I went to my GP in July 2003 as I had a bad cold which had been ongoing for 2 months - rather strange?  He did 3 blood tests over the course of 3 months, convinced that I had glandular fever as my neck glands were badly swollen and I was prone to infections.  By September, all 3 tests had returned negative so he referred me to my local hospital in Swindon.  I went in October to have more blood tests and had to wait 3 weeks for the results.  I never believed for one minute that anything major was wrong - how stupid was I !!!

I was told on Nov 11th ( I shall never forget that day) that I had CLL at the age of 40.  I was on my own as no-one had told me to bring anyone in with me.  Luckily I had a friend waiting in the car as I could not drive myself home.  I had a further appointment in Jan 2004 and again in July 2004 to check the blood count and was then signed off from the hospital and told to have an annual test with my GP (who is absolutley wonderful!).  I was told originally I have around 20 years to go - so 18 to go now but no treatment for another 4 years maybe when the white cell count reaches 100 (it's 33 now).  The 'watching & waiting' game is the hardest thing but I have good friends, a 7 year old daughter and a good husband so I have lots to take my mind off things.

Treatment Profile

No treatment todate.

Name: Caroline Young

Age: 42

Location: Swindon

Medical Overview

Positive Clinical Markers

Negative Clinical Markers

Neutral Clinical Markers

Chromosomes 

I was diagnosed with Non Hodgkins Lymphoma in September 2004, this was changed (more of this later) to a possible diagnosis of CLL and NHL.

However the illness story began, I believe, in January 2003 when I had severe flu which led to post viral fatigue syndrome. I developed enormous lymph gland swellings in my neck, head and armpits and was off work for 6 months.  I had one blood test in January that showed a slightly raised white blood count.  Although my lymph glands went down eventually, the ones in my neck never completely disappeared.  I made a phased return to work, but I never really recovered my energy levels and continued to succumb to infections.

In early May 2004 I awoke to find my lymph glands swollen again as before, feeling absolutely dreadful.  I went to my GP who said the post-viral fatigue had returned.  Within a couple of weeks the glands had gone down, but the ones in my neck and right armpit remained.  I began to sweat profusely and still felt exhausted.  I then returned to my GP who decided to refer me to an ENT specialist (the sweating was put down to menopausal symptoms).  No blood test was done despite my suggestion it might be a good idea - 'it won't show us anything'.

I waited six weeks and saw an ENT consultant at my local hospital who thought my glands were 'pretty impressive', frankly I could have auditioned for a part as a Cardassian in Star Trek Deep Space 9 and not needed any prosthetics.  I then waited a couple more weeks for a needle biopsy appointment, that seemed not to have worked and I underwent a second procedure a couple of weeks later.  I was then called to an ENT outpatients appointment in early September. I was fortunate to have my husband with me.

I saw a registrar and he told me I had TB!!  How could I have TB?  I needed to see the consultant and waited in the corridor. Along came a nurse who wanted to know if Tuesday was OK for my urgent lymph biopsy surgery.  What surgery?  We then saw the consultant who informed us that I didn't have TB, I had Hodgkins Lymphoma - a cancer - but not to worry because Hodgkins Lymphoma was the best type to have.  (You couldn't really make this up!!).  I would have the surgery and then be seen by the consultant haematologist.  My husband and I went home in shock and spent the weekend on the internet researching Hodgkins Lymphoma.

I had the lymph node excision on the Tuesday and the surgeon seemed shocked that I hadn't seen the Haematologist.  In the afternoon, post surgery, a Haematology nurse came to see me, the horsemen of the apocalypse are probably more cheerful.  Then the consultant came to see me and explained I had a Lymphoma, probably non-Hodgkins, and would need a bone marrow biopsy.  My husband had not been called by the ward at this point so I was on my own.  I called him at home and he arrived as I was being wheeled to the (what I was about to find out) cancer treatment centre. The bone marrow biopsy made me scream and scream and was eventually abandoned.  I was told to come back for CT scans and results from the biopsy.  The diagnosis was NHL.

