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MAY 2021 CHEMOTHERAPY STARTERS

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

  • @Poacher65 Oh, I'm really glad to hear that it's not too bad, I am surprised at the level of fatigue, I have been absolutely wiped out for those 2 days and energy levels still low. 

The bad or no taste issue is a problem. I had that with Docetaxel but not this time. Try different things that work for you even if it doesn't seem like a proper meal. I found that fresh fruit and salad worked for me, juices and cordials, toast, plain biscuits, savoury crackers and cheese spread. I would have a roast dinner occasionally but without the meat as I totally went off any meat at all.

Be assured that your taste will recover when chemo finishes, it was gradual over a couple of weeks for me.

I think you will start to feel better overall for the last 10 -14 days of the cycle, most do. 👍

 

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Karden not too bad thanks...feel OK just washed out, tired and absolutely no taste so trying to get enthusiastic about food is proving a challenge!

It's only my first cycle so I'm expecting to feel worse next time as feel incredibly lucky that I seem to have done ok. 

I'm glad your feeling OK....im having EC then Docetaxal so we will see which one is worse for me....like you say it seems we are all different in how we feel. 

Started the GCSF injections today that I have to have for 5 days and they are supposed to give you terrible bone pain so am anticipating the worst.....anything better will be a bonus. 

Hope everyone else is feeling OK.

Take care all xxx 

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Poacher65 I hope you're doing ok since your chemo. I had the bad taste for most of my first course of chemo and through trial and error I adapted my diet until I found what tasted best. I went off my favourite breakfast tea and drank more juices and cordials. 

@Love running I'm pleased you were able to enjoy a BBQ and a little gardening and I hope you are coping ok since your first chemo. The shower sleeve is a nuisance isn't it but it does a good job.

@Purpledaze How are you feeling now, I hope the nausea has settled down.

It's day 6 for me and I'm now feeling almost normal. I slept all day for 2 days on Sat/Sun and stayed out of bed for most of yesterday. Today, I have been showered and dressed and hoovering the kitchen. I have eaten quite well today and I think I may be over the worst. If so, then this FEC is definitely easier than the Docetaxel chemo for me, although I know it's different for each one of us.🤞

Best wishes to you all. x

Karden
Member

Re: Chemotherapy may starters

@worriednow I have just seen your post and noticed that no-one has replied yet.

I'm afraid I can't comment on Paclitaxel as I haven't had this but I just wanted to let you know that you will receive amazing support and information by being part of this forum.

You may want to consider contacting one of the nurses - details on this forum. I think you can phone or email. I hope you soon hear from someone who has experienced this treatment. Have you looked on earlier monthly threads as these members will have gone through treatment by now? You can put Paclitaxel in the search field to narrow it down a bit.

Hope this helps. x

worriednow
Member

Chemotherapy may starters

hello I will be starting my chemo pacximetal hope spelling is right weekly next week . Just scared if I can tolerate it . Nerve pain is my big worry. Should I use cold treatment for ties and handed during chemo will it help? Lots of things running on my mind 

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Good morning,

I hope you are all doing fine today. I have taken the few last days to enjoy to the max my last ‘normal’ week-end. I have been eating my favorite food, went for a beautiful walk in the archipelago of Stockholm and met few friends for a BBQ. I´ve also been baking a lot for my girls. I even managed to run one last time, it was a bit challenging with the PICC-line though (nothing compared to taking a shower with the protective sleeve, which was epic). This afternoon, I will try to build the mental strengths for tomorrow while gardening on my balcony.

@Poacher65 , I hope you had a better night and will have better days. I have been given the following advice from my Swedish nurse regarding food (not tested though):

  • Eat smaller portions but often;
  • Eat cold rather than warm;
  • Salty food rather sweet;
  • Avoid metal cutlery, use instead wooden or plastic cutlery to reduce the metal taste;
  • Drink lots of water or water with some lemon juice.

@Karden  how are you today? Sounds that you hurt yourself quite bad. I hope you are not in pain.

I have found myself more distracted since I got to know I had BC… My brain never stops wondering off, not focusing. Two days, I walked to the local grocery store about 10 min away from home. When at the store, I realised that I had my bicycle helmet on instead of a beanie. I also booked an appointment in a store for a consult and went to their competitor the day and time of the appointment. Awkward moments at the time but we had a good laugh with the family afterwards.

Have a fantastic Sunday

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi all,

. @Karden that sounds painful! Take care and hope it recovers soon. I've found myself to be more clumsy and knocking things over etc. I think it's the fatigue. 

