Overwhelmed

Note books are good. The professionals you deal with are not out to hide anything. The issues arise as ether you have not taken things in or they assume someone has already explained things and it's not happened.

When I started R Chop i was aware of things improving within a week or two. If you are on steroids be ready for the day or so after they finish each cycle. In my case it was like a switch being pulled to switch off my energy part way through the day. By the start of week three I was ready to go again. 

No idea if my bloods would have been ok but I just wanted to start the next cycle, By cycle five and six I appreciated the week of "normality" before starting again

Thank you.  I am expecting a steroid rollercoaster as I was on another steroid for a couple of weeks before chemo, to help shrink (I think) the ‘’mass’ pressing on my back.

So I’m a little worried that I’ll get the pain back during the lower dose/off days of the P steroid but I’ll ask about that and what can be done.

I guess it’s just being brave enough to ask the questions I don’t want to hear the answer to.

Once treatment starts you will find it has an immediate impact on the mass pressing on your back and you should feel some relief, the steroids during treatment play a different role so don't worry that things may return to how they were pretreatment because you are not on them every day.

R-Chop really is a very effective treatment, I had it back in 2009 and am now considered cured, so try to take some positives from the group posts and a good mantra to have is you will be a good stat because someone has to be so why not you. It helped me stay positive along with a dark sense of humour that not everyone appreciated at the time. 

Thank you.

I’m pleased to hear you’ve had a good RCHOP experience and that it’s been a long time since.

I think I’m just currently heightened to any new feeling or pain in my body at the moment.  Just expecting it to be something else bad.

Is it the chemo drugs, is it working, is it not, is it a side effect, am I doing enough to eat, drink the right things.

By cycle 3 you will know what's normal and how you are responding, we have all been where you are now, lots of questions and wondering is it this or that, you will get in to a routine and know what to expect. any questions just ask the are a few of us who know and understand what you are experiencing 

Based on my bodies reaction to chemo my growth area was shrinking in front of our eyes so I expected the massive pain I was enduring before treatment to start to disappear but this was not the case, the pain was still there but it was the muscle and nerves starting to stretch and be released from their captivity but I started to have aches and pains in other areas and this was whole body being systematically cleared out, remember where the blood goes the chemo goes.

Try and eat a healthy balanced diet watching out for foods that can bring a food based infection (think a pregnant diet) as this is your ‘fuel’. Even more important is the need to keep drinking water regularly, aim for 1.5 to 2 litres a day as this is the main tool to protect your kidneys.

Thank you. I appreciate it.

Thank you.  I am at least very good at drinking a LOT of water.  Always have been.  Also herbals teas etc.  Sadly I can’t taste anything as exciting as coffee but I only drank 2 in the morning and haven’t even tried since chemo as my taste buds have been hey wire since my original dose of other steroids a few weeks ago. 

Happy to eat, drink and exercise as much as is required, marginal gains! 

Hi Spring

I am also recently diagnosed with DLBCL; mine is Primary Mediastinal so I have a large mass in my chest squashing my lung. I’ve had 2 rounds of chemo, one RCHOP and one DA EPOCH-R. I’ve got amother 4 rounds of DA EPOCH R to go, which I have to have as an inpatient as it’s a 4 day continuous drip. 

I can identify with your situation and I’m not surprised the partial information from your Dr has made you freak out and imagine the worst - it’s very hard not to. Can you arrange a meeting with them to clarify some aspects of what they have told you, what has led them to draw those conclusions and what the implications are? I’ve found so far that having partial information is far more anxiety-provoking than having thorough answers. 

Have you looked into getting some counselling or therapy as a space to unload? All the feelings you have a valid - it’s a LOT to get your head round and you are under no obligation to be cheerful. 

Oh yes - I’ve found it very helpful to write EVERYTHING down in a detailed daily diary. How I am feeling, symptoms, side effects, what I’ve done that day, what medications I’ve had etc etc. It helps me feel more in control.