagnosed with Stage 3 DLBCL

Hi all,

It's 3rd June, and after being told last night I definitely have DLBCL after a Biopsy last Tues, I'm going to be signing the consent form tomorrow and starting the R-CHOP Chemo on Monday.

Whilst there has been worry and fear from those around me, I feel unnaturally calm. I've had a *huge* lump under my arm since the end of February, and frankly getting a clear diagnosis and plan is more of a relief than anything else....

I also wonder if my long-term (low dosage) of Sertraline may of course be stopping any gnashing of teeth and wailing?

I'm also in a very lucky position that I can work flexible hours with no pressing time constraints - which must help?

I've decided to keep a diary of what meds + effects I have on a daily basis, as I think that will give me a clear view of progress (and even being on Prednisolone for a few days is providing massive relief already)

Anyway - I'll post here with any comments or questions as life takes a small diversion for the next 6 months or so.

Cheers everyone,

DengieBloke (somewhere in the Essex Marshes!)

  • Hi  and welcome to this corner for the community. I am Mike  and I help out around our blood cancer groups. I have a different type of NHL diagnosed back in 1999 and have had a lot if treatment including a treatment very similar to R-CHOP.

    A diary is a great idea and have note books going back my 22 years and like me you will be looking back in a few years think what was that all about.

    The treatment information can be challenging as the side effects can all sound daunting...... but people don’t have every side effects and when these do come along everyone experiences various levels and not all bad.

    These are some useful links for you to have a look at:

    Nausea, remember not to suffer in silence when it comes to nausea there are lots of tools available - but your team need to know how you are getting on.

    Fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue.

    During my 6 cycles of R-EPOCH I was on my chemo for 120 hrs 24/7 at a time and the main issue I had was fatigue but my nurse team told me to keep active so I walked the ward corridors with my chemo stand after every meal and actually did a few miles a day.

    Avoiding Infections obviously is very important but you will totally get this during these challenging times.

    I would also highlight the importance of drinking lots of water as this will flush out all the toxins released by the chemo and protects your kidneys.

    I can’t answer your question about Sertraline but you could post your question to our Cancer Nurse Team in our Ask an Expert section, but do allow two working days for replies from our expert team.

    Always around to help out and answer questions.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Hi, I am 48 and was diagnosed in March. Started first chemo on 31/3 and last week had my 4th out of 6th RCHOP.  

    I am lucky enough to be able to work from home and it’s definitely been manageable.  Apart from my chemo sessions I’ve not needed to take anytime off ‘sick’.  Everyone reacts differently though.

    A positive mental attitude is key. I did wobble initially which is unlike me but I think the previous 6 weeks of taking a combination of strong painkillers and then them just suddenly stopping, not that they had worked anyway, was a large part of why my mental health suffered initially for a few days.

    I live alone so I have to get up and get on with it every day and I’m actually grateful for that. I have support if I need it but keeping my life as normal as possible has been good for me.  

    My main side effects have been the expected hair loss, yellow toenails, plus mouth issues, not ulcers but oral thrush, soft tongue, heartburn etc. However I see it that it’s not the cancer doing those things but the cure.  It’s not pleasant all the time but it’s just stuff that has to be endured and so far it’s bearable.

    As a girl I can paint my toenails and I actually love my wigs, fake me looks better than real me :0)

    Try and get some fresh air every day. I haven’t felt much fatigue albeit I feel less fit than before.  However I get more energy after a walk and always feel better for it.

    I am on a weaning dose of the steroid so I have 5 days at 75mg, 3 days at 40, 3 days at 30, 3 days at 20 and 3 days at 10. So just 4 days without.  It sounds like some people just get a high dose and then nothing which sounds like you fall off a cliff energy wise.  I don’t get that feeling which I think helps a lot.  I take anti sickness meds for first 5 days which have worked and I’ve not needed the stronger meds they provide just in case. The anti viral drugs which I take 3 times a day are just another insurance policy. You might need the constipation sachets. I try and keep everything moving as I am keen to get the toxins out as much as is possible.  I have always drunk a lot of water but I would advise even if you do to, drink more. Eat well. It’s tempting to treat yourself but you may find that your taste buds are diminished and you don’t enjoy what you normally do. Try plenty of fruit and veg albeit it’s not the time to diet.  By Week 3 you might feel more back to normal.  I figure I am putting my liver through enough at the moment with the chemo drugs but on the 3rd Saturday I generally feel good enough to have a nice treat dinner and a glass of red wine. 

    I had intentions of writing everything down but I figured I don’t actually want to relive any of this.  You’ll get the hang of it after a few sessions. Each to their own though.  It’s a definitely a case of ‘you do you’. 

    Good luck for tomorrow.  It will be a long day.  The immunotherapy takes the longest but if you tolerate it well they might be able to speed it up for you on future visits. 

