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Anyone starting Chemo in December 2018?

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Re: Anyone starting Chemo in December 2018?

Hi Sandraindurham,

 

Re the F-question (one that troubled me for a long time, too): as far as I know, oncologists (in the UK and in other countries) (have started to) leave off the F from FEC partly because some consider this particular drug no longer as adding that much to the overall efficacy of chemo treatment (especially in relation to side effects) but also (and that may be the more important factor in many cases) because there is a need to reduce overall toxicity when a certain numer of cycles of EC (or similar combinations) is given in combination with a certain number of cycles of another chemo drug, such as (often) T. I tried to have F removed from my chemo at first, but then (after a lot of deliberation and following the advice of two different concologists) ended up starting with FEC (and I will probably continue with one of the Ts after 3 cycles of FEC).

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Re: Anyone starting Chemo in December 2018?

Thanks Shi. Can always rely on your positivity and support 😘😘😘❤️❤️❤️

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Re: Anyone starting Chemo in December 2018?

Dikat 😘😘😘💪💪💪💪the spectrum of emotions on this journey could never be put into words, just know all of them are ok, you don’t need to explain yourself to anyone or not let them out, we are here and you can share everything with us ❤️❤️Keep focused we’ve got you 👭👭I always found doing something that made me happy like watching my favourite 80’s movie or bit of drawing or if I’m completely honest lots of Amazon shopping gave me a boost on a blllaaahhh day, whatever it is, you treat yourself ❤️❤️💕💕✨✨Shi xx

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Re: Anyone starting Chemo in December 2018?

Lots of hugs and good wishes, Jayne. The only way is up!HeartHeart

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Re: Anyone starting Chemo in December 2018?

My husband wanted to say Happy Halloween, Oh I said is it because I look like a freak. No no he said, it is because it feels like it was only just Christmas. That makes no sense. BUSTED! We had a good laugh 😂

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Re: Anyone starting Chemo in December 2018?

Thanks for the info Wahini. Hope you continue to feel ok and the redness calms down as the steroids reduce x

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Re: Anyone starting Chemo in December 2018?

Hi DiKat, not pleasant for the nurses either, they don't like to hurt anyone so three of them had a go. In the end a 'baby needle' was successful, I will remeber for next time! I am not on Pertuzimab, just T & H. I think anti sickness drugs was in the T infusion but they didn't give me any to take home. I feel ok while I was very sick on FEC. The steroids are 2mg Dexamethasone and I take 4 twice a day for 3 days starting the day before chemo, after that a few more days lowering the doses. I think it is in the T infusion as well so the first night after is the worst. My face is very red now, looks like wind burn.

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Re: Anyone starting Chemo in December 2018?

Hi Jayne 

lovely to see you back. I guessed things would have been difficult for you and I’m sorry to hear it confirmed. I too have a teenage daughter who struggles with her mental health so can empathise on that one. It’s so hard to be supportive in general never mind when dealing with your own issues. It sounds like you’ve had it really tough and then to get the issues with your picc is a double whammy! I’m so pleased however that you’ve had some shrinkage. Did you have an ultrasound or MRI? Like you, I am anxious about THP and I’ve also been in a pretty bad place mentally. My body feels in a complete state of anxiety. I’m trying to put a brave face on and draw on all the coping mechanisms I’ve learnt over the years but struggling. I’m good at giving the advice to others though. I really feel like I don’t want to be around people. Maybe it’s normal at this stage of the chemo to feel like this. You kind of start out scared but positive so perhaps it’s just a half way lull. I look pretty crap now too...skin colour not great  and way too thin so that doesn’t help. Anyway, enough moaning, we can and will get through this. Sending lots of love xx

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Re: Anyone starting Chemo in December 2018?

Hi wahini

ouch 6 attempts, that must have been difficult for you, Glad they got it eventually and it went ok after that. Know what you mean about sore arms from FEC. It happens to me about 2 wks after the infusion. I’m due to move on to T next Wednesday with Herceptin and Pertuzimab (not sure how to spell it) have you just had the T & H? What dose of steroids did you have beforehand? Did you still need anti sickness? I had Emend before FEC x

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Re: Anyone starting Chemo in December 2018?

Hi Jane, good to see you back here, I hope it helps to get things of your chest. I had my docetaxil (T) cycle yesterday and once the needle was in place it only took one hour and the Herceptyn injection in the thigh only 5 minutes. So far I don't feel any serious side effects except for trouble sleeping, I suppose from being pumped with steroids. So it probably will be less worse than you expect. Take care x

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Re: Anyone starting Chemo in December 2018?

Drumnerswidow, I struggle with depression anyway so am already on tablets. Trying to use all the techniques I've learned over the years to keep it at bay. Not easy but got to try right? Take every good minute to the max. We can all get through this together no matter how bad. Ha ha listen to me preach!!  Xx 

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Re: Anyone starting Chemo in December 2018?

Jayne 1966

 

sorry you are in such a bad place and struggling. I can empathise! Have you seen your gp maybe for some antidepressants ? I haven’t been on much as I am struggling too. Xx

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Re: Anyone starting Chemo in December 2018?

All you amazing ladies,

i've not been on for ages.  couldn't face reading what everyone is going through whilst trying to cope with my own situation. I have missed you all though. I've not read all the messages but will start again now if I can be motivated too. 

So ... my daughter survived and is at home now. She is really struggling with her mental health and I'm really struggling to have enough emotions to be able to support her. Depression is knocking at my door and I'm not sure how to keep him out (not sure why depression is a he but still ...). I have a clot around my PICC line that the A&E failed topick up but the breast cancer nurses got me a scam pretty damn quick and I'm now on twice daily blood thinning injectionsfor 6 months. Good news is that both tumorus have shrunk. Right Grade 2 one about a quarter and left Grade 1 just a tiny bit, but oncologist is please.

Absolutely cacking myself for monday when I get the dosetaxil and herceptn and whatever the other one is. 6 hours ... argh. Has anyone had this yet ? So many steiroids to take the day before. I just want it all to be over now. Fed up of being so scared. My kids only have to sat they love me and I'm in floods of tears. Scared for them too and unable to have enough emotions tosupport them well. Feel like I'm failing even though I know I'm not. Was going to have massage and accupuncture at Haven but can have either now because of clot, Feels liek worls against me - altough I did find a tenner on the pavement so maybe the tide is turning. 

Love to you all and hope everyone else feeling a bit brighter than I am xx

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Re: Anyone starting Chemo in December 2018?

My fourth chemo cycle was problematic today as my veins didn't cooperate and my arm was already sore from the FEC cycles, it took six attempts. I felt like a pin cushion. Hopefully next time will go easier, T is supposed to be softer on the veins than FEC.

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Re: Anyone starting Chemo in December 2018?

Marlyn - I got my heart scan 9am the morning I started chemo at 10:30am! They got the results through superfast.

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Re: Anyone starting Chemo in December 2018?

Sh*t yes I forgot, I start Herceptin tomorrow too, and then every three weeks for a year. The nurese told me not to expect SE from this one, just a sore bump on the injection side. I had my heart scan a few weeks ago, I think just to get a baseline image. Everything looked good, no damage done so far looks like.

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Re: Anyone starting Chemo in December 2018?

Hi didkat,

thank you, yes, I'm having herceptin too......oh the gift that keeps giving!! Xxx

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Re: Anyone starting Chemo in December 2018?

Wahini, thanks for the info re benefit ka-brow. Will give that a go as mine have thinned and I struggle to do anything useful with a pencil. 

reddi, good luck with your first T. It seems like others report more se's with the first dose so get this one out the way and hopefully things will get easier.

Marlyn, good luck with pre assessment. Hopefully all of your questions will be answered. I think you only need a heart scan if you're having Herceptin xx

 

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Re: Anyone starting Chemo in December 2018?

Hi wahini,

I will be on fec and apparently staying on it...I have such a vivid imagination! I am imagining all sorts....my pre chemo assessment is tomorrow, I have a huge list of questions....did you have a heart scan before it all started? I haven't had one yet....so of course am imagining my heart will sustain all kinds of damage and no one will ever know!!! Eek...xxx

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Re: Anyone starting Chemo in December 2018?

Hi Marlyn, the chemotherapy and pre-assessments I can do at a local hospital 20 miles away (30 min car ride) but most services and the breast centre and Maggie centre are in a regional hospital 100 miles away. They courier my blood and drugs up and down.Tomorrow I will have my third of six cycles and the LGFB workshop is just before my sixth if everything goes to plan. I have had three FECs and tomorrow first of three Ts. Will you be starting on FEC? I was quite sick after the first but they made adjustments for the next two and that really helped. Don't hesitate to contact your support team if you feel not well, they can help with side effects. Some say T is worse than FEC so I am bricking it too. I am especially afraid of the possible loss of feeling in toes and fingers and that the damage can be permanent. 

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Re: Anyone starting Chemo in December 2018?

Hi wahini,

oh wow, you have to travel 4 hours on the train for chemo?? That must be exhausting! I'd best stop complaining about the 45 min car ride! Did you say you have one more cycle? How you finding it? My first cycle is Thursday....am bricking it! Xxxx

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Re: Anyone starting Chemo in December 2018?

I booked the LGFB workshop. It is a four hour train ride each way for me, but if I can do that for treatments and hospital appointments, I can do that for a feel good workshop. The timing seems perfect, just a week before my planned last cycle so i should be well enough. Another thing to look forward to.

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Re: Anyone starting Chemo in December 2018?

Morning ladies

just to make you aware, the eyelure-c false eyelashes are now available to buy from Boots. They have been developed by a lady with bc specifically for people who are going/have gone through chemotherapy and have a thicker band to stick on. They are currently buy one get one half price. I don’t quite need them yet but thought I would order some so I have them ready xx

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Re: Anyone starting Chemo in December 2018?

@Wahini The goody bag was amazing - eye shadow, eyeliner, mascara, blush, tinted moisturizer, cleanser, lipsticks, lip pencil, etc., from brands like No. 7, Clinique, Rimmel, Lancome, etc. (the exact brands depend on what they have for your skin colouring). The videos are good, too.

 

Also: When I went to Boots to buy eyebrow pencils before I knew about the LGFB workshop, I mentioned at the counter that I was in the market for pencils because I was about to start chemotherapy, and trying to figure out what to get (since I had thick eyebrows, so eyebrow pencils seemed like a weird purchase -- and I had no idea what to buy, so needed advice). And... I got a freebie tube of foot moisturizer along with my purchase. I can't say it'll happen at every Boots cosmetics counter, but you never know...

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Re: Anyone starting Chemo in December 2018?

Thanks for eyebrow tip. I have bought semi permanent eyebrow tatoos but I think they will only work when there is no hair left. I live too far from look good workshop, I will check their videos online. Maybe I will travel for the day, I love a goody bag. Thursday I am booked for a massage, that I can do at support centre close by.

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Re: Anyone starting Chemo in December 2018?

Whoops -- I edited the thread subject accidentally while battling the reCaptcha on my phone!

 

@Marlyn - Benefit's Ka-Brow is a cream-gel with a little brush. I used pencils in the early days to fill in when I started to lose hairs, but when I got very thin, I was terrible at it and it took forever. I found the creamy gel with brush faster and easier, and people kept telling me how amazed they were that I'd kept my eyebrows -- you had to get fairly close to tell they were drawn. I still use it since my eyebrows are coming back inside half first. There are similar products that come with stencils, too. 

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Re: tion Re: Anyone starting Chemo in December 2018?

Hi reddie,

good tip ref the benefit brow thing....is it a pencil or brush type thing? I am about to start fec...if I keep me lashes and brows I will be thrilled!! Xx

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Re: Anyone starting Chemo in December 2018?

Hi @Wahini - My experience, and that of quite a few of my fellow June 2018 starters, was that we started to see hair growth once we switched from FEC (or AC) to T. However, many of us did lose eyebrows and eyelashes on T (having kept them on FEC). In my case, I lost much but not all of both; some lost all. It's hard -- but if you haven't done it yet, book in to a Look Good Feel Better workshop (amazing goodie bag as well as advice), or check out their videos online. I never wear make-up but have become quite adept with an eyeliner and multiple eyebrow options! 💕

 

p.s. 🤨The brow option I ended up liking best was Benefit's Ka-Brow! And as @Kip's instructor told her: they are siblings (or cousins?), not twins!

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Re: Anyone starting Chemo in December 2018?

I had my pre assessment today for next chemo cycle on Wednesday, my first T after three FECs. The nurse said my hair could start to grow back because T is not so harsh on veins and hair follicles as the red component in FEC. Could this be true? The published SE of T do mention hair loss including eyebrows and lashes, which I still have and would like to keep.

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Re: Anyone starting Chemo in December 2018?

Hi badboob that situation with the F is very interesting.

I wanted to know more: does anyone here had the same information or knows where to find research?

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Re: Anyone starting Chemo in December 2018?

Hi MariKamille, thank you, it is quite intriguing I will just keep digging!

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Re: Anyone starting Chemo in December 2018?

Oh yeh forgot the prunes, one of the girls went down that route to get things movin and all ok 🥳🥳 I don’t ever mean to offend anyone, I just try and make you 😁as you are sat their posting to strangers about 💩 anything goes on here don’t ever be shy in asking ❤️❤️💕💕💕✨✨✨Shi xx

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Re: Anyone starting Chemo in December 2018?

LOL, you can always rely on Shi popping in with her pearls of wisdom and emojis 😁😁🕺💃👍!

 

All good advice. The only thing I would add is that my oncologist was concerned enough to reduce my steroids so I only had to take them during chemo. This helped a lot with the constipation. To manage the opposite problem which started 5 days in, I never took Imodium as I certainly didn’t want to be ceased solid again, so I just ate a diet with plenty of fruit, veg and water! Staying hydrated is really important for lots of reasons. It’s a miserable having bottom problems so I wish you all well and hope Shi and I have helped a little.

 

Hugs 

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Re: Anyone starting Chemo in December 2018?

Silk pillowcase and beauty despite cancer scalp care kit helped my head and scalp when loosing and after lost hair 😘😘for botty wowes, it’s a bit of a dancing act, is oct17 ladies had senokot, moviolas, and some had things prescribed by their units, we all had shares in anosol and sudocream, we used it by the tub load. Sometimes t can have the reverse effect and you need to up carbs or get something to plug botty up, sorry to be so black and white ladies but it’s all tips that were passed to us from ladies who had walked the high wire and completed before us. Dikat bit of difflam and one of the girls with me used an airflosser and she found that helped. Sorry I can’t help with additional things, I was a tn and 3fec then 3t but went back to fec for my 6th instead of the 3rd t. Hope that helps a bit you are all doing amazing 💪💪💪💪 Tyne on the Chemo jukebox, sisters are doing it for themselves 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻Dance round your kitchens like 🤪🤪🤪🤪🤪and blame the steroids/chemo 😁😁😁💕💕💕✨✨✨✨Shi xx

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Re: Anyone starting Chemo in December 2018?

Hi ladies, just jumping on to post a few tips that might be useful. 

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Re: Anyone starting Chemo in December 2018?

Hi Sandraindurham

 

Do read Badboops' post regarding this - 8th February. It straightens things out.

Member

Re: Anyone starting Chemo in December 2018?

Hi Badboob

Just a follow up re your problems with constipation and what follows when you get that sorted! I had same difficulty (perhaps I should change that to HAVE same difficulty as I only had my 3rd Chemo on Thursday last and am still crossing fingers - and legs!)

I asked the oncologist if I could use Charcoal tablets which help with various problems as above and also flatulence and heartburn. He said that was OK as long as I left 3 hours between medications (steroids -as you rightly name). That's impossible for first 4 days of Chemo cycle as there is no 3-hour gap except in the middle of the night!

So, I am constipated again so far, as expected this cycle. However, taking Laxido sachets - as supplied by my GP - which are gentle and do work. As soon as they do and that gets going, I will be over the first 4 days, and then I can use the Charcoal tablets (which I have already tried successfully at end of last cycle) and so prevent the diarrhoea hopefully, from immediately starting up again. Otherwise it was quickly onto Imodium which seems a far less natural product and yet another drug! Also, this would happen several times during a cycle - moving from one extreme to the other!

Hope that is useful.

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Re: Anyone starting Chemo in December 2018?

Hi Badboob 

Flourouracil and Epirubicin

That is so useful re these two drugs and my muddles! Looks like it was the first one that the oncologist removed then and it's a pity he is not up to date!

 

Sandraindurham, Trixielady and DiKat please see Badboob's post of 8 February, too.    

 
 
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Re: Anyone starting Chemo in December 2018?

Hi Kitkat 

That's useful and timely as I was about to stock up on the ordinary Boots ones today and will now go for the others if the eye problem starts up again. So far all is well but it was nearer to the middle of the cycle that the trouble started before - so I'm not counting my chickens! Many thanks.

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Re: Anyone starting Chemo in December 2018?

Hi absolutelyannie

 

Yes, I am not sure about which drug now - or whether it refers to two of them! I posted about my muddled thoughts yesterday to DiKat.  However, the nurse did offer that my dental problems should go now that I have had a drug removed. I will up-date if I get a reply from one of the nurses on here.

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Re: Anyone starting Chemo in December 2018?

Hi Stuckat14

 

I am same as Wahini on this one. Use a sleep cap to keep my head warm - but also because I like it covered up at all times - hate the sight of my bald head!

I have whispy bits of hair left as I would not shave it as I have skin problems and just knew that any shaving would give me a rash! The whisps are very slow to go but not at all uncomfortable. Nurse advised that they will fall off eventually and it will not have any effect on re-growth - be long gone by then, I expect!

