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 

  • 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

  • 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

  • Hi Kylie,

    So sorry about your diagnosis and that chemo is causing problems, I would definitely speak to you team about this, either your chemo nurses or your oncologist.

    My nurses always said if I had any problems to let them know and they would do their best to help alleviate any side effects, they have meds for most side effects or can change the meds if they're not working, or a chemo reduction (worst case scenario)

    Don't suffer in silence,  your team are there to help you.

    Very best of luck xx

  • Kylie,

    it is rough I know, poor you. Plenty of water to flush the drugs through and I was always on the phone to the chemo nurses even in the middle of the night, don't hesitate to call them. I found them so supportive and they will give you any medicine that will help your side effects. Your oncologist will monitor your drugs, mine stopped the chemo after 3 cycles as I felt so unwell. But it doesn't last for ever and every dose is ridding your body of cancer cells.

    Wishing you all the best

    Silver 

  • 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. 

  • [@YorkieGirl76]‍  thanks 

     

    My nurses have been great, suppose sometimes I feel like I'm bothering them which isnt helping me and I'm sure they probably don't feel that way. Such a hard experience especially since most of us never had another one like it to relate too. 

     

    I'm going to speak to them and tell them how I feel. Hopefully they can help x 

  • 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