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!)

  • Some folks are told to keep the injections in the fridge so they would take them out for an hour to get to room temperature, but I was told it was ok to keep them out of the fridge but store in a cool place and out of the sun…. a good question to ask.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Hi,

    I think that having a bumpy start and the stress of that plus all the unknown stuff going round in your head is the perfect excuse to suffer from a headache. 

    In my experience a walk always does me the power of good. So fingers crossed you get some benefit from that. 

    I don’t have the injections.  I think different health authorities do some of it slightly differently and also they tailor it to us as individuals. Other pre-existing conditions, past illnesses, how fit, how old, how healthy etc. I am just told to isolate more during Week 2 when my bloods/platelets drop.  

    The nurse team should update your book each time with all your blood counts etc. So you can see for yourself if everything is under control. So far mine all seem to get back into the normal ranges.  I take my temperature twice a day with an in-ear thermometer just to be on the safe side as apparently you can feel well but have a high/low temperature which if it stays like that they want you to alert them to. 

    However if they think for whatever reason you would benefit from upfront protection for a low white cell count then they clearly want to help you have an easy time in relation to any possible infection type risks. 

    Don’t beat yourself up for not feeling great today.  Tomorrow is a new day and you can start again and just take it as it comes.

    I have chemo on a Thursday but I book the Friday off as a) I always think this time I’ll feel like sh1t and b) I need to use up my annual leave. Thankfully so far I feel fine each time but it’s good to know I can take it easier that day anyway.

    Although last Friday I took the cat to the vets, did a big shop and steamed cleaned the carpets so not sure I’m good at taking things easy :0)

    But if you can afford to book some time off maybe consider the day after for your next treatment that way you won’t feel bad and beat yourself up if your not feeling as good as you would like to. 

    Side effects are cumulative to a certain degree but in my experience they can also be temporary.  I’ve had a few things which lasted just a few days or just one cycle and not reappeared and other things, like my bowel habits which have got steadily worse!! 

    Be kind to yourself.

    x

  • Thanks so much for taking the time to respond again, can’t tell you how helpful it is, really appreciate your kindness.

    I was 50 in December so maybe because I’m older they’ve given me injections to take?? I start them in the morning for 5 days.

    I think I’m going to get my hair cut soon, it’s long at the moment and that’s stressing me out waiting for it to thin and start dropping now I’ve had my first cycle.

    I love your positivity and the way you approach your treatment. I think once I get my head around it a bit more hopefully I can be a bit more like you. I hope so anyway.

    Hope your chemo goes well tomorrow. Thanks again.

    Take care,

    Sarah x

  • Hi Sarah,

    I'm 50 this month too... and I've also been given the injections to self-administer. First time was a bit squeamish, but like everything else, you soon become inured to it all.

    Like you, I cut my hair short in anticipation - in my case it started falling out about 2 weeks after the first cycle, but I appreciated it's a much bigger deal for a woman than a man - as my wife pointed out, 50% of my male friends are slap-heads, so no-one will bat an eyelid.

    One thing the nurses (and Mike - The Highlander) have told me that I think sticks out is that you should 'Own it' - It's your cancer, and you'll deal with it the way it suits you. In my case, gallows humour and complete irreverence... My "When my hair grows back, it's gonna be ginger an curly" T-Shirt had the nurses in stiches at the hospital on Tuesday, but they agreed that my "Not dead yet" one would be a bit much for the other patients Slight smile

    There isn't a one-size-fits-all approach here. Follow the meds regime, try and get your head straight (as best as we all can), and take the little wins wherever you can (In my case, gaining control of the TV remote as the missus doesn't want to force me to watch Wimbledon whilst I'm 'ill')

    And if you haven't got a dog.... get one. It's impossible to feel sorry for yourself when a spaniel is looking you in the eye and trying to persuade you that it's not been fed for a week.

  • Hi Sarah,

    I hope you are feeling a bit better today. 

    In terms of hair loss from another woman’s perspective I would say try not to worry.  I started my treatment before the hairdressers were back open so it needed something doing to it regardless!!

    We all know it’s going to happen and for me I kind of just wanted that process to start.  Buying wigs, hats etc was something I had control over when I had no control over anything else that was happening.

    I could start pulling my hair out in chunks from Day 12. My brother reluctantly cut my hair and shaved it as low as he or I dared him to. I kind of liked the slightly battery farm chicken look I ended up with though and for me it was easier to see the rest of it wash out in the bath over the following few weeks rather than go from all to nothing.

    Someone else’s experience on here of the NHS wig procurement process was not a positive one so I also made an appointment with a shop in London.  However due to lockdown I couldn’t go in person unless I had a note confirming it was for medical reasons and because the doctors are busy it took an age to get that. 

    But I am pleased to report that my NHS experience was lovely.  One of the nurses asked a professional wig maker salon in London to make contact with me (I am sure different health authorities do it differently) so I didn’t have to make the first call.  They asked me to send photos/selfies of me with my hair as I like it and then set up a video call.  They had chosen 3 wigs which they felt suited the brief and even wore them to show me what they properly looked like.  Once I decided on a style/colour it arrived by next day delivery and all I paid for was the shampoo kit. 

    I attended the other wig salon in London a week later and had an equally positive and kind of fun experience.  I paid for two extra wigs myself from there but you don’t pay any VAT if it’s for a medical reason.

    My natural hair is curly/frizzy and I’ve spent my life straightening it.  Now it is wonderful to have such low maintenance hair that looks good every time!  And my NHS wig is still my favourite.

    I also bought some soft cloth turban hats for wearing at home in the evenings/weekends etc. You don’t want to open the oven door in a synthetic wig!!

