My Treatment: part three.

Cytogenetics and chemotherapy round two - FLAG-IDA

Around three weeks after the first bone marrow biopsy was taken on my admission to UHCW, my consultant came to see me with the results. They weren’t good. The bone marrow biopsy tested for a number of things, one of which were my “cytogenetics” which is a chromosomal analysis of the bone marrow. People with haematological disorders such as Leukaemia often have chromosomal abnormalities which can be used both diagnostically and prognostically. Prognostically speaking, mine were about as bad as it gets. I had a “complex karyotype” including a “5d deletion”. Based on the cytogenetics, you can be categorised as either high-, medium- or low-risk of the leukaemia either not being cured or relapsing with the standard protocol of chemotherapy. I was firmly in the high-risk group. 

It took me a while to get my head around what all of that meant. When my consultant first explained it, it felt worse than when I was first told I had cancer. This was definitely my lowest day. When I was first diagnosed there was still some hope that three rounds of DA would zap it and do the trick and I would be back to normality in no time. This meant that the road to recovery was going to be much, much longer. I remember that my consultant seemed quieter than usual and had begun the conversation with a series of questions about how I was feeling which I answered cheerily not knowing what I was about to be told. She reached for a piece of paper among my hospital notes and explained the results. I didn’t understand what it all meant so I asked her to repeat it. I still didn’t understand which frustrated and scared me. Having since spoken to her about that day, she explained that she did not wish to go into too much detail about the results because my mum looked so terrified and because she thought it would be too much to comprehend all at once. I asked for a photocopy of the results and stared at them all night, willing them to make some sense to me as if I was in an exam I hadn’t revised for. All night my mum and I just cried and cried for hours, finally admitting how scared we were that I might die.

It wasn’t until afterwards that I managed to put those results into some sort of perspective and gain some understanding from them. Whether I was high-, medium- and low-risk wasn’t really the risk of whether or not I might die, but the risk that if my doctors were to give me another two or three rounds of DA, whether the cancer would indeed go or return in the future. The fact that I was in the high-risk group meant that my doctors knew that I needed more, and my consultant decided to hit me with the strongest chemo out, two rounds of FLAG-IDA, and recommended an allogeneic stem-cell transplant. And when I got my head my round that, I thought yes! let’s not fanny about, let’s throw everything we have at this thing and get rid of it first time. 

My counts started to recover from my first round of chemo on the 25th October, after around 18 days, and by the 28th October I was discharged home for a week of rest and recuperation before the next round would commence. I had another bone marrow biopsy on the 29th October which would show whether the DA chemo had managed to get my disease into remission.

In a wonderful twist of fate, my sister’s wedding fell in that week so I was able to attend and fulfil my duties as Maid of Honour. I would have been devastated if I wasn’t there to see my beautiful and magnanimous big sister marry her equally wonderful now-husband. It was a perfect Autumnal day, bright and crisp and full of heady happiness which was just what the doctor ordered.

My wig's first outing.

Refreshed, and ready for round two (ding ding), I was admitted to the haematology ward on 4th November for the new chemotherapy regime of FLAG-IDA. On arrival, one of my favourite doctors said that after viewing the cells from my second bone marrow biopsy under the microscope, there was no evidence of leukaemia. I can’t remember when we got the full results back, but it turned out that the DA had got my disease into complete remission. We were absolutely thrilled and it gave me a real boost to get through the next week of the new treatment. 

