Diffuse B Cell Non Hodgkins

Hi New Member 2020,  I've just had a de ja vu, I'm 6  months past my last chemo, RCHOP for NHL they have appeared to have treated me with success.  My journey started Christmas Eve 2019.  Please feel free to ask me any questions, read my info or message me, happy to help if I can. 

Hi DLBC is treatable and these days cure is considered as a feasible outcome, I heard it 11 years ago when I was diagnosed and not I am past the 10yr mark am considered cured, some are being told that now after 5 years, so draw strength from knowing this.

As for work see how you go, some sail through, some struggle and nearly everyone will tell you the is a cumulative effect after each round of chemo. I thought the first round was a walk in the park, 2nd not to bad then fatigue started, I did not work but felt I could have at times. The one thing you do have to factor in is the will be times during each cycle when your immune system is shot and you are at high risk of infections taking hold. If you can work from home then give it a go, but don't over do it, find a balance that works for you and be prepared to adjust your expectations after each cycle. I found napping helped later on and if I fought it, it just took more out of me. 

As for some sort of life - yes you will have some days of normality and as you get into the treatment you will find the 21 day cycle starts to dictate routine, appointments and blood tests, steroid impact, recovery week etc, you will understand after 3 cycles what I mean. 

any questions ask 

John 

Thank you John for this reply.  Very hopeful and informative and it is just what I needed to hear.  I intend not to go out too often and I feel so intensely cold.  I have always hated the cold, Italian blood, and with Covid, not much going on and possible lockdown, I won't feel that I am missing out too much. Work will be important to me and I don't work full time and my students are very flexible.  Thank you.   I need this site.   Although friends have been helpful, I can't help but feel that it might be all a little too much for them.  A friend came before to collect some things and I was dying for her to stay but  I felt she wanted to go.   I was also a little agitated.  I didn't realise why until I thought about it.  I have been given steroids and apparently they can increase anxiety which it certainly did.  When I realised it was probably the steroids, I felt instantly better.  I'm so pleased for your recovery John, it gives me such hope.  Thank you.

Oh Julia, that is brilliant.   I hope that is me too.  I will take hope and inspiration from this.  Did you feel ok on chemo?  Did you work?   I have so much to ask you.  M

Hi M, what John just said is exactly the same as me.  I didn't work, but did my accounts, gardening, ran my car on week 3 of chemo but to be honest I had 'chemo brain' its like a fog, couldn't concentrate very well.  If I were you I wouldn't rule anything in or out, see how you respond the chemo.  The most important thing is to do what your body tells you, rest up, move, cry, I got quite emotional sometimes, usually in a morning so find a friend you can moan to, then laugh about it.  Dont forget, it is only for 'now', so look forward to the Summer.  Oh and shaved my hair off the day Boris locked us down in March, I now have a full head of hair, no grey, curly, who knew!!!  Had a wail of a time with wigs and head scarves, this didnt bother me, it bothered other people more, I just wanted to survive with or without hair!  Keep focused, you can do this...! J x

Hi Julia

i was having a look for people with stage 2 NHL (DLBCL) and I came across this thread. I hope you don’t mind me contacting you.

I was diagnosed on 22/12/20 with stage 2e DLBCL. I started RCHOP on 31/12 and I’m 2 cycles in. Due next cycle on 12th Feb.

how are you getting on ? xxx

Hi Jen, thanks for getting in touch, I am doing well thank you, I finished RCHOP end of June last year, had the all clear, same at 3 month check up and I have my 6 month check on 19 Feb so keeping fingers crossed to put it mildly.  So you are coming up to your 3rd cycle and getting used to the swings and roundabouts of RCHOP?  It is quite intense but do-able, but I found the fatigue cumulative which I knew about but I thought I would be different and not be quite as exhausted as I was by the end.  My hair started to fall out about 3rd cycle so be prepared, I just shaved mine off 23rd March lockdown day, now I have 3-4 inches, came back curly, lol, I have discovered the joy of hair clay!!!  I try to keep to a walking and yoga exercise regime, of whatever I can manage, my body tells me to rest, you have no choice but then you pick up again, so recovery is a bit up and down but generally up.   Please feel free to message me any time.  I found the stress of chemo and pandemic quite difficult to be honest and found that talking to people on this forum helped me a great deal, so do not hesitate to contact me about anything..... J xx