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Re: Anyone starting Chemo in December 2018?

i think it is Zometa that causes dental problem.  I am on Epirubin but was not told it would cause dental problems

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Re: Anyone starting Chemo in December 2018?

Hi Badboob, I have difficulty with the different treatment plans, Im on Fec that is 5FU( fluororacacil) epirubicin & cycloposphamide for my first 3 cycles, then my T is docetaxel (Taxotere) for my last 3 I thought they would be all as important as each other, but I suppose we're all different and so are our stages and grades and that will mean our side effects are different too but I'm finding it helpful looking and comparing just in case, I'm only 5 days into my first cycle and keeping me fingers crossed xx Good luck & a big hug xx

Member

Re: Anyone starting Chemo in December 2018?

Hi Mary Kamille, I have had the same eye problems and my onc prescribed hypromellose drops aka artificial tears for my drugs bag and they definitely helped so might be worth enquiring about if it continues. x

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Re: Anyone starting Chemo in December 2018?

Hum, interesting discussion! Are you sure they haven’t dropped the F? I have had 4 rounds of docetaxel followed by three of just EC. When I queried why no F, as so many people seem to have FEC, my oncologist’s view was that the F part was being phased out as it didn’t seem to add much to the overall efficacy of chemo! 

 

I have found EC to be much more tolerable than docetaxel but I have suffered terribly with either constipation (caused by the steroids) followed by the opposite problem for the rest of the cycle!!!

 

Hope this helps! 

Good luck

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Re: Anyone starting Chemo in December 2018?

Hi Ladies,  found this hopefully it's helpful Epirubicin is used to treat breast cancer. It belongs to a class of drugs known as anthracyclines and works by slowing or stopping the growth of cancer cells. Xx

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Re: Anyone starting Chemo in December 2018?

Hi maryKamille 

Yes we are complicated individuals and I can understand that you are now having anxieties about not having the third drug. However, we do have to trust the experts and surely your Oncologist wouldn't have made the change if it would compromise things. When I was admitted to hospital after first cycle with neutropenia a pharmacist came to see me and he said that epirubicin was evil, mind you he then corrected himself and said they all pretty much were!

I'm not able to follow your link unfortunately, it won't load.

My mouth is better than it was but still a little delicate. My gums appear to be disintegrating at the front but not as red now. 

Fingers crossed you start to feel better. Let us know if you get any info from nurse on epirubicin.

Take care x

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Re: Anyone starting Chemo in December 2018?

Hi sandraindurham

Regarding - epirubicin

The more I go into this, the more muddled I get.

Try this website page:

https://www.breastcancercare.org.ukhttps://chemotherapy/fec-chemotherapy

or you can just put in the name of the drug, epirubicin, or look at FEC5 which lists the 3 drugs and details about them.

I am not sure if the side effects common or rare are attributed to 5 fluorouracil or epirubicin or both!

Anyway, keep scrolling and you will find dental problems listed.

Hope it is useful.

All good wishes!

 

I

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Re: Anyone starting Chemo in December 2018?

Hi DiKat

 

Fingers crossed! Yes, just the other 2 drugs now and the nurse said that now he's removed the other one he will not reintroduce it either. I still had middle/abdominal pain 12 hours after the treatment - same as last two cycles. Didn't sleep until 4 am and then only got 4 1/2 hours - that's the steroids in it all, I guess. Makes you buzz!

The other interesting thing is that in the less common side effects of epirubicin is eye problems. I had been having a lot of discomfort and my eyes felt gritty, latterly also getting blurred vision late in the evenings. I have been trying just a Boots Eye drops for dry eyes and think that might be it. Maybe that problem will also lessen or disappear with not having epirubicin from now on.

However, we are complicated individuals and my initial delight is now turning on its head. Do I believe the oncologist's assertion that not having the 3rd drug will not compromise the efficacy of the treatment?

It's been worrying me and I am going to ask one of the nurses on here about that. Nowhere can you find out exactly what epirubicin is meant to do - I mean towards the cure side of things rather than the side effects! I've had a post asking me for further details re the epirubicin details and will try to post a reply re that website page. So look out for that one if you are interested.

How is your mouth now?

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Re: Anyone starting Chemo in December 2018?

Hi Marykamille, I cannot find your post and I really wanted to have this information. I never read anything linking epi to dental issues. Could you post a copy/paste of your info, please? 

Thanks!