Reduced dose chemo

hi, sorry you are having a horrid time I presume you have reported how you are feeling? and taking the anti sick tabs every day as soon as you can....I had 4 x EC    wasn't awful, but some side effects, dreaded 4 x DX so asked if I  could go on Paxitaxol instead, weekly as its a weaker dose...you may seen me write about this on other posts, well I have had 6 of 12 and even on PX I have had low magnesium count  bloods, then onco called me saying red blood count was very low, 89, instead of 120 to 140 and said they would reduce the dose of which I have had 2 cycles now, today I have had iron infusion as well. not out of woods yet, yesterday on my weekly onco call was told both my magnesium and potassium levels low. he did hint not every one makes the full 12, I knew this as I had read it on here. i have a ton of tablets to take now, really want to go as far as I can. haven't been confined to bed like you, but def having more sofa naps.they will probably want you to try DX or PX and yes do ask for a reduced EC dose.you may well tolerate taxol better than EC,  it's really tough going isn't it, I  have now been on chemo since Jan and sick of it all, but hanging on in there xxx ps I had lumpectomy and full node clearence  and still numb in places. grade 2 stage 3a mixed lobilar/Ductal.  msg anytime 

Hi Hel39, when I had 1st FEC I ended up in hospital  with Neutropenic  Sepsis.  I felt like death. Floored me totally.  My Pncologist said I had all side effects so they reduced my dosage for 2nd n third  chemo. Been ok on reduced hardly any side effects. Start Docetaxel  8th June and seeing  Oncologist  6th so will ask him if it's  reduced. Know how you feel. Ask your Oncologist if your meds can be reduced. Take care hun xxx

I’ve just had my 3rd Docetaxel, Carboplatin, herceptin, Filgrastim injections, steroids before, during and after treatment, plus a myriad of other things! I found the first 2 tough and ended up in A&E with low magnesium, low electrolytes, diarrhoea overflow, kidney issues, to name but a few, after each. I was ready to pack it all in, but after treatments and talking to staff in chemo they planned out how to jump on side effects quickly. We did talk about reducing chemo but I wanted to go ahead. I feel it’s about getting some control back and really talking to chemo staff who will always offer brill advice. I’m sorry it’s so awful..you are definitely NOT ALONE in the crap days that we all have xxx

Hi @Hel39, I have advocated for a change in the way people talk about chemo for a long time on here because I too found it very hard going when people come on here and say they can largely live a normal life, or chemo isn’t as bad as they thought. On my dark days on chemo I wanted to rant at these people and tell them how they were making things worse for me, but of course you can’t, everyone has their own experiences. One thing I did learn now I’ve been on here a long time is that a lot of these people are in a very different situation to me, working from home, private healthcare so some treatment administered at home, no kids etc. some also say I worked throughout, then you see on other threads they had days off to cope, in my book not working throughout. They also post on other threads giving advise on a variety of side effects so they were not unscathed no matter how some posts frame it. Sometimes in their efforts to reassure they unintentionally mislead, also those who say they’ve sailed through are in the definitive minority. I found chemo bloody hard!! I couldn’t have worked throughout, I held it together some days by the skin of my teeth. Don’t compare yourself to others, when I felt awful I didn’t post, not even the energy for that, so bear in mind that the really ill people don’t always post, too ill and don’t want to frighten others. Also bear in mind some posters actually had chemo months or years ago and it is like childbirth, you do forget aspects. I finished chemo in November and I sometimes think back and wonder how I did it and how I kept going, but I did. I’m here, I’m ok. Talk to your team about how you are feeling, big hugs x

Thanks, everyone.  

I haven’t really reported to be honest except for he chemo nurse just before round three (to say I found round 2 really hard). I have seen an oncologist once for 20 mins since I was diagnosed 6 months ago. There is no midway appointment and I just feel like I’m on a conveyor belt. I rang the ‘hotline’ once to say I couldn’t sleep at all and they just said to call the GP. I’m going to ask for better/different sickness meds next time but it’s a new drug so I’m not sure that’ll be an issue anyway. Just feel physically broken but like it doesn’t really matter to them as long as the bloods look ok. I assume they always have as chemo has always gone ahead and no results or doses are ever discussed with me. I asked if I could take less filgrastim as 7 seems more than many people take, but the chemo nurse just said no. 

hopefully docetaxal will be kinder. 
xx

Hi Anna12345. I am sorry you have had a hard time of it. I am one of the people who at least so far is having an easier ride through this; things might change when I switch from EC to Paclitaxel.  I found it very hard to agree to chemo for what is in the grand scheme of things a relatively small change in the risk of recurrence. It would not have helped me if all I had been able to find were the stories of people finding it really, really hard.  I needed reassurance it wasn’t like that for everyone, even though I had no idea what my own experience would be. I am indeed fortunate to be otherwise fit and healthy, to have an easy home life, and to not have to work full time. I would never try to mislead anyone about my lived experience of this, it’s still tough on the worst days. However I had a hip replacement last September, and whilst different, that was a lot harder to work through. Trying to live as normal a life as possible whilst pushing boundaries has been the best way for me to manage it. So I am delighted I can still run, swim, lift weights etc.

Did they say how much reducing the dose effected the efficacy for you?

i am in on 8/6 also so we’re on the same schedule. Hope it goes well for you.  I never have any calls with onc so it’s good you get these. X

Thank you. There is no way I could work through this; I’d lose my job if they tried to make me. I don’t even know how I’d look after my kids if I didn’t have help from family. 

thanks xx

Hel39

No but I  didn't  ask. I was just so I'll and all side effects I was grateful  for feeling  better. I do have an appointment  on 6th June so I  will  ask then. Talk to your Oncologist  and see what they say to you because your treatment  is for your cancer  and body. Hope everything  goes right for you, fingers crossed  we come through  this chemopherapy  all charged up. Xx

I'm one of those people that was able to continue working, but had to take time off after each cycle and I worked from home. I found chemo very tough but I'm self employed so needed to work as much as I could. I had no energy for anything else, and my body was extremely weak so sitting working and using my brain actually felt quite useful. It was in no way a normal life, it was putting my life on hold and existing from one cycle to the next. I am extremely grateful I could work from home and go and lie down when I needed to, and cope with the intense hot flushes, severe chills, constipation, skin rashes, nausea etc. I could not have gone out the house to work. I slept through weekends just to try and regain some energy to be able to work again. Chemo is not fun and I found it very tough and felt that I was half killed by the poison of it. Thank goodness our bodies recover.

I think some people may want to be encouraged that working etc is still possible and seek opinions of people that have managed to get on with some aspects of life. The first thing I asked my BCN when I knew I had to have chemo was whether I could still work. Different people have different priorities. Some people kept going to social functions and seeing friends and family, and I couldn't have done that. I didn't want to see anyone. Everyone's experience is different.

I found EC easier than docetaxel, but I still vomited the first cycle and had to be hospitalised and then got even more anti sickness drugs to take for subsequent cycles, which made the constipation almost unbearable.

For my first docetaxel, I was absolutely knocked over. I had been working from Day 6 on EC, but could not possibly work again until Day 12 on docetaxel. I spoke to the oncologist about it and they said that was too long to be feeling like you can't get out of bed or off the sofa, so they reduced my dosage for my final 2 cycles. I asked whether it would be just as effective and they said the margins are large - they give you the maximum dose to start and see if you cope.

My chemo was before surgery so I had the advantage of knowing that my tumour still shrunk significantly even on the reduced dosage.

You may find you sail through docetaxel, some people do. But it might be worth speaking to your oncologist about a reduced dosage. It really helped me to cope better with my remaining cycles.