Hello chemo advice needed

Hi F1 petrolhead  it’s all very confusing isn’t it?! I have been cold capping and have had 4 sessions so far. It does add longer to your treatment time (mine is 90 mins after) but I have personally found it worth it. I’ve kept about 70% of my hair which has allowed me to wear hats and still see my hair so nobody really notices. It can be a little painful for the first 10 mins and I was advised to take a paracetamol before each session to help. One thing to bare in mind, if you decide not to go ahead you can’t change your mind once you start treatment so it’s worth trying and seeing if you can cope with it.

I would recommend taking books, kindle, iPad etc with you as it does get boring! Unless you’re lucky enough your unit allows you to take people in as mine doesn’t! 

as for laundry, I haven’t changed my washing powder or anything and I seem to be ok. I think you just take each day as it comes and if you get a reaction then use something different. 

good luck with whatever you choose! Xx

Thanks for that. I had read you need to do your washing separately and put in a plastic bag until you do it. That's positive news about the cold.cap. can I ask what regimen you are on. I'm on ec then doxataxel. I had heard different regimens can affect things to. It is all so c9nfusing. I will need to check about someone going with me as my husband hopes to come.

Hi F1 petrolhead I’ve not heard of washing in a separate bag before! I was told to use natural products on my skin but not with washing. It doesn’t seem to have done me any harm so far!

I have had 4 lots of EC and about to embark on 4 lots of Taclitaxol. I’ve been told hair loss is worse with EC so the fact I’ve kept some I’m hoping will serve me well for the next lot! 

I have seen some people on here have had people come with them but my unit doesn’t allow anyone. Hopefully yours will allow! 

Hi F1 petrolhead, I to am having EC followed by Docetaxel. Reading stuff online can be so confusing. The best people to ask are your oncologist or breast care nurse. I wash all our stuff together haven’t separated it at all and haven’t changed washing powder. Our wash & toilet habits are still the same have not been told anything has to change. The only thing I do is wear a mask when I’m out shopping or on an outing. 
Scalp cooling cap I have used twice so far. Whilst it helped and I have kept some hair I have started to loose it now and have a bald patch on the top. Not sure if I will manage another session I will have to see. As Shellbell24 says if you can start with it that would be good as you can’t go back to it after treatment starts. Take some leave in conditioner as they apply this to help with the cap. Other things to take iPad, AirPods, phone, book, mags, snacks, etc like Shellbell24 says to keep you occupied although the nurses do sit with you too and you can talk with them. My husband comes with me as we are allowed people in our chemo unit but it’s worth checking as other places maybe different. I was also told I don’t need to isolate from people, just carry on as normal. My friends are brilliant and if they have the sniffles they let me know and we stay apart until they are ok. Obviously it’s a little more difficult when going out to restaurants etc. but I think bits difficult to avoid all bugs. 
Wishing you all the best on your journey.

Hugs from cuffcake x x x x x

Hi cuffcake thats really good to hear re the cold cap and thanks for the tip re conditioner. I was aware you have to try cold cap on first cycle otherwise you can't. Glad it seems to have saved some hair

Hugs to you too

I didn't cold cap for a few reasons but main ones were that my oncologist said I would lose most of my hair anyway with the chemo I was on (I also had EC then docetaxel) plus it meant far more time in hospital and a risk of migraines, which I'm prone to.

I cut my hair off and donated it to charity ahead of chemo starting and shaved off the rest. It was actually incredibly empowering, something I had control over. Everyone absolutely loved the buzz cut, something I never would have experienced without cancer.

As others have said, take some things to read. I took a big scarf/shawl that I could put over me if needed. The chemo is quite cold, and you will feel it even more if you cold cap. I took some tea bags as I drink herbal teas and I took a snack too. I went through treatment late 2020 and early 2021 so I wasn't allowed anyone at any of my appointments or treatment.

