Anyone starting Chemo in December 2018?

[absolutelyannie]

MaryKamille

Thanks for your reply.  I am getting used to this forum now.   I am having neo-adjutant chemo before surgergy and have 3 more sessions.  I found EC easier than T - hope it gets easier as I have 3 more of them.  

Like you said I just want the bad bit cut out and think I will opt for prothesis as long term might be easier to manage. 

Keep your spirits up 

[DiKat]

Hi maryKamille

Yes, diarrhoea is a known side effect with T. I only had problems the other way with FEC. Good that your eyes are better, I haven’t suffered with sore eyes, just blurred vision at times. I have used my electric toothbrush throughout but swapped to a child’s soft bristle head. Still using biotene toothpaste too which is mild. Is the sunburn effect from your steroids? If your digestive issues continue may be worth seeing your GP for omeprazole or lansoprazole. Yes, it does feel like a mentally and physically low point, think all this chemo must be building up in us. Only 2 more though! Take care xx

[maryKamille]

Hi Dikat

I took Laxido to get me going again this cycle but it only took a couple of days to do that and I stopped taking it much earlier knowing what was to follow! I take Imodium for a couple of times when the opposite effect starts and that sorts it out pretty much. I'm still on FEC though and haven't (as far as I know) got any other Chemo treatment to follow the 6th cycle of that. Maybe your 'T' is is different.

My eyes are much better. How are you doing on that front? Also, no dental problems with this 4th cycle, although seeing Hygienist tomorrow (routine appointment) and hope she is not too displeased with me! I can only use manual, with a Sensodyne toothbrush, for first 2 weeks of cycles and try to blast away with the electric one (I've used electric for decades) for a week at the end of a cycle.

I know what everyone means about getting one SE sorted and then something else gets thrown in! My OH was massaging my knees for me last evening - bliss. Got joint problems now, then, as well as the backache and hips?

I've stopped taking the Ranitidine as I am sure it was affecting my taste buds. If nothing tastes right it's hard to bother with food! Although I make sure my OH eats well. I'll see if the heartburn and indigestion has settled without that drug.

One good thing to add, the lobster sunburn effect on face, chest, top of back and arms down to elbows has really reduced this morning. Maybe that's the end of that for this cycle (day 6). Can't cover it with make-up as it makes me itch. Otherwise it doesn't have any ill effect - just looks weird! 

4th cycle and feeling lower mentally, let alone physically - fatigue, too. Take care XX

[Wahini]

Hi DiKat, I haven't lost my eyebrows and eyeleashes (yet), for which I am very grateful, and I still have some body hair and facial sprouting hairs. My head never lost all its hair, there is some down left which I tried to remove but it is so soft it won't go.

[maryKamille]

Hi Wahini

I had 1 lymph node out of 9 removed. It was the size of my tumour (5cm) and the greater 'abnormality' of the cells when I actually had the surgery which moved me from a Grade 1 to a Grade 2 level. Although they knew the size of the tumour beforehand and showed it to me on the scan. At that time I was still a Grade 1 and only some hormone treatment, perhaps, to follow the surgery. That was what was so disappointing. I had had a biopsy, too, by then.

I hadn't realised that the Rads had such a low recurrence reduction percentage. However, if the oncologist says what he did say - that I would be back in 2 or 3 years if I don't have these treatments - then I suppose I have to go with it. 

Today I was telling myself that this is 6 months from initial recall and diagnosis of BC and that I had got through 3 months of Chemo. But I don't feel so good mentally about it all as time goes on. Perhaps that's just a lull in the treatment cycles. You want to believe it's all working, but how do you (or even 'they') know?

Thanks for response and always good to post to you. XX

[DiKat]

Meant to ask Wahini. How are you doing on the hair department. I’ve started to sprout quite a lot in various areas! I never did lose all my nasal/arm and top lip hair and I had to continue to pluck out a couple of unruly ones on my chin! The top of my  head is a little fluffy now. Worries me a bit as was thinking the chemo might not be as effective x

[DiKat]

Thanks Wahini

Feeling a bit sorry for myself today, which isn’t me, hate having stomach problems with it being a weak area for me. Hanging in there though, getting boob pain so hoping a war is going on,  different side effects but still feels better than FEC! 