I'm learning to do things I like in bitesize - it's hard because I just want to go for a long walk with my dogs, who look at me hopefully every morning! But realise that little and often is better! @Love running your encouragement and enthusiasm is inspiring - thank you! 

I'm getting a port a catch fitted in a week or so. Will be worth it I think altho a bit nervous about the procedure. 

@Shi really good advice about seeking help for nausea / sickness. I was thinking oh it's just chemo but my husband made me call the helpline and they got me some more help. 

It's so good to have this forum and thank you for all your kind words, encouragement and support! 

Hope you all have a good week and x

 

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Thanks @Shi 

Had rubbish nights sleep....no real reason but did start feeling sick and still do this morning....again nothing major.

Decided I'm going to check my temperature a couple of times every day routinely so hopefully nothing creeps up on me!

Horrible taste that's making all food and drink taste is annoying....any tips?

Hope everyone else who had chemo yesterday are OK xxx

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Poacher65 I'm pleased you're feeling ok so far, I had my first of 4  FEC+ Herceptin on Thursday. I have previously had 4 Docetaxel/ perjeta/ cyclophosphamide/ Herceptin with a break for a lumpectomy.

@Love running My PICC line has also gone back in as it had to come out for surgery, it was fine as I knew what to expect. Having to cover it for showering is an inconvenience but worth it as it makes having chemo easier.

Day 3 and I'm feeling ok, just more tired than usual. I didn't help myself by falling down some steps yesterday whilst hanging out the washing. I have 2 swollen ankles, a bruised big toe and shin but at least there's nothing broken.

I wish everyone well and hope you have a good weekend. 😊

 

 

Shi
Community Champion
Community Champion

Re: MAY 2021 CHEMOTHERAPY STARTERS

Well done poacher 👍 keep drinking water, flush things through. Keep eye on temperature and ring rapid response if antisickness meds don’t work, don’t think oh well this is chemo. Well done on having cold cap too 👍 keep focused 💕💕Shi xx

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi All

Well first chemo done.

1 down...5 to go...

Did cold cap which was fine.

Was meant to have FEC  for first 3 cycles but I am missing the liver enzyme needed to have the  'F' drug safely so just having EC. 

No real issues while having drugs....feel a little lightheaded now and a but headachy but thunk that's the cold cap...and also have strange taste in my mouth but nothing major.

Let's see what next few days bring. 

How are others who have had their chemo today?

Tale care all xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi Purpledaze

Welcome to the group.

I hope you manage to have your walk yesterday. In my wildest hopes and dreams, I wish I can have few runs in between cycles. I found a book that I will start reading on Monday when I start my first cycle, that hopefully will give me the strengths. 'Run for life: how one woman ran circles around breast cancer. Jenny Baker'

It is surreal to me too. I can't grasp what is happening. Since the surgeries, I am feeling well and resume with my life activities. And yet I need to go through chemo and its effects to make sure it is gone. 

I have not made up my mind on the wig yet (no consensus in the family on which one to choose), I got few caps and headscarfs. My husband bought me a hand full of colourful beanies in very soft material (in Sweden, summers can be chilly). 

Got my PICC-line yesterday and now trying to get used it.

I wish you all a very good day

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @Purpledaze 

We are in a very similar place! I too had WLE for grade 3 triple negative, with clear sentinel node. I had my surgery 4 weeks ago, March 31st, but not seeing oncologist until next Wednesday, so presumably our chemo will be the same, or similar too. 
I have got a few nice scarves and beanies but have a wig too. Don’t expect I will wear the wig often but will probably wear it every now and again when out and about. 
keep us informed of how you are doing and take care. Xx

Purpledaze
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi everyone,

Hope it's OK to join this group. Started my chemo yesterday and thought May group made more sense with the timing.

Had surgery a month ago WLE with clear sentinel node, but triple negative, grade 3, so consultant recommended chemo. I'm having EC followed by Paclitaxol. Day 1 was rough for me. But feeling better now I've upped the anti-sickness. Hoping to go for a gentle walk later. 

It all feels very surreal! Can't quite believe it's happening. I guess in a way that's a good thing as it means there are still lots of times in the day when cancer isn't the focus of it all!

I'm opting for head coverings /hats etc rather than a wig. But it's great to hear how everyone is getting on and all the tips, ideas and encouragement. So glad I found this forum. Thank you! 

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running ill let you know how the wig fitting goes! X

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Karden @noodledoodle @Poacher65 @Mai7 Thank you so much for welcoming me to this forum. It feels good to have someone to talk to that goes through the same. Thanks also for the advice on reading, the support and sharing your experience. I hope I will be able to bring you support and tips too in time. We will get through this together.

