Earlier this year, when I had my regular CT scan, it was spotted that the tumour in my liver had grown a 1cm. It may not sound much but you have to think for a pin head to be shown on a screen, you need thousands of cells to form together so for a cm to be shown, means one hell of a load of cells that have come together to be form the tumour.
Since I was diagnosed I have been on oral chemo like this one is, invasive chemo and hormone related drugs to help keep my keep my tumours in order. In the beginning things went really well but now I am trying new combination of drugs but what they don’t warn you about is the side effects and how lousy they can make you feel.
Initially I was put on 5mg of Everolimus before my Oncologist upped the dosage to 10mg and within a week of taking the higher drug, I had a rash, which I still have all over my chest, shoulders and neck. It scared the hell out of me and my husband, so much so we ended up in A&E to have it checked out for on ringing our surgery we got the NHS number to call and thought better of it.
A&E were stuck to decide what the rash was from and what had caused it. So they took bloods, and ECG and xray of my chest. They were also concerned that I showed signs of tachycardia but I have always been like that and no one has taken it up seriously. Anyway they then thought I was neutropenic but then on a second blood test realised I was a few pointers off being neutropenic so when the antibiotics and fluids were done, I was then discharged with further antibiotics to take.
What was also not mentioned was that I would get a sore mouth, I ended up with at least 5 ulcers in my mouth, pure hell, breathless which scared me to death, tiredness, loss of appetite, being emotional, headaches and just feeling like hell. This is not what I expected. I still have the rash which I thought was going but now seems to be coming back and the other effects which are seriously giving me grief.
To cap it all on speaking to my Oncologist he said the rash was a good because it showed the drug was working. I tell you it is liking having a bad case of acne and at 53 I thought I was past all that!!
If you are put on a new drug, please check the side effects and how probable it is for you to get them. For me, I have managed to have the least common and the common side effects which has taken it out of me. This is the first time I feel as thought I have failed in fighting back, but I wont give up oh No, not this girl. I will fight to the bitter end.
Since I initially wrote this article, I have had some very unpleasant side effects, nausea, being unable to eat due to sores in the mouth, breathlessness, and dry skin on my feet which has caused an infection now in my big toe so I am having to take antibiotics to try and sort out that infection. I took myself off the drug as I could not go on with how I was feeling, it was just too much and a few days before I had had a complete melt down. So much so, I phoned the breast care nurses for health, my Sue Ryder nurse to seek help and advice.
Their view was I was right to come off the drug if I was suffering so much from the it and to get my breathlessness checked out by my local GP and get another x-ray taken of my chest to ensue I had not picked up an infection here which could be causing the breathlessness. So I have had an x-ray done and have a CT scan next week to see if the drug has affected my tumour. Only time will tell. Fingers crossed it has and they can put me on another drug instead. I cant go on like this as I am losing weight and not in the nicest of ways.
This is my story of how the side effects have affected me, they are not the same for everyone, I know that there are people out there who are getting along fine with the drug. But for me, it has not worked and over the next week or so, I hope things will be sorted out once and for all. For those of you who are not experiencing any side effects, I wish you a long and happy time on the drug.