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November 18 chemo starters

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Member

Re: November 18 chemo starters

Hi Liloc

 

Popped on to browse and see if anyone from our month was around and there's a new post!

 

Good to hear from you, especially now you have embarked on the oral chemo. Feel free to moan loud and long!  I feel like that is all I have done for the past 10 months anyway, it will be nice to hear someone else's moans!  I'm pleased for you that you are doing the oral chemo as belt and braces, it's nice to have something extra to help prevent a recurrence. 

 

The weather is bonkers isn't it! Although I'm still finding it warm at night, so the slightly cooler rainy weather is much appreciated. We are the same as you this year, no holiday booked, although we did go to Dorset last year (after I found my lump and before my fast track appointment) and loved it. Whereabouts will you stay if you manage to go? We were based in Winfrith Newburgh, and drove around all over Dorset, loved it there, if you haven't been before and want any tips on where to go and what to see, just shout. 

 

I'm with you on the rads recovery, no issues whilst on it apart from going red during boosts, also no tiredness for ages, then hit a wall!  Are you finding you have really dry skin?  My affected armpit feels like a reptile and very crepey too, ughh. Skin really dry anyway following chemo (I did have very greasy skin before all this), but recently I celebrated getting my first spot in over six months!! Oh, and the dark hanky mark, a very noticeable line too! It does fade though, mine is fading now.

 

Sounds like you've done brilliantly with the weight loss, that last bit will soon be off too.  I have a couple of kilos to lose but I'm not dieting either, it'll go when it's ready. Like you say, normal meals and normal exercise

 

Still having hot flushes and bloated tummy, off to see onc tomorrow, they have stopped my Herceptin due to 10% drop in LVEF from base line. I do get SE's with it, mainly aching joints, but have had runny nose and sleeplessness too. I understand it can affect the stomach and that might be why mine has not yet settled from chemo damage. My bad boob seems to hurt more these days as well, not sure what that is all about, possibly overworking myself, but I'm back wearing pull on bras as the underwires are hurting.

 

Hair is rubbish, as are nails, hair growth is slowed right down by Herceptin and I literally have about 1.5cm, it is thickening out though. Lashes are not all back and brow hairs are half length so brows look bald!  Nails are now attached completely to the nail bed, although they are so weak they break if I stare at them, it seems!  I'm still using the nail oil on them.

 

Oh you are confident going without a wig, wish I was, but great to hear that your hair growth is good.  I bet it does suit you though, hubby says I look like a skinhead so I will not be losing the wig yet!  My hair is also a lot darker than it was, so I look completely different  Smiley Surprised 

 

Also hope that some of the November ladies from chemo time pop in to update and say Hi.

 

Take care xx 

Member

Re: November 18 chemo starters

Hi all, how’s it going? Hope you are enjoying the summer, with all its heatwaves and downpours! My son’s off school and I’m still working from home so quite chilled this year. Didn’t book a holiday as didn’t know where I’d be with treatment and appointments at this point but friends have offered us their house in Dorset so hoping to get down there for a week just for a change of scene.
Recovering from rads ok, was more sore in the weeks after I finished than when I was doing it, but seems to have mostly calmed down now apart from the areas round the scar tissue which are still tender. Still using aloe vera gel which is nice and cooling. Big dark handkerchief area on one side but doubt I’ll be stripping off that much for it to show, even if it’s nice in Dorset, I’ll be keeping that area covered up.
Started my 8 cycle course of Capecitabine oral chemo yesterday 😖. All the listed side effects are the same as for IV chemo (with some hand and feet cracking added in for good measure) but have been reassured they are not as harsh. Really hope so. May come on this thread to have a moan occasionally 😂 as I know you’ll all understand. I don’t think the treatment is that common yet (been offered it as IV chemo was only partially successful so an additional treatment for early stage TNBC to prevent recurrence) so don’t think many people on the forum in general are on it so far.
How is the herceptin/tamoxifen going for you? Hope they don’t have horrid side effects.
Holeinone, Tracybev, have your vein problems eased, that was one issue I seem to have missed out on so far but still got my port in as have to have blood tests every 3 weeks.

 

Holeinone, hope the hot flushes are becoming less frequent. I had them during the menopause (3 years ago) but not with chemo. I did get bad night sweats for weeks at a time Dec to March though, to the extent that I was sleeping wrapped in towels to mop it all up so sure these drugs do have wacky effects on our bodies’ control systems. Doctors didn’t seem remotely concerned about it, even though it was making me miserable at the time. 
Hoping to go the same way as you guys for the weight loss. I put on a massive 20lbs last winter during chemo (nearly 10kgs!!!)- blame it on the comfort food, steroids, no exercise and of course the usual Xmas binge. I’ve lost 14lbs since April just by going back to normal eating, cutting out the “I deserve this pain au chocolat at 4 in the morning cos otherwise I’ll feel sick” and getting lots of walking in. However still have another half a stone to go to get back to pre-chemo weight so really hope I can be good with these chemo tablets and not pile on the weight again. One of the listed side effects is loss of appetite so I don’t mind if I get that one 😏.
How’s hair growth going? I’ve got quite reasonable all over coverage now but it does seem to point in all directions. My hairdresser gave me a No.8 cut with the clippers last week so it feels tidier now but I’m not sure how you get to grow it long without looking like a mess til it does? Gave up on my wig last week in the heat (was only wearing it for social occasions anyway) but did feel self conscious going out with such a short style. Got some nice comments about looking like a runway model, great having friends who know the right things to say 😜! Might lose my hair again with the tablets so headscarves and wig are certainly not being packed away (despite my future catwalk career).
Clarabella, good luck with your return to work. Will be strange, but a return to some normality will be good. Put yourself first though and try and get lots of rest still.
Tbird, Lou43, Kateday and any others who started back in Nov, let us know how you’re getting on if you still check in to the forum xx

Member

Re: November 18 chemo starters

Hi Ladies

 

Tracybev and Clarabella, great to hear you are both doing well.

 

Tracybev, ughh, the veins! So yours have gone like cording then? Mine in the chemo arm has turned white as it no longer functions, looks awful. It's nice to hear your hair is thickening up, mine isn't and I was going to try the castor oil treatment, may do if you feel you are having success. How are you finding Herceptin? How nice of your colleague to take on the BC work, and yes, isn't it great to get back into the swing of normal routine, can't wait till all the appointments are long gone!

 

Clarabella, sorry to hear you are waiting for genetics results, hope they don't find anything faulty there and you can just concentrate on recovery.  Hope the naughty boob calms down soon, there's not much more you can do for support than a sports bra. Sounds like a good idea to ask the nurses, hopefully they have come across this sort of situation before. My lumpectomied boob is slightly bigger than the other one, they used to be identical twins, it's all a bit odd not knowing what is going on inside!

 

Funny you should mention reactions Clarabella, I have had hayfever all my life and it's certainly worse this summer than in previous years. I also found a big insect bite on my shoulder the other day, hubby had to put cream on it for me and said it was nasty, I don't generally get bitten or react badly. Hopefully our bodies will gradually recover their equilibrium.

 

Hope everyone continues to improve xx  

Member

Re: November 18 chemo starters

Hi Ladies,

 

It's so nice to hear how everyone else is doing.  

 

Holeinone - I've been put on tamoxifen as my tumour was PR positive on the first biopsy (ER and HER2 negative).  Once they got it out and tested it again it came back as TN, but my oncologist thought the tamoxifen was the belt and braces treatment.  So I'm giving it a go.  

 

I'm going for genetic testing next week, as a result of the TN status on the second biopsy, my age and no family history.  Am nervous about the wait for the results 3 - 4 months or so I've been told and the prospect of what it coming back with a faulty gene will mean.  

 

I'm having a few issues with my naughty boob these last few weeks.  It really swelled up during the last week of radiotherapy to the point I thought the scar from my lumpectomy would burst (a bit dramatic - me?).  It was going down nicely and I saw the consultant who said it was at the lower end of swollen.  I finished rads mid-May but this last 2 weeks it's been swelling up during the day so that by the end of the day there's less of a "hole" and it's more solid, in the morning when I first get up it's gone back to being a "hole".  I've gone back to running regularly and have really increased my mileage this month so wonder if it doesn't like all the jiggling around.  Sports bras only offer so much support even the ones that I wear which are like industrial scaffolding. Might give the nurse a ring in the week just to check.  