The acronym “FLAG-IDA” stands for Fludarabine, Ara-C (Cytarabine), G-CSF and Idarubicin. I was also given steroid eyedrops as many people experience very painful, sore eyes (although I never did). Fludarabine was given as an IV infusion over around 30 minutes, once a day on days 2-6. Cytarabine was also given as an IV infusion over 4 hours, timed to be given exactly 4 hours after the start of the Fludarabine, also once a day on days 2-6. G-CSF is the acronym for granulocyte-colony stimulating factor, which is given as a small injection just under the skin to stimulate the bone marrow to produce more granulocytes (a type of white blood cell) and stem cells and release them into the bloodstream. It is given on days 1-7. Many people with AML and other types of leukaemia, myself included, can also be given G-CSF to encourage the production of white blood cells after chemotherapy to speed up their recovery from neutropenia and reduce the risk of infection. I am not entirely sure about the rationale behind using G-CSF in the FLAG-IDA regime, but I think it is something to do with encouraging and residual cancer cells to “activate” and therefore be more susceptible and likely to be attacked by the chemotherapy drugs. But don’t hold me to that, I might be way off. Finally Idarubicin was given by a fast IV infusion over 5-10 minutes, once a day, on days 4-6. Idarubicin is from the same family as Daunorubicin and is also red in colour.

Despite my enthusiasm to get rid of the Leukaemia with this stronger stuff, the FLAG-IDA scared me. It was a cocktail of drugs so potent that this was perhaps as life-threatening as the Leukaemia itself. It came with the chance of much more severe, more permanent, more long-term side effects. Firstly, the GCSF injections caused quite serious bone pain in my legs and hips, which considering I was still suffering with the “bum issues” (see “My Treatment: part two.”) made lying in any position extremely uncomfortable. Secondly, the Fludarabine causes long-term severe deficiencies of the immune system which put me at risk of something called Transfusion-associated Graft versus Host Disease. It is rare but it means that if there are any foreign lymphocytes in a transfusion (i.e. of red blood cells or platelets) they could see the host (me) as foreign and can cause a severe rejection reaction. It is almost always fatal, with death occurring within one month. It means that all future blood products that I may need must be irradiated. (Reminder to self: get a medical ID!). 

Round two (ding ding)

I was told that after this cycle, all being well, I would be able to do my recovery at home. Knowing that I would only be in for 7 days made the week fly, and after the hefty previous admission of 5 weeks it seemed like a doddle. I attended the outpatients clinic a few times a week for blood tests and a review by the doctors, and on a few occasions the doctors whom I was less familiar with were surprised that I had had FLAG-IDA because I appeared to be doing so well. 

On 19th of November, which was also my mum’s birthday, I attended the outpatients clinic as usual. On arrival, Yvonne, the stem cell and bone marrow transplant nurse ushered us into her office. She had an excited look on her face. “It looks like your sister is a match!” Mum burst out crying. She said it was the best birthday present she could have hoped for. My brother, George (thenceforth known as “shitblood”, the wittiest nickname ever coined) definitely wasn’t a match, but things were looking good for my sister Katherine. They had to do a few more tests, so they couldn’t be 100% sure, but it was very very likely.

I spiked a fever and was admitted again with an infection a few days later, but it was fairly mild in comparison to the ones I had developed as an in-patient after my first round of DA. However, while I was being treated for the infection I also developed a cold and in order to protect the patients and staff from my lurgy all my visitors were supplied with face masks, latex gloves and aprons to wear. It was absolutely hilarious and felt like total overkill considering the significance and potency of all the other ailments and diagnoses and drug regimens co-existing on the ward, and yet for the sake of a common cold I was made to feel like an ebola patient. 

While I was an inpatient Yvonne came to see me and confirmed that Katherine was a match. I can’t quite articulate how that felt, to know that my beloved sister was going to save my life. I didn’t know how to deal with being so entirely indebted to someone, and it is something I still really struggle with. I don’t know how to begin to explain or describe what it means, and to say “thank you” seems absurd. Not only am I inconceivably grateful for the life and the future she has handed to me, but it took great courage for her to even have the initial blood tests to see if she was a match. Katherine has always been absolutely terrified of needles and blood. In fact, she couldn’t even have her blood pressure taken because the feeling of the cuff restricting her blood flow and the feeling of her own blood pulsing down the vein as it deflated made her feel physically sick. And yet there was never a flicker of hesitation, never a suggestion that she wouldn’t do whatever it took, whatever was needed from her. I feel that I have so much to say to her still, but I simply cannot find the words.