In October 2004 Carol, aged 26, was diagnosed with stage 2a Hodgkin’s Lymphoma and has since undergone many different treatments, which explains a few different hairstyles throughout this website!
She began with a standard Chemotherapy course known as ABVD which consists of the drugs doxorubicin, bleomycin, vinblastine and dacarbazine. A daunting prospect of 12 treatments spread over 6 months took over her schedule and being so rigorous a regime, knocked her back every other week for this 6 month period.
Unfortunately this primary treatment didn’t completely do the trick and Carol had to then go for harder-hitting high dose Chemotherapy; ESHAP (etoposide, methylprednisolon, cytarabine, cisplatin), followed by BEAM (carmustine, etoposide, cytarabine, melphalan) and a stem cell transplant in September 2005. Carol’s own stem cells were harvested from her blood which were then preserved until she went into isolation at Hope Hospital. Preparing to stay confined in a small, sterile room for anything up to 6 weeks was bizarre, but eight nights proved not too bad as Carol demonstrated – it was in fact a new record.
After this treatment and being wheelchair-bound for a while, Carol slowly gained some energy back, but unfortunately more bad news followed from more scans. This treatment hadn’t quite finished off the tumours in her neck and between her lungs either, so she was then transferred to the specialist cancer hospital, and largest clinical trial centre in the world, The Christie Hospital. An intense 3 week course of Radiotherapy to her chest took place just before Christmas 2005 after seeing some lung specialists in London. Unfortunately this radiotherapy took away a considerable amount of lung capacity from Carol, but when one is faced with a life-threatening illness career has to take a back seat.
After her course of Radiotherapy the tumours, being stubborn like her, still showed live activity so Carol then signed up for a clinical trial (in June 2006) for a new experimental antibody drug (Medarex anti-CD30) that was being tested for people with Hodgkin’s disease. She was the 22nd person in the world to try this drug, the 2nd in the UK, and the first to complete the 3 month course of 12 treatments and respond to it! Unfortunately PET scan results showed that the tumours in her neck and between her lungs were still live, but very small so Carol had a break from treatment while specialists watched closely. A total of 78 people signed up for this trial across the world and it stabilised Hodgkin’s disease in quite a few cases.
She was the 22nd person in the world to try this drug, the 2nd in the UK, and the first to complete the 3 month course of 12 treatments and respond to it!
In 2009 the tumours were getting a bit too big again, so in between her Seal and Sting tours at the end of 2009 Carol signed up to another experimental drug called CHT25 (another antibody drug but this time with radioactive iodine attached to it). This time targeting the protein CD25, which are present on tumours, the antibody goes directly to the CD25 proteins and releases the radioactive iodine at the same time. Carol had to remain in a lead-lined room for 8 days at the Royal Free Hospital with no human contact as she was dangerous to people and was astonished to register 65 on the Geiger Counter on her first day, when a normal non-radioactive person reads roughly 0.03!
Early signs showed that Carol had some response to this drug, but not enough, so she then had four months of Gemcitabine chemotherapy, which also showed some response. Carol then had a course of a trial drug called SGN-35 whilst touring around the world with Seal again! A PET scan after the fourth dose showed that Carol was finally in a metabolic remission. This drug has had a brilliant response and it has now been FDA approved (a huge leap forward in Cancer Research!), and been given the name ‘Adcetris’ (Brentuximab and Vedotin). Two more doses of this proceeded whilst searches began to find Carol a donor for a bone marrow transplant. A 12/12 match was found on The Anthony Nolan Register; a 43 year old man in Germany. Knowing that remission may only last for a limited length of time, Carol was advised to go for the transplant sooner rather than later. (She was rather pleased to find out that she had gained back the lung capacity that she had lost through her radiotherapy, while having tests to see if she would be strong enough for this next transplant!) Being an extremely risky and lengthy procedure Carol was obviously hesitant to go for this bone marrow transplant, but began the intensive chemotherapy in September 2011, received her donor’s cells on 21st September 2011 and has continued to receive clear scan results ever since!
It took over two years post-transplant for Carol’s blood type to change across to her donor’s type, so she had to have blood transfusions every two weeks during this time, with even more chemotherapy treatments, biopsies and tests in between. However, her journey is now complete, along with her DNA also changing over to match that of her donor!
Throughout Carol’s nine years of treatment she has been extremely active with many different cancer charities and has aimed to continue to live as-normal-a-life as possible; “Normality is something that you crave during the scary times when you’re told that your prognosis has hit rock bottom – even my specialists have agreed that staying active and normal was the right thing to do”, says Carol.
Carol is now loving getting back to a life without cancer, and re-learning how to look to the future again.
Due to her inspiring story, Carol has had a school class in London named after her, she has been invited to become a Patron of charity choir Pasque Harmony, and even had pieces of music dedicated to her and her journey. You can read blog entries by Carol throughout her bone marrow transplant here:
Carol finally met her bone marrow donor, Thomas, in person to thank him for helping to save her life. And she is now also in the process of slowing writing a book (thanks to all of the comments on that blog!)