I am in Stockholm, Sweden. The care is great so far, I can't complain. It went really fast from diagnosis on 22 February until first chemo 3 May and with 2 surgeries in between.

@Karden – I hope it went smooth with the PICC line today. I will get mine tomorrow afternoon. Slightly nervous, but hey if I got through lumpectomies, I should be able to handle it (right?). I got a waterproof sleeve from the hospital pharmacy here, let’s see if it holds. Otherwise, thanks for the tip about Amazon. I will check it out.

@Karden  It felt good to read what you wrote about your journey so far, you are positive and it really helps and give me hope.

I went for my first wig testing and fitting this morning. I did not what to expect but was like you positively surprised. First the lady in the store was so knowledgeable (20-year experience helps) and she was so kind to me. I was so nervous and she immediately told me: 'you are not going to buy a wig today, you will try a lot and you will take many pictures and then you go home and check with your kids and husband. Take the week-end to think about it and you call me next week. Don’t rush your choice'. She made it a pleasant and playful moment and I took so many pictures (felt like a model:-)). Like you were saying too, I got surprised about the quality of the hair and the fitting. I had 'toupé' in mind and could see it flying away with the wind (in a Mister Bean kind of moment). But no, they are actually quite nice and comfortable. I showed the pictures tonight to my family and two friends… no agreement. If I listen to them I will need to buy at least 3 of them and to rob a bank to finance them.

@Poacher65 I hope you wig fitting tomorrow will be as pleasant as mine was today.

I have cut my hair short a week ago. Same hair cut than 20 years ago when I met my husband. He loved it then and still loves it now. It made it easier for me to accept the change. My oldest daughter (in her pre-teen) likes the short hair but my youngest (a little princess) not so much. She is more in to very long hair (she wanted a Billy Eillish-like wig, long black and green)

Good night.

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Love running  Welcome to the group, I think you will find lots of support on here.

My first 4 cycles of Chemo finished in Feb but since surgery in March (lymph node removal and lumpectomy) it has been decided that I should have more Chemo starting tomorrow, 4 cycles of FEC, this is why I've joined this group. 

I'm having a PICC inserted tomorrow after enjoying being free of it for the last few weeks. At least I know what to expect and it does make it so much easier to have the chemo drugs. Have you got yourself a waterproof sleeve for bathing/showering? I got mine from Amazon as the hospital ones are flimsy and not very watertight.

I chose to have a wig and it has made all the difference in me having the confidence to go out and face people although I don't wear it all the time at home. It's very much like my own hair in colour and style but a few inches shorter. I found that my hair started falling out in handfuls about 10 days after the 1st cycle. I shaved it off as it was falling everywhere and I know it was the right thing to do for me although I found it upsetting as it had taken me ages to get the style and colour just so.

I'd like to recommend a book that was recommended to me and I found it extremely useful. It's written by 2 doctors who have both had BC themselves.

The Complete Guide to Breast Cancer, How to feel empowered and take control, by Professor Trisha Greenhalgh and Dr Liz O'Riordan.

It's got a section on exercise and Liz is a keen runner and was able to keep running.

Bye for now, 🙂🙂

 

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi @ Love Running

Nice to hear from you. I have got myself a wig , in anticipation, and was pleasantly surprised at how like my own hair it was. Cannot tell it’s a wig and my hubby didn’t even notice when I can home in it!😂😂

whereabouts are you being treated? The more people there are, the more tips and support we will have to get us all through. I have not seen Oncologist yet, but should start chemo in a couple of weeks, so will benefit from yours and @Poacher65 ’s experience!

I too hope to be able to keep exercising through chemo. I don’t run but love fell walking and have recently taken up Nordic Walking, plus online group classes when the weather not too good. 
Take care and good luck. Xx

Love running
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi all May starters,

I hope it is OK that I join this forum as I am not in the UK. I live abroad and get treated there.

I am starting chemo on 3 May: 4 cycles of EC every two weeks followed by 12 weekly paclitaxel. Not really what I had in mind for summer holiday plan;-)

So far so good, I have managed and recovered quite well from two conservative surgeries removing three tumours and two lymph nodes.

I have even been able to train again. I love trail running and I have just came back from an ACL surgery in October 2020 (2020 and 2021 are not really my years on the health front but it is the same for the rest of world with COVID-19). Running in the forest kept me sane the last two months since I got to know that I had BC. 

I am hoping that I will somehow be able to run through chemo and I am looking forward to starting chemo, despite being scared. Each passing day will take me closer to the end of it but I am scared because it does not matter how trained and healthy I was before the BC, I don't know how my mind and body will cope with chemo. The list of side effects seemed never ending when I got through it with my nurse. But I try to stay positive and enjoy all the positive moments for now, like spending more time with my kids, cutting my hair short, my first wig fitting ever on Wednesday.

