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April 2019 Chemo Starters ๐Ÿ’–

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi

 

Glad to hear you are home Sue and have got sorted with injections.  I usually only suffer nausea for the first 7 -10 day after chemo, i found it helpful to eat little but often - even if it is only half of a biscuit.  I know you have probably tried all sorts, did you change your anti sickness tablets? the first kind i was given actually made me worse, so the nurse changed it to a different kind.

I am just on my way to see the consultant for results of my heart MRI that i had yesterday.

Take care everyone.

Debi 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hello ladies

I came home from hospital today.  Im on the anti clotting injections twice a day for 6 months.  My tummy already feels like a pin cushion.  I had nearly 4 days in hospital and was good to rest but glad to finally be home with my kids.  I asked today how will they know once the clot has dissolved, they may do another scan in a few weeks so hoping these injections work their magic.  Still feeling very nauseous - i have been nauseous almost every day since my chemo started 7 weeks ago.  Nothing seems to shift it.  One of the nurses on my ward told me her sister had chemo and she said nausea was her worst side effect. 

Take care ladies

Sue xxx

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Re: April 2019 Chemo Starters ๐Ÿ’–

Debi, I agree, itโ€™s so lovely to catch up with colleagues and a reminder of normality before cancer diagnosis.   I miss work but really want to be better, to look and feel like myself again before I return to a job I love.  At the time of diagnosis, I realised pretty quickly that I needed to put myself first and take 6 months off work (probably longer) to get through chemo, surgery and radiotherapy. 

 

Sue โ€“ I hope everything is ok and you will soon be home. xx

 

As I mentioned in a previous post, I have avoided using Dr Google for anything relating to my prognosis, risks during chemo or likelihood of recurrence of cancer in the future.  I have put my complete faith in the medical team to make the right decisions for me.  I couldnโ€™t even look at this website, Cancer Research or the Macmillan website until quite recently.  I was too scared to look at anything really and was in denial I even had breast cancer.  

 

A dear friend gave me a book called Tea and Chemo, fighting cancer, living life by Jackie Buxton.   It was first thing I read, relating to breast cancer and is about Jackieโ€™s personal experience of breast cancer, her treatment and coming out the other side.  I found it a very positive, humorous and an enlightening insight into her journey.  I took away a few things from the book and decided to do a bit more research for myself on things that I could control.

 

Something that made me feel really angry and I had absolutely no idea about, is the possible link between parabens in shampoos, conditioners, deodorants and toiletries to breast cancer.  I know that this has been mentioned in other monthly threads but just in case there is anyone else recently diagnosed with cancer who also has no idea, I wanted to post something. 

 

There is a lot of information on the web about the link between parabens and breast cancer based on various studies in women with breast cancer. If you are not aware you should do your own research so you can make an informed decision that is right for you.  To put it into context, Cancer Research UK currently state that there is insufficient evidence to suggest that parabens can cause breast cancer.   

 

However, I found an interesting article on the Breast Cancer UK website about parabens (June 2018):

https://www.breastcanceruk.org.uk/science-and-research/background-briefings/parabens/

 

On a personal level, I was angry that I had no idea of the possible link and maybe you are all more clued up than I was?  Had I known, I would have switched to a paraben free shampoo, conditioner and deodorant years ago.  There may be no proven link that parabens cause breast cancer, but I really donโ€™t like the thought of parabens being stored in my body.  For me it was an easy decision to switch to paraben free products, something I could control and do for myself.

 

I didnโ€™t use a cold cap during chemo.  My hair is naturally very fine and I figured I would lose it pretty quickly during chemo.  On the day of chemo number 2 (day 21), I had my hair shaved off.  A decision I have not regretted thankfully.  I have a really lovely wig to wear in public and have received so many compliments both by people who know I have breast cancer and those who I havenโ€™t told and just think I have a new hair style.  I just wear a scarf in the house for comfort. 

 

Another tip I picked up from the tea and chemo book was to wash my scalp every day going through chemo and beyond. Apparently It keeps the scalp and hair follicles clean and healthy ready for new hair growth.   I ordered a paraben free unscented shampoo and conditioner from Green People (on-line) which I have to say is really lovely.  Very gentle, no nasty chemical additives, organic and my scalp feels amazingly healthy and blemish free.  My hair is trying to grow although only tiny very light fine hairs at the moment (after chemo 4).  I have absolutely no affiliation to the company by the way, Iโ€™ve just been really impressed with their products as a first time user.  They are definitely more expensive but I am literally using a pea sized amount of shampoo/conditioner every day so it will last ages.  You can find a 20% off coupon by googling on-line so that makes it a bit cheaper too (discount code VCJUNE20 at checkout if you are interested).  It feels good to massage my scalp every morning in the shower and I look at this as a new opportunity for my hair to grow back healthy using a natural product through chemo and looking towards the future.  Iโ€™ve ordered a scented shampoo/conditioner from the same company for when Iโ€™m through chemo and used up the unscented ones. 

 

Iโ€™ve noticed there are lots of companies now making paraben free shampoo/conditioners such as Herbal Essence, Head and Shoulders, Faith in Nature, Palmers and lots of different ones in Holland and Barrett to name a few.  Paraben free products do not necessarily cost any more than any others, you just need to check they are paraben free (they usually advertise it pretty well on the front or back of the product if it is paraben free).  Iโ€™m currently using Sanex Kids 0% shower gel but I notice that Dove also do quite a few different paraben free shower gels.  I read a suggestion somewhere that it may be a good idea to use unperfumed products during chemo so you donโ€™t associate any particular smell with chemo in the future.  For that reason I put away all of my favourite perfumes and now just using the one I like least, along with an unperfumed shampoo, conditioner and shower gel. 