 

Don't be jealous of the haircuts.  As someone who never had short hair before I never realised how expensive it was to have short hair.  Before my hair was lucky if it got cut twice a year, so having to go every 6 weeks is eye watering!  

 

Has anyone else noticed that they are reacting more to insect bites?  The other week something attacked me and I was left with about 8 bites on one arm and 5 or so on the other.  A trip to the pharmacist left me with some cream and the threat of a trip to the GP to get something stronger (with steroids) if the cream didn't work.  I'm already on a fairly strong prescription antihistamine so the pharmacist couldn't give me anymore.  

 

Hope everyone is doing OK, and enjoying this lovely weather.  

 

C x

Member

Re: November 18 chemo starters

Meant only wear the wig when outdoors 🙄x

Member

Re: November 18 chemo starters

Hi ladies

thought I’d pop in and say hi, have been checking in and keep meaning to write something but then completely forget ... must be something to do with post chemo !!

haven’t had any stomach issues and was lucky not to put on much weight but find my feet and ankles are really stiff first thing in the morning or if I’ve been sat down for a while. I didn’t have a picc line and although my veins were fine during chemo it was a couple of weeks after that I noticed they started to go hard and were quite painful, I do massage them and they are improving.

Holeinone like you I’m on Herceptin for a year and my hair is growing rather slowly although it is a lot thicker than it was I’ve been taking biotin tablets and using cold pressed castor oil  so maybe that’s helped, not ready to ditch the wig yet, only wear it when indoors.

I’ve been back at work since the middle of April did a phased return for 2 weeks as I’m part time so it was nice to get back to normal. I work in a Drs’s surgery and my lovely work colleague deals with all the breast oncology letters until I’m ready to start processing them again... think she’s got the better deal as I do all cardiology now !! 

Take care everyone stay strong, it’s nice to still hear from some of us 👍🙂

 

Member

Re: November 18 chemo starters

Hello ladies

 

Clarabella and Liloc, good to see you still on here, and continuing to improve.

 

Clarabella, rather jealous of the haircuts, pleased you found the younger persons course useful. I'm over 50 so not young anymore, although don't tell my subconscious, still 18 there! Glad to hear you have lost most of that chemo weight, that's good going! Hope the phased return goes well next month, are you doing very short days to start with? I had a phased return to work years ago after a hysterectomy, it was tiring at first but after a few weeks I was raring to go, it's such a useful way to get back into work. Frightening how quickly the time flies isn't it! Just passed a year since I found my lump, hopefully a date I will forget as the years go by. If you don't mind me asking are you having any other treatment now? I am receiving Herceptin for a year, halfway through thankfully!) but no other meds. The Herceptin is stopping my hair growing.

 

Liloc, I had more or less the same issues with rads, sailed through physically, then about three weeks after, lots of tiredness, and soreness in my affected boob. It will pass, but it can take months for the effects to go, so I understand. I had boosts, and until then I had no redness or discolouration, the first boost cooked me, and I was rather pink for weeks!  Also didn't need any creams until boosts, then had to Aloe my boob every day, which helped immensely.  I can understand your disappointment with the continuing treatment plan, but I agree with you and if I were in your shoes I would do the same. My Herceptin jabs were only ever offered to ladies with secondaries, now they are standard treatment for HER2 early stage women, so I had no choice in the matter but will take anything they think will rid my body of this for good. I will be on them until early January and am still wearing the wig for the forseeable future because of them. I know cape used to be for secondary ladies only too, and it looks like they are rolling it out for ladies with early stage TN. In both our cases it is unfortunately an extended regime of active treatment, but one which should prove to have massive benefits, fingers crossed!

 

Anyone else getting warm moments/power surges, whatever you want to call them? Fed up with being too hot, I think some of it is the humid sticky weather we are having but some of it is the chemo after effects for sure. Cannot wait for that to go.

 

I've just weighed myself on our dodgy old scales and it looks like another kilo has gone, so I am about a kilo away from my chemo starting weight, which is good, I certainly don't feel so bloated!

 

Take care ladies, onwards and upwards xx     

Member

Re: November 18 chemo starters

Hi all, Holeinone and Clarabella thanks for the updates, sounds like you’re both faring ok despite some niggly side effects. Isn’t it a relief now that summer’s here and we feel more able to get out there and enjoy the sunshine? 😎

I finished rads 10 days ago, it was fine during treatment (such a doddle compared with chemo) but I am suffering more side effects now- red & sore, especially where my surgery scars are round the nipple and underarm. I keep moisturising so hope it will calm down soon. 

 

Am very tired too, I thought I was getting my stamina back post-chemo but rads seem to have set me back a bit on the fitness stakes. Had a longish walk round Kew Gardens today and I’m shattered now. Hopefully tiredness is just temporary too. 

 

So have a pause now in treatment now til the end of the month but then the oncologist wants to put me on some chemo tablets (Capecitabine) for 6 months. 8 cycles of 3 weeks each 😕. The pills aren’t meant to be as harsh as the IV drugs but some of the side effects are the same - low immune system, hair loss etc. I was really fed up about it initially but now I’m being philosophical, short term pain for long term gain hopefully. I think I have to at least try and see how I tolerate it, if I did get a recurrence and I hadn’t tried it, I would blame myself. The oncologist has said we’ll review every 3 weeks when I go in to see her so reassured by that. So that’s Aug to Dec really, hopefully 2020 will be treatment free!

Member

Re: November 18 chemo starters

Hi Holeinone and all the other ladies,

 

How weird that you posted just as I thought I haven't looked in on the girls for a while.  I'll just check how you're all getting on.

 

My hair continues to grow a pace.  I've had 2 haircuts now since finishing chemo in March.  Having had long hair all my adult life, which was lucky if it got a cut once a year, and was mostly stuck up in a bun, I can say that having short hair is definitely more expensive.  

 

I went to a BCC Younger Persons event the other week.  It was really good and nice to meet other ladies of a similar age, although I suspect I was one of the older ones there.  I'd really recommend it if any of you are of an appropriate age (under 45).  

 

I'm still off work, but am looking to go back on 1 August on a phased return. I've signed up for some free courses on the Open University to try and get my brain working, although I did think half of 6 was 2.5 the other day.  

 

I've noticed that when I get over tired it's taking me at least 3 days to recover.  And when I'm over tired I just want to eat rubbish.  I put on 5kg during chemo and had lost 4kg but I suspect it's creeping back up again.  

 

The skin on my naughty boob has healed nicely although it is still a bit darker than it used to be.  It's also still swollen (lympoedema) where I had the WLE.  I have a date for my 1 year check up in September, my consultant is using the date of the original mammogram which detected it.  It's quite scary how quickly it's coming round.  

 

Am enjoying watching a lot of Wimbledon and the nice weather.  

 

Hope you're all well.  

Member

Re: November 18 chemo starters

Hi ladies

 

Just checking in to see how everyone is.  Hope everyone is getting on with recovery and enjoying the nice weather. 

 

Liloc, thank you for your response, much appreciated.  There is no moving forward course near me, there is a Haven in my county but it's only open one day a week due to funding, but they don't do that course. That's fine for me as I will work through my black moods eventually, just a personality trait! Have you finished your rads now? I hope your stair speed has improved and you aren't still causing household queues!

 

Pigeon, hope the new job is going well, and taking your mind off BC. Hope it isn't tiring you out though.

 

Clarabella, hope your suntanned boob has faded now and your skin is all healed nicely. Hope you are no longer feeling fatigued and your hair is continuing to grow nicely!  

 

I've just had my 9th Herceptin so am halfway through Smiley Surprised I do have really achey creaky joints though, and I'm sure now it is with me until I finish Herceptin, it's just something to put up with.

 

I still have tummy issues, albeit much improved. Feel like I have something stuck in my throat and herceptin nurse says it is reflux. It is getting better, but due to the tummy issues I'm not taking part in the add aspirin trial. Bowels not quite normal but getting there (apologies if TMI!) Swollen tummy has gone down in the last couple of weeks and now I just have swollen belly, but I'm not taking any medication and just letting it settle and heal on its own. I do have regular nausea attacks too, not sure what that is about.

