Ulrike - A Rituximab Success Story- but look out for other cancers!

Published: 17-Dec-2013

My WM story began in early January 2009 when, at the age of 67, I discovered a lump under my arm

Diagnosis:  My WM story began in early January 2009 when, at the age of 67, I discovered a lump under my arm.   Why hadn't I noticed it before?   A phone call to the surgery and "the doctor will see you this afternoon" was the reply.  The GP felt the lump and said there was another, larger one, in the other armpit.  I was sent for blood tests and a week later got the results.  Apparently my blood counts were completely haywire so I was referred to the Haematology Dept at Hemel Hempstead Hospital.  The consultant was pretty sure it was a lymphoma and he arranged a biopsy of the lump, a CT scan and a bone marrow test, all within the space of two weeks.  When the results were in he confirmed it was non-Hodgkin, and at the beginning of Feb 2009 the final diagnosis of WM was made.  I was put on 'watch and wait' for a few weeks, my chief symptoms being night sweats, itching, nose bleeds, weight loss and fatigue.

Chlorambucil then Fludarabine:  At the end of March it was decided I should try Chlorambucil which I took for 9 months.  This approach was to no avail, as my blood counts stayed the same as did my other symptoms.  I was then given a few months' rest before the next line of treatment in Sept 2010.  This was Fludarabine which was stopped after three cycles as I wasn't tolerating the side effects very well and it was having no measurable effect on the disease

Rituximab Success:  In May 2011 treatment was begun with Rituximab (DRC), although it took three applications for funding to get this treatment approved.  I am grateful that my doctors were persistent!  Six sessions (and some unpleasant side effects) did the trick.  Blood counts improved, secondary symptoms faded, energy came back and weight was regained.  I was declared to be in remission in Nov 2011, and am now on 3-monthly check-ups. 

Along the Way:  Those are the bare bones of my journey. During treatments I had one trip to A & E with a temperature above 38 (a urinary infection), a couple of visits to Moorfields for a haemorrhage in my eye and a 3-week stay in hospital with a chylothorax. This last condition is an accumulation of lymphatic fluid in the pleural cavity.  I was well looked after by the thoracic surgery team at Harefield Hospital, where the treatment included total parenteral nutrition (no food at all for 2 weeks, not even a drink of water!).  During my stay in hospital my haemoglobin dropped to below 8, requiring a blood transfusion and my weight dropped even further.

During Rituximab treatment: I had to learn to inject myself to stimulate the white blood cells, which was a new skill for me.  Also I didn't tolerate the drugs very well so had to go slow on infusion days.  I was usually first in at 9 am and last out at 6 pm which gave me plenty of time to get to know the excellent nurses in the Helen Donald unit at Watford Hospital.   Alongside all this, my other ailment, which I have had for many years, skin cancer (basal cell carcinoma), seemed to go into overdrive and I was constantly at the Dermatology Clinic having cancerous bits removed.  I don't know if this is linked to the lymphoma, but researching on the Internet, I rather think it is.
I now feel in a good state of health, and am keen to make up for lost time.  I am grateful for the Rituximab treatment which really seemed to be the one that made the difference.  The doctors and nurses at Hemel Hempstead were unfailingly brilliant, and I have complete confidence in them.  And just as important were the love, prayers and support of my family and friends, which kept me positive throughout.

Update January 2014: I wrote the above in November 2011, and am pleased to say that I have stayed in remission from the lymphoma ever since.  Visits to the clinic at Hemel Hempstead have been reassuring, and I remain on a four- monthly monitoring schedule.  Unfortunately my intention to 'make up for lost time' has been somewhat frustrated because in March 2012 I was diagnosed with breast cancer, which resulted in a mastectomy.  Planned holiday to Provence out of the window!  Also the skin cancer came back strongly in 2012 and 2013, requiring more surgery.  I am told that women with WM are at higher risk of both breast cancer and skin cancer and I seem to be on the unlucky side of that risk equation. However, the positive news is that I am in good remission, and not taking any medication at all!  Can I make up for that lost time in 2014?