Hi all
ive recently started my first round of EC chemo last week ( needed for 3 cycles) and then due to go into taxel for 9 weeks - I’m not sure if it’s me just not being strong enough but I’m finding this super hard with the nausea, lightheadedness not being able to function as normal - I really don’t think I can cope with another round if EC if my first dose has literally made me cry everyday with how bad I feel - I have requested to speak to my oncologist as I feel like I would rather not be here that go through this
Hi Luna
I had chemo for my own cancer- endometrial May-August 2022.
I am sorry to hear that you have been struggling with side effects from your first cycle and I think talking to your consultant is a really good plan.
For me the first cycle of chemo was the worst. I had similar effects to you and felt really unwell. However when I had my review before the second cycle I had a telephone appointment with my consultant and we went through my chem diary and talked through all the different side effects. I was told that side effects tend to follow the same pattern with a lot of people so this time she prescribed different medications that really helped. So we pre empted what could happen- so for eg; with the nausea- I had 2 different types of medication- one to take am and pm but also was advised to take the other 30 mins before eating and before the nausea started. I had much less of the nausea, light headed feelings in the second cycle. She also adjusted the dose of one of the chemo drugs and that also made the side effects much more manageable.
Another thing worth asking about is whether a tapering dose of steroids would help. I was sent home with a high dose of steroids to take for the first 48 hours and when the level dropped to nothing the following day- I felt really unwell. So she put me on a tapering dose where the levels are reduced over a further 2/3 days- that helped.
On my first cycle of chemo I felt pretty rough the whole time but the adjustment of doses and medication meant on the subsequent cycles- although I did have a few days where I felt fluey - by the end of the first week , I felt a lot better. I just rested a lot and tried to go with the flow. By the second week I felt a lot better and the third week I felt able to go out and about.
The hospital should have given you a 24 hour number to call and I always found it helpful and sometimes it was just a bit of reassurance that was needed and if I needed medication or to be checked then it could be arranged.
I remember after the first cycle I felt i couldn't do it again and just tell your consultant how you are feeling and go talk through the side effects. My second cycle was a lot better. Doses and chemo drugs can sometimes be changed and side effects can normally be greatly helped.
Chemo can be hard but with the adjustments, I did feel it was doable in the end, I am glad I did it and looking back although I felt rough for a few months, I am now well from my original diagnosis.
If you feel chatting things through would help, then please do consider calling the Support Line- the details are below.
In the meantime if you need anything else, you know where we are.
Jane
There are different anti nausea medications they can try if the ones you are on are not working. Its sometimes about the combinations and how and when you take them.
I didn't like it when people said about being strong- it made me feel a bit of a fraud- I was scared stiff but had no choice really but to go ahead. Treatment is tough and after surgery as well- I remember it as quite a slog really. Focusing on one treatment/hospital appt at a time helped. My chemo was also adjuvant - and I remembered questioning why I was putting myself through it at the time- but I am now glad as I have done everything that I can to prevent it coming back.
It must be hard to do this all when having 3 younger children. i am sure that you are not in anyway failing them. They might have Mum as a bit different for a few months but in the end they will get you back and things will start to feel more normal again.
Talking to the psychologist is a good plan. There is also some Macmillan counselling available with a partnership with BUPA if you feel it could help. The Support Line could check for you.
I think after one cycle where you have been really poorly it is natural to feel low but hopefully a few adjustments and meds will ensure that the next cycle has more good days than bad days- and those good days will make up for the rough ones. That's what I found.
I don't think any of us are ever really mentally prepared for this journey. I found that once I had my diagnosis, things moved so quickly and it was overwhelming at times. But I did get to the end of the treatment. Try to find something to look forward to when the treatment is done and aim for that perhaps.
Maybe also this cycle may have felt harder with it being the school holidays? When the children are back at school you would hopefully be able to rest and recover during the day more and then you might feel up to doing somethings with them in the evening.
Jane