 

Hair, well, everywhere else my hair is growing as it should, and same colour, apart from lashes brows and head! Lashes are no further forward from my last post, full set on the bottom and half a set on the top, just the short ones at either end, no long middle ones so nothing to put mascara on Smiley Sad Brows, I am still using an old brow powder and accentuating the short stubble that has grown, which looks OK. They are untidy though and at some point I need to smarten myself up in the brow dept! Head hair is a funny nondescript dark colour, very short, about a cm, with longer bits about 2cm on the sides, kind of coco the clown with hair on top! All follicles appear to be growing though, it's just so darn slow!  

 

Skin is still really dry, I've aged about 20 years, it's not a great look with the uber short hair! 

 

Teeth are hyper sensitive to hot and cold.

 

Weight: I put on about 6 kilos during chemo, roughly a kilo per chemo. I lost half of it rapidly during radiotherapy as it coincided with my appetite returning to normal and the water retention or bloating wearing off. Thankfully I was at the lower end of the BMI chart before, and still am well within a healthy range, but I've read that gaining more than 3 kilos during chemo is very bad for overall disease free recovery. Pity it wasn't mentioned when they were weighing me each time! It is going down I feel, and I can see my waist coming back just by eating normally and exercising.

 

Still have some peripheral neuropathy, and I notice when we do a lot of walking my feet go a bit numb.

 

Nails are looking more normal, nail beds are the size they should be, nails are fragile though and break easily, so I'm still using nail oil three times a day.

 

Anyway, enough chat while the sun is shining and I've got a washing machine full of clothes to get on the line!

 

It would be nice to know if some of the November ladies from the early days of the thread are OK and getting their lives back on track.

 

Take care all xxx 

 

Member

Re: November 18 chemo starters

Hi Holeinone, I feel for you. Think it’s natural that we all have our moments of black thoughts, we’ve had such a struggle and we can’t be sure if there’s more to come. However we have dealt with the bad stuff, and we should feel proud of how we coped. If everything is becoming too much, ask your beast care nurse about counselling, I was offered it when I was getting overwrought during chemo but I felt it was more a physical problem at the time and I did feel much better mentally when my body felt better. Otherwise I know you said that you were trying to avoid anything cancer related, but the Moving Forward course if it is available close to you may help much more than looking at stuff online. If you’re feeling down, please see if it can help. xx 

Member

Re: November 18 chemo starters

Hi ladies

 

Liloc, yes isn't it great not being so puffed out all the time?! Clearing the drainer left me wanting a sit down Smiley LOL Can't help myself with google I'm afraid, plus the thought that there is that one stray cell lurking somewhere. I've had no scans so how would they know? I feel BC is a double edged sword with the treatment pathway being so established and efficient, but it is the one that has the tendency to come back, very scary. 

 

Dikat, no worries re the message, I can see you are recovering nicely, and that is what you should be concentrating on. Hugs to you too the mental dips are horrible aren't they, a few good days then feeling in despair over nothing we can change, gah! Damn disease!

 

Pigeon, thank you for that info I will investigate. I always eat more protein than I should I feel, I'm not into veg, and have always had strong hair and nails too, nails are shot but recovering and my hair is growing about a mm per month, might be lucky to have an inch by Christmas, so disappointing!

 

My latest ECHO was disappointing as my ejection fraction has dropped by 7% after starting at 65%, nurse had to phone for advice before she could administer the latest herceptin. Hope it doesn't drop any further, I hate being ill, have not had any problems with the walking either and no longer breathless, the last thing i need is a medically induced heart failure!

 

Sorry it's all a bit doom and gloom here, OH I think needs someone to talk to as he's getting stressed, and I try not to overload him with my health issues and mental anguish. Probably need to find out if he can talk to someone at Macmillan, just to get it off his chest. Neither of us have accessed any help from anywhere, courses or anything, it's really not my thing, but maybe we should.

 

Take care ladies x 

Member

Re: November 18 chemo starters

Hi ladies,

 

Liloc, re: work - I start a new job on Monday, having not worked since a month or so before my diagnosis. I’m looking forward to it, I think it will be good for me ... but I’m also a bit terrified! Since it’s a new job, I won’t have the “phased return” - I’ll be jumping straight into doing five days a week. I’ll be working from home most days, luckily, but my job needs a lot of concentration (I’m a software developer) - and like Clarabella mentioned, my brain isn’t quite what it used to be, with trouble remembering words mid-conversation, etc, and finding deep concentration to be exhausting.

 

Clarabella, I’m also jealous of your hair - a pony tail!! I keep having weird dreams about my hair. The other night I dreamed that I combed it and suddenly it was shoulder length, and in the dream I was thinking, if only I’d known to comb it sooner 😂 I also dreamed that the back suddenly grew a few inches and I had a mullet 😆 which I guess is actually in the not too distant future...

 

Holeinone, I also forgot to say that in the booklet from the Look Good Feel Better course, it mentions having a decent amount of protein with your lunch to help with hair growth. Why lunch, I’ve no idea, but I figured it can’t hurt to try 🤷‍♀️

 

Funny you mention changes to nails in the past couple of weeks - mine have suddenly decided to start growing like crazy. All except that one big toenail, which I think is going to fall off at some point.

 

All the best ladies xx

 

Member

Re: November 18 chemo starters

Hi Holeinone

Popped in from Dec thread and just had an oh 💩 moment as seeing your post made me realise I didn’t reply to you when you were kind enough to message me just before my surgery so apologies for that 😘

Good to read you are doing well and fitness is improving. I too am having ongoing tummy issues...starts to get a little better then seem to take a dive again. I am having Herceptin and Pertuzumab every 3 weeks as targeted therapy so wonder if it’s linked to that!

I had lumpectomy and SNB four weeks ago. Was supposed to have got results last Wednesday but they weren’t back so appointment was rescheduled for tomorrow. Hoping for positive news and keen to have an idea when I will be starting rads as feeling in limbo. Just want to get on with things as having a bit of a mental dip at the moment. Sending hugs 🤗 

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Re: November 18 chemo starters

Hi Holeinone, glad to hear you’re getting on ok and getting back to having nice long walks without problems. Funny, til you said, I had forgotten all about being out of puff really easily, so that must mean I am so much fitter than 3 months ago! Remember when just drying myself off after a shower left me breathless! 😅

Know people always say not to Google health stuff as can just scare you, it is tempting, but with BC survival rates I really don’t think it can help, as the treatment and therefore the figures are improving all the time. I scared myself silly doing a translation for work for a pharmaceutical company which had some really negative percentage rates, but after reading it properly I realised it was for metastatic TNBC. And it was really positive about the results of a clinical trial they’re doing.  Nevertheless, my team have banned me from working on that client in the future!  

Just bear in mind we’ve all had the tumour taken out, we’re cancer free and we’re doing all the right things to stop it coming back. So all positive 💪💪💪. Sending you good vibes x

Member

Re: November 18 chemo starters

Hello ladies!

 

So glad to see we are all moving onwards and upwards! 

 

Liloc, good luck with the rads, by the time you get into the rhythm of it you will be finished!  Hope you are lucky with your skin as I was and no breakouts etc. 

 

Pigeon, have you noticed any subtle improvements in your nails the past couple of weeks? Thank you for mentioning vitamin B group, I'm not one for supplements but might try one.Hope you are now getting on top of your appetite, it's not pleasant to need to eat so voraciously.

 

Clarabella, your hair sounds great, I'm jealous! I'm sure your rads tan will start to fade soon, and good to hear that your nails escaped chemo SE's!

 

Still aching here, but I am on Herceptin, and the first three combined with Taxol nearly finished me off with pain, so I'm happy enough with the ridiculously stiff joints and old lady on the stairs (Liloc, love the thought of the queue behind you, so true!). It's every day, not diminishing at all through the cycle. However, I do notice it is worse when joints have been rested, and I am perfectly able to walk about with no pains, very odd. OH and I have gone back to walking on a Sunday morning, three or four miles, and this causes no problems. So nice to be no longer out of breath too. I feel very fit, which considering what we have been through, I'm so pleased with my recovery so far. No palpitations either, and I'm having echo's every three months due to Herceptin, my next one is tomorrow, but my last one was a really good score. Gained just over a stone during chemo, I think, as I don't usually weigh myself. Most of that has now gone. Not dieting just moving around. I believe half of the weight was bloating as it went quite quickly during rads. 

