Val - WM always surprises!

Published: 17-Dec-2013

FCR chemo,constant infections, rheumatism and swelling feet- WM always surprises!

‘Accidental’ Diagnosis: My name is Val Picton, I’m 67, I live in Worcestershire and I want to tell you how lucky I am.  On the 4th March 2008 I went to my GP with a leak from my LEFT nipple, she prescribed antibiotics.  I had another leak and my GP sent me to the local breast clinic for a mammogram and was told I had cancer in my RIGHT breast, an incidental finding!  I said I wanted to go to the Royal Marsden for my treatment.  I had a lumpectomy and cancer was found to have spread to my sentinel node. Further investigations revealed WM.   Another incidental finding!  At my local hospital I had been told the lymph nodes would not be removed because the cancer was small so if I hadn’t gone to the Marsden I would be dead by now. For the breast cancer I had radiotherapy. The WM required separate chemotherapy. In Worcestershire there is no Radiotherapy unit so patients have to go to another county which for me meant a whole day out for two minutes treatment.  I suffered from a radiotherapy rash and very painful lymph fluid retention in my breast, which required aspiration (about 5 times).          

FCR Chemotheraphy: For my later chemotherapy at the Marsden, I was given FCR (Fludabarine, Cyclophosphamide and Rituximab) and other chemo related drugs. The hospital stopped the chemotherapy after three and a half sessions, my body couldn’t cope with it but I continued the Rituximab. Later I had to be admitted to my local hospital at least 3 times with infections, my temperature kept shooting up and there were lots of nose bleeds, so after x-rays, water and blood tests and when stabilised later at home I had Pegfilgrastim injections to stimulate neutrophils.  I was constantly ill with upper and lower respiratory infections and lived on antibiotics.  My neutrophils were down to .3 and it was decided that I should have a course of IVIG, (intravenous immunoglobulin). This took place in April, May & June 2010. I reacted very badly to the infusions and had to be hospitalised each time so it could be dripped in over 24 hours.  It worked and my infection rate and visits to G.P for antibiotics has decreased but when I‘m ill it takes at least 2 weeks of antibiotics to clear the infection.

Is it always a WM Problem?  A problem I think we may all suffer from is when ill and our bodies tell us something is wrong- we and the Drs. automatically think, “is it the W.M?”  I spent 2 horrendous weeks in our local hospital really ill but with no diagnosis despite numerous tests, sigmuidoscopy, x-rays etc. but the Drs thought it was WM related.  I discharged myself; saw another Dr. two days later who diagnosed gall stones!  My gall bladder was duly removed and the consultant said he’d taken some pictures of my liver and did I know I had cirrhosis!  I then saw a hepatalogist who did some tests and informed me it was not cirrhosis but fibrosis and that my liver was damaged (7/12 on the fibro scan), and chemotherapy was deemed to be the culprit. After regular check-ups I was told my liver was repairing itself.

My next main problem was my feet.  They would swell, my toes were bright red and the whole foot and ankle extremely painful, there were other weird things going on as well so the Marsden referred me to a neurologist at UCHL.  After waiting a long time for tests, (lumbar puncture, MRI with enhancement dye and electrical conductivity tests), my feet were no longer the main problem.  Now hands and wrists became swollen with bright red fingers. In the morning my left hand in particular would be immobilised; immersing them in warm water and massage got them working again but the pins and needles were very painful.  UCHL diagnosed carpal tunnel syndrome and advised surgery on my left hand but as to my feet had no ideas.  This was a particularly low point for me so I saw my GP and said I thought it was arthritis and the wrist swelling was pressing on the nerve to my hand, he agreed, gave me steroids and the problem disappeared!  I still have flare ups but at least I now know what it is.  But what’s next?

Update- March 2013  The arthritis has become a lot worse so I’ve had to see a rheumatologist who decided I had poly arthritis which means of unknown origin, this is in my joints and soft tissues.  I’m now on a pill regime that makes life more tolerable as far as my joints are concerned.  The rest of 2012 consisted of constant infections, 3 lots of shingles and Aciclovir, 3 lots of steroids and 16 lots of antibiotics. Being unable to do much can get very frustrating.  I contracted E.Coli, and the prescribed antibiotics caused urinary problems.  It was mid October and my 3 monthly check up at UCLH.  I really should not have made the journey to London I felt quite ill but as you all appreciate when on watch and wait your 3 monthly check is important to you just to make sure nothing has deteriorated and I was convinced I had deteriorated.  On my way to the hospital I had to stop, I was sweating profusely and had a pain in my chest, felt totally disorientated, I found myself clinging to railings and then sitting down.  When this horrible feeling had passed I continued to UCLH, saw Dr. D’sa who said my bloods were as usual and advised me to see my GP at home and have my heart checked out.  After lots of tests and ECG’s it turned out I’d had a heart attack and there was me blaming feeling so poorly on the W.M.!!  Apparently my little body was fed up of being ill, the E.Coli infection was the last straw and by giving me a heart attack it let me know it had had enough.  I’m the one that doesn’t eat salad or fruit without peel, has no ice in drinks and spends a fortune on hand spray.  I don’t go to the theatre, cinema or anywhere there are crowds of people and yet the bugs seem to find me. After radioactive isotope injections and electrocardiograms and numerous tests, it was decided I had degenerative heart disease and a leaky aortic valve.  The night before Christmas Eve my husband had to call an ambulance as I had another heart attack.  Nothing serious- just a little one.  My grandchildren never see me in the winter because they seem to have colds one after the other.  

My last check up at UCLH on 23rd of January it was suggested I start having IVIG again.  My last session was in 2010 at the Marsden and my immune system did benefit but I reacted very badly to the infusion and had to stay in overnight each time.  Bearing this in mind UCLH thoughtfully booked me in overnight and did the infusion as slowly as possible which was fortuitous because once again I reacted badly, frightened the poor staff nurse to death and the drip was stopped.  I had anti histamine, anti nausea, piriton injections - and an ECG - and finally finished the infusion about 3.30 a.m. although the consultant suggested I stay another day I wanted to get home, if it’s suggested next time I’ll listen and stay as I was poorly when I arrived home.   My next IVIG is on 4th March so we shall see what happens then.

So for me the year since the last conference hasn’t been too bad as far as the W.M. goes, it’s just all the peripheral things that it is responsible for like the sweats, lymphodema, shingles, arthritis, infections, lower leg pains and of course the heart attacks .  As I said last year - WM is always full of surprises but I have found the online UKWM Forum a mine of information and it has helped me to realise I am not alone and there are lots of you a lot worse off than me.