Hope it’s sunny by the sea x

[Wahini]

Hi Shi, great tip for the wigs and so affordable. I think I will get a rock chick one and maybe a mullet and moustache for my husband. For when we go yo music festival.

DiKat, seems you are having it rough. Hang in there. It may indicate that the chemo is thoroughly cleaning your system of rogue cells. 

[DiKat]

Hi Shi

Thought I was getting away with it but day 7 and looks like the T diarrhoea has set in! Is it ok to take Imodium? Will get some dioralyte down me to try and replace fluids and salts...just as the aches and pains start to ease a little, in comes another curve ball xx

[DiKat]

Angelblue 

Thanks for the info re the cream, useful to know.

shi, that’s also useful to know about the 5 booster rads.

Ive had a trip to the docs this evening. My throat is quite red and sore. GP said it was sore and inflamed but no sign of infection at present so no antibiotics. She’s told me to carry on with Difflam mouthwash and to take paracetamol and ibuprofen. My temp was ok. She said to keep an eye out for any changes. Can’t fault them for how quickly I was seen.

[Shi]

Ladies ask about the 5 booster rads too, because they can only give you rads to that place once. A lot of us had 15 + 5 booster rads we pushed for them because of the fact you can only have it the once. You are all probably aware of this but thought I’d mention it anyway. Have you checked out luvyababes wigs, I got a few from there and loved them more than my very expensive real hair one my darling husband got me 🤭💕💕✨✨Shi xx

[angelblue]

Hi marykamille

Oh no...what a frustrating wait and chase for a wig that was disappointing! No I'm not wearing mine around the house and I know that I really should.  My last chemo should be April 8th then, like you, I have 4 weeks off but followed by 5 weeks radiotherapy. And we were the same in initially being told that it was surgery followed by hormone therapy....if only!!  I'm also concerned about the effect radiotherapy will have on my tissue expander as the skin around it can burn and contract and cause further problems. Although I felt that the tissue expander/implant route was the way for me at the start of this journey and I'm very happy with the result so far, had I known 5 weeks radiotherapy woudl be added to the mix I may have gone for a different option (dikat depending on whether you're having your surgery pre or post radiotherapy may affect your decision on reconstruction). I have done lots of research (my health anxiety does come in useful) and found out about creams called Rad 1 and Rad 2 (R1 & R2). They are very expensive but should be available on prescription. They are designed specifically for radiotherapy and all the reviews and posts I've read about them have been very positive. 

I'll be so glad to be finished chemo but not looking forward to 5 weeks of daily hospital visits...and I'm worried about overall cumulative fatigue effects from chemo then radiotherapy. But it'll be nice to recuperate in the summer ...the upside of having chemo through winter!! xxx

[Wahini]

Hi maryKamille, that is clearly rads for you then. My surgeon didn't think I would need radiotherapy but my oncoligist is convinced I do. The surgeon probably doesn't want his beautiful work destroyed and neither do I! So very difficult to make up my mind. The percentage reduced recurrence is personal, like how if and how many lymph nodes were involved (I had two). 

[maryKamille]

Hi Wahini

I am having Rads - 15 sessions after Chemo finishes which should be 11th April. I do get a month off in between the two treatments - Chemo, then Rads.

I didn't really have a choice. Oncologist told me, when I queried treatments after surgery, that if I didn't have them I 'would only be back again in 2 or 3 years time'. Nice one!

I was very upset as at time of surgery I was told I would not need anything further, that surgery was a 'curative treatment' and the only thing I might have after it was some hormone injections.

I didn't realise that Rads provided so little extra prevention for recurrence - percentage wise. Still, like you, I never want to be back going through all this again if I can avoid it. I think you are wise to go through with the Rads if you can. xx

[maryKamille]

Hi angelblue

What a great idea with the wig vote! I have 2 wigs now and vastly prefer my first one which was got through Macmillian and a branch of Browns Hair who do all kinds of hair things. 2nd wig I got from URHair - online and disaster.

Took a month of chasing before it even arrived and URHair told ME to hassle their courier! Cheek. It was stuck in Le Havre port in France for weeks. Anyway, when it turned up it was ginger rather than blonde, a clearly marked size 's' for small, when I had ordered Petite, and flopped everywhere. I looked like a St Bernard dog in it - but not so elegant!