 

Still got the queasy tummy, onc thought I was putting it on as at the time it got quite painful nearer mealtimes, I could tell as I was getting very ratty, found just a glass of squash gave my tummy something to chew on and calm it down. Still having similar problems but not as severe, so I hope my digestive system is recovering slowly. My tummy paunch has gone right down, so it's obviously not inflamed as much, no excessive wind either, thank goodness!  Still have a horrid taste in my mouth, plus the sicky feeling that washes over me at odd times. Just trying to just ignore it rather than suck sweets or eat to get rid of it.

 

On the subject of oncologists, I see a different person almost every time I go, have no faith in them at all, especially as the last one poo pooed my stomach issue. I'm not one to pop pills or even draw attention to myself by going to the GP but to have someone say it obviously wasn't as bad as I said it was when they have never had chemo, just wanted to slap him basically! 

 

Hair, I am still wearing my wig to go out and a beanie in the house.  I have a ridiculously short pixie cut, hair is dark and not grey so that's a plus! Growing so slowly but I've been told by the Herceptin nurse that this is why. It's frustrating as my hair used to grow quickly. Shaving my legs again though, lady garden sparse, lashes are all present on the bottom but not the top, what's that all about! Eyebrows are still being shaded in as they are missing the middle and the hairs are all half length. 

 

Nails, my toenails are completely fine. All my fingernails were extremely sore during docetaxel and after chemo finished they lifted so the white part extended halfway down the nail bed, I'm wearing varnish now as they looked bad, but they are growing at normal speed and no longer sore. In about a month I estimate they should look normal, hopefully.

 

I have actively avoided any courses to do with BC, I don't really want to know to be honest. I probably sound mad but I really don't want any special treatment, I just want to get on with life. I have been quite depressed about it all, googling all the wrong things. I did put my details into an NHS site (predict?) and was a little scared at my percentage chance of being here in 10 years, so I looked at the stat history and could work out the progression of stats and it looked a lot better!

 

Onwards and upwards ladies!

 

xxx

 

Member

Re: November 18 chemo starters

Hi all, glad to read your updates. Our leftover side effects sound very similar, which is comforting in a way I guess 🥴. At least I don’t feel like a total freak 😊. I too am very stiff, especially when I get up in the morning - the other day my husband and son had to form a queue behind me on my first trip downstairs.
Also still have an indigestion thing after I eat, not so much heartburn as feeling sick. Really can’t pig out any more (had a delicious takeaway the other night and really suffered for it afterwards). Still, it is a reminder that I am trying to lose weight so feeling yuk after eating too much is probably not all negative. I too gained about 20lbs during chemo, all that comfort food, steroids and a complete lack of exercise for weeks at a time when I was just crawling between bed and sofa. I am doing some long walks now and getting stronger - although after two walks with dog owning friends on consecutive days I was so stiff I wasn’t sure the exercise was doing me any good!
Aesthetic leftovers - hair is growing but still have a bit of a monk look which isn’t great, my hair was a bit thinner on top before chemo and that’s where it’s struggling to grow back, hopefully it will. So still wearing headscarves and my wig when out and about, although don’t bother in the house. Eyebrows and lashes are back to normal which is nice after losing them completely, feels much better. I do seem to have much more peachy fuzz on my cheeks than before which isn’t a welcome development (making up for the lack of hair on my head?).
I’ve finally started rads! 🎉 🥳🎉Not most people’s reaction, but I just wanted to get on with this stage. Had my first session of 15 on Friday. All went well, my shoulder on my surgery side ached a bit holding it above my head but apart from that, very doable. Have a bit of a trek up to Chelsea from the ‘burbs so 3 hours a day on train and tube for about 15 mins treatment but can’t be helped. I am going to get some lifts up to town with friends, lured by the idea of coffee or lunch on the Kings Road so that’ll make more of a day out of it sometimes.
I am going to try working through it, my appointments are generally early afternoon so I can work some hours in the morning before I go but I’ll see how tiring it gets.
Are you back at work normally yet? My doctor has given me another 6 months of ‘adjusted working conditions’ so I will carry on working from home for a while yet.
Hope you’re all well and feeling stronger day by day 💪💪x

Member

Re: November 18 chemo starters

Hi Ladies,

 

How are you all doing?  Hopefully recovering well after all the treatment and surgery.  

 

My skin has mostly healed after radiotherapy.  My boob does rather look like I've been sunbathing still though but only from the nipple down.  It's an interesting look.  

 

I've had very few other side effects.  My hair is growing at a rate of knots.  Having had it cut from mid back length to a bit of a pixie ish cut (a bit like Portia De Rossi) in anticipation of chemo, I managed to keep most of it with the cold cap.  I've already had it cut once since I finished chemo in March as you could pull it back into a very small pony tale and quite frankly I was starting to look like Worsel Gummage. Having said that I notice my head starting to burn after maybe 20-30 minutes in the sun.  

 

My eye brows and eye lashes are also growing back too.  I'm back to shaving my legs although hair in the lady garden area is slower to return.  

 

My nails are fine, although I have white lines on some of them.  One of my toe nails is a funny colour but I'm not sure if this is down to all the nail polish I used on it. 

 

I'm still getting fatigued quite a bit, so if I have to do anything that requires concentration for over a couple of hours I then need a nap. 

 

I am having memory recall problems in that I'll be talking to someone and I will just stop as the word I need has vanished and I can't remember what it is.  It's as if the words hide from me.  My ability to do mental arithmetic is also not what it used to be.  The other day I thought 4 * 5 was 24.  I knew it was wrong but I couldn't tell you what the right answer was.   

 

As for hot flushes and the medical menopause.  Only at night (so far).  Some times I'll wake up like I'm on fire but not sweating (i call these my dry flushes) and other times I'll wake up dripping in sweat.  Within seconds of both I'll be so cold that I'm trying to wrap up in the duvet.  No sign of periods returning yet though.  

 

I am on Tamoxifen.  It's a bit of a weird one - my original biopsy results were ER & HER2 negative and PR positive, but the second biopsy they did post surgery came back as triple negative.  So the consultant and radiotherapy Dr are treating me a TN but the oncologist wants me to take Tamoxifen as a precaution on the basis that there were come cells that were hormone positive.  He did say that if it really doesn't agree with me then if I have to come off it I can.  

 

The only weird ache I have is around my back, at lower rib level on the naughty side.  I had back spasms during the chemo (probably not related) and there's just one spot that won't settle down.  I mentioned it to the oncologist and he had a quick look and said he wasn't concerned.  

 

Well after a lovely, sunny, weekend visiting my family for the first time in a year - I live about 300 miles away from them and wasn't allowed to travel down whilst on chemo - I've returned north to a lot of rain.  

Kip Community Champion
Community Champion

Re: November 18 chemo starters

Glad to know I am not alone Pigeon!   How I miss springing out of bed of a morning.   I think the stress and tension in the shoulders is a big part too, I know I hunch up, especially when I am working and its so much better when I get out for a walk and relax a bit.

Kip

xx

Member

Re: November 18 chemo starters

Hi Kip,

 

Yes - that sounds exactly the same! If I’m up and about, I’m fine, but if I sit down for awhile everything seizes up. My neck and shoulders have been playing up too, especially the past few days. I don’t know if I need a new pillow, or if it’s just that I’ve always tended to hold tension there when I’m stressed, and I suppose in combination with the side effects of treatments, it’s making it feel worse.

 

I’m on anastrazole and monthly zoladex injections, but I guess it’s a similar thing with the induced menopause. I’ve been taking cod liver oil tablets, but I’m not sure if they’re helping at all.

 

It’s not too bad, but I used to be able to just spring up off the sofa and I really miss that!

