Pretty worried about my life with oral chemotherapy.
I am a high school teacher. Avail public transport (bus) to reach my school every day. It takes 30mins to reach. Duty hour is 6hours. I have few questions for you survivors. I am under treatment for 3 months now.
1. Shall I be able do discharge my duty normally?
2. Will the side effects calm down? When?
3. What shall I do to keep myself fit .
It is hard at first with pain, headaches, worries, and fatigue. It gets easier after the first couple of months. You should be feeling really well after a few weeks and after that it is mostly winning the mental battle. The only thing that bothers me now (five and a half years post diagnosis) is when I am in a room and there are dozens of people talking at the same time. It gives me a weird sense like slight vertigo, but I calm myself and that goes away as well. Hope you feel better soon.
Some things to help you.
Although it comes under chemotherapy it isnt really. It’s targeted molecular therapy. What does that mean, well mostly TKI attacks the leukaemia only, it does though have some off target affects (symptoms) but it’s not really a chemo.
If I could go back in time to my previous self I’d say literally, take the pill and don’t worry at all.
I know that sounds bold but that’s how good the medication is. I know many suffer with a lot of symptoms, I have a handful myself. You’ll develop a new you, an appreciation for life and how precious it is. Is the journey easy no not really but it certainly gets more manageable as time goes on and becomes a new normal.
Don’t change a thing in your life except take time
for you at your pace no one else’s. Be selfish in that sense because you need it to heal as I am also.
5 years later “doing well” blood counts spot on al most MMR 4. Slow responder not a “no responder” they’re rare and have their own set of worries and understandably so. So not to discredit CML it is a cancer but for the vast majority a daily annoyance to have to remember to take your pills and beat the daily fatigue.
That’s the bit that sucks the most for me. Small price and all that!
Alex
Hi there
As a high school teacher too, and living with CML for almost 8 years, I thought I'd also try to answer your questions:
1. Yes - you will almost certainly be able to do your duty normally. I spent only three days in hospital when I was first diagnosed and then went back to work almost immediately. I found that my work REALLY helped me to cope with my illness - as a teacher, I felt that I had to put on a brave face for my students and carry on as normal, because many of them also have family and friends with different types of cancer. From the start I decided that I would not let them see that I was worried or concerned that I wouldn't make it, and on many days I even forgot about the CML during my lessons as there was so much else to think about!
One negative was that I did find that I was more tired than usual, and I took longer to mark students' work because I was always tired at night. But I decided to take care of myself and stopped marking the minute I felt that I was too tired - it doesn't advantage the students anyway if their teacher marks their work while tired. I know that many people wouldn't do this, but I was open and honest with everyone the moment I was diagnosed. I told the Head, the students, and all the other teachers that I was sick, and the advantage of this was that I found that people were incredibly understanding when I missed a deadline or took slightly longer to mark a test. I also felt incredibly supported by my students and their parents - for example, one of them organised a surprise for me on World CML Day on 22 September, when the whole school arrived wearing orange ribbons. On a different occasion a parent organised a helicopter to come to the school for cancer awareness. All this made the journey much easier. But of course, other people prefer to tell only a small group of people (or maybe even your closest family) as they prefer to keep it private.
2. I don't think it's possible to predict when the side effects calm down as we are all so different. In my case, I had almost no side effects except fatigue and joint pain (both of which never went away). But seven years down the line in my treatment I suddenly developed such serious side effects that I had to stop my medication. I hope yours aren't too bad and that they improve or disappear completely soon.
3. I found it hard to keep myself fit. The fatigue and joint pain really prevented me from doing any serious physical activity and I have lost a lot of physical fitness. I have tried to do what I can by walking my dogs, but right now that's about all I can manage (even after being off the medication for almost six months). I'm sure others can give you better advice than me on this question!
But, to echo the advice from Alex (who has given me a great deal of excellent advice through the years) - take the tablets and try not to worry! They really are exceptional medications and I hope that you will have a speedy recovery.
Best wishes
Martin