Took it to my hairdresser who worked hard on it but I still hate it and the 'fringe' part is frizzing already.

Are you wearing you wigs at home? Get used to it at home then when you go out it's much easier. Also, I have a baker's boy cap which looks good over my wig and that can help. It's nice and warm, too!

I have more fatigue from FEC now, too. I think it's because all these treatments are cumulative in their effects. As to food - seem to eat ok for first few days and the anti-nausea Steroid based pills do help with appetite. But after that - well it's harder and I've lost weight and finding it hard to keep it stable. 

I also notice that I am beginning to lose my taste now. I keep asking my husband if this or that tastes alright. Guess I'll be driving him mad by overseasoning everything soon!

Enjoy your guilty afternoon pleasures - that's what their there for!

Take care xx

[maryKamille]

Hi Dikat

Good to be posting with you again, too. Yes Rads to follow. I get a month off after my last Chemo which should be 11th April, all being well. Rads are 15 sessions over 3 weeks - every weekday! Boy am I going to be looking forward to those weekends off it, I reckon.  I have skin problems and am dreading what the Rads are going to do to my chest. Also, they say in the booklet that after Rads you can feel extreme fatigue for months. However, we're all different and FEC5 hasn't turned out to be so bad after the first 2 or 3. Fingers crossed the SEs don't build up even more towards the last two cycles of Chemo.

Surgery around your 50th? Not the best time but somehow surgery (looking back) seems the most reliable part of it all - definitely getting rid of the 'bad' stuff! Everyone will have to make it up to you for anything you miss out on for your 50th - bet they are making plans already! x

[angelblue]

Hi all

Just thought I'd pop in and say hello! FEC 4 has really hit me fatigue wise. Its got worse each time so I don't know what 6 will be like! I've also really struggled with eating this time ...as in I get hungry but its hard to find anything that doesn't make me feel sick just thinking about it. 

I've had a look back over the last weeks posts. I hope everyone's doing ok. For those who are having trouble with cannulation, have you tried Emla cream? You have to get it from your GP. Mine suggested it because of my needle phobia. I smother it all over the back of my hand and wrap it in cling film an hour before setting out for chemo. I cover all the veins in case of problems with any. It has made the process so much easier for me.  

Re timing of filgrastrim injections - I was having district nurse round but it was stressful waiting for her to call all day. Now a friend calls round first thing in the morning to do them for me (I'm too much of a wuss to do them myself!). Although I am suffering with some back ache I prefer to get them done in the morning and out of the way.

I like your photo dikat! You are right...you just have to laugh at the situation sometimes! Speaking of photos I still haven't worn my wig properly yet apart from a trial run (I wear a hat and fake hair piece thing that gives the impression of hair at the back). I have a choice of 2 wigs but can't decide which looks more natural...I'm convinced they both scream 'WIG'!!!! Anyhow when I get my act together I'm thinking of posting photos of me in each wig and asking for a vote!!! It would be good to get others opinions.

I'll sign off now as Classic Coronation Street beckons...my guilty afternoon pleasure!! xxx

[DiKat]

Says it all Marlyn xxxx

[Marlyn]

Hi dikat,

just jumping in, I have been a non smoking teetotal vegetarian since my teens, and a total gym bunny....and yet here I am...from now on I am not going to worry about the odd choc bar or getting enough exercise......xxxxx

[DiKat]

What you say makes a lot of sense Wahini. I think I am getting sucked in by all of the info about all of the risk factors for cancers such as meat, parabens etc etc the list goes on and on. It’s fine for people who are happy to maintain that kind of lifestyle but there are no guarantees either way! Like my hubby says, it’s all about the odds. I’ve never smoked, never been overweight, breastfed my children and still ended up here! Like you, there is a lot of cancer on my Dads side, not BC though. I live by the sea too, well river technically 🌊

[Wahini]

Hi, I am not planning on radically changing my lifestyle like banning all sugars, alcohol, coffee, dairy, go vegan. I think that would give a false sense of control because I believe us getting cancer is quite random. In my case, there is a lot of cancer on one side of the family. Not breast cancer but other kinds and I think my cells were going to go off sooner or later no matter what. I do believe smoking and lung cancer is linked and that is why I gave up smoking twenty years ago. I am quite fit and healthy otherwise and I miss my exercise. I am used to surfing every day there is waves (I live by the sea) and hopefully I can get back into that this summer. For me surfing and being in the ocean is a huge stress relief.