 

I previously used Body Shop skin care products on my face for years.  Iโ€™m not sure if their products are paraben free so Iโ€™ve e-mailed the company to ask.  Iโ€™m still awaiting an answer a month later.   I may decide to switch to more natural skin care products in the future.  Iโ€™ve switched to Bionsen roll-on deodorant (paraben and aluminium free) โ€“ around ยฃ2.20 from Boots, Superdrug and Sainsburyโ€™s.  Itโ€™s a deodorant rather than an antiperspirant so took me a couple of weeks to get used to but now I really like it and it seems to do the job well. 

 

Anyway, apologies for the long post but I wanted to post something about parabens in case it is of use to anyone also not aware reading these threads.   

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi everyone

 

Sue i hope you are doing well and resting lots. 

Just thought i would pop on here to wish everyone well who are having treatment this week.

Its a lovely sunny day so out in the garden it is.  Had a lovely catch up with my work colleague yesterday.  I like to write the days down in a diary so when i have a bad day i can see that not all days are going to be like that and it helps me get through.

Take care lovely ladies

Debi 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi Sue

 

Sorry to hear that you are still in hospital and it's not the result you were hoping for.  Still you have to trust the medical professionals to make the right and safest decisions for you.  At least if the PICC line stays in, it will save you worrying every time about how your veins are going to cooperate.  Rest up and hopefully the blood clot will have reduced or disolved by the time you are due your next chemo. xx

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi Bramley

No im still in hospital.  Oncology team came to see me.  Theyve decided to keep the PICC line in as thet could dislodge the clot if they take the line out and then id have a clot floating around my body!! Ive already started anti clotting injections and the swelling in my arm has gone down by 2cm.  The oncologist said the injections will also help to dissolve the clot.  My next chemo isnt for another 2 weeks so we're hoping it will have reduced the clot by then.  They want to keep the PICC line in so they can use it for the blood tests and chemo as theyve struggled to get veins.

Not quite the outcome i was hoping for but need to go with what the oncology team advise.

At least im getting some rest being in hospital as im always running around after the kids at home.

Hope you are all well ladies.

Take care

Sue xxx

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi All

 

Debi, my arm hurts a bit if I straighten it and lift it up but can't figure out if it's a damaged vein or a bruised bone or something.  I'm trying to have most of my blood tests and chemo on my right hand/arm as the cancer is in my right breast.  I haven't had surgery yet so I can use either arm but I figure I may as well try and use the right arm primarily to leave the veins in good shape on my left arm for future blood tests etc post surgery.  Hope your heart MRI is all ok on Monday and your first dose of Docetaxil goes well on Tuesday xx

 

A couple of you mentioned watery/gritty/blurry eyes and yes I'm experiencing that too.  Haven't used anything but have just put it down to the chemo drugs.  I apply eye make up most days if I'm going out and about but not had any issues before chemo.  I think my eyelashes are now beginning to come out as I've noticed they are very sparce when I try to apply mascara.  Eyebrows also pretty sparce and much lighter in colour so having to fill in with an eyebrow pencil if going out so I can see them again!  Only hairs that appear to be completely unaffected by chemo are those on my legs, lol.. now it would be very handy if they disappeared for a few months!

 

Christine - hope your PICC line fitting goes well and without issue today. 

 

Sue - hope you managed to get your PICC sorted and you are out of hospital?  Did they take it out?

 

Weather sunny here today.  I'm making the most of being in week 3 before chemo 5 next Weds ๐Ÿ™‚  Hope everyone is doing ok xx

 

 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi everyone

I have blood thinning medication for DVT's (blood clot in the leg) from 3 and 5 years ago.  My clots were called 'unprovoked' clots, which means they don't know why they happened.  My consultant changed me from wafarin tablets to tinzaparin injections while i am on chemo as it is easier to stop these before i have my surgery. You will be fine on the blood thinners because they help to prevent any more clots forming.  Your nurses will be able to answer any concerns you have, try not to worry.

My week as been a good week so far, my energy levels are up and my dizziness as gone.  I have a heart MRI on Thursday and see my consultant Friday, bloods next Monday before Docetaxil on Tuesday and Herceptin and Pertuzumab on Wednesday!

My eyes are just a bit gritty on a morning but once i am up and about they are ok.

Has anyone suffered from sore arm veins? I haven't had surgery yet so i think it might be from the chemo.

The sun is trying to get out here in Yorkshire, it makes all the difference when you can get out and about, even if it is only to potter around the garden. 

Sending strength and hugs to all those struggling with side effects, we are getting through this.

Debi ๐Ÿ’–

 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi christine

Im so sorry to make u worry about the PICC line.  I know there are risks with things like this and im sure the nurse did explain it to me at the time but im just very anxious about it.  They didnt say how the clot has formed.  Maybe have a chat with your nurse tomoro? 

Sue xxx

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Re: April 2019 Chemo Starters ๐Ÿ’–

Iโ€™m nervous now as Iโ€™m getting my PICC line fitted tomorrow! Did they say how it could have been prevented? Should I still go ahead with mine? I just canโ€™t bear having another 4 cannula attempts each week. Got my 9th weekly Chemo session tomorrow after my cardiology appointment and PICC line insertion. Going to be a busy day! 

