Struggling with T

Hi Floss,

I had FEC-T chemo last year and I still remember how achey and tired I felt, but it does pass. You’ve already done 5 sessions, only 3 more to go! Could your GP have some medicine sent to you to ease the constipation? I used to take a couple of dulco-ease and that was enough, but I had the stronger stuff from the hospital on standby. You don’t need this on top of everything else. Also, did the hospital give you any numbing mouthwash to help you to eat? I remember seeing my GP after the first taxol and I had a list of things I wanted to get through the other two sessions. He was really caring and prescribed painkillers and mild sleeping tablets (didn’t get on with the steroids). I didn’t use many of either, but it was a relief to have something that helped. 

 I had chemo after surgery, so I don’t know what your surgeon would do. 
Best wishes,

Sarah 

Hey, sorry to hear how you are feeling. I really struggled after my first T too...I spoke to my nurses and they sorted me some stronger pain killers - they made all the difference so I was pleased that I plucked up the courage to ask. I was given a mouth wash but didn’t use it....as for going to the loo...I bought some golden linseed and added a heaped spoonful to some yogurt. 

You are nearly there....the last two soon come...it isn’t easy and many, many people struggle with the last few....our bodies have taken a battering and my neutrophils did get rather low.. I would suggest you speak to your nurse and then, of course, your oncologist.  They might be happy to lower the last doses - again many do that too! 

Hope you are feeling perkier soon....I seem to remember eating lots of jelly pots and frozen pineapples and mango to soothe and get me sugar!

Thank you Sarah and GG.

I have spoken with a Maggie's centre lady and my GP. GP (wasn't very helpful) told me to continue with the drugs for constipation. Came away feeling very fobbed off. Not his fault I suppose.

Maggie's centre lady told me to ahve the chemo conversation with my oncologist which I did on Monday after a temperature spike and low blood pressure meant I stayed in over night. He said it wasn't an option. I just feel my body has had enough and my mind certainly has and I want it to stop. The thought of 14 more weeks .......

Sorry thanks. xx

@floss b

Sorry you feel so unwell with the Taxotere. I think the things you are describing can happen quite commonly but you need to discuss them with your nurse or oncologist.  Don't have another dose of chemo without discussing how you feel. I made that mistake and the end result was an immediate cancellation of the treatment  because the nerve damage was permanent. The doctor said had I mentioned my burning feet before.... they could have reduced the amount of the dose but I thought the effects were the same for everyone. I'm not saying you have a problem that won't feel better next week.....just chat to someone about it soon. It is the pain you are in that sounds to me something that might need mentioning. For your mouth ask for a stronger mouthwash. I was rinsing my mouth about six times a day during the T weeks but the wash needs to be alcohol free so overthe supermarket shelf is not usually ok.

And if your treatment is stopped.....well, I am here nearly five years later to chat with you but I did have my surgery first so I can't advise on that.  I just carried on with the radiotherapy which in my time was 33 sessions.

I hope you are already feeling better this afternoon. Sometimes I think just sharing how you feel helps.......But still share it with those with more medical knowledge. 

Love Karen

I was worried about the T chemo too, and asked my oncologist if I could have it weekly. Could you ask for that? It is meant to be for 12 weeks, though lots of women stop at about 9 weeks, and your first one equals 2-3 weeks already. She agreed to that for me although it's usually HER2+ or TN women who have it, and I felt happier going forward with smaller doses I could monitor more easily. I stopped at 7 in the end due to PN, but was much happier with the weekly doses.

I agree about the mouthwash, which made a huge difference to lots of people including me. I forgot one day and developed an ulcer! Nothing will help with the terrible taste or tiredness, but it does pass

hi      I’ve just read your story, and was wondering if you were at hospital a couple of weeks ago, I was speaking to someone who’s story was similar to yours xxx  

Thank you Londonmumof2

Sorry not to have replied. I'm still falling asleep and the taste in my mouth is just yuck. Really struggling with it all, but I will talk to the oncologist next Friday.

Thank you x

Hi floss b

After 4 EC I was due to have 4 paclitaxel (equivalent of your T).  I was generally fine on the EC but the first paclitaxel really impacted my feet and less so hands with peripheral neuropathy (PN). 

As I knew there was a risk of the PN becoming permanent and my priority is quality of life over longevity I challenged my oncologist.  Initially she was keel to just reduce the dose and change (from planned 3 weekly) to weaker weekly doses, I asked however what would happen if the weaker dose (that could still exacerbate the PN) made the situation worse and she told me that, as my lumps had responded well to the EC (shrunk and less dense) that I would return to that - so I requested that we skip the option B and go straight for option C.  I ended up having the original 4xEC, 1x paclitaxel then 2xEC.

The change caused no changes to my subsequent treatments - surgery or rads.

Challenge away and be prepared to have a bit of a fight (annoying but necessary).

Good luck

Sam