Kip Community Champion
Community Champion

Re: November 18 chemo starters

Hello Pigeon, hope you don't mind me jumping in but I just read your post and I too suffer with the old lady joints and made the moaning noises when getting up.  First thing in the morning is terrible, feet, ankles, knees, hips, and lately shoulders and neck too.   I feel ok when I am up and doing things but if I sit for too long I just stiffen right up.   I am on Tamoxifen (and also had chemo and rads too) and my nurse said its the Tamoxifen induced menopause and SEs from the chemo causing it and not a lot they can do about it.. great.  I take Glucosamine and Chondroitin and also a Magnesium and Zinc supplement but not sure if they help or not really.  I guess in the scheme of things is manageable but would love just one day without the stiffness.

Hope yours aren't too bad.

Kip

x

Member

Re: November 18 chemo starters

Hi Ladies

 

Re: the dodgy tummy - yes! It’s not every time I eat, but I do get exactly as you say - light headed, tummy ache, and sick feeling. Also sometimes I get palpitations with it. I haven’t seen any doctors since the stuff with the lump on the other side, but will mention it at my next appointment in June and see what they say. Unfortunately since I started being able to taste food again, my appetite has been voracious. I’ve gone on a bit of a diet, and lost 6 lbs, then fell of the wagon and gained a couple back 😣 I have around 20lbs that I gained during treatment that I could do with shedding.

 

My fingernails thankfully made it through intact, but ugly 😆 - they’re discoloured, have lots of those little white spots, and some of them have deep ridges. I have a toenail that’s giving me trouble - it hasn’t grown at all since sometime during chemo, is weird and kind of sunken in looking, and sore if I walk around too much or if I accidentally kick something.

 

Hot flushes - ugh yes. Also the “cold flushes” when I’ve cooled myself down too much and am suddenly freezing. These started for me towards the end of chemo. I still get them, but I started hormone treatments after chemo, so that’s probably causing them too in my case. On the Moving Forward course, the nurse recommended taking a bath before bed - not too hot and not too cold, to help regulate your temperature and relax before bed.

 

My eyebrows are fully grown - they had almost completely fallen out, and took their time to make an appearance, but once they started coming in, I found that they grew quite quickly. I was surprised at the difference eyebrows made to how I look. Re: hair - mine is growing fairly well. The nurse on the moving forward course said B vitamins help with this - most days I either drink a berocca, or take a “skin hair and nails” vitamin. That said, though... I’ve had long hair since I was a teenager, so I still don’t see “myself” when I look in the mirror and see short hair, and it upsets me to think that it’ll be years until it’s long again. I also have no idea how to style short hair. I still wear the wig most of the time when I leave the house.

 

Is anyone else getting general aches and pains? I don’t know if it’s leftover from chemo or if it’s the hormone treatment, but (especially in the morning) I’m hobbling around like an old lady, and I groan when I get up from sitting/laying down!

 

All the best ladies xx

Member

Re: November 18 chemo starters

Hi Ladies

 

Re: the dodgy tummy - yes! It’s not every time I eat, but I do get exactly as you say - light headed, tummy ache, and sick feeling. Also sometimes I get palpitations with it. I haven’t seen any doctors since the stuff with the lump on the other side, but will mention it at my next appointment in June and see what they say. Unfortunately since I started being able to taste food again, my appetite has been voracious. I’ve gone on a bit of a diet, and lost 6 lbs, then fell of the wagon and gained a couple back 😣 I have around 20lbs that I gained during treatment that I could do with shedding.

 

My fingernails thankfully made it through intact, but ugly 😆 - they’re discoloured, have lots of those little white spots, and some of them have deep ridges. I have a toenail that’s giving me trouble - it hasn’t grown at all since sometime during chemo, is weird and kind of sunken in looking, and sore if I walk around too much or if I accidentally kick something.

 

Hot flushes - ugh yes. Also the “cold flushes” when I’ve cooled myself down too much and am suddenly freezing. These started for me towards the end of chemo. I still get them, but I started hormone treatments after chemo, so that’s probably causing them too in my case. On the Moving Forward course, the nurse recommended taking a bath before bed - not too hot and not too cold, to help regulate your temperature and relax before bed.

 

My eyebrows are fully grown - they had almost completely fallen out, and took their time to make an appearance, but once they started coming in, I found that they grew quite quickly. I was surprised at the difference eyebrows made to how I look. Re: hair - mine is growing fairly well. The nurse on the moving forward course said B vitamins help with this - most days I either drink a berocca, or take a “skin hair and nails” vitamin. That said, though... I’ve had long hair since I was a teenager, so I still don’t see “myself” when I look in the mirror and see short hair, and it upsets me to think that it’ll be years until it’s long again. I also have no idea how to style short hair. I still wear the wig most of the time when I leave the house.

 

Is anyone else getting general aches and pains? I don’t know if it’s leftover from chemo or if it’s the hormone treatment, but (especially in the morning) I’m hobbling around like an old lady, and I groan when I get up from sitting/laying down!

 

All the best ladies xx

Member

Re: November 18 chemo starters

Hi ladies

 

Pigeon, thank goodness that lump was a benign cyst, I'm so pleased for you, I can imagine the worry and sheer frustration after all we have been through on this effing journey.

 

Liloc, glad to hear your surgery went well and that it was a lumpectomy in the end. I'm sure you will find rads easy peasy after chemo. I had no redness until they started my boosts then just red and sore for a few weeks afterwards, like bad sunburn. No peeling so that was a bonus. Didn't use any creams on my boob until boosts, then started with the aloe vera.

 

Clarabella and Lou43, hope your rads burns are now healed and your skin has recovered.

 

Hope everyone else continues to improve and thrive! 

 

Side effects, please feel free to share yours if you still have any, these are mine: 

 

Hair growth is a funny one, used to have fast growing hair, now I have a 5mm fringe and it tapers to about a cm at the back and above my ears, not impressed with the slow growth at all. It didn't even start growing dark until 10 weeks post chemo. I should be thankful that all the follicles have something in them though, even if it's so short that the light shines off my scalp. The fine pale fluff has given way to dark hair too. Hate the wig and really want to ditch it but I don't want to go out looking like a victim. Lost pretty much all my eyebrows, had a couple of longer Dennis Healy ones to help guide me with the powder I am using to fill in  In the past 10 days or so I have grown all my bottom lashes and the top lashes by the corners of my eyes are in too, yay! Brows are half in and very short, so still filling in with powder. Hair everywhere else has sneaked in while I wasn't looking too, surprise!

 

Does anyone else still have bloating and an upset tummy? My voracious chemo appetite crashed just after I started rads and I lost half a stone in a couple of weeks, however, my stomach is still grumbly and upset, and I have a little bloated paunch under my bust. Tummy now has a grumble about an hour after eating, makes me feel ill, a little faint and lightheaded and sick too, no reflux or wind anymore, just this niggling pain. Saw an oncologist (another different one), last week and he was unhelpful, wanted me to have a gastroscopy, also mentioned recurrence three times and asked if I wanted him to examine me. Odd. Still have residual nasty taste in mouth too, I'm hoping it's slowly decreasing over time and that's not just wishful thinking. Because of the tummy trouble I have had to pass on the aspirin trial, I really didn't want it to upset my stomach anymore and to let it heal.

 

I'm having a few hot flushes a day too, anyone else? Although I'm not hormone positive so no hormone blockers, I think it's just the overall chemo damage to my body. Don't get any raging night time flushes though, so hopefully it's something time will heal.

 

fingers and toes, still got peripheral neuropathy at both ends, feet go a bit numb too after a long walk. Fingers are a bit better, but I've struggled to sew as pins and a needle are really hard to pick up as I can't feel the too well. 

 

Nails are shocking, all fingernails lifted so there was less than half the nail bed with nail still attached, am now wearing nail varnish all the time! Toenails are fine so it's definitely to do with UV light as it has to be very hot for my feet to be de socked!  

 

I've been looking at things on the internet I shouldn't and worrying myself silly, just can't help it sometimes, must remember that 10 year survival stats are by the very nature now old and out of date!

 

Stay well ladies xx

 

Member

Re: November 18 chemo starters

Hi all, how are you getting on with all your injections and infusions? I had written something last week, got distracted and then it all disappeared, will try to click send this time before moving on to something else on my phone 😜. 

