Chemotherapy side effects: advice or support

I was diagnosed with stage 4 lymphoma and started chemotherapy treatment 1 month ago. I've had 2 treatments out of 12. Both times I've had really bad side effects and I'm really struggling with it.

I've lost a month of life already to the side effects, not the disease.

I'm trying to stay positive but I have been struggling recently.

 

Has anyone else had very bad side effects that could give me some advice on how they coped with it. I would greatly appreciate and help.

 

Much love 

 

Kylie 

Parents
  • Hello Kylie, so sorry you are going through it with the chemo.  I had 8 rounds of chemo, and although I didn't suffer too much (certainly not compared to some of the other folks I spoke to who were having it), I must admit there was a couple of occasions when I felt dreadful.  For example I had such bad pains in my legs after one session that I had to ring the hospital and they gave me some morphine.  I would suggest that you speak with your MacMillan nurses, and explain to them how terrible it is making you feel.   You could also ask to speak with your oncologist and perhaps she can make changes to your chemo.  I know someone who was put on another type of chemo because she was suffering so much on the one she was on.  Good luck Kylie, xx

Reply
  • Hello Kylie, so sorry you are going through it with the chemo.  I had 8 rounds of chemo, and although I didn't suffer too much (certainly not compared to some of the other folks I spoke to who were having it), I must admit there was a couple of occasions when I felt dreadful.  For example I had such bad pains in my legs after one session that I had to ring the hospital and they gave me some morphine.  I would suggest that you speak with your MacMillan nurses, and explain to them how terrible it is making you feel.   You could also ask to speak with your oncologist and perhaps she can make changes to your chemo.  I know someone who was put on another type of chemo because she was suffering so much on the one she was on.  Good luck Kylie, xx

Children
  • Thank you so much for replying. 

    I seem to lose the whole week after chemo to my bed. Feel like every side effect that I could possibly have, I'm getting.

    Makes me want to stop having treatment even though I know the alternative is worse. 

    I'm going to speak to my consultant tomorrow to see what she suggests. It's so difficult at times. But I know there's others probably going through the same thing x

  • Thanks everyone. 

     

    I've got up today and feel so much better. It's like being on a very unfriendly and unpredictable roller coaster! 

     

    I'm going to make the most of feeling good today whilst I can! 

    Maybe even get some house work done :) 

     

    K

  • I've had 3 rounds. Doctor told me I should add a day on for each round. I was in on a Tuesday (full day), Wednesday and Thursday (for an hour). It took me until Monday to come round from the first lot, Wednesday the second lot but I was OK after the third and final dose. So the doctor wasn't too far wrong. I suffered sickness, nausea and really bad acid reflux (specifically after round 2). Toward the end of my 3 week cycle I was OK again.

    I can't offer advice other than "it doesn't last forever" (although it does feel like it). It's horrible. It's nasty. It hurts. It causes fatigue. But it does wear off. Take each day on its own merit as some days will be better than others. But don't see a good day as a sign it's wearing off. I spent 34 out of 36 hours in bed despite being good the previous 2 days. So there's no pattern and that's the hardest part.

    As I say, it doesn't last forever. 

  • It's definitely a roller coaster isn't it. 

    Yesterday I was extremely unwell, today I feel great in comparison. It's crazy. But tomorrow I could feel unwell again. Think I'll just try to live hour by hour for now and as you said I'll remember it doesn't last forever. 

     

    Thank you for your support! X