49yo - Just diagnosed with Stage 3 DLBCL

Hi Paul, thanks for the update, great to hear how you’re doing. I had my first session on Monday. Like you, they had a terrible time trying to get the cannula in….4 attempts on both hands and they got it in.

I had a bit of a reaction to the rituximab, temperature spiked and then later my throat felt like it was closing over so pumped full of piriton and paracetamol and I got through it. However, as the infusion had to be slowed down I had to go back yesterday for the rest.  Felt fine last night, had food, drank lots of water. Went to bed, but woke early hours and couldn’t get back to sleep. Feeling dreadful this morning, was hoping to be able to do some work (I work from home) but I’ve not got out of bed yet as I’m very unsteady and feeling dizzy and sick.  Just hope it passes soon.

I hope it gets easier, as I’m struggling this morning.

Hope you have a good day.

Sarah

Hi Sarah,

Sorry to hear it's not going so well for you.

I have to say I definitely feel the effects of it all more this time than last, and went back to bed for a few more hours (with one of the dogs for moral support... at least that what he was persuading me it was...) 

I don't know if your treatment is provided in the same way as mine, but they give me Piriton, Paracetamol, and some others I can't remember with the first bag of saline before the Rituximab to lessen any effect of it?

Working in the first week of the cycle is a lost cause - Even I don't try that.... If you fee dizzy, take the anti-nausea tablets straight away (I took one this morning when I felt slightly dizzy, and now I'm fine) - and if it is affecting you that way, take them 3 times a day (as prescribed in my case) pre-emptively. No point waiting to feel ill first.

Cheers,

Paul

Thanks Paul for the advice, it’s much appreciated. I think tomorrow morning I’ll take the anti sickness before I start feeling poorly.

In your experience, how many days does it take to begin to feel human again? 

Cheers,

Sarah

Hi Sarah,

In my case the woozy / cotton-wool head went after 3 days. The tiredness has persisted throughout however - I just manage it with 'naps'

Prepare yourself for the munchies though! They last two weeks!

Cheers,

Paul

Thanks again Paul, it’s good to know what to expect! Bring on the munchies…I’ve only managed 2 ginger nuts today!

Cheers,

Sarah

It's a running joke that I have 3 breakfasts before my elevenses... 

Interestingly I've been on various diets over the years to control my weight, with varying levels of success, but Chemo really seems to work! 

Hi Sarah, 

Sorry to hear you’ve had a bumpy start. I hope tomorrow is a better day for you.

The different drugs offer up different side effects and dizziness is one of them. I’m lucky that I’ve never felt sick but I do sometimes feel dizzy/suffer mild balance issues.  However knowing that I don’t actually feel sick means I can manage the dizziness without taking the additional anti sickness drugs.  Only you will know how you feel though but you will quickly come to understand your side effects and manage them in the right way for you.  

I bought every ginger food and drink stuff going to stock up on beforehand and whilst I like ginger I’ve not needed any of it in an anti sickness way, so quite a bit got wasted, but its what everyone tells you to do so being new to this game you do it.

It’s only natural to overthink everything and also want all the answers, when will this happen, how long does that last etc. I know I was hungry for all the information at the beginning so I could be more in control. But as you can see from all of our responses no one has the exact same experience. 

I did suffer with not being able to sleep at night due to the steroids when I first took them before chemo started but my body has got used to it now and the weaning dose helps I think, so I sleep pretty much all through the night, if my cat doesn’t wake me up! 

Likewise I had initial food cravings but that dropped off as quickly as it came too.

Some recommend small meals and often but that doesn’t work for me as I like the routine of 3 meals a day.  If for whatever reason I haven’t had a good nights sleep I don’t try and make up for it in the day I just push on through to try and keep a good sleep regime.  I just get outside for some fresh air to keep me going. 

Initially my bowel habits were on top form but for the last couple of cycles it’s slowed down big time so I’m drinking the sachets they give you and supplementing that with prune juice etc (TMI!) so things change and we just adapt. 

I say all this not because you should do likewise or because you will experience the same but just to help demonstrate that we all find our own way and whilst in the beginning we might think we’ll never know what to do and when, actually we learn to adapt quite quickly with a new, hopefully temporary, normal. 

I actually burst into tears when I left my first cycle as it was such an anti climax! And whilst I accept I’ve been lucky with the limited side effects, lack of fatigue etc.  That’s not to say it won’t catch up with me further down the line.

All any of us can do is look after ourselves in the best way we can.  Seek advice from the professionals looking after us and support others from the side lines. 

It can feel a lonely place to be, especially when a lot of the awareness of cancer out there appears to focus on the other main types of cancer. Often family/friends don’t really understand the details so we can feel like we have to keep saying the same stuff to everyone we have to tell. This can be depressing and effect our mood and our own feelings of injustice etc. But whilst I still don’t agree per se one of the A&E doctors told me early on ‘if you had to pick a cancer to get, this is the one you’d choose’ ! Says he who hasn’t had it :0)   But in some respects, flicking through the other sites on here I can see that there are much worse things happening to others. 

So I figure if I’m not dying today then why waste it, it’s just another day.  Some days are better than others that’s for sure but you are on the road now, treatment is happening, and that means a step closer to hopefully some positive end and that in itself can be a boost.

Take care.

Hi Spring 

Thank you for your message, it’s really helpful reading your experiences, I’ve had a really low day, wasn’t expecting to feel so rough as I believed the effects were accumulative so thought I’d be up and at it today! Instead, I’ve been napping on and off with a banging headache. Oh…I sound like a real moaner..I’m not usually.

Your advice is really great though and puts things into perspective.

I have to start on the filgrastim injections tomorrow.  Have you done these? 

I’m off to take my dog for a short walk now, he’s been so good all day, so hoping the fresh air will help.

Thanks again, the support means a lot.

Sarah

Hi Sarah Sassy1234, great conversations going on

I was on filgrastim injections once a day for 4 months following my second Stem Cell Transplant..... I did them after breakfast every morning. I took a few Paracetamol with breakfast then did the injection.

Pinched an inch of skin, needle straight in, inject, them straight out - do not rub the injection area as this developed the bruises.....and make sure to change positions left, middle and right fit every injection.

Bone pain can be a problem but I had no real pain and I was told that this was down to my team prescribing Piriton or Clarityn Antihistamine as this bizarrely stopped the pain developing, these were taken as per the dose instructions - worth talking your team about this as not a lot of hospitals do this ((hugs))

Brilliant advice Mike,

I’ll do it after breakfast with a couple of paracetamol. 

Thanks again,

Sarah