[DiKat]

Hi Wahini

I enjoyed a glass of red for the first time in the week before my T. Really haven’t fancied it whilst on Fec. Can’t remember where I read it but I definitely did see an article that said moderate alcohol wasn’t detrimental during treatment and could actually be a benefit due to reducing anxiety. Like you say we are toxic vessels anyway.I don’t want to stress my liver any further but surely the odd glass can’t hurt! In the future I’m thinking I need to live a more healthy lifestyle but I was fairly healthy anyway! I previously worked as a stop smoking practitioner and health trainer so was all about supporting people to live healthier lifestyles. Ironic that I bloody ended up with this awful disease!

[Trixielady]

Hi Wanhini 

Its the bloody TV adverts that do my head in especially the one with the glass of red wine that comes out of her top, Tried a few Ginsa couple of weeks ago and felt ok a bit worried but then last night tired a sip from rose wine but was instantly ill but think it was all in my head, just so sick of hearing if you do this drink /eat you might get cancer, keep thinking well its far too bloody late then, just want to be happy and enjoy my life xx big hugs hope your all doing well on this forum, I'm on February's and on 2nd FEC xx

[kc72]

Hi Wahini

I’ve been off work since end August but now working days 12-20 just short days of 4hrs in an office. I’ve been replaced til I’m ready to return full time. Just dipping in means I can keep in the know with what’s happening and see my lovely colleagues, which works for me. I avoid though if there’s lots of germs about. 

Re alcohol hardly fancy it and red wine doesn’t taste the same to me. But when I do fancy a glass of white or a G&T I don’t deny myself - normally in second half of my cycle. 

KC72

[Wahini]

How are you all about drinking alcohol? I am in two minds about it. On the one hand I think, I am a toxic vessel and adding a familiar poison won't hurt and on the other I think , I am a toxic vessel and I should not introduce any more. Anyway, I am having a few drinks over the weekend as a treat. It didn't taste right on FEC but it does now. It relaxes me, it is good to relax, especially after a weeks work. 

[Shi]

Hi dikat 😘😘the t made my jaw feel like it was in a vice for a few days, it will pass, you could see if your unit could prescribe something. Hope no ones had 🌪botty on the t, sometimes t can bung people up and for others it 🌪botty. Just keep eye on mouth too dikat I know you will, keep focused amazing ladies 💪💪💪you are 🏃‍♀️🏃‍♀️🏃‍♀️To the chemo finish line now and we are all cheering you on 😁😁😁💕💕✨✨Shi xx

[Wahini]

Hi maryKamille. I have had surgery, three actually, and after chemotherapy I may have radiotherapy. What about you? I am still undecided because the radiotherapy could damage my reconstructed breast and it looks alright now. I wil probably do it because it should lower local recurrence rate by 5-10%. That is not much but I never want to go through all this again. So far I seem to recover quick from treatments and hopefully I will be lucky again with radiotherapy.

[Drummerswidow]

Hi DiKat.

Just having the Paclitaxel. Having steroids from Monday to Thursday then stop. Injections Friday to Tuesday. Oh to have a soak in a bath. I can get in but can’t get out cos of my arthritis. Xx

[DiKat]

Hi marykamille

nice to hear from you. Touch wood I seem to be staying on top of the mouth issues. Difflam has helped with the ulcers, so doesn’t seem to be as bad as was with Fec. I’m eating quite a lot to be honest so can hopefully put back some of the weight I lost. Biggest problem is muscle/bone aches at present but am coping. Can empathise with the digestive issues. I increase my omeprazole after chemo and ease off as the weeks progress. Ranitidine isn’t as effective for me. Are you having Rads after your chemo. It will be surgery for me next. I’m anticipating it will be around my 50th Birthday, 2nd July. Take care x

[maryKamille]

Hi Wahini

Haven't posted you for a long while but trying to catch up with everyone. It's interesting how we all react differently to our treatments. I've just had 4th FEC5 chemo but without the Flououracil now. I don't get nausea and sickness but have had various other SEs.