X

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Re: April 2019 Chemo Starters ๐Ÿ’–

Thank you kelly xxx

I wish id never had the PICC fitted and id read up about the risks of blood clots as im now very anxious about the fact i have a blood clot in my body and ill be on injections for the next 6 months to dissolve the clot and prevent it from coming back.  As if im not putting my body through enough already with the chemo and radiotherapy ๐Ÿ˜ข๐Ÿ˜ข๐Ÿ˜ข

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hiya Sue

 

sorry to hear you are in hospital. Just wanted to pass on best wishes. X

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi ladies how are we all doing?

Im about to spend the 2nd night in hospital because i have a blood clot in my PICC line!! I went to get it cleaned yesterday and my arm and neck was swollen, i felt very sick and faint so i got sent to a&e for a scan which confirmed there is a clot.  Im hoping it will be taken out tomoro and go home the same day.  Ill be on anti clotting injections for the next 6 months which will hopefully dissolve the clot.  The docs discussed putting in a new line but ive said no as not going through this again!!!

Anyone else had or heard of this?

Sue xx

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Re: April 2019 Chemo Starters ๐Ÿ’–

I am also suffering more with a watery eye. 

 

I do get grass related hay fever but this is worse than I've had for years with no let up.

I've been told I can take allergy meds to help

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi all

 

im having number 10 of my weekly chemo tomorrow & just wondered if any of you have had any issues with your eyes? My left eye is very watery, sticky & puffy. Any one else had an issues? Iโ€™m going to see what the nurse says on the day unit tomorrow when I told them Monday they said it could be pollen? But I donโ€™t normally suffer. Thanks ๐Ÿ™ 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Evening

 

Phet - yes we must stop feeling our lumps, it will drive us to distraction trying to figure out what chemo is doing to it.  If the side effects of chemo are anything to go by the lumps should be getting nuked in the process with any luck!  They are pretty potent drugs. Glad you are doing ok and have got through the first week on your first round of docetaxel.  I'm always relieved to get into the 2nd week as the side effects start to get less.  Yes water, water and drink more water is definitely the key to surviving chemo.  I literally keep downing a glass of water every time I am near the sink. It doesn't taste very nice but needs must and yes it makes you feel better.  Sounds like you have a few lessons learned for next round.  It's really strange how you get into a 3 week cycle isn't it to prepare for the next round.  It literally takes over your life.

 

Pollensa - yes the CT scan is the quick one where it tells you to hold your breath and you move in and out of the tunnel. It's much quicker than MRI scan where you literally have to lay still for ages.  Hope it all goes ok and don't be afraid to tell the staff if you are feeling anxious.  I'm sure they will understand.

 

Oots - hope the dry cough is getting a bit easier.  Chemo certainly makes us far more vulnerable to germs. Our bodies are certainly going through it. 

 

My hands are slowly recovering thank goodness. Slightly less swollen and lots of peeling skin now.  Very unattractive but oh well at least I can use them again ๐Ÿ™‚ 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi all, 

 

Bramley - I completely agree about the emotional side of things being hard, especially with neoadjuvant chemo. I'm still not sure if my lump is shrinking, though I think it is softer now, and the more I feel it the more I'm convinced it's actually growing! For this reason my oncologist told me to stop feeling it but it is hard....

 

Pollensa - good luck with your CT. I also hate scans and the whole process is just so unpleasant. I keep telling myself I have to get used to them as they'll be happening for years into the future (I'm especially trying to develop strategies to help with scanxiety) but it's tricky. 

 

Oots - I'm so sorry to hear about your cough! You had been doing so well on the TC regime. You're right that every little thing hits us harder when we're post-chemo. I'm finding that hard with the Docetaxel - unlike the EC, when I went rapidly downhill after infusion and then crawled back up pretty consistently, on this drug it's ups and downs - I feel fine one day and rubbish the next...

 

I'm on day 6 now since my first Docetaxel and it hasn't been an easy ride but it hasn't been terrible, and even on my bad days I still think I prefer this to the side effects of the EC (which left me prostrate in bed and unable to sit up for days). As predicted, I felt good on days 1-3, started to get achey muscles on evening of day 3, and felt very weak and achey with a very sore throat days 4-5. I spent 4 hours yesterday at the hospital bc my temperature spiked (to 38.6 according to my ear thermometer!) - when I went in it had gone down and they checked me and I had no infection etc so they think it was my body responding in some way to the chemo. But they gave me a saline drip for an hour and I felt much better, which made me realise I'm not drinking enough water. 

 

So far the lessons I've learned from this round that I'll carry through to round 2 of Docetaxel, and may help others: 

1. Drink water until you think you can't drink any more, then have some more. Once the hospital hydrated me yesterday, I realised how much I was suffering from lack of water, even though I'd been drinking 2 liters a day

2. Constipation - I've been taking codeine for the joint pains and unsurprisingly got very constipated. The hospital had given me Laxido sachets and I only started using them once I was already blocked up - next time I'll start using them straight away along with the codeine, to try and keep regular. 

3. Painkillers - I took the advice of some other threads and essentially started taking these on day 3 no matter what. I think they've kept most of the worst pains at bay - I haven't had the terrible stabbing pains other people have described (inshallah). They don't stop the muscle aches and I do still feel stiff and tired but not in terrible pain. I take codeine roughly every 6 hours, and paracetamol every 6 hours, and I space them out to stretch out the effects - so I take 2 paracetamol 3 hours after 2 codeine and alternate like that. I've also been taking a Clarityn every day which is meant to help with bone pain - again, not sure if it is working as I did it from the beginning but I haven't suffered terribly so that might have helped. 