    First time I was there from 9am to 6pm but last week it was 9.30 to 1.30. It also depends how busy they are on the day.  Typically everyone’s machines start bleeping at the same time! 

    Take care.

  • Cheers Mike - Many thanks for the advice. Today is the day, so I'll update this post over the next few days.

  • Cheers Spring2021 - All the advice much appreciated. As I'm a veggie, eating healthy isn't really a problem (I'd rather eat a tone of veg that processed food anyway) - I've been on 100mg of the Steroids for 2 weeks prior to the Chemo as the lump under my arm got so big my finger we going numb - the only side effect I've had from that is that I'm hungry 24/7 :-)

    We have a very active Cocker Spaniel, so the wife has already said that once I'm past day 9 of each cycle, we should make a point of taking him our together each day - but in any case I have a nice garden, so I think if I have to spend any days laid-out on the bed/sofa, I'd rather do it in the garden (in the shade of course)

  • Hi DengieBloke

    I’m 50 and I’ve also just been diagnosed with the same, got my PET scan tomorrow so it can be staged. Been told today that I’ll be doing R-CHOP chemo.

    I am also a long term user of sertraline which has really helped these past few weeks as my anxiety has been off the scale. I’m hoping to carry on taking it.

    I’m scared but just want to get started now as 2 lymph nodes have come up, one under my jaw and one in my groin, both painful.

    Best of luck and take care,

    Sarah

  • Hi Sarah  and it looks like your first post so welcome to the Lymphomaniacs Club.

    Although I have a different type of NHL I basically have experienced most types of treatment over my 22 years so I am always around to help out as best as I can ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Thank you Mike, that’s very kind, thank you for the welcome. It’s all been a bit of a blur, my diagnosis came after a gyne op to remove my ovaries and tubes, totally out of the blue, such a massive shock. However, in the past 2 weeks 2 lymph nodes, one in the groin and one under my jaw have come up. Got my PET scan tomorrow and see the consultant again the following week then it’s chemo time! Can’t quite believe it. I guess everyone feels like that in the beginning. Thanks again x

  • Good morning . Yes I think most folks are caught like a rabbit in headlights when the runaway train turns out to be a blood cancer like NHL. High Grade like DLBCL can grow rather quickly but the positive is once treatment starts it can go as quick as it came.

    Treatments like R-CHOP are very effective, yes a bumpy journey at times but in your type of NHL the aim is for cure so let’s look for this.

    You can’t control the treatment side of things but our main part in this is to control the noise between our ears, watch out for infection risks and try to keep some activity going as this bizarrely is one of the best ways of controlling some of the fatigue,

    We are around to help as best as we can ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Hi Sassy1234,

    Firstly... ask your consultant to prescribe you the steroids that they will be using in the R-CHOP (Prednisolone) as I was in extreme pain with my lump under my arm until I started taking those. The relief was literally overnight.

    Ok - Today is the first morning after the first day of my first cycle... Now your experience may be different, but I'll walk you through what happened to me - and how I feel (it's all good - so don't stress!)

    Firstly on arrival you immediately feel like you are the most important person in the room. The team of nurses are highly skilled, caring and will supply you with endless cups of tea and biccies.

    After inserting a canula, they give you some pre-meds, which frankly almost knocked me out. Then comes the "R" of "R-CHOP"

    In my case, I had no reaction at all, and everything ran smoothly. But you'll have a dedicated nurse monitoring you constantly.

    Once you get to the end of the "R" - the "CHOP" comes in quick succession (less than an hour I think?)

    By the end of it, I just felt a bit stoned to be honest (and still do this morning!)

    Some tips:-

    • Take plenty of 'feel good' snacks, squash
    • DO ask the nurses *anything* at all. They are experts at delivering this Chemo (far more than the consultants) and want you to be self-aware the whole time
    • Take a set of headphones. That way if you don't want to chat / listen to others, you can tune-out - I highly recommend listening to some early Pink Floyd albums (Meddle, Dark Side of the Moon etc.) Blush it works well with all those drugs Blush

    So here I am 'The morning after', and I feel fine. Absolutely fine. I just feel a bit stoned, but had a solid 8 hrs sleep.

    Cheers, and good luck with your treatment.

    DengieBloke (Paul)

  • Morning Paul

    Thanks for your reply, it’s so good to connect with someone who is going through the same.  The advice and tips you’ve given are brilliant, I think I’ll be listening to a bit of early genesis when the drugs start pumping!

    So glad that you’re feeling fine this morning, that’s brilliant.

    I’ve got my PET scan tonight so feeling anxious as to what will be revealed, but onwards and upwards.

    Thanks for the advice over the steroids, the lumps are getting painful and pressing on nerves so I’ll mention it when I have my appointment next Wednesday when I get to discuss the scan result and treatment plan.

    Have a good day and take care. 

    Sarah