So yesterday I met my new oncologist, who is my 6th doctor and 3rd oncologist in my 3rd hospital (I swear I’m not a difficult patient, they just keep refering me to someone new). Anyway, final plan, after a clear CT, MRI and PET-CT, is 25x radiotherapy and 5x cisplatin chemo with no need for brachytherapy because the radical trachelectomy removed the tumour completely. I’m feeling pretty pleased to have a plan in place…got my planning CT tomorrow so hopefully will start 2-3 weeks after that!
I have read up a fair bit about side effects so I felt pretty prepared but the doctor said that hearing loss is a big concern, particularly since I already have reduced hearing due to recurrent, life long ear infections. He said that most women aren’t able to tolerate the full 5 weeks of chemo because of hearing changes requiring them to stop. The thing is I hadn’t really heard of that being a side effect before. Did anyone experience this? Did it affect your ability to complete planned treatment.
I know that each person reacts differently and there is no way of predicting what side effects each person will get, but given my already very dodgy ears I’m worried.
Also, he said it’s really important that I don’t put on or lose any weight. Well the thing is I have pretty much been stuffing my face since this all started (I’m a stress eater) and have put on 10lbs, so I’m not sure how I’m going to be able to maintain that weight when the diarrhoea and possible nausea starts…any tips for staying voluptuous during treatment!?
my hearing was slightly affected with chemo,but nothing mega. It was just kind of like things were muffled for a bit. Totally fine now tho.
i was told not to worry about my weight either,in fact the rads team said the more meat the better haha. I put on 2 stone and having trouble shifting it now.
Listen to what your team tell you about using creams they give you,it does help. You will be fine x
the name of the chemo drug that you will be given is called cisplatin. You can look up some info about the drug and that will give you a better idea of what it does.
I believe it's only 30% of people who experience side effects that cause really bad nausea but you get antisickness tablets to take so most of the time you don't get this. I also know that it's less then 10% who experience any hearing side effects. I was told to just inform them if you start to experience ringing in the ears.
As for weight gain or loss. I was told to try to maintain or gain not loose and the steroids you take actually made me gain weight even with the diarrhea. I tried to eat as healthy as I could but once the diarrhea kicked in the only thing that stayed in me was bread and anything made with white flour. My worst side effect from chemo was my taste buds. I lost all flavour. Nothing tastes good by the 5th cycle.
Chemoday will consist of 1 hrs of hydration, cisplatin for an hour, and then some potassium and two more hours of hydration. Total of 4.15 hrs with an IV in your arm. Try to switch arms every week. Chemo day is long because you have radiation after chemo and I found I was at the clinic for about 6-7 hours that day.
Take a book, movies, charger for tablet or phone, lots of yummy snacks, a warm loose fitting sweater or shawl as most of us got quite cold. The day is long but I found it quite nice to sit around all day as usually I go go go.
Your blood work will be done every week just before you start chemo to make sure your counts are ok and you will be able to discuss anything at anytime. The main thing about treatment that I cannot stress enough is to tell your team any issues you are having even the small things you think are not a big deal as they can help you. You shouldn't have to feel crappy or have any pain. There's pills to help you through this and if one pill doesn't work they will give you something else.
You will get three little dots placed on you hips and pelvic area for the radio so they can line you up before you receive it. The first radio is the longest as it the first line up but the further into treatment you get the faster it is. Make sure you have a completely full bladder before recieving your radio everyday as to protect your bladder. Think of radio like an ultrasound Except nothing touches you. Where stretchy pants so you can easily just pull them down. The technicians are very nice and usually will hold a small blanket over you while you pull you pants down a bit so you will not be exposed just lying on the table.
Its going to be ok. You will get through this. Good luck.
To the best of my knowledge hearing loss as a side effect of cisplatin is not all that common but I imagine that if you have a history of ear problems that will definitely be something to watch out closely for. Really don't worry yourself about too much of the rest of it, we all find our own ways to get through the treatment, some lose weight, some gain weight, some stay the same, we all end up pretty much as our old selves a little while after treatment has been completed. Since nobody feels like having a ball during treatment, it's not the end of the world if your favourite ball-gown doesn't fit perfectly for a while.