 

I've noticed a bit of pins and needles in my hands but not terribly, and only when I'm lying still for a long time (so when I wake up I notice it). I haven't had blisters etc on my feet yet, but I've been wearing slippers around the house to protect the soles of my feet just in case. I'm definitely losing my eyebrows and my eyelashes are starting to thin too - not looking forward to that bit as I know it will make me look properly sick! I haven't had too much of a change in tastebuds, just a little bit sandpaper-y feeling in the mouth, which is what I had on EC too. I have had a very sore throat, and Difflam has helped that a lot - I've been gargling with it, and also bought a Difflam throat spray that I keep next to the bed. 

 

Other than that it's been lots of Netflix, and trying not to Google breast cancer and prognoses etc! I'm quite interested in the research side of things, and this weekend is the big American oncology conference (called ASCO) where they announce the latest results of trials etc. If others are interested, you can follow the #ASCO hashtag on Twitter or watch out for reports in the news (yesterday quite a lot of the newspapers reported on the latest positive results of a trial of ribociclib for breast cancer for eg). But I completely understand if for others they'd prefer to avoid the scientific papers and whatnot; for me I feel it is reassuring to know new innovations are being made all the time for this terrible disease, but my partner says sometimes he thinks I get too obsessed and that's not helpful! I guess it's all balance...

 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Morning all

 

I had a few challenging days. I had settled so nicely into my TC recovery routine and, initially, after the infusions on Tuesday, all was as normal. Again, lost all taste, no sickness or anything unusual and the pains were very minor but on Thursday I developed a dry cough. I thought maybe it was hay fever but then it got worse and I got a sore throat too. No idea where I picked this up.

I called the hospital yesterday just to get some guidance what to do. The oncologist was not too worried unless the temperature was going up. It was hovering on the upper side of 37 but didnโ€™t go above 38.

Itโ€™s the fatigue and the coughing at night that are the problem. I am absolutely exhausted but the cough is getting a bit more loose now. Just need to sit it out, I suppose. Hopefully it wonโ€™t take too long. Just goes to show how such a โ€˜little thingโ€™ that is normally not a problem at all can make such a difference when our bodies are under duress.

Hope you all can keep germ free!

 

Oots

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Re: April 2019 Chemo Starters ๐Ÿ’–

Morning,

 

Bramley, thank you for your good wishes. I'm pleased that you are sounding better. FEC has been ok with me so I'm still not convinced docataxel  is going to be a walk in the park!

 

I had my surgery before chemo so not sure why I'm having ct scan. I dont tolerate scans well and , like everyone here, have had a good number! I find the staff don't communicate well. I needed to be reassured and told how long the treatment still has to last, or I get terribly anxious and panicky. As I remember the ct scan is one of the better ones but I'm still going to be firm with the radiographer.....

 

Hope you're enjoying the sun.........as I look out at a grey, dreich sky "sigh"

 

Pollensa

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Re: April 2019 Chemo Starters ๐Ÿ’–

Evening!  Hope everyone has managed to enjoy some of the sunshine today.

 

Kelly, thank you.  As you say we are all one day closer to finishing chemo treatment ๐Ÿ™‚  I think my hands are a little less swollen today.  I'm determined to get my wedding and engagement ring off on my own before Chemo 5 on 12 June.  Still got a bit of time for swelling to reduce hopefully to normal size fingers again.    I should have said on my last post that my stomach, guts and bowels are holding up so much better on T rather than FEC.  So aside from the hand issue and the flu type symptoms on day 4-5, I would still take T over FEC so far ๐Ÿ™‚  I'm now on day 10 post chemo and I feel my energy levels are really good.

 

Pollensa, glad your last FEC chemo went without issue yesterday.  Half way through now and a real milestone.  I hope the side effects are not too bad this round.  I really hope your CT scan shows only positive news.  I remember my CT scan during the first few weeks of testing was the worst part.  Just not knowing if the cancer had spread was truly terrifying. Are you having the CT scan part way through your treatment to check on how the chemo is working?  I've read quite a lot of posts about ladies having mid point scans during chemo to check on size.  I haven't had any checks on size of lump so far.  I saw my Consultant before chemo started in March and not seeing her again until 2 weeks after chemo 5 (in June) when I assume she will check then and book me in for lumpectomy.   I feel the lump is definitely smaller but it feels different if I am sat upright or laying down flat so then I start overthinking it.   Yes the emotional side of this journey is certainly challenging.  I have always been such a positive person, but I'm sure like everyone else, I feel the whole cancer diagnosis has also completely changed me as a person.  That's why I am determined to try and do everything possible to focus on the things I can control in order to get through this long treatment plan being in the best shape physically and mentally as I can be.

 

We can do this and come out of the other side to get our normality back ๐Ÿ™‚  xx

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hiya Bramley

 

sorry to hear you have been suffering with swollen/sore hands. hopefully that has eased for you a bit now. Iโ€™ll take your advice and take off my rings. Will also make sure I have enough painkillers in. Glad to hear youโ€™ve not suffered with nausea though. 

On a positive, youโ€™re closer to the end of your treatment...1 down, 2 to go ๐Ÿ‘x

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi everyone,

 

Bramley, so sorry to hear about your hands and you were doing so well too. But it's a good thing to be aware of if, like me, you start docataxel  soon. So thanks for that.

 

Had my last FEC yesterday, dreading my BP being too high and problems with veins! But everything was fine.....yeah! Bp perfect and vein found first time. 

 

Got speaking to a couple of ladies at same stage as me. We all agreed that our side effects were manageable albeit horrible. Nobody wants to lose their hair or to feel constantly tired but we hadn't ended up in hospital or had anything worse. BUT the emotional side effects are the pits!