Still got rads to do, think I’m the last one in this group. Didn’t realise there was such a long gap between the planning session and actually starting (start on 7th June so will be going in til the 27th). Not worried about it, think after chemo I can do anything 🦸‍♀️😂.  Found the planning session quite surreal, lying under the machine with two radiographers with felt pens drawing all over my chest. At one point I nearly got the giggles. Have to practice holding my breath for 20 seconds at a time to keep heart away as lump was on my left side but all doable I think 🤞. Might be tiring having to commute up to South Kensington every day (have to go to the Royal Marsden’s Chelsea hospital) but might go up with different friends with the excuse of having a coffee or sneaky lunch on the Kings Road sometimes to make more of a day out of it 😊. 

Let me know how you’re all getting on, Holeinone nice to hear from you again. xx

Member

Re: November 18 chemo starters

Hi Holeinone,

 

Good to hear from you, I’ve been thinking of you. Totally understand the need to step away from the cancer stuff, I’ve felt that way myself.

 

Glad to hear your rads went well physically. I’ve got the tan as well, which seems to be fading (I had my last rads 5 weeks ago) and a bit of peeling. We were told no creams at all during treatment, and I’ve only just started applying e45 to the area, which has helped to calm any itching.

 

How is your hair growth getting on?

 

Member

Re: November 18 chemo starters

Hi ladies

 

Good to see you are all doing well, and sincere apologies for going AWOL. I hit rock bottom mentally at the start of rads and the only way I found to deal with it was to distance myself from anything cancer related. 

 

I will have a thorough read through all your posts now to find out how you are all doing.

 

If anyone is due to start rads soon, I found it fine physically, I didn't even get the energy slump they warn you about until a few days after I finished, and then only a couple of days of tiredness. I used no creams during the 15 normal rads, but used aloe vera gel once a day after my boosts, in the evening after my shower. I am now over a fortnight past my last rads and no blistering but I do have a tan on one side, and even that appears to be fading.

 

Stay well ladies xx

   

Member

Re: November 18 chemo starters

Hi, oh Pigeon I’m so relieved for you, great news!  Onwards and upwards now! 

 

Thanks to you all for your radiotherapy tips, have the planning session on Weds. Not sure how quickly I will start after that which is a bit annoying as can’t really make any plans for the next few weeks until I know my appointment times.  Coffees to have, cakes to eat, etc 😄☕️🍰.  Have booked half term off  work anyway as also my birthday that week and I haven’t used any annual leave yet this 

year.

Hoping my surgery has all healed sufficiently for rads. The area around the cut on my boob is still lumpy, not sure if that’s normal (still swollen? Seroma?) although the one under my armpit has healed completely. When I first had it done, my armpit was really red and sore from rubbing on the dressings, I used baby powder on it which really helped (well, it works for nappy rash!). Might be too drying to use after radiotherapy for your bra/gardening chaffing but I found it soothing.

Glad to hear the hair regrowth is going well. We’re getting there! xx

Member

Re: November 18 chemo starters

Just catching up with messages ladies.

That is great news pigeon, so pleased to hear that. What a relief for you!

I have also found my skin has got much worse in the last 2 weeks since I finished radiotherapy and also have some skin peeling in my armpit. Applying the cream twice, sometimes 3 times a day so fingers crossed it eases soon.


Well done on running your park run again Clarabella. I bet that gave you a boost. I'd like to start doing some short distances again but have just gone back to doing more gardening work so finding this is using up most of my energy for now.

 

Have been managing on Tamoxifen and had my 2nd monthly injection last week. My hair is now a short, grey pixie crop and have been getting lots of lovely comments how much it suits me. I've been most excited about seeing my eyebrows and eyelashes coming back and they seem to have grown back pretty quick.

Hope you ladies are doing ok. It's been such a tough 9 months or so for all of us. Keep strong! xxx
 

 

Member

Re: November 18 chemo starters

Hi Pigeon,

 

I'm so pleased to hear your good news.  I can't imagine how relieved you must be feeling.  

 

I spoke to soon about my good skin.  It's starting to breakdown under my boob, it's on the line where my sports bra goes so I think it may be friction rather than anything else.  Stupid thing is that it doesn't hurt but they've given me a massive plaster to put on it to keep it dry.  I hadn't been moisturising that far down onto my rib cage, so top tip there for Liloc and anyone else still having rads.  Will ask about using vaseline or body glide when I go tomorrow around the rest of the bra line and under arm to stop it rubbing.  

 

X

Member

Re: November 18 chemo starters

Hi Ladies

 

I had a letter through - good news! It’s a “benign cyst with no worrying features”! I have to admit, I broke down in tears (happy ones!) when I read that. Now I finally feel like I can move on.

 

Thanks so much for your thoughts everyone, I don’t know how I’d have got through all this stuff (chemo included) without this thread and you lovely ladies. xx

 

Re: hair - my hair started growing in January, during docetaxel. Its grown to around 2cm and seems to have slowed right down, however it does seem to be getting thicker. I did end up trimming it back in...March, I think? not long after we talked about it on here, which helped to even it out. I can just about brave going to the shops without a hat/wig now, but if I’m going to visit family/friends I have to have it covered.

 

My eyebrows are growing in so strangely - I had half of each brow suddenly sprout (from the inside by my nose to just above my pupil) but the outsides are still fairly bare. I’ve had to start plucking them, too, as unfortunately all the wayward hairs around my brows have spouted as well. 😆 I didn’t miss that during chemo!!

 

Re: rads - I think I’d have been fine working during treatment - especially if you can work from home. Like Traceybev said, the biggest pain was the travelling to the hospital.

 

Also, just a word of warning ladies... if you have treatment below your armpit, try not to let your arm rub the area too much! I went digging in the garden and ended up with a friction burn under my arm which is now peeling off. Also, it’s true when they say the treatment continues working for 2-3 weeks after your last zap - I finished rads with a bit of a suntan, and then over the weeks the area got to be quite red, and itchy at times! And I’ve had to stop wearing a bra for now, as the rubbing is quite sore.

 

Have any of you been on the Moving Forward course? I’m off to the first session this morning.

 

All the best ladies xx

Member

Re: November 18 chemo starters

Hi Liloc

Yes we are a quiet bunch aren't we !

Good luck with your rad's meeting this week, I finished  on 29 March seems a long time ago now. I did ask my oncologist if I could go back to work before they started but he said no because of the fatigue and to be honest I didn't feel tired at all and would have been able to work at the same time it was just the travelling to the hospital every day that was a pain.

Like Clarabella I cold capped but did lose a lot of my hair about 70 to 80% had 2 big bald patches and after the 6th T what was left actually started to fall out 😧 which I wasn't expecting but it's growing back now....not enough to go wigless yet but head is completely covered

Good luck with your last week of rads Clarabella 💪👍

Pigeon thinking of you hope everything's ok 

xx

 

Member

Re: November 18 chemo starters

Hi Liloc,

 

Good luck with the rads planning meeting.  I've got the 5 boost sessions left, so finish a week today.  My skin has just started to go a bit red and a little sore.  The radiographers have said that I have good skin for it only to start going red after 14 sessions.  It's a compliment of sorts! I have been using Aloe Vera on it every day.  

 

I haven't worked during rads.  I have to say I have been more tired/fatigued on rads than I was during chemo.  This maybe in part due to the disrupted sleep I'm having due to hot sweats from the medical/peri-menopause.  My rad appointments have mostly been in the middle of the day too, although were I working I'm sure I could ask for appointments at either end of the day. 

 

Pre diagnosis I used to run long distances, so I was reasonably fit.  This fitness probably carried me through to January.  As I had my op first I wasn't able to run from October to December.  During chemo I went to parkrun two Saturdays out of the three in between each round.  As the chemo went on I went from running the whole thing, albeit much slower than pre-C, to run walking.  Two weeks ago I ran the whole thing for the first time since pre-diagnosis, although I was visiting a friend in Birmingham and their park is somewhat less "lumpy" than we have in Yorkshire.  