Do take all drugs as prescribed. I found EC made me very nauseous and I overdid it after the first round as I thought I was OK, and ended up being one of the unlucky 20% that actually vomited. They gave me stronger anti sickness drugs for subsequent cycles but I still felt nauseous for about a week.

With EC, I found the side effects were worst the first few days and gradually got better. I had a bad week, an OK week and a good week, even going for a short and slow run by about Day 10.

I found docetaxel much worse. I was fine for the first couple of days and then the side effects seemed to keep coming. Feeling hot and cold with body aches was the first thing, though Paracetemol was surprisingly good for that. 

I also had skin and nail issues with docetaxel and as I could barely get off the sofa for 10 days, they reduced my dosage for my final 2 cycles, which was better.

Chemo is cumulative so you do get more and more worn out as the weeks go on. 

In terms of eating, you don't tend to feel like much but I found bland food best with EC and my taste was horrible on docetaxel so I took to drinking a lot of Ribena as water tasted yuk. 

I lost a bit of weight on EC but put on a lot of water weight with docetaxel, which took many many months to go. I had chemo before my surgery and so my final main oncologist appointment was 5 months after chemo. I mentioned the water retention then and they said it was still very early days. I think I've only started to recognise my feet again as they stayed a bit puffy, and I am almost 2 years post chemo. 

In terms of food, think of it like a pregnancy diet - no undercooked meat or eggs, no unpasteurised cheeses etc. And don't take any supplements without running them past your oncologist. It is amazing how many things have an antioxidant effect, which will go against the chemo. The time to get your body back to health is after you have finished chemo. You're going to feel bad, but you will recover and the cancer cells won't. Hold on to that thought! 

My biggest advice is to keep a diary of symptoms. That was incredibly useful to look back and see that you felt the same on the same days for each cycle. 

I suffered quite badly from constipation the first few days due to all the anti sickness meds, so i would recommend having both laxatives and imodium in the house in case you have constipation or diarrhoea. 

Chemo is not much fun, but I found it very doable. I was lucky to be able to work from home and was back to work on Day 6 with EC and Day 7 with docetaxel apart from that first cycle of D when it was day 12! I am self employed so needed to work as no sick pay, but I just wanted to let you know that I was able to work as I have probably painted a bleak picture of chemo!

Best of luck with it. It feels like you're just living these 3 week cycles when you're going through it, but suddenly it's over and you're recovering. It does take a good year to fully recover from chemo. I have been put into a menopause with my BC treatment so unfortunately have never recovered my pre-treatment energy levels, but I definitely felt better and better as the months went on after chemo finished. 

What a good summary of treatment and side effects. I don't know what my treatment will be yet. 1 more week to wait. The cold cap might not work for me I don't like being cold, I'd rather a hat to stay warm. Good advice about antioxidants. I wonder if things like Turmeric tea are ok? Thank you for taking the time to write all this. Xx

You are welcome. I remember only too well how overwhelming it all was and having I sight from people with experience was invaluable to me.

My morning drink is cocoa powder, honey and turmeric but I think I missed out the turmeric during chemo. Worth mentioning everything to your oncologist, it is surprising how many things they say no to! 

Thanks so much this is all very good advice and information. At the moment I hope to be back at work day 6 but I will see how I am. Already have Imodium and oncologist will provide constipation meds. 

Hi Beatthebreast, I too am having EC followed by Docetaxel. It was great to read your info on how things went. At the moment EC hasn’t been too bad to me. I’ve had 2 sessions. By about day 4 I hurt from the waist up. I find my shoulders, spine and neck are really sore to touch. I have been using the scalp cooling cap and found it has helped but I have lost some hair and have a bald patch on top of my scalp. I’m not looking forward to Docetaxel to be honest, it frightens me. Did you have the same anti sickness meds as when on EC or do they change? The side effects seem to last longer by the sounds of it maybe that’s why there’s a 3 week break between treatments I don’t know I was going to ask my oncologist. 
Wishing you all the best and hope you do get your pre chemo energy levels back.

Hugs from cuffcake x x x x x