On Thursday, I will get my PICC-line and things will start to be real.

Take care and stay safe

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@noodledoodle I hope you have made a good recovery from your surgery. I have some cording but it's improving with daily exercises.

My lymph nodes were clear and I'm told that there is no evidence of them ever having any disease which is positive news. I will finish with radiotherapy too but hopefully just over 5 days. I am on the ROSCO trial which is why I started with 4 cycles of Docetaxel. My tumour was HER2 positive and in addition to chemo I have Herceptin every 3 weeks x 18 cycles which takes me up to early December. I will then have other meds to follow.

I found the members of the December thread really supportive and it's been a huge help in getting through my earlier chemo. I'm looking forward to getting to know you and others as we add our posts. 👍

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

I have had a WLE and sentinel node was clear but my tumour is triple negative, grade 3, so will need chemotherapy, unfortunately, followed by radiotherapy. Seeing Oncologist on May 5th

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

That’s great! All tips and help welcomed. Much better timing on the May group, for end of April start. Good luck and I will be joining you soon!

Karden
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi there,

I hope you don't mind me joining this thread as I am starting 4 cycles of FEC chemo on 29th April so May is a better timescale.

I must tell you that I am also on the December 2020 thread as I started 4 cycles of Docetaxel chemo which finished in February. I then had a lumpectomy and sentinel node removal on 25th March.

Unfortunately for me, it has been decided that I need further chemo as the tumour that was removed still had 4mm of residual disease.

I tolerated the first lot of chemo quite well but don't know how FEC will be. I'm hoping it will be no worse than I have already experienced.

Maybe I can contribute some useful tips in exchange for mutual support.

I look forward to hearing from others. x🙂

Poacher65
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

Have my wig appointment next Thursday as I do like a plan B 🙂

Waiting is hideous ...now feel a little more in control. 

Speak soon xxx 

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Poacher65

Glad your appointment went well. You will do fine I posted on here as I am sure others will be joining before long and Mai17 has posted some really useful advice and links.
The Becca app is great, with some good links to various sites, nutrition, recipes, make up etc 
I am not having the cold cap but have some nice headscarves at the ready. Also my daughter persuaded me to go and try wigs and made me an appointment. I thought I would never be confident enough to wear one as you would be able to tell. How wrong I was! It’s fab. It liked so like my own hair, but with lovely subtle tones in, that I left it on and went out for lunch in it! You could give that a go , just in case. You would be pleasantly surprised. Once I had chosen, she cut it in exactly the style of my own. Even I couldn’t tell 😂😂

I bet you feel a bit better now the treatment plan is underway. I think all the waiting at the beginning is the worst. I have a window of 10 days now, so will try and get as many things done as I can!

speak soon xx

noodledoodle
Member

Re: MAY 2021 CHEMOTHERAPY STARTERS

@Mai7 

Thankyou. This all will be so useful. Xx

Mai7
Community Champion

Re: MAY 2021 CHEMOTHERAPY STARTERS

Hi and welcome to the May chemo starters.

Im sure others will be along soon.

You can also ask the nurses on this forum if you have any concerns.  In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day and get a thermometer and check your temperature every day.

 

Here is the BCN guide on chemo:

https://breastcancernow.org/information-support/facing-breast-cancer/going-through-treatment-breast-...

 

Here are some apps which can help to keep you on track: 

 

https://breastcancernow.org/information-support/support-you/becca

 

https://www.nhs.uk/apps-library/owise-breast-cancer/

 

https://www.careology.health/

 

I finished my chemo in October 2017 and doing very well again now.  Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:

http://lifeafterlola.com/


If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in.  Your conversations can be a real comfort to others.

If you’re new to the forum, here’s the “Getting Started” advice:

 https://forum.breastcancernow.org/t5/How-to-get-started/bd-p/welcomegetstarted

 

noodledoodle
Member

MAY 2021 CHEMOTHERAPY STARTERS

 

Hi, just thought I would start a thread to support each other through chemotherapy, whoever is due to start in May. 

I have an initial oncology appointment on5th May, so should be starting shortly after. I have been told I will definitely lose my hair, so my daughter persuaded me to look at wigs! I went open minded but didn’t think they were for me and thought I would never be confident enough to go out in one. Wow, was I wrong. It looked so good and so like my own hair, I asked them to leave it on for my day out and lunch. My Hubby didn’t even notice it was not my own hair!! So glad I went. 
Hopefully there will be a few May Chemo starters out there to join this thread.