    And if we get more hot weather again it can be hot in a wig. But there are loads of options to choose from online and if you don’t want to go down the wig route you can try headscarves and hats etc. Some retailers do fancy evening wear and wedding suitable headwear too.  So if you don’t want to go bald I’m sure you’ll find something you can be ‘happy’ with.

    Obviously you don’t just lose your hair on your head but that is also a blessing as it makes ‘maintenance’ so much easier. So a win in my book.

    Although I would say you don’t always appreciate the hair that’s in your nose until you don’t have it. I suffer with a runny nose in Week 2 and if I’m out and about it can be like having an open tap in the middle of my face! So I’ve always got a tissue close to hand.

    The thing that currently makes me happy though is that I’ve not yet lost my eyebrows or eyelashes.  As mad as it sounds that pleases me more than anything.  I bought fake eyelashes and brow kits at the beginning in preparation but the faff of having to do that every day would depress me so whilst I don’t have to I take that as another small win. 

    There is loads of advice and tutorials online regarding hair, makeup, skin care etc. If you need it and some of the videos from other women and their experiences can help set expectations and also to ease concern. 

    I know it can feel sad that life has come to this and we even have to know about half of this stuff but give yourself a bit more time and you’ll find what you need to get you through.  

  • Evening folks, 

    Sorry for the late reply, thanks again for the really great advice, it’s just what I needed, can’t thank you both enough.

    I managed a full days work today (work from home) however, I’m now on the sofa with a pounding headache and what I can only describe as palpitations and a racing heart….oh god….I sound like a right hypochondriac!! I promise I’m not usually like this!! 

    Also managed another walk with the dog…I’m also owned by a cocker spaniel!

    I did my first injection this morning, didn’t feel a thing…I think it’s probably due to the lockdown ‘padding’ I still have!

    Hope you’ve all had a good day. Nearly the weekend, Friday is usually my bottle of wine and a few gins night….think I may give it a miss this week.

    Take care,

    Sarah x

  • Hi Sarah,

    Well done, sounds like you’ve had a productive day.  

    I occasionally get tight chest pain but it tends to only last 10 mins or so, however if you want to set your mind at rest you can call your out of hours number and speak to the medical team.  They won’t mind. Always better to be safe than sorry if you are worried.

    Make sure your drinking enough water.  You want to get excess toxins out especially during the first week. This can help with headaches.  Although it could just be the rollercoaster week you’ve been on!

    I attended my outpatient appointment this afternoon and the good news is that it’s all working!!

    There is some time lag as I had the 5th cycle last Thursday and my scan was the week before that but that means they were more than happy with results after just 4 sessions :0)

    All blood results, liver and kidney functions all within normal ranges.

    I’ve still got cycle 6 to go and then 2 inpatient stays and the radiotherapy. So still got a way to go and whose to say what may come.

    But keep the faith, so far this stuff works! 

    Friday tomorrow :0) 

  • Hi Sarah,

    Day 5 for me this morning, so starting off the day with a healthy breakfast of 8 pills and an injection also!

    It's funny how quickly you think nothing of the injections or pills - one 'nice' surprise is that the injections (in my opinion) cause the body to use so much energy making new white cells that you lose weight - I'v been plotting my weight over the first two cycles, and I'm definitely seeing a downward trend (despite the munchies!)

    Friday is also usually my 'bottle of wine' evening, but I was told by my nursing team that a 'couple of beers or wines in week 3 is ok, but avoid all spirits, and don't drink too much as it will affect the treatment' - I'm not sure how true that is, but I'd rather be healthy than have a drink.

    Back to my "huge lump" - well... it's about 10% of what it was at the beginning of the first cycle, and I'm only day 5 into cycle 2. This bodes very well, as my wife pointed out, if the visible lump is going, then the small ones you can't see will be even smaller or gone. Let's hope so.

    I woke at 4am yesterday (Steroids!) - but got a solid 6 hours work done, and felt really on-point when I was doing it, I did however need a little 2 hour snooze in the afternoon!

    Next week is my 50th, and after initially wanting family and friends to come to the house (in the garden), the missus has put her foot down and limited it to immediate family (which makes sense... just a bit depressing) - The one good thing to come out of this that she has agreed that I can buy a manky old Land Rover to muck about with... when I cna find one!

    Anyway - hope you have a good weekend,

    Paul

  • Hi folks

    Hope everyone is having a great weekend. 

    Just looking for a bit of advice/people’s experiences please. I may just need a swift kick up the bum actually!

    I had my Rchop last Monday and Tuesday. Followed by 4 days of steroids, finished them Thursday. Started the filgrastim injections on Thursday, got the last one tomorrow. Yesterday and today have been awful. So fatigued. Got spots and blobs in front of my vision which I used to get with low blood sugar but would disappear after eating, now constant and really annoying and disturbing. I’ve just taken the dog out and literally had to come back as my legs feel like I’m wading through jelly and I’m out of breath.  Feels like I’m getting over a really bad bout of flu.

    Now do I need to just have a word with myself and soldier on, is this what I’m to expect? It’s pretty grim and life is miserable and I’m only one treatment in! I miss my ‘normal’ weekends already.

    Any words or advice would be gratefully received. 

    I’m sorry to be negative just having a bad couple of days and hoping things will improve.

    Take care,

    Sarah x

  • Hi Sarah , first I would call your specialist cancer nurse about the spots in your vision - just in case.

    As for the fatigue, it’s early days and your body is still in the initial ‘what in heavens name are you doing to me’ shock stage.

    Regular simple exercise is very important to keep your mobility up and your muscle wastage down.

    I started with short circular walks, not far from home so I could get back home with out retracing all my steps.

    You are doing great, this is all rubbish and you have to deal with the rubbish in the best way possible ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile