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April 2019 Chemo Starters πŸ’–

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Re: April 2019 Chemo Starters πŸ’–

Hi All

ive just finished 12 weeks of carboplatin/Paclitaxel & will be starting 4 cycles of FEC every 3 weeks on Wednesday this week coming. I’m scared of the FEC. Anyone else started FEC & have any side effects or stories to share. On a positive when I met with my oncologist after my last ultrasound & mammogram my lump has shrunk by over half & is now 1.1 cm which I’m over the moon about. Look forward to hearing from you ladies. We are all doing so well 😊

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Re: April 2019 Chemo Starters πŸ’–

Liz,

 

Thanks for advice, tried water with peach but far too sweet. Barley water sounds good.

 

Pollensa x

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Re: April 2019 Chemo Starters πŸ’–

Hi Pollensa, 

 

Wrlcone to the club, my mouth still isn't right and tadte hadn't returned (day 17)

 

Found barley water tolerable

 

Liz

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Re: April 2019 Chemo Starters πŸ’–

Mornin' all,

 

Beautiful day yesterday but confined to house all day, felt so rough! Had first dose of docataxel on friday. Mouth terribly dry, horrible taste but continued to drink as much as I could ( thanks for advice bramley).

 

Also had to have first self injection. Well that was fun. Don't think I did it correctly but if I can get to my mum's care home today the nurses have promised to supervise and set me on the right path! The nurse on the unit was fine but she could only tell me what to do, couldn't show me.

 

Fortunately (or unfortunately!) I have been taking strong painkillers for arthritis for years so am hoping they will help with any additional pains. Oncologist thinks i might need stronger tablets but ill wait and see.

 

Not sleeping well and getting really fed up with the whole bloomin rigmarole!

 

I've had surgery so radiotherapy 6 weeks or so after end of chemo. Don't mind thought of rads so much, it's the drive to the hospital that bothers me.! Completely different hospital from chemo unit.

 

Hope you all have a lovely day and side effects not too grim! We're getting there ladies!

 

Pollensa x

 

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Re: April 2019 Chemo Starters πŸ’–

Evening!  What a lovely sunny day we have had.  Makes such a difference to body and soul πŸ™‚ 

 

Debi - yes I'm due to have 3 x weeks of radiotherapy (15 sessions I think) but will need to wait 6-8 weeks after surgery to allow scars to heal (think I will start in September).  I will see my Consultant again 3 weeks after surgery to get results of the tests on everything taken out (tumour and lymph nodes).  It's a long journey isn't it when you think I found the lump at the end of January, started my chemo on 20th March and I'll probably finish radiotherapy in October.   You will be so happy to finish chemo and get your surgery in September.  I think I'll be skipping in the hospital to the operating theatre to get the damn thing out of me, they will think I'm high on something, lol....   I'll keep everything crossed for your MRI on Friday and your lump shrinking into a teeny tiny thing.  I know you said you had experienced pain in your lump so hopefully that will have been a really good sign as it was with me.  Hang on in there with the Docetaxel.  With any luck the next one won't be as bad for side effects.  I'm not sure if our bodies get used to the routine of these chemo sessions and find better ways to cope with the side effects.  I have had less side effects on chemo 5 than the previous 4 rounds but I think I've learnt something every time.  The human body is just amazingly resilient really.   I do feel so much better (and less zombie like) not to be taking any drugs (apart from paracetemols) when I finish the steroids and 5 days of injections.  Every drug has side effects and for me I think the side effects of the additional drugs were much worse than the side effects of chemo.  I fully appreciate that I'm probably alone in thinking like that πŸ™‚ 

 

If I could inspire one person out there to exercise their way through chemo that would be amazing.  It has literally changed my life.  I am 51 years old and had been going to the gym 2-3 times per week before diagnosis so had a pretty good fitness base.  I have always enjoyed exercise but the Oncologist wasn't keen on me going to the gym due to the number of germs.  We agreed that walking in the fresh air would be the best form of exercise during chemo (very few germs outside).  I made a pact with myself that I would get out for a walk every day of chemo, even if I could only literally drag myself to the end of the road.  I developed a set route of 7.5km through my local housing estate, across parks and green space. I wanted it to be quiet as I was worried about wearing my wig in public and planned it so that at the half way point I would pass a community centre and supermarket with a toilet, just in case I needed it.  The route took 1.5 hours initially as I walked every morning straight after breakfast in the week before I started chemo.  Then something very bizarre happened, the day after chemo 1, I felt really strong (now I know it was steroids!) and I started jogging between a few lamp posts.  To put it into context I have never ever run in my whole life!  From that point I mixed the jogging with walking and I haven't stopped since. I am now jogging 6km of the 7.5km route and I absolutely love it.  I bought one of those looped sports bottles to make myself drink an extra 500ml of water on the way round.  I literally get dressed into my leggings, t-shirt, trainers and wig first thing every morning, have my breakfast and I'm off out the door by 8.30am (rain or shine) when my youngest has gone to school.  Even on my very worst days of chemo, I was determined to do it and without exception have always felt much better for it afterwards.  It's a sense of achievement, something I could control and I actually feel really proud of myself.  I'm sure it has also helped me sleep well at night as I've had lots of fresh air and exercise every day.  It sets me up for the day, gives me thinking time to process everything, and I make time for myself afterwards by having a nice warm shower, washing and conditioning my scalp and just pampering myself.  My Oncologist and Consultant are both surpised and absolutely delighted that I've managed to run every day of chemo so far.  There is so much research and evidence to shows exercise helps with chemo and I'd like to think I'm living proof of that.   My other incentive is that I really want to be in good shape physically ready for a general anaesthetic and to help with a speedy recovery post surgery.   I've promised my Consultant that I'll only walk for the first couple of weeks post surgery waiting for scars to heal πŸ™‚

 

So yes to anyone reading this, if you can walk every day of chemo, I guarantee you will feel so many benefits both physically and mentally.  Enjoy the rest of the weekend everyone xxx

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Re: April 2019 Chemo Starters πŸ’–

Hi Everyone

 

Bramley what a lovely positive post.  Great news that your chemo is blasting your lump and that you have got a date for surgery, are you having radiotherapy after surgery too?

 

I have been told that i am having 4 docetaxel (3 left to go) so my surgery will be around Sept 10th.  I will get to know if my lump has reduced on Friday 28th after my MRI on 25th πŸ™.

 

Your post as inspired me to get out and do a bit of walking every day.  I have been quite static - which isn't good for my DVT - only staying around the house and garden.  I have also been eating healthy by making fruit salad for snacking and salads for meals.

 

My side effects on docetaxel have been neck and shoulder pain, aching hips and knees, dry mouth and lips, nose bleeds and just a little fatigued but these were mostly in the first week to 10days.

 

Have a lovely weekend, smash through those side effects and stay positive

you are all amazing!

Debi

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Re: April 2019 Chemo Starters πŸ’–

Evening everyone! 

 

Sorry to hear a few of you are feeling negative side effects of Docetaxel (T).  It seems to affect everyone so differently in comparison to the other chemo drugs.  I have found this round, number 5 and 2nd dose of T to be much better than round 4.  I'm sure I read somewhere that sometimes the first round can be the worst of the 3 rounds.  My hands haven't swollen this time although still experiencing tingling/numbness in fingers. The longer course of steroids have definitely helped to prevent hands from reacting.  Suprisingly, I have had no joint/muscle aching or flu symptoms this time.  My only side effects have been a sore throat for which I've gargled with salt water, a bit of an erratic temperature on day 4-5 (took paracetemols overnight) and feeling a bit tired between day 4-7 post chemo. I just kept as active as I could through the fatigue, walked a lot to get plenty of fresh air so I would be tired and sleep well at night. I think the worst thing is the whole taste thing.  Nothing tastes nice or as it should but I've made sure I've eaten really healthily as I know my body really needs it to get through chemo.   You have probably gathered from my posts now that I really don't like to take drugs if I can possibly help it, prefering to try and find a more natural way to help with my symptoms through nutrition, exercise and lifestyle. Obviously I always took the steroids and injected myself for 5 days post chemo as directed by my Oncologist.  

 

I saw my Consultant today for a check on the size of my tumour after chemo round 5.  I hadn't seen her since before I started chemo and I was really scared in case the chemo hadn't been effective. I knew my lump felt different but I really had no idea what was happening.  I had also experienced sharp stabbling like pains in my tumour after every round of chemo (usually in week 2) and just assumed it was the chemo drugs killing the cancer cells.  A quick feel and the ultrasound confirmed that my tumour has reduced dramatically πŸ™‚  She is very happy that the chemo has been effective and the pains I had experienced were probably a very good sign that the chemo was doing it's thing.  My tumour was 3cm before I started chemo.  She couldn't tell me how big it is today as she struggled to differentiate between healthy tissue and what is left of the tumour so I'm hoping it's very small now.  To say I am happy is an understatement; so many emotions of sheer relief after 5 rounds of chemo.  I was terrified at the outset when she suggested chemo before surgery as I just wanted the cancer to be cut out soonest before it spread anywhere.  Now I can see she made the right decision for me and I am so thankful.  My Husband was with me today and we couldn't believe the difference between the 2 appointments with my Consultant.  The first was terrifying to hear the results of the biopsy and the cancer diagnosis.  I cried a lot that day.  Today I felt the most positive I have felt since my initial diagnosis and left walking on air.  I am now booked in for a lumpectomy and sentinal node clearance at the end of July (3 weeks post chemo 6).  A day surgery with no drains.  I am so looking forward to that day to have the cancer finally cut out. 

 

So my message to you all you lovely ladies is that these chemo drugs are so good at what they are designed to do.  Yes they give us rubbish side effects and chemo is a truly gruelling process on our bodies.  But it will be so worth it to be cancer free at the end of this journey and to get our lives back.   Hold the faith everyone and stay positive!  We can and will get through this xx

 

PS - Phet - I note the article you flagged up about omega 3 supplements.  I had also read about the link between omega 3 and making chemo more effective.  Since before starting chemo I've been eating at least 2-3 portions of oily fish per week, usually salmon and tinned sardines in tomato sauce.  I've also been adding a tablespoon of chia seeds to my porridge every morning (can't taste them so I figured it was worth a try), eating a handful of nuts and an avocado every day.  I know I've been getting a pretty good dose of omega 3 throughout chemo in a natural way rather than using supplements. 

 

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Re: April 2019 Chemo Starters πŸ’–

Hi Kelly, 

 

If GP doesn't play nicely, ask the chemo team when you are there. 

Ours issues an extra prescription which we collect from pharmacy on the way out

Xx

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Re: April 2019 Chemo Starters πŸ’–

Hello all

It looks like there are a few of us on docataxel now.  How are u all feeling? Im so rough i feel like ive been hit by a bus.  So so tired, dizzy spells, hot flushes, mouth ulcers, no appetite, feel really irritable too!! 

 

My workplace have organised a charity day for me today - they all have to wear pink and theyre auctioning off items to raise money for  me.  Im so so touched by it all.  I was hoping to pop in and say hello but ive not the energy to get dressed!!

 

Hope all our side effects disappear soon and we can try and enjoy the sunshine.

Take care ladies

Sue xxx

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Re: April 2019 Chemo Starters πŸ’–

Hiya Lizandsarah

Thankyou for your advice. I’m not looking forward to it but hopefully I’ll be prepared. Will see if my Dr can prescribe something before I actually get the symptoms. He may make me wait until I’ve got pain before he gives me anything.

I already suffer with constipation thanks to IBS, so no doubt it’ll get worse. I take Senna every night, so will continue with that.

x

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Re: April 2019 Chemo Starters πŸ’–

Hi Phet, 

Such a shame they didn't check your levels earlier, I bet you are a tad irritated by them!

 

They did mine at the start of chemo and they were very low, but I've worked nights for three years so I don't know why they were so surprised!

Had seven weeks of supplements so now they are well over levels needed. 

 

I did have to ask them to recheck them though, when supplements finished as they just assume they will be better, so keep an eye n that. Now I just have an over the counter supplement instead to maintain. 

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Re: April 2019 Chemo Starters πŸ’–

Hi Kelly

Everything kicked in 48 hours afterwards, 

Not wanting to terrify you, but get some decent pain relief and Difflamouthwash off your doctor in advance. I have tramadol and it didn't kick it! Joint pain was bad, everytime I moved and other joint hurt! Muscle pain as well.

Terrible constipation despite a cupboard full of laxatives, ill be starting to take them regularly five days before cycle is due next week  

I  completely exhausted and still am after two weeks, I sailed through fec with no real issues and was out walking and cycling two weeks ago easily. Now I'm knackered walking through the kitchen!

I have had neuropathy signs, though nglin in hands and feet and burning sensation in feet. 

Lost all sense of taste, so appetite poor.

Mouth feels 'slimy' all the time, only. Palatable drink has been barley water. Everything tastes odd or off.

Sore throat, hence the mouthwash (chemo unit have it to me right at the beginning). 

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Re: April 2019 Chemo Starters πŸ’–

Number 8 this morning hopefully - Paclitaxel supposedly low dose has given me worst week yet utterly exhausted sore throats runny nose . Went for bloods yesterday was convinced would get phone call . Just want it all finished now throughly fed-up . I suppose the effect is cumulative and after three FEC and four T my body has been through mill . Sympathies to all roll on July 20'

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Re: April 2019 Chemo Starters πŸ’–

Hi all, 

 

My solidarity with everyone suffering from Docetaxel side effects. I had my second Docetaxel on Tuesday and the side effects have started to hit this evening. I find it discombobulating with this one that there is the delay before the effects kick in - this morning I felt absolutely fine, felt guilty that my partner insisted on bringing me breakfast in bed which I munched away on happily while directing him where to put away the laundry. And now tonight I feel like I've been hit by a bus and know it is only going to get worse. Oh well, one more down. 

 

I'm trying a routine this time of one codeine every three hours until the pain gets too bad and then I'll start taking two; I've been taking half a sachet of Laxido in the morning and another in the evening to try to pre-empt any 'blocked up' issues, and I'm also taking Omeprazol every day for heartburn which I suffered quite badly from last time. I've also added Loratidine and Melatonin to my regime - the first because it's meant to help with bone pain and has anti-cancer properties, and the second because it helps with sleep and has anti-cancer properties. I'm thinking of adding Omega 3 supplements after seeing this https://www.ncbi.nlm.nih.gov/pubmed/30912414/?fbclid=IwAR1bmr6WdnpT93RQKIEFXWS7ER_IgXlpyRYTp_RTKRI6O... But I don't add anything to my drug regime without asking the oncology pharmacist first, to check it doesn't interact with the chemo, so I'll call the hospital tomorrow and check if Omega 3 supplements are ok. 

 

My other treatment news is that I was meant to have a zoledronic acid infusion with my last chemo (starting the bisphosphonate treatment I'll then keep having for the next five years along with an Aromatase Inhibitor) but I couldn't because my Vitamin D was low. So I have to supplement that as well. To be honest I was irritated, as they could have tested my Vitamin D three weeks ago and got me on supplements earlier so I could have the infusion. Sometimes it feels a bit like they're flying by the seat of their pants, but hopefully that's just the outside impression

 

Hugs to all suffering side effects

 

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Re: April 2019 Chemo Starters πŸ’–

Hiya Lizandsarah

sorry to hear you are still suffering. I’m hoping to start my 1st Docetaxel next week. Was meant to have it 2 weeks ago, but it got postponed due to needing a heart scan n ECG. Seems EC put my ticker under a bit of pressure 

Would you mind if I asked what your side effects have been?

thanks Kelly

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Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Two weeks on from first docetaxol and still got side effects. 

 

My bloods fooled me as well! Best set ever, even better than before starting chemo, and I've still been having hit with a chest infection to add to the page long list of side effects..

 

Going stir crazy in the house

 

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Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Hope you are all doing ok, not heard from anyone for a couple of days.  

 

I have suffered bad headache for the last 3 days, last night i went to bed at 7.30pm and it had gone within an hour!  This morning however it is back.

 

Rainy here in Yorkshire today, although it looks like it may brighten up.  I am just going to jump in the bath and have a relaxing soak.

 

Take care 

Debi 

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Re: April 2019 Chemo Starters πŸ’–

Hi

 

Consultant prescribed me Lansoprazole 30mg 1 every 24 hours.  You should try to get them prescribed from your oncology team. I also suffered from neck and jaw pain on the first 2-4 days after having my docetaxol, today its not too bad just a bit sore to touch at the back.

Went for a walk today to get some fresh air and to stretch my legs, it feels like i have been prisoner these last couple of days with the rainy weather - only managing to get out for a bit when rain stopped.

My hair thinned while i was on EC even with cold cap, when i started my docetaxol (Tuesday 11th ) i decided i wasn't going to use it any more.  I like my wig and i am slowly getting more used to it.

 

Good to hear from everyone, 

Take care

Debi

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Re: April 2019 Chemo Starters πŸ’–

That’s really good to know, thank you. I’m going to see if I can get some prescribed before my next chemo on Wednesday. I have 20mg from the pharmacy but if I’m allowed to double up around steroids then that’ll be good. Plus it’s so expensive! Β£7.50 for 7 tablets! 

 

I’m hoping I don’t get nausea on the FEC. That’s the worst side effect I think. I feel like I can’t focus on anything else when I’m feeling sick. Plus I want to eat healthy and nausea unfortunately doesn’t make me want to eat veg! 

I did fear that I’d lose my hair on FEC. I’m cold capping still and managing to keep a fair amount. I can tell it’s thinned a lot but others say they cant. But I spoke to the wig lady at the hospital and she’s ordered me a couple to try so if/when I do lose my hair once I start FEC then I’ll have one ready. 

 

Does anyone else get pains around the jaw line and neck? It gets so painful and sensitive to touch! 

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Re: April 2019 Chemo Starters πŸ’–

Hi Christine, 

I had horrendous heartburn on the first found of fec, it's a common side effect from steroids.

 

My GP put me on 20mg omeprazole daily and after discussion with chemo unit it increases on the days I took steroids to 40mg. The steroid level was dropped initially  and I didn't take any steroids with the last fec at all. Was told to take them with first dose of docetaxol, but I've had a little heartburn, so I'll be looking to reduce them when I see consultant.

 

Otherwise fec was straightforward, more tired for a couple of days, hair loss despite cold cap and no nausea. 

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Re: April 2019 Chemo Starters πŸ’–

Hi Debi,

I had such awful reflux/heartburn yesterday. Was so painful and did not expect it at all. I was going to ask on here if anyone had been suffering and what they are taking. What has your consultant prescribed you? I went to the pharmacy (a big big struggle as I was feeling rotten!) and they gave me omeprazole. I also had gavsicon before going to bed. He said it was all ok to take with my other meds but I just feel like I’m taking so much stuff now. He thinks the reflux was from the steroids but I always make sure I take it with food. Anyone else suffering from reflux? 

 

The start of this cycle hasn’t been a nice one but thankfully it’s the last one before I start FEC. From reading all the posts, everyone seems to have such different SE’s with FEC. I’m quite nervous about starting it, makes me feel sick just thinking about it! But I feel prepared, no one said fighting this **bleep**ty cancer would be easy!! 

 

Hope you all can enjoy some of Father’s Day! 

X

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Re: April 2019 Chemo Starters πŸ’–

Good morning everyone

 

Feeling better emotionally today (so far ).  Woke up in night with terrible acid/heartburn, luckily consultant is on the ball and had already gave me something to take for it. Still ache a bit but it is copeable. 

Hope everyone is having a decent weekend despite the wet weather. 

 

Is everyone on this April starter board from the UK?

 

I don't know about you ladies but i keep popping onto the other boards to ask questions and find out symptoms and side effects for upcoming treatment.  Its so good that we have this forum where we can say whats bothering us and to get replies so we know we aren't being paranoid.

 

You are all great and we will come out of this together.

Take Care 

Debi

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Re: April 2019 Chemo Starters πŸ’–

Afternoon!

 

Pollensa - good to hear from you again.  Sorry to hear about your Mum but hopefully she will make a good recovery from her operation back in the familiar surroundings of her care home.   Try to keep an open mind on the Docetaxol, I would still take it over FEC any day of the week!  Ref dry lips and mouth, I find regular old vaseline works best on my lips. For some reason I find lipsalves/chapsticks don't work for me and make my lips dryer, no idea why?  Sugar free chewing gum works well for dry mouth during the day as it makes you produce more saliva.  If I wake up in the night with dry mouth, I just have a sip of water. 

 

Sue - let's hope those injections are sorting out your clot and dissolving it well.  Fingers crossed for the Docetaxel next week, that the side effects are less than the EC and the nausea is no more!  Also hope your cold is on its way out as you are building up your immunity in your 3rd week.  Keep eating fruit and veg to get a ton of vitamins into your system πŸ™‚ 

 

Debi - sorry to hear you are having a tough time 😞  Hopefully you have started to turn a corner now in this chemo cycle?  Another chemo done though and a step closer to the end of treatment.  Good news that you have a rough idea of the date of your surgery now in September.  That will give you a focus to work towards to hopefully get through chemo without any delays.  This rainy weather isn't helping at all is it.  I so miss sitting out in my garden at the moment.  We need the sun to return and soon to boost our vitamin D levels and make us feel better πŸ™‚ x

 

Lizandsarah - hopefully you have also turned a corner now and on the way back up for the next cycle?  It all sounds very organised for you to have met your radiotherapy consultant and have an idea of start date in August.   Good news that you will be able to make weekend plans to get away in late September to see your friend.

 

Phet - I can completely relate to your anxiety about the size of your tumour.  If you are having surgery after chemo it's really difficult not to feel it daily to see if you can notice shrinkage or changes just to reassure yourself that the chemo is doing its job.  The mind plays tricks and then you have no idea what's happening; you just know it feels different. I'm glad you had a MRI to confirm that it has shrunk, yay!  Hopefuly the Docetaxel will shrink it further and finish it off!  Whatever size it shrinks to it will be taken out and that's what I'm hanging on to.  Sounds like your therapy sessions are helping and talking to your American friend has given you something positive to think about coming out the other side of this journey and returning to your professional life.   Like you say we can get through this and come out stronger.  Ref the "tax-trots", I'm finding a way through chemo to manage mine pretty well by taking dairy out of my diet just for the first 2 weeks post chemo.  I use a plant based milk instead e.g. almond or oat on my porridge and in tea/coffee.  Chemo literally takes everything out of our digestive systems (good and bad).  A few days before the next chemo cycle I eat Kefir (love the new Yeo Valley one) to try and put some good bacteria back in my gut to build up immunity.  I checked it with Oncologist first and he said it was absolutely fine but it may cause diarrhoea.  This actually works in my favour as if I take it a few days before treatment and a couple of days after (or until things change), I don't get constipation in the first few days.  Since the first round of chemo I haven't had to take any medication for either symptom so I'm sticking with it for the final round of chemo!

 

I'm doing fine today, day 3 post chemo number 5 on Docetaxel and still on the steroids. I have an extra 2 days worth of steroids to take this round to try and prevent my hands from swelling.  They are tingling a bit today but no signs of swelling as yet.  Tomorrow I will know more as that's when they started swelling last time and I started getting flu type symptoms.  I've been keeping busy today going out on my usual morning run/walk and catching up on some ironing and housework whilst I'm feeling ok.  I also made some banana breakfast muffins which are very healthy and nutritious with no refined sugars, only good fats and still feel a treat. Maybe I'll post the recipe later if anyone would like to try them? 

 

Stay strong ladies and enjoy the rest of the weekend xxx

 

 

 

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Re: April 2019 Chemo Starters πŸ’–

Sorry I've not posted for a while. My 91 year old mum had a emergency op which certainly took my mind off my troubles for a few days! Not sensible visiting her in hospital  during my middle week but what can you do? Anyway she's back in the care home now and doing very well. Mum has dementia and her memory is pretty much gone but she never forgets what's happening to me.....

 

The side effects from docataxel certainly seem to affect everyone in different ways.i start the dreaded d next week, can't wait! Has anyone else had really dry mouth and lips from FEC, lip salve is my new best friend.

 

A few months ago I knew very little about bc and the treatments used . Now the medical terms, names of drugs and treatment schedules are all too familiar. While I'm grateful I'm being treated and the medical staff seem to know what they're doing, the whole blessed thing is the absolute worst!

 

Away to watch more trashy tv.....

 

Pollensa x

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Re: April 2019 Chemo Starters πŸ’–

Think i clicked on "post" too early !!!

 

I met my oncologist today.  I asked if they were going to rescan my arm with the PICC line and clot.  She said they will only scan me again if i have any new swelling or dizzy spells/sickness that i had before, and they will just keep me on the injections to dissolve the clot.  Im really hoping they are right and these injections do dissolve it however ive only been on them a week and my tummy is covered in purple bruises !! 

 

I start on docetaxel next week.  The oncologist said depending on my side effects they may change me to paclitaxel as ive had constant nausea on the EC.  But the paclitaxel is weekly rather than 3 weekly on the docataxel - think i would rather have the dose every 3 weeks rather than every week!!

 

And ive now got a cold and cough to top it all off!!!

 

Take care ladies.  Hope u all have a relaxing weekend 

Sue xxx

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Re: April 2019 Chemo Starters πŸ’–

Debi - sorry to hear you have been emotional today.  I think we all feel that at some point, what we are all putting our bodies through is so tough mentally as well as physically.  Is it the docataxel causing your shoulder/neck/back pain?  Sending u virtual hugs xxx

 

 

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Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Well i am well and truly aching! The back of my head, neck and shoulders hurt most. My BC nurse rang today to see how i was getting on, she told me my surgery would be around 4 weeks after last chemo - so that will be around Sept 10th.  Been a bit low today too, kept bursting into tears for no reason.  Tried to get out in garden when the rain stopped just for some fresh air as i have felt cooped up for the past few days either having my treatment or trying to recover from it.

Wishing you all a good weekend

Debi πŸ’–

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Re: April 2019 Chemo Starters πŸ’–

Hi folks,

 

Still, got the aches and now a sore throat! Am still wiped out but did get to meet my radiotherapy consultant today.

 

She is absolutely lovely, I will be getting radiotherapy to nodes and breast as well as a weeks boost, so four weeks in total.

Completely understanding about not having permanent tattoos, they will use permanent marker instead. So all being well and chemo finishes on time I will be starting radio around 12th August..

 

Feels like a huge leap forward, and I'll still be able to have my weekend away late September to visit a friend in France. 

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Re: April 2019 Chemo Starters πŸ’–

Hi everyone, 

 

Sorry I've not posted for a while, have been hunkering down trying to recover from the dreaded D! 

 

I'm glad to hear everyone is making their way through the chemo journey. Lizandsarah, I sympathize with your oncologist problems - I like mine quite a lot but a few weeks ago I really was in a bad way with anxiety about my tumor not shrinking, and I found her a bit blasΓ© and unconcerned about this (she initially suggested we do a scan to check, then changed her mind, and didn't seem moveable when I expressed deep stress over the whole situation). But luckily, thanks to repeated pushing from me via my BCN, she relented eventually and I got my scan. So last week I had an MRI which assess that after 3 EC and 1 Docetaxel my lump has shrunk from 4.2 to 3.3 cms. It's not huge but it was a massive relief to me as I was convinced it was growing! In general, I have found my lump much softer and the edges less defined on the Docetaxel. Now I'm hoping that the next two will melt it away! 

 

Other than that, I've been ok - on the big question of which is worse, EC or Docetaxel, I fall on the side of EC being worse having had both - like Bramley I suffered from nausea and was totally wiped out on the EC (couldn't even sit up in bed for days) whereas, while the Docetaxel is a pain and I was certainly bedridden for part of it, I could at least sit up and nibble some chocolate and watch Netflix. None of it is fun, but I've found that a bit more manageable. That said, on Docetaxel I had more varied and inconsistent symptoms which were annoying - most annoying was how to manage my digestive system! What with mainlining codeine for five days (causing a blocked-up feeling) and the 'Tax trots' my gut did not know what to do and it was pretty uncomfortable. My oncologist has suggested for next time I start taking small doses of Laxido powder from the very beginning of the cycle, rather than waiting until I actually need it, to try to keep regular. We'll see

 

Otherwise, I'm also pleased to report than mentally I'm feeling a bit better in the past week. I think a lot of it is the fact that I can finally feel my lump shrinking - when I thought it was growing I was not in a good place! But I've also been benefiting from therapy - in fact, about to go and see my therapist this afternoon. That has helped a lot. Then yesterday I had a visit from an American friend and her husband - she had breast cancer too last year, at 34 (I'm 35) - so it was really helpful to talk to her more about it. She does the same job as me (that's how we're friends - we're both academics) so it was also really useful to discuss how she's managed the professional challenges of being 'out of action' for months having treatment, given she's a year ahead of me on things. 

 

The great thing to report from her is that she's doing great, and it made me feel hope for the future. She looks fantastic, has a lovely curly, cropped haircut that suits her well, is exercising lots and even managed to get a new job at a fancier university only 5 months after she finished her active treatment. It left me feeling optimistic - we can not only survive but also we can thrive after all this!

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Re: April 2019 Chemo Starters πŸ’–

Lizandsarah - sorry to hear that the Docetaxel has hit you so hard in comparison to the FEC rounds.   Just goes to show how different each of our journeys through chemo can be.  I remember my breast cancer nurse telling me at the start how some women find the FEC cycle more difficult and some find the Docetaxel harder.  I guess it's which side effects are worse for each person.  I didn't think anything could be worse than feeling nauseous every waking minute for 9 weeks of FEC. Definitely agree on the taste thing though with Docetaxel.  Everything does taste of cardboard πŸ™‚ I've tried so many new foods to try and find things that taste of anything like they should. I'm definitely craving more savoury than sweet through chemo in general which is just as well.  I hope you feel better in time for your music exam on Saturday and you get on better with your new Oncologist too. It makes the world of difference if you feel you are working together on this surreal and scary journey. 

 

Debi - glad you are doing well so far and not suffering with too many side effects this round.  You obviously needed that long sleep this morning!  I was really happy to manage 5-6 hours sleep last night even on chemo day and full of steroids!  I've kept pretty active today to wear myself out and kept drinking as much water as possible.  Can feel throat is getting a bit sore tonight so will take a couple of paracetemols tonight before bed. 

 

Hope everyone else is ok xxx

 

 

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Re: April 2019 Chemo Starters πŸ’–

Hi everyone, 

 

Haven't posted much as home life has been a bit busy. 

 

Started docetaxol last week, considering I had minimal side effects with the fec, this has hit me hard. Started with neutrophil of 6.9, higher than when I started chemo which is great as it gives me a good start for this cycle.

 

Went out with hubby in Saturday night for a meal as daughter was at guide camp. Glad we took advantage, Sunday morning hit with horrendous joint and muscle pain, and have lost all sense of taste, so not eating much as it all tastes like cardboard, even loaded a sandwich with pickle and couldn't taste anything. Not sleeping for more than 40 minutes at a time as everytime I moved it hurt and woke me! Got burning and tingling in feet as well. Lucky me!!!  Lot more tired as well so more emotional, always a sign I'm in need of sleep, as I am reliably informed by my best friend. Had some mild swelling in my fingers as well, but that's resolved. Still sore but it's getting better. 

 

Waiting to see a new oncologist as old one has been rude and confrontational when asked questions and didn't act on a treatment decision for 7 weeks, so have refused to see her again. Hopefully they will reduce the dose next time. 

 

Haven't been out since Saturday, highlight of the day is the nurse arriving to do injections! Going out tonight to my choir, friends there give me a lift and it's good for my mood to go, no matter how knackered I am!  Still it's given me time to revise for a music exam I'm doing on Saturday, as brain feeling wooly.

 

My daughter kindly asked me if the drugs had made me stupid, had to laugh, but I think yes!!! 

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Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Got home from my H and P around 6pm last night.  Had my injection for the white blood cells and so far everything ok.  Was a little cold and tired this morning so went back to bed and slept until 1.15pm!  No aches as yet but i am prepared for them with paracetamol and co-codamol.  No sickness or dizzy/light headedness this time - which is a bonus as that makes me feel terrible.

Lisandsarah, Niknak5, Phet7178, Oots and Pollensa not heard from you for a while - hope you are all ok and not suffering too many side effects.

Take care 

Debi πŸ’–

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Re: April 2019 Chemo Starters πŸ’–

Evening!

 

Kelly and Christine, I hope you get positive results on your heart checks and it will not delay your chemo too much. 

 

Debi - glad your first dose of Docetaxel went well without any issues. Hopefully today went as well with the Herceptin and Pertuzumab? 

 

I had chemo 5 today of Docetaxel.  Bloods really good yesterday (neutrophils at 5.8) and chemo fine today.  I have got a longer course of steroids (8 days worth in total) to take this time to hopefully stop extreme reaction with hands I experienced last time.  Oncologist said he could reduce my chemo dose if I wanted but I said I didn't want him to at this stage.  I really want the chemo to nuke my tumour ready for surgery.  So we will see what happens this time.  I'm looking a little flushed on my face and neck from the steroids but that is normal for me.  I still can't believe I'm not nauseous on this drug compared to the FEC. It feels so different and much better for me although I know the side effects are delayed on docetaxel.  The only medication I'm on now between chemos is the steroids initially and 5 days of injections to make more white blood cells.  Oh and paracetemols at night when required in first week.  Feels quite liberating to reduce instead of increase drugs!

 

Sending positive thoughts to everyone. xx

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Re: April 2019 Chemo Starters πŸ’–

Hiya Christine

 

yeah, hopefully the Ecg was done wrong for you and they will discover you’ve not had a heart attack and all is ok. The palpitations I can cope with, but the pain/tightness in my chest left me pretty much housebound and sitting still for around a week. At the worst, each time I went to get up, it felt like my heart was pounding out of my chest. I was on all fours getting up the stairs at one point. Luckily that has eased off now and it’s just palpitations. Consultant stated that EC can have that effect, but he just wants to make sure all is ok before I move onto Docetaxel, which apparently isn’t as bad on heart, but does still put body under a lot of stress.

Luckily I’ve had my mastectomy so any slight delay in my chemo should be ok. x

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Re: April 2019 Chemo Starters πŸ’–

Hiya Debi

 

glad to hear all is ok so far with you. My Consultant told me that EC has more of an effect on my heart than Docetaxel, but he just wants to make sure all is ok before we progress. Luckily I’ve already had my mastectomy so a slight delay in my chemo should be ok. x

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Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

I was having heart and chest problems before my diagnosis, i had ECG and ultrasound which showed up an ectopic beat. They weren't concerned when i first started EC, but before my docetaxel started i had a heart  MRI and ECG. The report hadn't got back to my consultant before i started Docetaxel yesterday and so far have been fine. Hopefully he will have seen the report before i start Herceptin and Pertuzumab today!

Hope everything goes well, and your chemo won't be delayed too long, although it is best that they are doing thorough checks.

Take care 

Debi

 

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Re: April 2019 Chemo Starters πŸ’–

Hi kelly,

i suffered with palpitations before chemo but since starting it has got worse. I got referred to a cardio-oncologist, who I saw last week for an echo and ecg but been called back in today for a repeat ECG. My echo showed my function and heart was fine but my electrical activity showed up that I have had a heart attack....I’m 28 and pretty sure I would know if I’ve had one! So they think the person doing it might have put the leads in the wrong place. Anyway, I start FEC in three weeks so hopefully it won’t stop me from getting my Chemo. They said I can continue with taxol and carboplatin now which is a good sign.

They do seem to give out the full MOT, which is good! 

It’s good that they are being so thorough but it is annoying that Chemo is delayed for you. Hopefully everything is fine and you can resume it again soon. 

Christine x

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Re: April 2019 Chemo Starters πŸ’–

Evening ladies

 

well my chemo has been cancelled again today. Was meant to have it last week, but it got postponed in order for me to have an echocardiogram and a 24hr ECG on my heart. Been suffering with chest pain and palpitations. Results show I have an irregular heart rhythm. Oncologist wants me to be referred to a cardiologist just to get it checked out, before further chemo. He said the pain & palpitations could be side effect of the EC, but wants to make sure I don’t have any underlying heart condition. Seems like he’s giving me a full MOT, which is reassuring.

has anyone else suffered with this since chemo? x

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Re: April 2019 Chemo Starters πŸ’–

Christine - good news that you have your picc line fitted and it's much easier now for chemo and blood tests.  Hope all bloods are good tomorrow.  Hope the cold cap works for you on the FEC cycles.  Keep the faith!  I was on FEC for the first 3 cycles but decided not to use a cold cap.  The nurses told me I would almost certainly lose my hair around day 20-21 (around chemo cycle 2) without the cold cap.  They were spot on as my hair was coming out in handfuls on day 20 so I decided to shave it off after chemo on day 21. 