 

Before the docataxel I have to have a ct scan and meet with oncologist so that's my next big worry. What will the scan show! What will I be told! Oh well, onwards and upwards....

 

Not a particularly nice day in Scotland, believe it's hot and sunny in London........not fair!

 

Pollensa

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi Kelly

 

Apologies for not posting for last few days.   It's been quite the journey after first dose of Docetaxel!  I felt absolutely fine until the evening of day 4 (Sunday) post chemo.  I started to feel a bit achey and flu type symptoms.  By Monday I really felt quite poorly, just really tired/ and achey.  However I still tried to keep as active as possible and went out as normal on my morning run/walk.  My fingers started to swell on Monday and became quite painful.  I was aware that this drug affects hands and feet so just thought it would sort itself out.  By Tuesday (day 6) post chemo my fingers and both hands were literally double the size and painful.  My temps were a bit erratic too.  I took paracetemols but by Weds I literally couldn't use my hands and was still struggling to control my temps.   I called the chemo helpline at my hospital and was asked to go in to be assessed in light of temps (37.9) and hand situation.  

 

Quite a lot of bloods were taken from me at the hospital as they wanted to ensure I had no infections.  Thankfully all bloods came back clear and amazingly good considering I was one week post chemo!  Doctor looked at my hands and explained that approx 5-10% of people on Docetaxel will experience some side effects with hands or feet.  My feet thankfully have been absolutely fine.  He said mine was quite an extreme reaction on my hands.  He was happy that my raised temp was caused by the reaction to my hands from the chemo and there was no other infection in my body.  He suggested I may need to have my wedding ring cut off but to monitor in next few days.  There is nothing he could give to reduce swelling or redness but to take paracetemols for pain if necessary.   I will just need to wait for drugs to work out of my system.  I was able to go home a couple of hours later and I felt reassured that my body seems to be doing ok from blood tests even with all these horrible side effects of chemo.

 

I will need to ask Oncologist if there is anything he can do to try to prevent this side effect after chemo 5.  Doctor suggested he may presribe steroids for longer after chemo to try to prevent swelling starting.  I don't want to reduce the dose or not have this drug as it's know to be an excellent combination with FEC for this type of breast cancer.  I'll just take the advice of my Oncologist when I see him the day before chemo 5.

 

My hands are still swollen and painful but I think slightly better today. I can't really use them for anything as I can't bend my fingers very far.  Literally typing this with one finger, lol..  I'm using reusable cold gel packs from the freezer which helps to reduce burning sensations.  I will need to try and get my wedding ring off before chemo 5, something I've not done in 25 years of marriage :(.   My advice to anyone having Docetaxel for the first time is to take off any rings before treatment just in case you have any swelling to your fingers.  I wish I had known before.

 

Apart from hands I feel relatively well, as much as I can on chemo.  I still have no nausea so I think overall I'm doing better than on FEC.  Foods don't taste the same and are not enjoyable at the moment but I'm still trying to eat as healthily as I can.  Husband and youngest are having to do all the cooking at the moment but hopefully hands will improve in next few days. 

 

Just really looking forward to getting through next 2 rounds of chemo, hopefully on time.  It's such a tough thing to go through and difficult for loved ones to understand how you feel when you can't really explain it.   Sending hugs to everyone going through chemo experiencing horrible side effects xxx

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi OOTS, 

 

I'm also using Evonail, I'm quite surprised at how few people know about it, as I know it's commonly prescribed by oncologists in France. I've read a few research studies but the numbers of people involved are small so the results are limited, but seem encouraging. 

 

Much better than nail varnish for me as dark shades turn my nails yellow and looks daft on my short nails! 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi Phet7178

 

I start docetaxol next week, so it was useful to hear about your experience. I'm more worried about the joint pain, but I've still got plenty of painkillers from surgery . As I've been able to stay quite active through fec, it's the part I'm dreading most!

 

I've also started Zolodex, but haven't had any menopause symptoms yet as I was already having hot flushes regularly! 

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Re: April 2019 Chemo Starters ๐Ÿ’–


@Phet7178 wrote:

Susan and Kelly- Iโ€™m so sorry to hear youโ€™re having trouble with veins. Have you thought about a PICC? I HATED mine at first- just feeling it there made me squeamish, but now I love it, no worrying about veins and it makes infusions so easy. 

 

Christine- have they given you any more info on your raised liver results? I found out by accident a few days ago (overhearing the chemo nurse) that my ALT level has been raised throughout - not enough to stop chemo, but it worries me nonetheless. I had a raised ALT years ago on a routine blood test and not take special notice of it each time, so I can see Iโ€™m going to have to keep an eye on this. 

 

Im Day 3 post-Tax and itโ€™s pretty much as people say, ie Iโ€™ve felt relatively normal so far. Yesterday I was tired but nothing major (nothing like FEC where I needed my partner to walk me to the loo on day 2!). Today I woke up with aching muscles, like Iโ€™d run a marathon yesterday, and just the hint of some bone pain. So Iโ€™ve started on the codeine already- my onc told me the second I feel a twinge to start taking it as itโ€™s harder to bring the pain down than catch it early. At the moment the codeine is making me feel nice and chilled out so thatโ€™s something!