 

Hair regrowth is an interesting question.  I cold capped and kept about 50% or more of my hair - it thinned and no one else would have known I'd lost any.  Bizarrely, I lost all the hair above my ears on both sides.  It's been growing back, probably since chemo 5, and the new stuff is currently 2 - 3 inches long.  I've booked in for a hair cut next week after rads have finished. 

 

My eye lashes held on until after chemo 6 and then I didn't notice them falling out.  They are however making a come back.  My eyebrows thinned - think Nigel Mansell level of eyebrows pre-chemo - and they're coming back quickly.  Hair in other areas (legs, under arms, etc) is also coming back.  

 

I do hope Pigeon is OK.  I'm keeping everything crossed and sending good thoughts her way.  

 

 

 

 

Member

Re: November 18 chemo starters

Hi, you’ve all gone quiet, hope that means you’re all well and making the most of things post chemo. I am certainly feeling better, feel like I’ve got a bit more umphh and able to do more. Still some sensitive fingers and toes and indigestion but generally ok. Clarabella, do you run the 5K on your Parkrun? I used to do it before chemo but I haven’t tried since, not sure if I could even walk round it yet as my stamina really suffered from 5 housebound months. 

I have my radiotherapy assessment on Weds 15th but not sure when I will actually start, I presume not long after that.  You must have all finished or be coming to the end of your courses by now?  Were you all working through radiotherapy? I am presuming I can (just translating from home rather than go into the office) but I’ll have to see how it fits with appointment times too as I have to commute up to a London hospital for my rads. 

How is hair regrowth going? Mine’s very slow, it’s all a bit sparse still so won’t be venturing out without the wig or headscarves for a good while yet. I keep remembering the hair regrowth blog when she got to about week 5 or 6 and said it must classify as the world’s most boring blog. 😁 However, good news, my eyelashes and eyebrows have grown back which is nice - so much so I even went to have an eyebrow shape as they were growing back all over the place. Look nice now which has given me a boost. 

Pigeon, any news from your biopsy yet, keeping everything crossed for you. 

Have a nice bank holiday weekend. xx

Member

Re: November 18 chemo starters

Hiya, hope you’re all doing ok. Pigeon, will be keeping my fingers crossed for you til you get your results, sounds like they think it will be ok though. Although it’s not great they’ve done a biopsy, it’s better to be safe and check out anything dodgy as quickly and thoroughly as possible. 

I got good news from the surgeon at my follow up yesterday, she got clear margins and I am rid of the lump. 🎉🥳🎉Lymph nodes also clear so she doesn’t need to go back in 😅. So the curative part done, now on to the preventative which wasn’t quite as positive. Saw the chief oncologist too which I wasn’t expecting, she wants me to do 6 months of oral chemo after radiotherapy (which was planned) with 8 3-week cycles of Capecitabine tablets.  So that was a bit of a blow (reason they left the port in I think rather than just for the bone strengthening infusions as it will involve blood tests in every cycle as before). And there’s a clinical trial she’d like me to do as well. All up to me of course but because my BC’s triple negative, they want to give me all the preventative options. Can decide after rads, maybe I’ll just do a round or two of the chemo and see how it affects me but if the side effects are anything like before, I don’t know If I can hack it.  

Was hoping to be all done and dusted after rads, but looks like the rest of 2019 could still be hospital-focused. 

Still, a lot to feel positive about so I’d better just enjoy the moment, OH and I had a celebratory glass or two last night  🥂.

Member

Re: November 18 chemo starters

Hi Pigeon,

 

I'm glad that your team are as positive as they can be.  I was thinking of you on Thursday.  

 

I've had 6 of my 20 radiotherapy sessions.  I had to have one today due to the bank holidays, I did make them change the appointment time to later in the morning so I could go to parkrun first.  

 

It was weird to see the hospital so quiet although, as a bonus, I was able to get a car parking space without having to go to the top floor of the multi-storey.  No apparent side effects yet but I've been using Aloe gel from Holland & Barrett on it twice a day.  The travel to and from the hospital is the worse bit.  

 

Hope you're all able to enjoy the glorious weather, with the appropriate sunscreen on of course!  

 

xx

Member

Re: November 18 chemo starters

Hi Liloc

 

Glad to hear you’re recovering well from surgery! Do you have radiotherapy next? I’m a week on from my last session, and I have to say, I agree with those that say the hardest part was going to the hospital every day. The side effects for me have been minimal, it was a breeze compared to chemo! 

 

I had two cysts drained yesterday (apparently I have lots and lots of little cysts, they drained the two biggest)..... and a biopsy taken of another lump. The radiologist said she thought it was a fibroademoma (which is normal and benign), but I apparently have dense breast tissue which meant she had trouble getting a clear picture. So given my history, they’ve taken a biopsy as a precaution.

 

They were generally positive and reassuring, they said it’s probably nothing to worry about. They said it would be extremely unlikely to be cancer, given that I’ve just had chemo... but they wanted to take a biopsy just to be on the safe side.

 

So it’s probably good news... and I know it could have been a lot worse... but I still had a biopsy, and I still have a worry in the back of my mind, and another long two weeks to wait for results. 🤦‍♀️

 

 

 

Member

Re: November 18 chemo starters

Hi there, hope it’s a lovely sunny morning where you are☀️ 😎☀️ and you’re all feeling fit and well enough now to get out there and enjoy it.  

I’m recovering well from the WLE, bit tight under the armpit but doing my exercises and not too sore. Been more active, some nice short walks with friends. Still got indigestion but trying to eat less, need to start losing some of that extra weight too. I do so love eating though....🤣 Got a weekend of seeing friends and family centred around meals so got the Gaviscon at the ready! 

 

Hope this week of injections and rads went well for you all. Pigeon, I was thinking of you yesterday, were they able to tell you anything? Did you have to have a biopsy? Really hoping they were able to give you some good news 🤞. 

 

Have a lovely long weekend X

 

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Re: November 18 chemo starters

Hi ladies, hope you’re all well, and enjoying the sunshine 🌞 

 

Liloc, glad to hear your surgery went well. That’s strange about the port though! I would have thought they would want to cut down on the number of times they put you under general anaesthetic. I had a PICC line, and my chemo nurse said that the zoledronic acid isn’t damaging to veins, so it’d be fine to go in through a cannula once I had my PICC line removed.

 

Lou43, I have my second zoladex injection today and I’m oddly nervous about it! I noticed last time, the nurse was careful to keep the needle out of my sight. I’ll be careful not to look at it today. 🙈

 

Thanks for the positive thoughts everyone! 💕 I have my appointment at the breast clinic this Thursday. It’s a “one stop” appointment, so hopefully I will have some good news going into the Easter break. 🤞

 

All the best xx

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Re: November 18 chemo starters

Hi Liloc

Glad your lumpectomy went well and you didn't need to spend the night in hospital !, yes having the same as you the zoledronic acid. Having an echocardiogram on Tuesday as I'm on herceptin and it can affect the rhythm of the heart, so having 2 different hospital visits this week as injection is also due 🙄

Xx

 

 

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Re: November 18 chemo starters

Hi all, how’s it going?  Thanks for your good wishes. Had my lumpectomy and lymph node biopsy on Thursday. In at 7am and let out at 6.30 so glad I didn’t have to stay in. Think it went ok but won’t know til I see the surgeon after Easter. Still a bit snoozy, probably from the general anaesthetic so napping a lot. Not particularly painful, a bit sore under the armpit but I think that’s more where it’s rubbing on the dressing. Quite tight masking tape on, I look ready to be painted! But in general much more doable than chemo! 

 

Still have my port, I had been expecting that to come out at the same time but the team thought it would be better for me to keep it in for now. I will be having a bisphosphonate drug, zoledronic acid, every six months for 3 years for my bones (Tracybev, is that what you’ll be having?) which is IV but I don’t know if that means keeping the port in for another 3 years! Sounds a long time! Bit confused on the morning of surgery and I was a bit disappointed not to get it all done and dusted in one theatre trip,  so wasn’t really asking the right questions....

 

Glad rads are going ok for you, Lou43. Laughed at your muddled words. I’m repeating things which is a bit worrying as normally my 80-year-old mum’s speciality. I repeated the same comments to my OH and he asked if I’d had my brain operated on instead of my boob .... I’ll blame it on the anaesthetic for now....