 

Debi - I've just checked my steroids for cycle 5 and yes I'm on 4 x 2mg of Dexamethasone tablets twice a day from day before chemo, day of chemo and for 3 days afterwards (morning and lunchtime).  Then 4 x 2mg only in morning for 2 days after that.  So by my calculations I'll be taking 16mg a day for 5 days (starting day before chemo) and then 8mg for 2 days.  That makes a week on steroids!  Much more than FEC and even on the last round (round 4) on docetaxel for me.  I wonder if that's why I had such an extreme reaction on my hands for round 4 as I was only prescribed 2 x steroid tablets (8mg total) for 3 days afterwards and hands started swelling on day 4.  Must ask Oncologist tomorrow!

 

I had blood tests today so hopefully I'll get go ahead from Oncologist tomorrow. Feeling pretty well in myself and ready for round 5!  Can't wait to get through chemo now. 

 

It's good to have a few little jobs lined up for week after chemo depending on how you feel  It sounds like you are going to be busy Debi. Weather looks pretty wet this week so I'm hoping to sort through our paperwork filing cabinet that is so full it's bursting at the seams!  Never had chance to do it in recent years when working full-time. 

 

Hope everyone is doing ok xx

 

 

 

 

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Re: April 2019 Chemo Starters πŸ’–

Hi All,

 

Debi2 my PICC line went in well thank you. They really struggled to find a vein with the ultrasound though and can now understand why I had such problems with cannulation and pain along the veins. It was so much less stressful going for chemo though, no pain, no hassle! Since, the line has been uncomfortable but it’s far better than 4 cannulation a week and two attempts at bloods! 

 

I’ve got my clinic appointment tomorrow and bloods. Bit worried they are going to be all over the place again. I organised a hen do and went to it this weekend. Friday I felt really tired and achy but the Saturday was fine. I’ve spent all day on the sofa today and tried to drink my body weight in water. I didn’t drink any alcohol but last time I spent the weekend away before bloods, my liver function tests were elevated and my red cells were low so 🀞🏼🀞🏼🀞🏼🀞🏼  

 

Also going to go to the Macmillan info centre to see if I can get myself a wig. Someone my mum knows has just finished the same regime as me, she didn’t lose any hair without cold capping in this first regime of drugs but lost it all during FEC. My hair has thinned a lot with carboplatin + paclitaxel whilst cold capping so I have the fear it’s all going to go in 4 weeks once I start. 

 

Hope everyone having chemo this week doesn’t have to bad SE. Push through girls! The end isn’t too far away! 

πŸ’–

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Re: April 2019 Chemo Starters πŸ’–

Hi

 

Just been for bloods pre chemo for tomorrow.  My appointment is 10 am , Wed appointment as been changed to 2pm.  I have taken my steroids for today, some more in morning the head off to hospital.  

What dose of steroids do you have?  I have taken 8mg in morning then 8mg in afternoon, it does seem like a lot in comparison to the steroid dose after EC but i double checked and this is what they give at my hospital.

Was going to go in garden after bloods but heavens opened and its been raining ever since.

I have sorted myself some bed bound little jobs - sewing, writing to my penpals and craft drawers to sort.  If i am not bed bound with side effects i unfortunately have plenty of household jobs to keep me going.

Audio books are downloaded and bag is packed with goodies ready for hospital so i think i am sorted.

 

Take care

Debi

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Re: April 2019 Chemo Starters πŸ’–

Hi Debi

 

Fingers crossed you don't have any reactions during the chemo and your body copes with both sets of drugs.  Blimey 5 hours is a long time on one day but best to be safe.  Take plenty of snacks and magazines πŸ™‚  My chemo is at 8.30am on Weds.  Really happy I have such an early appointment as less likely to be delayed and I'll have the steroids early in the day so hopefully Ill get some sleep on Weds night.  Let us know how it all goes.

 

Good idea ref the avocado oil for your nails.  I've also read somewhere about vitamin E oil being good to massage into nails and cuticles to keep them supple and conditioned through chemo. Where did you get the avocado oil?  Make sure you keep your rings off for a week post chemo as the swelling in my fingers and hands didn't start until day 4 (Sunday).  The side effects for docetaxel seem to be delayed for a few days.  

 

Hopefully my Oncologist will have a plan when I see him on Tuesday to try and prevent my fingers and hands swelling like the last time.  If it happens again at least I'll be prepared I guess.

 

Hope everyone else is ok and managed to enjoy some sunshine today xxx

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Re: April 2019 Chemo Starters πŸ’–

Hi Bramley

I will have the first ones over 2 days then the rest will be on the same day.  I think i have to stay in for 5 hours after the Herceptin and Pertuzumab to check i don't have a reaction to them.  I must say i am not really looking forward to it. 

I have got some Avocado oil for my nails.  Thanks for the tip about rings, i will remember to take mine off prior to treatment.  

What time is your treatment on Wed? i will try and chat to you on here when i am there for the 5 hour stint (although i am not too good on my phone!).

Best wishes to everyone having treatment this week and those of you who don't have treatment this week i hope you are not having too many side effects.

Take care 

DebiπŸ’–

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Re: April 2019 Chemo Starters πŸ’–

Hi Debi

 

Bit of a pain you didn't get your heart MRI results but good news that you can go ahead with Docetaxel, Herceptin and Pertuzumab.  Will you need to have it over 2 days for all 4 remaining rounds or is it just for the first one to make sure everything is ok?  The lady sat next to me last time in Oncology had the same 3 drugs.   They were doing one lot first and then the other afterwards so she managed to have all 3 on the same day although I think she was there quite a long time.  I think she was on chemo number 5 so she probably did it over 2 days like you on chemo 4.