 

today I plan to stay in bed/on the sofa, but I might try to do a little work. Iโ€™m an academic and much of my work can be done from home. Work has very kindly signed me off until April next year (combination of my 6 months sick leave and exceptional sabbatical leave designed to give me the time to get back into research without worrying about teaching and admin as well) and theyโ€™ve made it clear they donโ€™t expect me to be doing anything right now. But in terms of my career progression itโ€™s not great to have no publications or grant proposals in for a year. Also my therapist has suggested that doing a little work on my research (which I love doing) might give me more motivation and help distract me from my worries. My concern is just that Iโ€™ll try to do some and not be up to my regular brain capacity and that will depress me. Anyway, now Iโ€™ve written it down here, Iโ€™ll let you guys know how I go, and maybe that will keep me accountable! 

 

Hope everyone else is well today and avoiding the worst of the SEs! 


Thanks I just had blood test for tomorrow and wasn't too bad as I drank about two pints of water beforehand . The soreness in my mouth has eased and just hope can get through tomorrow . Really don't want to have a line but will see what happens x 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hiya MBJ

 

Ive got a PICC line in now but I had 2 sessions through a cannula, so my veins are damaged from that

 

thanks Kelly

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi Zoe Twin mum

I am from the February 19 thread and I  had sever neutropenic sepsis following my first FEC. I did not carry on with the chemo and am now taking Letrozole. Looking back it really felt like the right decision at the time. But since getting better I worry all the time that I should have carried on. I did not have a very commited Oncologist and was not offered any compromise other than stoping. Looking back I probably should have had a second opinion but when you feel so sick it's hard to be on top of things. I really hope changing your drugs will allow you to complete your course. But we have to make tough decision all the time. Good luck. 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Susan and Kelly- Iโ€™m so sorry to hear youโ€™re having trouble with veins. Have you thought about a PICC? I HATED mine at first- just feeling it there made me squeamish, but now I love it, no worrying about veins and it makes infusions so easy. 

 

Christine- have they given you any more info on your raised liver results? I found out by accident a few days ago (overhearing the chemo nurse) that my ALT level has been raised throughout - not enough to stop chemo, but it worries me nonetheless. I had a raised ALT years ago on a routine blood test and not take special notice of it each time, so I can see Iโ€™m going to have to keep an eye on this. 

 

Im Day 3 post-Tax and itโ€™s pretty much as people say, ie Iโ€™ve felt relatively normal so far. Yesterday I was tired but nothing major (nothing like FEC where I needed my partner to walk me to the loo on day 2!). Today I woke up with aching muscles, like Iโ€™d run a marathon yesterday, and just the hint of some bone pain. So Iโ€™ve started on the codeine already- my onc told me the second I feel a twinge to start taking it as itโ€™s harder to bring the pain down than catch it early. At the moment the codeine is making me feel nice and chilled out so thatโ€™s something!

 

today I plan to stay in bed/on the sofa, but I might try to do a little work. Iโ€™m an academic and much of my work can be done from home. Work has very kindly signed me off until April next year (combination of my 6 months sick leave and exceptional sabbatical leave designed to give me the time to get back into research without worrying about teaching and admin as well) and theyโ€™ve made it clear they donโ€™t expect me to be doing anything right now. But in terms of my career progression itโ€™s not great to have no publications or grant proposals in for a year. Also my therapist has suggested that doing a little work on my research (which I love doing) might give me more motivation and help distract me from my worries. My concern is just that Iโ€™ll try to do some and not be up to my regular brain capacity and that will depress me. Anyway, now Iโ€™ve written it down here, Iโ€™ll let you guys know how I go, and maybe that will keep me accountable! 

 

Hope everyone else is well today and avoiding the worst of the SEs! 

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Re: April 2019 Chemo Starters ๐Ÿ’–

My hand is so badly bruised I am really worried about Friday's chemo ... trying Sudocrem and drinking lots of water . It's rough isn't it ? 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Evening all

does anyone else have damaged veins from having chemo via cannula in hand? Been told itโ€™s cording.

Anyway, Ive just slightly knocked my arm n canโ€™t believe how much it hurt n it swelled up and bruised straight away !

Our bodies donโ€™t half take some beating donโ€™t they and become so sensitive. 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi Zoe, 

Sorry to hear that. I start FEC in July and Iโ€™ve already got elevated liver function tests so thatโ€™s a bit of a worry. Iโ€™ve been told to drink more water than I already am to keep my liver flushed along with my kidneys. 

My hb dropped and so did my neutrophils today but not enough to do anything so they carried on with chemo. I ended up having a 4 hour delay and then 4 cannula attempts!!! Plus I fainted on the last attempt...awkward. Not needle phobic or anything, was all very random! Plus my veins are just burning up, swelling and going hard from my weekly chemo. So Iโ€™m upgrading to some proper hardware and getting a PICC line put in. They said if the weekly Paclitaxel infusions are burning my veins then the FEC certainly will. 

So all in all I have 6 needles today, including bloods and my zoladex. Hopefully the PICC line will make things a little smoother. 

 

Cold capping was fun today too! The cap actually froze to my head. I had to wait for my head to warm the cap up to defrost my hair so I didnโ€™t pull it out! Quite comical! Not sure how long the cold capping will continue though. This last week Iโ€™ve started losing quite a bit of hair. And Iโ€™ve got a long way to go still. Iโ€™m going to keep going but Iโ€™m going to order a wig ready. 

X

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Re: April 2019 Chemo Starters ๐Ÿ’–

I am not enjoying the T - my mouth is really sore which TBH is worse than any of the side effects from FEC because I cannot enjoy food or drink which hasn't been a problem so far . And I have another eight sessions to go ... am getting sick of it now my surgery was Jan 31 and this is just back-up . Can understand why people start thinking of throwing in the towel I was fine with the chemo every three weeks . Much more doable end of whinge 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Haa anyone else had their FEC stopped!!!!

