Chemotherapy side effects

Oh poor you, it IS scary isn't it? 

I'm on EC-T chemo every 3 weeks. The EC was pretty bad, with sickness and nausea lasting for several days, and feeling generally rough for the next week. Hair loss happened at about 2.5 weeks, even with scalp cooling.

I had my first T cycle and it was much better. No sickness or nausea at all. I had diarrhoea for a few days, and felt achy and flu-like for the same 10-ish days, with lots of random small symptoms (raised temperature, running eyes, sore throat and mouth, bleeding nose, and puffy ankles from the steroids) but much more manageable than the sickness.

So, for me I had maybe 3 days each cycle of feeling pretty rough, then another week of feeling off-colour but not completely incapacitated, then the final week of being able to get up to date with the house-cleaning and batch cooking/freezing.

The best thing was realising that the EC is behind me, at 2.5 months I'm more than half-way through, and it's not going to get worse than the EC!

When do you start? You can do this. x

Everyone is different! You may sail through. I found it tough, but I also worked (from home) throughout other than a few days off after each cycle. I found EC easier than docetaxel, but quite different side effects. I found I had nausea for the first week after EC, but manageable (I was still working) and then I suddenly felt better on about day 8. I had a rough week, an OK week and a good week on EC. I was running (short distance and slow) from about day 10 and walked most days before then. My first cycle, I couldn't stop vomiting and had to be hospitalised but I think I tried to carry on as normal (big mistake!) so a few hour in and I was ill. After that, they gave me stronger anti-sickness meds but I still felt nauseous.

Hair started falling out about day 20 but I wasn't really that bothered as I'd shaved my head ahead of chemo. Worst thing was the vomiting that first cycle and then after that my digestive system was pretty out of whack for the first 4 days, so I had bad constipation. They gave me stuff to manage that though.

After the first cycle, I just allowed myself to lie around for the first 4 days and by day 5 I was felling better and by day 6, well enough to work.

Docetaxel was different. Side effects came on about day 3 for me and hit me like a train! No nausea, but terrible aches and pains and chills. Side effects kept coming as well so about day 10, I started getting skin sores on hands and feet. That first cycle was really tough and floored me for about 10 days ( i couldn't work) so they reduced my dosage for next 2 and that was much more manageable.

Muscles also felt like jelly nd that lingered for a while after I'd finished (maybe 4 or 5 weeks)

Chemo is cumulative so you do get less able to bounce back as the cycles go on.

Although I found it tough at times, I had more good days than bad, was generally very upbeat and I knew the side effects would pass. I kept a diary of symptoms which really helped me for subsequent cycles.

You just get on with and get through it. It is doing you good in the long run and side effects will pass. Your body is stronger than the cancer and will recover. Suddenly you're through it and getting well again.

It is not pleasant, but it is very manageable.

It's terrifying! Thanks for your response

I don't know when or if it will start. I am doing research before my meeting with oncology in about a weeks time. I was told originally I would only need radiotherapy so I have to see why the surgeon is now saying I need chemo.

Hi Sufu, I feel your terror…I’m waiting to speak to oncologist about poss chemo and all I can focus on is every bad side effect….my rational mind says everyone is effected differently and some have few if any bad side effect, but then my negative mind takes over!

Sending good wishes x

Hi, I honestly didn't fnd it too bad and I worked all the way through.  But we are all different.  Here's my honest view in my blog post

https://community.macmillan.org.uk/cancer-blogs/b/one-life-live-it/posts/chemo-side-effects---hints-tips

Hi MrsPolly, I can't believe how scared I am. I'm usually able to cope with things and see the positive in most situations. I'm still trying to find any positives. I had a mastectomy a few weeks ago and I've come to terms with that only to discover that both chemo and radiotherapy can make the scar worse. At the moment it is just a patchy line with already invisible areas. OK, it's not a look I was going for but it could have been worse and then, as I say, I discover it won't stay like this.

Hi Sufi. I feel for you, but I promise, although unpredictable and frightening,  it is manageable.

So my experience: I’m  3 weeks post my last chemo. I had  4 cycles of EC every 3 weeks and then 4 cycles of  docetaxel (with mAbs as HEr-2 receptor positive). What they don’t warn you about is the steroids that you have during the chemo and a day before and after. 

I was fortunate enough to take time off work, so I could focus totally on getting through it all and listen to my body.