 

A difficult decision to stop using the cold cap but it sounds like it's the right decision for you.  I never tried the cold cap so my hair was coming out in handfuls just before chemo 2.  I actually found it quite liberating to take control and get my hair shaved off.  I had a good cry when I saw myself bald, but had a lovely organic shampoo and conditioner lined up and have washed/conditioned my scalp every day since.  I think the hair starts to grow back around chemo 5 for a lot of women so fingers crossed that happens.  Drawing eyebrows on is quite an art so it's good your niece will be able to teach you how.  I learnt how to do it at the Look Good Feel Better session at our local Maggies.  I didn't have a clue before πŸ™‚

 

Don't forget to put some nail varnish on your finger and toe nails before you have Docetaxel as it can affect your nails.  I asked my Oncologist if it should be a dark nail varnish and he said it didn't make a difference what colour it was, clear nail varnish would work just as well to protect the nails.  I had some protective, hardening clear nail varnish in the cupboard so that's what I used on my finger nails and so far they seem to be fine and don't look any different.  I used a coloured nail varnish on my toe nails as I usually do in the summer months.  I'll repaint both sets before chemo 5 on Weds.  Also take off any rings just in case you have any swelling in your fingers.  My fingers have eventually returned to normal size after quite an extreme reaction after chemo 4.  Thankfully I managed to get my engagement and wedding ring off last night using a lot of washing up liquid! 

 

Weather supposed to be better tomorrow but looking unsettled again next week.   Enjoy the rest of the weekend all xx

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Re: April 2019 Chemo Starters πŸ’–

Hi everyone

 

Christine18 how did you get on having your PICC line fitted? hope it went well for you.x

 

I went to see my consultant yesterday, unfortunately he hadn't got the report from my MRI through!  He said that i would still be ok to start the Docetaxel, Herceptin and Pertuzumab - which i am having over 2 days.- on Tuesday and Wednesday.  I am having these every 3 week like the EC but i will be having 4 lots so my last chemo will be 13th August then surgery 3weeks after that.

 

I still have some hair albeit thin and grey roots, i wear my wig when i go out and a cap when i am in the house.  I am not sure what i would look like bald but i know this is to come because i am not going to cold cap anymore - it was too painful last time and i didn't feel very well.  My eyebrows are thinning now too so my lovely niece (she's a beautician) is going to show me how to draw them on.

 

Weather here is rubbish today but we went to garden centre to get some plants so i can do a bit of gardening next week if i feel up to it.  I find it best if i have something to do otherwise i am afraid i would be quite lazy.  

 

Wishing you all well

DebiπŸ’–

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Re: April 2019 Chemo Starters πŸ’–

Hi Sue

 

We are on the same chemo regime then :). I'm sure you will notice a huge difference on Docetaxel as you have been suffering so badly with nausea for rounds 1-3.   I'm having chemo number 5 next Weds (12 June), bloods willing ofcourse.  I haven't had my surgery yet.  My consultant recommended chemo first to shrink lump, followed by surgery (lumpectomy and partial node clearance).  My last chemo (number 6) is due on 3rd July with surgery 3-4 weeks after then so hopefully by end of July or beginning of August.  I'll then have a 6-8 week wait after surgery whilst scars heal before 3 x weeks of radiotherapy.  Then finally hormone therapy for years I'm guessing!  One step at a time hey.

 

I admire that you are happy to go out in public bald. I've not been that brave, I won't even go out of my front door without my wig on.  I even wear it on my walk/run every morning πŸ™‚ 

 

Have a good weekend everyone xx

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Re: April 2019 Chemo Starters πŸ’–

Hello Bramley

Yes you are correct - i move onto docetaxel for rounds 4, 5 & 6.  The nurse i saw at my last chemo also told me i wont suffer any nausea so i hope u are both right!! Im really pleased to hear that u havent had any nausea since starting docetaxel.  I have been on the Emend tablets for 2 days post each chemo and they didnt work either!!  How far are u into your treatment? Have u had your op yet? 

 

Today i met up with my work colleagues for lunch.  Ive not seen them for 7 weeks and they were all so lovely and said i looked well.  I cant believe how many people say i suit being bald!! Even one of the doctors said i look good the other day!! Shame im not 20 years younger πŸ˜‚πŸ˜‚

 

Debi let us know how you got on with your test results today

Take care ladies

Sue xxx

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Re: April 2019 Chemo Starters πŸ’–

Hi Sue

 

Glad you are back home.  Ref the nausea, I also suffered for all 9 weeks on FEC with pretty bad nausea.  Like you I wasn't physically sick but just felt it the whole time, like morning sickness for me.  I was prescribed 3 different types of anti-sickness meds and eventually ended up on the gold star prescription of Emend tablets.  I think they made the symptoms slightly less but unfortunately still didn't get rid of the nausea. 

 

If I remember right you will be moving onto the second half of chemo on the Docetaxel (T) for round 4?  I'm really happy to say is that I have not suffered with any nausea since round 4 of Docetaxel.  I cannot believe the difference it has made to not feel nauseous 24/7.   The side effects for Docetaxel appear to be  different and slightly delayed (more like flu symptoms) on day 4-6 past chemo.  The practice nurse in Oncology was absolutely right when she told me that my nausea should disappear on Docetaxel.  I really hope it will be the same for you and you will get some relief from the nausea after round 4 on Docetaxel.  So hang in there and go into round 4 with an open mind.  For me personally the side effects on Docetaxel have not been nearly as bad as the constant nausea I experienced on FEC.  Keeping everything crossed for you xx

 

Debi - hope MRI results for your heart scan were all ok xx

 

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Re: April 2019 Chemo Starters πŸ’–


@Runningsue42 wrote:

Hi Debi

Yes ive had 3 different types of anti sick tabs, and they work in the fact im not sick but none of the tablets clear my nausea.  

Good luck with your results today

Take care ladies

Sue xxx



Hiya all

 

I read a while back a comment about a company in America that is recommended for CBD oil. Apparently if you tell them what type of cancer you have and what treatment, they advise on what CBD oil to get.

Does anybody have the company details please?

thanks 

 
 
 
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Re: April 2019 Chemo Starters πŸ’–

Hi Debi

Yes ive had 3 different types of anti sick tabs, and they work in the fact im not sick but none of the tablets clear my nausea.  

Good luck with your results today

Take care ladies

Sue xxx