 

Hi All

 

What a day, normal visit to oncologist before chemo tomorrow and all has changed. After my first FEC I had neutropenia and also an issue with my Liver Function being quite high so my 2nd round of FEC was reduced (well the Red E was put to 60%). I had to have blood tests twice the following week and I thought all was well. Bloods yesterday are ok but now I've had to stop my FEC altogether to the E causing drug induced Hepatitis. So tomorrow I am switching over to T to see how my liver reacts, so may have 4 rounds in all instead of 3. Now I'm worrying that if my Liver is not in a good place then I may have to stop altogether. I know I am more fortunate than others as all my cancer was removed during surgery and that this is more belt and braces to protect myself, but its still worrying. 

 

So bring on the T and see what happens.

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi Debi

 

I didnโ€™t have an MRI. I had a CT scan and an ultrasound of the heart (only because I have elevated blood pressure). One of my liver function values was slightly up after the first chemo and I had an ultrasound of the liver too but there was not issue. The CT scan served as a comparator there. 

 

I donโ€™t do lots of steps either but I try to do as many as possible challenging myself when possible and stay active with house and garden. I am in the fortunate position to be able to work from home and my employers are very accommodating. I work when I can. Usually in weeks 2 and 3 but I am not at my most productive. I feel safer not going to work where I would have contacts with a lot of people. Constantly surrounded by a large variety of infections.

 

I highly recommend the โ€œlook good feel betterโ€ session. Definitely lifted the spirits for all. There was one lady in a wheelchair and she looked exhausted and probably didnโ€™t feel that she wanted to be there. At the end she was smiling, even laughing and had makeup on that made her look much less ill. It was amazing to see. A great sense of camaraderie too. 

 

Sitting here with a very flushed face but still feeling good on steroids. Managed 5 hours of restful sleep. Drinking loads but no appetite. Well, itโ€™s not like I am without reserves to cope with eating less...... and I will make up for it next week when food starts to taste of something again.๐Ÿคฃ

 

Oots

 

 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi everyone

 

Oots thank you for the run down of your experience on T.  I start my first dose of T on 11th June and i am already getting myself worked up ( i had a funny do with last lot of EC).  I know everyone is different and will have varied side effects but it is good to see how others cope and get some tips.  Did you have a heart MRI before your T treatment started? 

I am on day 9 after my last EC and only just starting to feel 'normal'.  I have also been on an emotional rollercoaster these past couple of weeks and cry at the smallest of things. 

I am in awe of the ladies that are managing going to work and the ladies that are walking lots of steps ( i had all on getting to that amount before diagnosis! ) you are amazing.

The look good feel better sessions sound interesting, i am going to have a look to see if they do one in my area.  I have been cold capping but i think i may throw in the towel and shave off my thinning hair, its been coming out slowly and i have to where a cap or my wig when i go out now anyway.

Hope everyone is doing well and not suffering too many side effects.  

Debi

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi Phet7178

 

Just to clarify, I am on Docetaxil/Cyclophosphamide (TC). I take steroids for three days, starting the day before the chemo and an hour before the chemo, a tablet against nausea (netupitant/ palanosetron). 30 minutes before the start I take a couple of Paracetamol to help with the 10 minutes of pain due to the cold cap. That is all before the chemo. 

 

I get a saline infusion just ahead of the chemo which is loaded with more steroids, piriton and ranitidine. Then they put me on a 1 hour drip for T and perhaps another 30 minutes with C which is fed into the saline drip by syringe. 

 

I have a single shot of the growth factor the next day and then the joint/muscle pains usually set in later that day and I took two lots of Paracetamol in the second part of the day. The next 3 or 4 days I took Paracetamol as needed. I check my temperature before I take it. Paracetamol seemed to deal with the pain very well. 

 

I have not come across the gel gloves. I have a nail protection (Evonail) to paint on nails and cuticles to protect them. Itโ€™s not coloured but seems to do the job. I am also on Omeprazole now because I had a bit of indigestion after the first chemo. I have tried not to take it but I definitely feel less bloated when I take it. So I am taking it daily for now.

 

I have no other side effects that require medication. I would say that a dry mouth, loss of taste and a sore mouth can be a problem. I rinse my mouth with saline if there are any food bits stuck to gums after a meal and I take good care with brushing and use mouthwash. 

 

I usually start to feel a tingling on my tongue starting within an hour of the infusion, getting stronger every hour. I loose taste for some acids, salt and sugar. Strangely, subtle flavours like mashed potatoes are fine and I like tomato ketchup because I can taste it. I have no appetite for about a week but make up for it the following week when it all gets better. 

 

There is the issue of flushing of face and cleavage, the fatigue and struggling with concentration for a few days. There is nothing medication can do and it all goes within a few days and resting helps.

 

I donโ€™t have any issues with nausea, being sick, tingling in extremities, bowels, bruising etc.

 

I am not the nervous type but before my first infusion I was because I had no idea what to expect. Would I tolerate it? What kind of side effects etc. I was relieved to find that it wasnโ€™t too bad But I took a diary of observations every day recording sleep, pains and other observations. These observations tracked almost perfectly in the second cycle. This helped me with nerves for the second round and this time I as cool as a cucumber.... assisted by the cold cap ๐Ÿคฃ

 

I hope all of you new to the T treatment have not too many troubles. I know we are all different but hopefully you wonโ€™t experience anything too bad. 

 

Oots

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi Phet7178

I have the same questions as Kelly as I start Docetaxel next week.

Thank you

Louise

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi,

 

So many of us are pretty much at the same stage of treatment.  It's really helpful to hear from everyone how we're all coping.