I would also love to just go somewhere else for the duration but we only returned from France after 12 years out there in 2014, so don't think we will be going back! Actually, it's been one good thing for me in not having to deal with a serious illness in a 'foreign' tongue. My French is good - but not for technical stuff.

Good news that 'T' is not affecting you in the same way as FEC. Long may it stay that way! Good luck for next Wednesday.

Have you had surgery or is that to follow? Sorry, can't remember. Looking back, surgery was better than Chemo - that's just me and my mental outlook at the time. x

[maryKamille]

Hi Dikat

So sorry to hear about the mouth problems - that's a real bummer! It is horrible if food becomes painful as I know, too. I guess this is because of Tax. Having Fluorouracil cut out of my FEC5 treatment has meant no further problems for me - so far - with gums etc. Although I am seeing hygienist (routine) next week and see what she has to say about condition of mouth. Hopefully, she will not be too discouraging as I seem to have less plaque now and my gum disease was down to about 7% which is lower than the 10% which is considered by her to be OK for adults - we all have a bit of it as we age, apparently. Not that any of that compares to your ulcer problems etc. Are you stuck on just liquid foods now?

I am getting more gastric problems - hearburn - pretty constant, but probably my fault for not taking Ranitidine for the first 7 days of cycle. I find it further upsets bowels, which are in a constant state of flux anyway. Sorry, too much information!

Walking is now painful for any length of time - back and hips - but you are still managing a mile a day? Good on you! x
PS loved photo of you and granddaughter wearing your wig!
 

[DiKat]

Hi Drummerswidow

Are you having Paclitaxel on its own or with anything else? I had Docetaxel, not really sure of the difference! Did you say every 2 weeks for you? Not much of a breather in between if that’s the case. Currently in an Epsom salt bath getting a bit of relief x

[Drummerswidow]

Hi DiKat

aches and pains are horrible aren’t they! I feel like I have the flu. The only relief I had from back pain was my dog lying down my back when I was in bed bless him! Having palpitations as well but I suffer with atrial fibrillation anyway. Thought the T was going to be not so bad but I don’t think it is. Seeing my horrible Oncologist on Thursday. See what she says. 

[DiKat]

Hi pastamissus

was just wondering how you are doing now after your first T. How long did the aches and pains last? I’m only day 5, mine started on the evening of day 3. Like you’ve previously said, might not be the worst pain but it is relentless! I’m alternating ibuprofen and paracetamol but not getting much relief x

[Neecy]

Thanks Drummerswidow. I have cocodomol left over from surgery so can have it on standby if needed. X

[Wahini]

Hi, well remembered DiKat. I go to the beach every day looking for seaglass and shells and I use these to make jewelry. I really enjoy doing this.Today I went a bit farther to my 'secret beach' to collect loads so I have plenty to work with next cycle. I hope I will not suffer from dead fingers side effect, been doing good so far, not even pins and needles. On my sick leave days I also catch up on tv shows, for example 'Call the midwife'. And I love reading and listening to music so it is not all bad. I have no pains from filgastrim injections but the steroids do keep me awake at night so I take these no later than midday. Not that it helps.

[Drummerswidow]

Neecy

I do mine in the evening. Found paracetamol a bit useless. The chemo girls suggested co codamol as long as you can tolerate the codeine. Also potential constipation! Unfortunately a necessary evil xxx

[Neecy]

Thanks DiKat and Pasta missus for the great advice xxxx

[DiKat]

Hi Neecy

I do mine in the evening too, usually about 7.30/8. Remember to take it out of the fridge half hour before. Not everyone gets pain so you may be absolutely fine. If you do it tends to be in the pelvis, back and top of legs. It’s been really variable with me, first cycle was fine, had most problems cycle 3. I often get a headache too but I am a bit of an oddball...not very good with medication in general 😂 Good Luck and remembering to check your temp before having any paracetamol x

[DiKat]