With EC, like others, I had nausea and really bad fatigue plus constipation in the first week, with indigestion from the steroids. The tiredness was worse after the steroids wore off by day 5-6 and lasted upto 10 days after chemo. This got longer after each cycle. During that time I lay in bed a lot and literally needed to be promoted to eat and drink or have food put in front of me. My nausea was managed by domperidone and eating regularly also helped keep it under control. I tried to go out for walks and do yoga etc.. not as regular as I should, but that’s life. I wasn’t the most disciplined when it came to exercise before chemo…

I generally had a week or so from day 12 where every day I felt less knackered, less demotivated and more energised before the next cycle began again. 

My hair loss started on day 17 after the first chemo, and I’d been using the cold cap. Large clumps came out and I managed to get a large matted knot overnight ( I had shoulder length hair) so had to cut it. When my hair was starting to shed my scalp felt sore, but that didn’t happen after the initial large loss of hair. I stopped the cold cap after the second chemo.  In hindsight I should have cut my hair short or shaved it (as I have done now) as soon as I started chemo. My hairdresser did the shave for free - with a glass of Prosecco!

My nails went blue - but luckily didn’t fall out.  I also had a superficial venous clot in my arm- due to the chemo and cancer so had to go on blood thinners for 6 weeks: subcutaneous injections first, then tablets later. Because of the clot they put a PICC line in to deliver chemo- which while a bit of a pain to keep dry in the shower ( I use a Limbo plastic and neoprene arm cover which was prescribed) - is actually totally fine. It’s like wearing a watch- once it’s in you don’t notice it.  I just have the dressing changed every 2 weeks. And all my bloods are taken from the picc line. 

With the second regime of docetaxel, I had much less nausea, but more severe fatigue, hot flushes and night sweats (which could be the chemo or the steroids or induced menopause), and diarrhoea in the first 10 days- starting at day 4. Had to watch my diet to control that.  Much preferred managing diarrhoea to constipation though! I got conjunctivitis (triggered by hayfever) and had antibiotic ointment, but my main issue was the cumulative effect of chemo on fatigue and lethargy, which I am still feeling now, although it is easing gradually. 

I agree that keeping a diary and checking in with your oncology nurse on symptoms helps you manage it and prepare yourself as well as plan outings. I was certainly not confined to the house or my bed and managed to do trips  (and socialise outdoors at covid secure venues once double vaccinated). But it all depended on where I was in my chemo cycle and how I felt. You are the best judge of what you can do, as we are all wonderfully different.

The main thing for me is that I completed  my chemo and it has done as intended: shrunk my tumour and stopped it spreading. I now have surgery next week then radiotherapy. 

Hope this helps. I’m wishing you all the best- you got this! Big hug! Xx  

Hi Sufu

I have had 6 sessions every 3 weeks started on 1st Dec. 3 sessions of two drugs mixed and 3 of a different drug.

The first 3 didn't make me feel sick as I was pumped full of anti sickness drugs. The steroids also helped. I didn't go downhill until after I stopped them. I lost all my hair but it has grown back. I now have a silver pixie cut intead of long blond locks. My hairdresser is going to cut it in a Judi Dench style.

The second drug was worse for me. My white blood cell count kept crashing and I had 3 stays in hospital. I had problems with my hands and feet. Hands are ok now but my feet are taking longer to get better. My nails were affected but I didn't lose them. 

Would I go through it all again. Yes because it has worked and stopped it spreading. I have since had an op and radiotherapy and have to start zoldronic acid treatment in a few months. Every 6 months for the next 3 years. This is to help stop it coming back in the bones. 

The staff that looked after me were very supportive all the time. 

During all these months of treatment my dad who lives with me, 93 years young, has been diagnosed with stomach cancer. My husband has been brilliant loking after both of us for about 5 months. I am now able to look after Dad myself again. At one time he was having radiotherapy in Oxford while I was having mine in Reading. You can get through things if you have to. Good luck. I hopecyou decide to go with it. 

Linda x

Very helpful - thank you. 

I have had 2 cycles of EC. I was very nauseous and fatigued on both but it lasted longer on the second cycle. Because of the steroids I found I could work for the first 2 days post chemo but from day 3 for about a week could not have worked.  So overall I have taken a week off and worked for 2. I have no idea how it will be when I move from this to weekly treatment.  

I also found that pretreatment I was incredibly anxious but once treatment started the anxiety was no longer an issue instead you just focus on the physical issues.  It also all seems manageable in the week when you feel okay!