 

Oots, you seem to be the "go to girl" for info about docataxel. All your posts are really encouraging and realistic. Thank you!

 

Went to look good feel better course this afternoon.  Absolutely marvellous. Yes, the goodie bag is fab but I loved the opportunity to speak to other women going through the same things but out with a clinical setting. Kind of like this forum but face to face! The beauticians were great, very hands on. I even got eye liner flicks!  If you get the chance to go to the session I would highly recommend  it.

 

Pollensa 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hiya Bramley

 

how are you feeling now after your 1st Docetaxel? X

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hiya Phet7178

 

could I ask what type of gloves you have bought and what are they for? I searched gel gloves in Amazon but all kinds of gloves came up.

also, what are the other medication you are taking for? Is it recommended for anyone starting Docetaxel to get them?

I start next week on Docetaxel and have not really been told about how to prepare for it. Iโ€™m getting worried about side effects and would like to do all I can to reduce the effects 

thanks Kelly

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Re: April 2019 Chemo Starters ๐Ÿ’–

Had first Taxol

Friday after three FEC - sore mouth throat and headaches but no nausea . Eight more weekly treatments to go can't be over soon enough ! Anyone else on this regime ? 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Good afternoon ladies!!

Phet7178 good luck with your first docetaxel - can u let us know how it went? Today i had my 3rd and final EC and then i have 3 doses of docetaxel.  My nurse said i shouldnt feel nauseous but i will feel hungry!! Nausea has been the worst side effect for me even tho ive been taking my anti sick meds. Ive been managing to eat but not done any walking or running cos of the nausea so would be great to get active again.

Good luck ladies keep strong

Sue xxx

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi all! Iโ€™m in the taxi to my first Docetaxel right now. Iโ€™m all stocked up with things that meant to decrease symptoms - Iโ€™m going to freeze my hands during the treatment with gel gloves off Amazon to try to prevent peripheral neuropathy and nail loss, Iโ€™ve been taking Claritin and lorazepam since yesterday (along with the steroids and cyclazine) and Iโ€™ll take nurofen just before the infusion and throughout to try to stave off the joint pains. Iโ€™ll report back how any of this goes!! Oots, har you tried any of the above and/or found other things that helps with the symptoms? Trying not to be too nervous! 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hiya Oots

how are you finding the Docetaxel? Iโ€™m starting my 1st round of it next week and gotta day, am a bit nervous about it. 

Iโ€™ve just finished 3 rounds of Ec and just about got used to those side effects

thanks Kelly

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Re: April 2019 Chemo Starters ๐Ÿ’–

Morning all

 

just popping the steroid pills ahead of my third dose of Docetaxel (T) later this morning. Here we go again. In a way I am resenting that I will feel so rubbish for a few days but then it takes me step further to finish line. That makes it so worth it.

 

I start taking the steroids a day before the chemo and I now understand the phrase being โ€˜on steroidsโ€™. I am in overdrive wanting to do stuff driving the family crazy. ๐Ÿคฃ But I keep telling them that it helps with the preparation for the week I am less useful. 

 

Good luck with your treatments this week. We will handle this!

 

Oots

 

 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Sharon, hope your new picc line works well for next chemo.  Sounded like an eventful trip to the hospital!  At least good to help for training purposes although not great for you!  Alice, hope the eyes and vision are getting better.  I did notice on FEC that sometimes my eyes felt a little out of focus and blurry. 

 

So I'm on day 3 post first dose of Docetaxel (T).  I had a good nights sleep last night. Temps all good and took 2 x paracetemols before bed. I think I'll stick to taking paracetemols only before bed if temp ok for the next few days to see how I get on. I still don't know what to expect on T and the last 2 nights, having taking paracetemols, I have only woken up once which is less than when I was on FEC for first 3 rounds of chemo. 

 

I've been feeling fine again today, no signs of nausea and took my last dose of steroids this morning with my porridge.  I went for my usual 1 hour walk/run after breakfast and then did 3rd day injection of white blood cells.  Face and neck still a little flushed looking today and have felt slightly breathless but only when sitting down.  Had a healthy spinnach salad lunch with avocado, toms, cucumber, yellow pepper, a boiled egg, some left over 3 bean salad (in lime and cumin dressing), some grilled asparagus and left over cooked chicken from yesterday.  Enjoyed fresh strawberries and blueberries for pudding. Hoping to get iron levels back up soonest by eating as best I can as I'm sure that is what is causing the breathlessness (aneamia).

 

Only on day 3 post first dose of T so still too early to tell about poss side effects yet to come.  Knees feel a little achey this afternoon but nothing major and I've done 17,000 steps today according to my fit bit so I'm still keeping pretty active.  I've rested on the sofa reading some magazines this afternoon with the patio doors open for fresh air and will take it easy this evening after dinner just watching TV. 

 

So far so good on T and I feel so much better than I did 3 days post each FEC chemo.  It could all change by tomorrow but I'll just keep taking each day as it comes.  Keep smiling and stay positive everyone xx 

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi all

 

Just a quick question, has anyone else felt slightly disorientated and dizzy for about a week after EC?

 

Debi

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Re: April 2019 Chemo Starters ๐Ÿ’–

Pollensa, 

It wouldn't have helped. The line was literally in circles in my arm and therefore blocked. Nowhere close to where it should be. The team even told me they would be using the X-ray and possibly even the bent line for training purposes! lol... At least I could help future nurse practitioners!

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Re: April 2019 Chemo Starters ๐Ÿ’–

Hi have you tried drinking a couple of litres of water before bloods ?