Hello. My Name is Elizabeth and I was diagnosed with CLL (Chronic Lymphocytic Leukaemia) in 1997 at the age of 50. I am married and worked full time.
Here is my CLL Journey.
In 1995 I had a malignant Melanoma excised. No further treatment was required, except for several years of regular attendance at the Outpatient Department at Hospital.
In 1997 I went to see my GP. I mentioned that I was feeling tired all the time. Consequently I was referred to a consultant.
After more tests the consultant confirmed that I had CLL.
WOW was I shocked. I had not expected that.
He gave me two pieces of advice: 1) Attend the Dentists regularly. 2) Do not ask a Doctor to prescribe Anti-Biotics for minor infections, as I was likely to require Anti-Biotics in the years to come. (I already knew that I was allergic to one Anti-Biotic.)
I told my Husband and informed just a few people – Only those who really needed to know, as there were not going to be any changes in my life in the near future.
I just had to wait until my blood result levels showed that I needed treatment.
In 2004 I reached the level where I required treatment. I was placed on a research project looking into which of the 3 chemotherapy regimes was the most effective at that time. It did mean that I also had to agree to all the procedures that were requested by the support team. E.g. Bone marrow biopsies and extra blood samples.
I was allocated to the oral Fludarabine treatment for 6 months, which I tolerated well. After a few days I was covered with a rash and was seen by a specialist at Birch Ward, Derriford. I was diagnosed with an allergy Co-Trimoxazol. I was then told that I would have to attend the Chest Clinic and start monthly inhalations of Pentamidine – An antibiotic- to reduce the risk of chest Infections.
Following the completion of the Chemotherapy, I remember having several coughs and colds, then Flu and finally Shingles.
After completely recovering from these, I began to feel much better. I was in remission and carried on with my life as normal.
In 2008 my blood levels showed that I again needed treatment. This time I was given oral Fludarabine plus Cyclophosphamide (FC)
The first day of the course I had a terrible headache, but on the following occasions, I had no such problem.
I tolerated the chemotherapy well, with no major side effects.
I did have to attend the Chest clinic again for monthly inhalation of Pentamidine.
I remember having fewer colds during this remission.
In 2013 I was diagnosed with Irritable Bowel Syndrome. The consultant did suggest the Fludarabine.
By 2015 my blood levels again showed that I required further treatment. This time I was given Intravenous Rituxamab and Bendamustine over 1 ½ days for 6 courses.
During the first course I had a reaction to the drug. I had already been warned that this might happen. I was attended to, and recovered very quickly. There were no further problems.
I had to wait 6 weeks in between my treatments, as my blood was taking longer to recover. The last 2 chemotherapy sessions I really did not want to go through, but I did.
I have fine and mobile veins on the back of my hands which did not help.
My white blood cell count remained below 1 (billion per liter) until the middle of 2018, consequently I had to attend the Chest Clinic for more Pentamidine sessions, 33 in all.
I had a bad cold and lingering cough towards the end of 2016 and continued to have an intermittent cough thereafter. A chest X-Ray showed a small area of infection inside one lung. Another X-ray about 2 Months later showed that the infection had gone and I no longer had a cough.
I did find that I was not able to concentrate on anything. I could not read a book all the way through until about 2- months after the chemotherapy. It has taken me longer to get over this last chemotherapy, but now I feel human again.
I have had, almost from the beginning of my journey, a positive outlook. The CLL has not stopped me from doing whatever I wanted to do.
I do now talk openly about my CLL.
One thing that has caused me frustration is when you are told that you will require chemotherapy, but then the months pass by before you actually start it. I just wanted to get the treatment over and done.
I have had other health problems since my diagnosis: Abdominal surgery twice, Dental Abscess twice – with anti-biotic required, and finally endoscopy twice. I also had a few minor infections that did not require treatment.
I have found over the years that the information about the procedures, both oral and written, has improved.
I have always been very happy with the care that I have received.
Elizabeth- January 2019.