Yes Wahini

Kylie style would have been preferable! I’m very lucky that I’m not the main breadwinner, at least that’s one thing I’ve not had to worry about. It is nice not having the FEC nausea and good that you’re tolerating T. Good luck for next Wednesday, only one after that! If my memory serves me correctly was it you that was making some jewellery? Did you manage any. I’m not the most creative but have nearly completed a Pom Pom rug as thought I could manage that! It’s good to have a distraction at times xx

[pastasmissus]

I do mine at teatime. Was very achey and stiff after first 6, but 3 subsequent courses of 7 have been fine

[Neecy]

Hi Ladies, just looking for some advice from any of you lovelies who are using the daily injections for white cell production. I've to start them tomorrow due to a prolonged neutropoenic episode. Is there a good time of the day to do it such as evening time and hopefully sleep through any painful side effects or am I being naive and will I just be up all night?! I plan to take paracetomel too. How soon do you feel bone/muscular pain? Very grateful for any advice thanks. ❤️😍

[Wahini]

Hi DiKat, I would like to do a 'Kyle', disappear to France and come back when it is all done after half a year or so, but I could not afford this being the main breadwinner. I have no aches and pains on T, I got sick and nauseus on FEC but not now. I just get tired more quickly and some minor stuff like watery eyes and running nose and hot flushes. Hope it stays that way for the finfinal two cycles! My next cycle is next Wednesday. Take care x

[DiKat]

Hi Drummerswidow

I had first injection last night too so the combination is going to be interesting. Will try and get a bit of fresh air later as head is banging too. Xx

[Drummerswidow]

Hi DiKat. I had first Paclitaxel on Monday and am suffering with aches and pains and generally feeling unwell. Started injections last night so that’s going to make it even worse. Don’t know how I managed to get the dogs walked. Had to stop every few steps. xxx

[DiKat]

Hi Wahini

Thankfully I’m not working through any of this! With what chemo has thrown at me so far would have struggled anyway. Glad you are getting some good days on your sick days to enjoy a bit of you time. Did you have the aches and pains with Tax, how long did it last? When is your next cycle?

[DiKat]

Well day 4 after Tax etc. Enjoyed having first few days of feeling ok but now having jaw pains and lots of pains all over body. Mouth is breaking out in ulcers too so out comes the difflam and gelclair! Hope everyone else is ok x

[maryKamille]

Hi absolutelyannie

I had 4th Chemo of Fec5 yesterday, although I have had the 'F' drug withdrawn from the time before. It is an adjuvant which simply means it makes the other two drugs more effective but also with horrible side effects - for me dental problems. Anyway, I have read on here that 'F' drug is being phased out nationally as has not proved to be very effective in itself!

I can't imagine how anyone could expect you to do those injections for yourself! I suppose diabetics learn to do these things and there are other posts on this great website of people who do their own injections. Once shown maybe it's not that difficult. Hopefully, you will get on OK. A lot of all this is expectations and waiting - by far the worst aspects.

As to surgery, I had mine before Chemo and they have to offer it within a 30 day period, I think. Once I saw the surgeon she did it in a fortnight although offered 3 week interval if I preferred. I just wanted to get on with it. Personally, I found looking back that the surgery was easier than Chemo both physically - after a month I was wearing a bra and prosthetic quite happily - and mentally, as you feel you have had the 'nasty' bit cut out/removed and can do no further damage. Of course, it isn't quite like that as we wouldn't need the Chemo otherwise, but mentally I felt better for that viewpoint.

Good luck with everything that is coming up.  Our fears are often worse than the reality if that is any comfort to you.

[Wahini]

Is anyone else working through the chemotherapy? So far I have been taking sick leave on days 1-12  and I put on my wig and go back to work days 13-21. On my sick days I have been quite active and enjoying myself a bit to be honest, I just didn't feel like sitting at a desk all day. I still don't now that I am back but I feel I have no excuse really because I feel near normal. Taking it easy though, I cannot take stress or I get hot and start sweating. Those working days are just enough to keep my work going and to keep myself in the loop.

[pastasmissus]

With FEC, I found that day 4 I was in bed with no energy and not even enough brain to be bored or listen to the radio, then it started getting better gradually. For the first two cycles by day 7 I was fine, it took til day 9 on my third cycle