MY TREATMENT

I thought I would make this page for anyone who is interested in my treatment story. I have gathered up all of my discharge letters which have all the medical terms for my treatment so I am using them to help me write this. 

Sorry to some people if this post sounds a bit gibberish to you. If you have any questions please feel free to leave a comment.

 I was admitted to Derriford Hospital on 23rd May following a new diagnosis of Acute Myeloid Leukaemia with very low counts (HB 6.1, WHITE CELL 72.3, PLATELETS 27) On admission I completed a course of Tazocin for a fever. I had a PICC line insertion and I was entered into AML 17 trial and completed my first course of DA (Danunorubicin and Ara C)

It was then confirmed that I had a positive FLT 3 gene. Having a positive FLT 3 gene meant that I was at an increased risk of cancer returning once in remission. I was eligible for FLT 3 inhibition randomisation, CEP 701 and after having the randomisation my 'switch' was off so I think I had the actual drug and not the placebo. I needed a lot of blood and platelet transfusions. After completing the course of DA I had another course of Tazocin for neutropenic sepsis. I then suffered with cellulitis around my cannula site and was given Flucloxacillin to treat this. I had to have GCSF injections as my counts were really slow to recover. This was because of the FLT 3 inhibitor, another reason why I think I had the CEP 701 drug.  I had a repeat bone marrow biopsy on 25th and results showed no cancer. I was discharged on 30th June for a break home to let my counts recover before the next round of chemotherapy.

 On the 22nd July I had another biopsy because neutrophils were not being produced and 3 days later I got the news that my cancer had relapsed (returned) and was readmitted. I started my second round of chemo, FLA-IDA and although I was still neutropenic I remained well in myself other than needing quite a few blood and platelet transfusions. I suffered with a few fevers but they were treated with antibiotics. My consultant then decided that due to the relapse after the first round of chemotherapy my best available treatment was Stem Cell Transplant. They tested my brother right away and we were told there was only a 1 in 4 chance that he could be a match. Luckily he was a match & my plan of treatment was a allograft stem cell transplant. I was discharged 29th August and had another bone marrow biopsy that showed no sign of cancer again. 

I was readmitted into hospital on 11th September and had the second round of FLA-IDA. I remained well and had a few fevers that was treated with antibiotics. 

Transplant Preparation. 
Before having my transplant I had to have lots of tests to ensure that all my organs were strong enough to receive all the strong treatment. I was told my organs would be damaged from the treatment as it would be so intense.  I also had to have an ECG, MRI, CT and PT scan.

On 4th October I had my pre-transplant talk, this was to discuss the role a bone marrow transplant may have to play in the treatment of leukaemia. This talk was awful as consultants have to tell you EVERYTHING. My consultant haematologist discussed with us (myself, mum and dad) that the fact my leukaemia reoccurred almost straight after my first cycle of chemotherapy meant it was marked as aggressive leukaemia. With having chemotherapy alone my outcome was very poor, with a chance of being alive without leukaemia at two years following chemotherapy of less than 10%. For this reason transplant was my best option of a greater chance to cure my leukaemia. He said that I would be given intense chemotherapy & total body radiotherapy. I had never had radiotherapy so was scared to hear that. 

He went on to tell me the side effects of the transplant, shot term and long term. The short term side effects I suffered with is nausea and vomiting. I also suffered with extreme mucositis, this is where the chemotherapy and radiotherapy damages the gut lining and this results in having a sore mouth and diarrhoea. He also said that I may need tube feeding but luckily I didn't have to. I had a little sign of GVHD, my skin became a bit red and sore but I didn't suffer with it extremely. 

He went on to tell me that longer term there is a risk of a chronic form of GHVD which can be disabling and greatly impaired quality of life. My new immune system will take a long time to bed-in and will be weak for some months possibly years. He said that there are late effects from the total body irradiation to consider including the risk of cataracts and underactive thyroid and secondary cancers.

I was readmitted into hospital to have my transplant on the 22nd November. The day after I had 3 days of intense chemotherapy - cyclophosphamide followed by 4 days of conditioning - total body irradiation. I had my last radiotherapy on the morning of the 29th and in the afternoon I was given my brothers stem cells which he harvested that morning. Within 3 days I suffered extremely with mucositis and this resulted in having to have morphine through my central line to ease the pain. Severe mucositis stops you from eating and drinking because the cells in your mouth die and you suffer with extreme soreness. After a long 32 days my neutrophils finally reached 0.5 and I was allowed home. I had a huge list of drugs to take when I was first discharged and now I only have three pills to take daily. I will have to take the drug penicillin for the rest of my life and hormone tablets for a long while. Since leaving hospital I have regular transplant clinic appointments where I have a routine blood test, virus tests, my observation checks and to generally see how I am doing.

Overall the chance of being alive and without leukaemia at two years is 50%. I have just passed my two years post so am fortunate to be in the category of the 50% :) 

If anyone is having treatment please feel free to ask me anything. 
Thank you for reading.