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Anyone starting Chemo in December 2018?

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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

Member

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

 

Member

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

Member

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. 

Member

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

Member

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.

Member

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

Member

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.

Member

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. 

Member

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

Member

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!

Member

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.

Member

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?

Member

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

Member

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

Shi Community Champion
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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. 

Member

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.

Member

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.

Member

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.

Member

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!

Member

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

Member

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

Member

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

Member

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

Member

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?

Member

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!

Member

Re: Anyone starting Chemo in December 2018?

Hi maryKamille 

Glad it went well. That's interesting that epirubicin relates to dental problems. So did you just have the F and C? Hope it's much better on your gums this time x

Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat

 

Many thanks 3rd one went well. I did a long reply with information about Epirubicin which my oncologist has removed from this treatment. (I am on FEC5 -  3 drugs, but now only 2). It relates to dental problems which this drug is mainly responsible for!

Anyway, I lost the post in this new system. So, you may get 2 replies!

Member

Re: Anyone starting Chemo in December 2018?

Hi Stuck at 14, I wear a chemo sleep hat (google it you can find/buy them online) at night to keep my head warm and am not bothered by prickly hairs. I buzzed it off to 3 mm but still have quite a bit of fluff left that is very slow to come off.

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Re: Anyone starting Chemo in December 2018?

Hi! Popping in from Jan starters- thought I was so clever shaving my hair off two weeks after ec1 but tonight, 2 days before ec2, I can't get to sleep because of the million needles stabbing into my head/face=everywhere they fall. Two kids coughing isn't helping. One of those nights. Can anyone recommend something to sooth this hair loss bit? Ow. Hope you're all doing ok. Xx

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Re: Anyone starting Chemo in December 2018?

Thanks maryKamille

some really useful info there. I often find the mouthwashes too harsh and have to use a capful of water to rinse afterwards. I remembered I had some gelclair sachets from the unit, they’re good for coating the mouth an hour before eating. Good luck for tomorrow x

Member

Re: Anyone starting Chemo in December 2018?

Hi DiKat

It took a week to get rid of it completely. I did a solution of 1 pint water with 1/2 tsp of Bicarbonate of Soda and 1/2 tsp of salt. Used it all day for rinsing mouth after ... well, just about anything and any time I ate or drank. Got through that pint each day! I also have mouthwash from hospital call Benzydamine. I was told at the pharmacist in my home town that all those mouthwashes you see on the shelves are only cosmetic - freshen breath. Dentist said only one is good for gums - Listerine Advanced care for gums. It has everything Corsodyl has except Corsodyl - I am allergic to that, which she knows from past experience.  If mouthwashes sting you can water them down a bit so they don't!

My mouth became very dry and the gums in other places felt rough instead of smooth but it gradually improved. I also put some Bonjela on the sore red and swollen bits at night. It stung but then numbed.

Of course, eating is a bit problematic!

Good luck with all that. I have 3rd Chemo on Thursday and it will be interesting to see if this dental weakness continues or not.

 

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Re: Anyone starting Chemo in December 2018?

Hi maryKamille 

I am day 6 today and suffering with the same problem you had last cycle. For the past couple of days my bottom gum has been really sore. I'm brushing regularly with a soft toothbrush and using biotene mouthwash for added moisture. I did have a bit of it last cycle too so seems to be a weak area. Just wondered if you had any tips or did it sort itself. Thank you x

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Re: Anyone starting Chemo in December 2018?

I may not cry but when I read the story of Bernie and hear the music his friends make it brings tears to my eyes. Especially when they show him listening to it. There are good people in the world! https://www.npr.org/2018/11/02/663422289/bernie-and-the-believers-feat-essence-tiny-desk-concert

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Re: Anyone starting Chemo in December 2018?

I am having my 4th EC this wednesday but met oncologist this morning.  I had an ultrasound after the second session which showed tumour had shrunk a little bit.  I was pleased with this as was the Senior Registrar I saw before my last session.  I am having my 4th EC session this week but saw oncologist this morning. She was not happy with the tiny amount that it had shrunk and said that chemo should be working better.  Very disappointed and depressed after my hopes were raised by the previous doctor. 

 

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Re: Anyone starting Chemo in December 2018?

Want to add all good wishes, Jayne 1966, and good to hear that your daughter is on the mend now. You are certainly getting much more than your share of troubles, bless you. HeartHeart

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Re: Anyone starting Chemo in December 2018?

So pleased your daughter is ok Jayne1966 and hope she continues to get support. Such a shame about your picc, you really are bouncing from one thing to another. Hope they get you sorted soon xx

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Re: Anyone starting Chemo in December 2018?

Jayne 1966.

 

I am so pleased that your daughter is okay. Sorry you are in hospital yourself re your PICC line. My feels uncomfortable but am up at the hospital today for chemo. Glad it’s not a clot but hope you haven’t got an infection. Bless you you’re having a bit of a run of it lately xxx

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Re: Anyone starting Chemo in December 2018?

All, thanks for the messages. My daughter is fine. She was not suicidal, just trying to cope. 15 hours at the children's hospital was no fun though and it has scared her enough that I hope no repeat.

I am back in A and E now for me as PICC line arm discoloured and painful. They have rulled out a clot thank goodness. Just waiting for blood tests.

Member

Re: Anyone starting Chemo in December 2018?

@absolutelyannie I'm a June 2018 chemo starter and thought I'd weigh in on the SE transition from FEC to docetaxel. I used polybalm on my nails after @GeorgieGee recommended it (it was trialled at her hospital in Cambridge), and I managed to keep all my nails. Don't know if polybalm was why -- I also used cuticle oil regularly, as polybalm is pricey. I found the aches and pains and fatigue much harder on T, but I wasn't neutropenic (or, that is, I didn't land in hospital for it, like I was on FEC!). Otherwise, I think it was mostly the cumulative effect of chemo -- all the antibiotics from my neutropenia scares in FEC left my gut without any good bacteria, and some unpleasant stuff ensued as a result; plus, I got shingles -- but that is super unusual. The Udderly cream with urea that Shi rec'd is great -- I had to switch to it near tje end. Keep an eye out for blisters on hands and feet, which can be a serious SE; I only had real trouble with this after my last cycle. And report and tingling in hands and fett, too -- I got this, and they were very attentive to whether the perpheral neuropathy was getting too bad to maintain my dose, but thankfully it has gone now (about 2.5 months after last cycle). Oh! Nail p.s. I did put cold packs on my hands and feet during the docetaxel infusion, following tbe model of cold-capping. Research is mixedon efficacy, but it doesn't harm so long as you do not put the freezer packs directly on the skin. Because I was also getting Herceptin and Perjeta, and there wasn't room in the ward freezer for my packs, they were usually starting to thaw by the time I was gwtting docetaxel. But the cryotherapy may have helped a bit with my nails and peripheral neuropathy. I don't know for sure. 

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Re: Anyone starting Chemo in December 2018?

Hi absolutelyannie, because it was just toenails I didn’t really notice, I know ladies who loose fingernails can find it a little sore for a bit. Be careful when opening things or carrying any bags, I’ve seen a few stories where a nail has popped off, it’s just a se of docetaxel and please remember everyone has a different experience ❤️❤️You just have to go with the flow, keep safe and always ring your rapid response if you are not sure about anything ❤️❤️ 💕💕✨✨✨Shi xx

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Re: Anyone starting Chemo in December 2018?

thanks for that - did not realise my toenails would go.  surely that is painful!!!