Rough

FormerMember
FormerMember
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Hi everyone, i hope you are all doing well ,i havnt been on for a few days, as ive been feeling rough since having 2nd bottle removed  last Thursday, it has knocked the stuffing out of me this time, i have cracked skin on fingers, loose stools, bad face rash, sickness, sore mouth, ive got cream & mouthwash ,which i use often, i would like to ask you lovely ppl here, if you have been through this, did you get your treatment dosage lowered, im in another fb group, and ask questions there also, a lot of those lovely ppl say ,mention it to my Dr ,who i see this Thursday, i know i couldnt go through cycle 3 feeling like this, im hardly eating as it hurts my mouth, im not doing bad with drinks (juice)as i cant face tea /coffee, and im doing nothing but sleep, odd times i feel lightheaded too, i have a great bf by my side, he says if i dont open up to Dr he will, but im going to tell him everything, ive been writing things down in my cancer book ,so it all there, these last few days have felt so bad and long, also if Dr says no to lowering dosage, does it eventualy calm down as cycles go on, im sorry but i cant take another week like this ,Thanks for reading , and any tips welcome, Take care all Hugs sent your way x.

  • Hi 

    My mum battled through the first year and it was hard going . The second year she communicated more with her team and they found her own tolerable dose . It turned out to be a minor adjustment and made the world of difference to her . Her second was always the worst . No idea why , third and fourth not too bad .

    Your team will also be able to guide you regarding the rash .

    So glad you are going to chat it through with your team .

    Court 

    Helpline Number 0808 808 0000

  • FormerMember
    FormerMember in reply to court

    Hi Court, Ty for your reply, i feel so much for you & your mum ,if she went through this 1st time around, my 1st  dose was managble,but this ,wow weeeee,i havnt felt right as i said since last Thursday evening, woke up this morning with a stoma bag of fluid, been like it since monday, loose stools & sickness, i have been taking the medication given, but doesnt help, so im going to see if they can change that too, just keeping my fingers crossed that the cycle  dosage can be adjusted, as for the rash i have cream given by staff, which i use a lot, but this week, its come out more, i know the Dr said, its a good sign ,as treatment working, but doesnt look good, so in a way ,when i go out ,at least the face masks help cover it up, and another big Ty to you & your mum, for sharing her journey along this awful road, she is a big inspiration to all of us, and i hope you are both doing well, Take care, Hugs to both of you x

  • Hi , sorry to hear you've been feeling rough. I was the same as s Mum and I battled through it, I felt rough but as it was all new it was also uncertainty of what side effects should be expected and how bad.  It wasn't until quite a few cycles in that my bloods were too low to have treatment and my Onc made the decision to lower my dose by 10%.  I can honestly say it made a huge difference, even my husband noticed the difference when he picked me up. I would def mention it to yr team and that's great that you are keeping a note of it all too.  I haven't heard of the side effects calming down as chemo can be cumulative, having said that, it can become more tolerable as your body gets used to it. Xx

  • Sorry that this is hitting you hard, the skin rash is not very nice, my brother has it as well. Whilst it may or may not be a sign that things are doing what they are meant to, it is also psychologically important to people who may already be dealing with altered body image issues, to feel okay when they look in the mirror. There are treatments available as far as I am aware, I would ask about them. Sorry I can’t help with any insight into dose reduction, but I hope that you are feeling better soon. My brother has only had 1 cycle of treatment due to a few problems. He had panitumubab only yesterday and his skin looks pretty bad straight away. He is going to get some cream prescribed from GP. Your treatment provider should have a treatment pathway specifically for this, so they should be able to help. Take care