I started my first of 6 treatments of R-CHOP at the end of September.  When I returned for my second treatment in October I was told by the consultant that there had been some doubt about some of my cells and in fact I also had CLL - how so?  The treatment for both NHL and CLL are the same so I would continue my treatment.  CLL was not curable, but life expectancy was at least 10 years - so hey, what's the worry? I'm 47 years old and just been told I'll probably not be celebrating my 60th birthday.  However I was responding well to the treatment and before my 4th treatment felt better than I had done in about 18 months.

It was at this point that I seriously got into the internet and soon came to the realisation, that was confirmed on subsequent visits, that neither my consultant or specialist nurse knew very much about CLL. Neither did they seem to understand median survival, recent treatment developments or prognostic indicators.

After a long meeting in February 2005 (after my 6th treatment), I had an additional CT scan and another lymph node biopsy and finally the bone marrow biopsy (under anaesthetic).  I went armed with an article by Prof Hamblin and other CLL information, the consultant admitted defeat and asked if I wanted to have my care transferred to Addenbrookes in Cambridge.  Oh yes I replied.  At this point I was still being told that I had two diseases, NHL and CLL.  But I was in remission.

On my first visit to Addenbrookes I was told further tests were to be carried out on my archived test slides, a difficult task apparently. The consultant felt it unlikely that I had two diseases.  There was mention of a stem cell transplant, so it was back to the internet to check this out.  Finally after 3 weeks I finally discovered that I had only one disease, CLL. R-CHOP had worked and I was in a 'good remission' - although I couldn't get any more information than that.  No-one will really explain what happened with the incorrect diagnosis and I was so exhausted with the treatment I did not pursue it.

I am currently still in remission and it will soon be 12 months since I finished chemotherapy.

The difficulty seems to be with presenting with CLL if you are under 60 years of age, you don't fall into the usual population of people with CLL and the medical profession are too busy (or lazy) to find out about current developments.  I have a much better relationship with my new consultant who is one of the leading people in the country on NHL, but not CLL.  However he is not bothered about having an intelligent conversation with me.  Certainly when I relapse I will not be putting up with half answers or treatment which is not appropriate for me. Information is power!!

Treatment Profile

September 2004 - 6 rounds of R-CHOP.  Currently in remission.

Name: Not Disclosed

Age: 47

Location: Huntingdon

Medical Overview

Positive Clinical Markers

Negative Clinical Markers

Neutral Clinical Markers

Chromosomes 

I was diagnosed in April 2005 shortly before my 49th birthday.  I had had pneumonia for no very obvious reason and it was proving hard to get rid of, so my GP sent me for a blood test, as a result of which they discovered that my WBC count was far too high.  I was immediately referred to the Haematology Dept at a major London hospital (I live in central London) and within a week had had a Bone Marrow Biopsy and been diagnosed with CLL.  Impressively quick and efficient after all the bad press the poor NHS gets.

Lymphocyte count was 120, so immediate treatment was recommended and I had a course of Chlorambucil over the next 6 months from May to October 2005.  The CLL had the stuffing knocked out of it and, better still, I didn't.  I felt no side-effects at all and was able to live and work as if nothing was wrong.  By August 2005 the lymphocyte count was down to 0.4, well below normal, and it stayed that way for the rest of the year.  Although my haemoglobin and platelets dipped a bit below the normal range during the treatment, the levels were still acceptable and I felt fine throughout.  Having completed the treatment, it was decided to wait and see what the CLL would do next. 

Meanwhile, diagnosis of CLL had triggered a rethink of life's priorities both for my wife and for me.  We decided that there was no time like the present for seeing all those places we had always wanted to but had never had time for.  My wife's company was taken over by a corporate rival in Feb 2006, so she took the opportunity to take the redundancy offered, and I negotiated a year's sabbatical with my employer.  We then spent a year travelling, much to the envy of our friends and families.  Positive outcome no.1: CLL forced us to seize the moment.  Another positive: I started drawing my pension as soon as I could, namely from my 50th birthday, because the odds are that I will be better off financially this way.  Not many people get the opportunity to make that calculation. 

