Just some info. which might be of interest to anyone about to embark on RCHOP. I'm now about to have a CT Scan to determine whether I need one or three more infusions to complete my treatment (predicted total of 6 or 8 - just done No.5).
Having embarked, of course, with great trepidation on the regime, it has really not been the scary voyage I anticipated. I was diagnosed with fnhl in 2000 but it kept at bay without medical intervention w&w until November last year when I had a visible bump by my ear and substantial swelling under my arm all attributed to the lymphoma. Started treatment in Feb and have had it every subsequent 3 weeks by a half day of infusions. I am fortunate in that I am retired so could control my contact with the outside world at critical times to avoid infection. This I have been quite strict about and it has played havoc a bit with a social life but I thought it a small price to pay to try and stay clear of bugs, especially recommended around days 5-12 approx after chemo in my case.
To my surprise to date, I have not experienced sickness, fatigue or depression, but have had 2 short spells in hospital. One week on catching a cold from my husband (isn't that just s**d's law!) and the other, a couple of days to monitor me in a neutrapenic period when my immune system was out and I was flagging a bit with sore mouth and reaction following a prophylactic chemo by lumbar puncture. Having the LP wasn't a problem but I had a sustained headachey feeling (unless lying down) for quite a few days.
I have been very lucky in the support I have had from family and friends. The hair loss issue was resolved with minimum angst by the free supply of 2 wigs on the UK National Health and these are *brilliant*. In fact I think when my own hair comes back the family will say "put your wig back on Mum!" I would recommend 'biting the bullet' and having your hair cropped short, then the fall-out isn't traumatic in the same way ; and getting prepared early with a wig. ( I live in the UK near Portsmouth and went to a great supplier attached to a hairdresser called Treloggans. They had a large stock and were used to supplying sensitively to patients like me). I have 2 Raquel Welch numbers - such good quality and natural that I have never felt downcast in the least by this strange side affect which I know initially worries us all.
I have lost some weight (periods of loss of appetite) and have had quite a sore mouth some days but the hospital I attend, Queen Alexandra's, has addressed any problems well. I should be interested to hear anyone else's experiences : I know we are all so different in our situations but this *really* hasn't been so bad.
Take heart out there.