Throughout our year of travelling in 2007 I continued to have regular blood tests and watched as the lymphocytes gradually began to proliferate again.  Not enough to require treatment or interrupt our Gap Year, however, and I managed to stay healthy.  Having returned from our final trip (a wonderful 3.5 months in Oz and NZ) in March 2007, I find (not unexpectedly) that the lymphocytes are back up to 100 and treatment is necessary again, not least because I keep having to take antibiotics to fight off minor infections that my immune system would normally eat for breakfast.  The question is: what treatment? 

Having done a fair bit of background reading over the last 2 weeks and had two meetings with my consultant, the best course of action has yet to be agreed.  My consultant is a haematologist, but not a CLL specialist, and it has become clear to me that I need to see one because my diagnostics are confusing (some indicating an aggressive disease, others an indolent one) and there is so much recent and current research that only a CLL specialist can keep fully up to date with it.  There is no CLL specialist at my hospital.  My consultant recommended a shortlist of 3 CLL specialists in London from the list on the CLLSA website, gave me a thumbnail sketch of each of them and left it to me to decide which one I would like to see.  I made my choice and my consultant is referring me to that CLL specialist for a second opinion on the best immediate treatment.  I will also be seeking a second opinion on my long-term prognosis and investigating whether it would be better for me to switch consultants (and hospitals) now, in order to ensure that I am in the best possible place for whatever future treatment I need.

Treatment Profile:

May - October 2005: 7 x fortnightly courses of Chlorambucil @ 10mg per day, each course followed by a fortnight of no medication.  The first course of Chlorambucil was supplemented with a fortnight of Prednisolone @ 10mg per day.  I also took 300 mg of Allopurinol per day for the first 12 weeks of treatment to minimise side effects of the Chlorambucil. I take 400mg of Acyclovir every day to suppress a long-standing herpes virus.

Patrick Burrows 

March 2007

Medical overview:

1. Positive clinical markers:

a. small lymph nodes

b. ZAP 70 = 2%

c. CD 38 = 18%

d. 13q deletion only

2. Negative clinical markers:

a. IgVh unmutated

b. B2M = 5.3 mg/L

c. lymphocytes doubling every 6 weeks

d. short remission induced by Chlorambucil: more treatment required 18 months after end of last treatment

During 2005 I could feel my fitness was declining, particularly when I was cycling.  After Christmas I found trouble catching my breath while sitting down and I was having trouble staying awake at work.  I decided enough was enough and I had to see a doctor.  My GP sent me for a chest X-ray and as a result was diagnosed with fluid on the lung and I was referred to a respiratory specialist at Southmead hospital, Bristol. 

I was found to have lost 37% of my lung capacity and had a resting pulse rate of 95 (it used to be below 60).  The consultant examined me and found my lymph glands were enlarged.  I did not realise the significance of this at the time but I was admitted the following day and a blood sample sent to haematology. The day after I was admitted a haematologist told me I had CLL.  My WBC count was over 270.  A week later and after 5 litres of fluid were removed from my lung cavities I started a course of chemotherapy of the CHOP mix. 

Over the next six months I had a total of 8 doses of chemotherapy with minimal side effects, the only significant one being hair loss.  I was told I might need 1 or 2 blood transfusions but this did not prove necessary.  At the end of the treatment a successful stem cell harvest was taken.  I was told by a consultant that I had an aggressive form of CLL and some bad prognostic indicators including an 11q- chromosome disorder.  I was offered the possibility of a bone marrow transplant but decided not to go for this due to the mortality rate of 10% which I felt was too high. 

Eight months after I finished chemo and my blood counts are stable and my checkups are only every 4 months.  I am back to full time work and a normal life.  My only medication is green tea tablets and multi-vitamin supplements. 

April 2007

Patient Details

Name: Martin Dean

Age: 53

Location:   Bristol

Patient Details

Name: Roland Mockford

Age: 63 (2007)