 

How was your first session of rads, Clarabella? Hope it went smoothly. 

 

Pigeon, nice to know you’ve finished rads now, really hoping you get your appointment soon, such a 🤬 that you have new worries when you should be celebrating. Sending you positive vibes xx

 

Hopefully I’ve got a relaxing, lazy week in store, not working and there’s the long Easter weekend so can chill for a while. My son’s off school hogging the TV on the Xbox and I have to nag him a bit about homework but apart from that hoping for a nice week. 

 

Have a good Sunday!

Liza

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Re: November 18 chemo starters

Hi ladies,


Keep meaning to post then something crops up so finally checked in to see how you're all doing.

 

Will be keeping everything crossed for you Pigeon that they're cysts. Good luck with the final two appointments. I'm finding this week's appointments have flown by too and managing ok. Some days I feel more tired after treatment but keeping more active and drinking plenty of fluids seem to help. Day 6 of 15 tomorrow. The daily trips to the hospital did seem daunting at first Clarabella, but once you get used to where you're going and hopefully your appointments will run to time most days like mine.


Getting used to taking the tamoxifen daily too but am so much more forgetful than I was and getting my words muddled too. I told my little boy to put his 'tunas' on instead of his 'trainers' today which he found very funny!

Also had the first Zoladex injection on Tuesday morning which I had been a bit anxious about. It was fine, I just didn't look at the needle as advised by the nurse.

 

Hope everyone else is doing well and hope getting to enjoy the sunny weather. xxx

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Re: November 18 chemo starters

Hi Ladies

 

Clarabella, I can’t believe how quickly these treatments have gone! Only two to go. My appointment times were all over the place rather than a set time every day - most have been afternoons/evenings, but I had one in the morning. The good thing about the morning appointments is, it’s nice and quiet on the unit - they’re less likely to be running behind.

 

Traceybev and Liloc, I thought the same about the chemo... I went through four months of 💩, surely a new tumour can’t develop while I have that stuff in my system?! 

 

I still haven’t had my appointment through... I’ve had a bit of a run-around with it. You would think the breast unit would whisk me in quickly since I’m already a patient with them... but apparently they can’t book me in to the “one stop shop” themselves, I have to be referred on the two week wait. They said to mention it to the radiographers, who got me an appointment with the oncologist, who then referred  me. The onc actually sent a text message to my breast surgeon while I was sitting there - so I was hoping that would help get me through quickly... but I’m still waiting for the appointment. Such a pain!

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Re: November 18 chemo starters

Hi everyone 

 

Liloc, yes finished rads on 29 March boob is still “sun tanned” and has been a little sore as radiation still working 2/3 weeks after treatment finishes. I’m having herceptin injections every 3 weeks and I’ve worked out they will finish day after Boxing Day, started Letrozole tabs this week and onc says as they thin the bones I will be having an infusion every 6 months to thicken them up for the next 3 years  🙁... Good luck with your WLE tomorrow Will be thinking of you 🤞🤞

Pigeon, so sorry to hear about the new lumps like Liloc I also thought with the chemo blasting away the cancer cells that nothing nasty would be on the horizon so soon, hope you hear from the breast clinic asap fingers crossed that it is just another cyst 🤞🤞

Clarabella once you get the first one out of the way you will be fine, it’s the daily trek up to the hospital  that I was glad to see the back of, most days I was in and out in 15 mins 😊

Xx

 

 

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Re: November 18 chemo starters

Hi all, how are you doing?

Pigeon, glad to hear you are coming to the end of rads but so sorry about the new lumps. I assumed we couldn’t get new tumours with chemo or so soon after;  I thought it was systemic treatment in that it killed cancer cells all over the body... the main selling point for going through all that 💩.  Anyway let’s be positive, hopefully it’s nothing. I have a history of cysts too and I couldn't tell the difference between them and the BC. Sorry you have to wait for the referral, could your breast care nurse not ask to get you seen quicker? You really don’t need the stress of waiting.  I’ll keep all my fingers crossed for you 🤞🤞🤞

Tracybev, I guess you have finished rads by now? Is that the end of treatment for you? Hope you are having a lovely time with your new granddaughter. 

Holeinone, Clarabella and Lou43, think you are all in the middle of rads still, hope it is going well and not too tiring. Have you got over most of your chemo side effects now and getting some stamina back?

I’ve still got my horrible indigestion thing, maybe if I stopped eating I wouldn’t feel sick - and lose some of that extra weight!

Got my WLE tomorrow, surprisingly not nervous at all really. Had the dye injection this morning, the needle actually hurt a lot but I didn’t cry! I must have got much hardier about medical procedures in the last six months, in October I would have been a sobbing wreck! 

Tbird, hope your recovery from surgery is still going well. Yes, totally agree with you that chemo was the worst thing I’ve ever done, that’s probably why I’m not freaking about tomorrow as think the worst part of the treatment is behind me. Will be glad to tick off another stage though. 

xx

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Re: November 18 chemo starters

Hi Pigeon,

 

Wow, you motoring with the radiotherapy.  I start mine on Friday.  Am quite nervous.  Not sure if that's the thought of the unkonwn again or the fact that my appointment is at 8.30am, so I'm going to have to a) get up and b) have fun with rush hour traffic.  I'm toying with the idea of getting there super early and having breakfast there.  At least I won't be late.  

 

I'm sorry to hear your other news.  I hope it turns out to be another cyst or something equally uninteresting.  Cancer really keeps on giving, doesn't it. 

 

It's funny, I've had more aches and pains in my good boob than the naughty one since this whole thing started, especially since finishing chemo.  All the nurses and Drs keep reasuring me that it's nothing but unlike you I've not had any scans etc since the inital mamogram which picked up the lump in the naughty boob.  It just keeps playing on my mind.   

 

Let us know how you get on.  I'll be thinking of you.  

 

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Re: November 18 chemo starters

Hi November ladies,

 

How is everyone getting on?

 

Liloc, good luck for Thursday!

 

Tbird, glad to hear your surgery went well. Have you had your pathology report yet? I had my mastectomy and SLNB before chemo, back in September - and even with cording etc I didn’t find it too difficult. And looking back, the surgery was nothing compared to chemo.

 

Holeinone, how are you doing with rads?

 

I’m having treatment 12 of 15 this afternoon. It hasn’t been too bad for me, I’ve got a bit of a “sun tan” in the treatment area and that’s it. (Touch wood). I’m looking forward to not having to make daily trips to the hospital!

 

In other news.... I’ve found some lumps in my “good” breast that I’m getting checked out. I tend to have a lot of cysts, so hopefully it’s just that, but one of them doesn’t feel like a cyst, and my radiotherapy oncologist used the word “worrying” when she sent a message to my breast surgeon about it.

 

I had an MRI in August that showed that side was clear, I don’t see how I could have grown a new tumour having just done four months of chemo?! ☹️ 😭

 

I’m in that initial 2 week referral wait for the breast clinic, waiting for an appointment, and I can’t believe that I’m back at the beginning again just as I’m finishing treatment. 🤦‍♀️

 

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Re: November 18 chemo starters

Hi Ladies, so sorry it's been so long since I've posted (again), and thankyou all very much for your support and wishes.

well I had my surgery on the 20th March, I was so scared before,I really wanted to run away.  But as we all know it's the fear of the unknown that scares us, the surgery was fine - I had my mascetomy and some lymph nodes removed and was allowed home the next day with a drain in.  I kept up with painkillers and to be fair it has all been quite doable.  I had my drain removed on day 10, I feel a bit sore and have a very weird sensation where my breast used to be, but on the whole I am feeling good.

i have to see the suRgeon next week to find out the pathology from my cancer and my lymph nodes, so fingers crossed it will all be good news. 

 

I see see most of you ladies are nearly finished your chemo or just finished it, wasn't that the worse thing you've ever had to do.  When I think now to just a few weeks ago when I thought I wouldn't survive the chemopthapy, we are so brave and strong - we can do anything.

 

stay well ladies love Tbird xx

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Re: November 18 chemo starters

Hi all, three weeks post chemo tomorrow and feeling much more human. Still have quite a few niggly complaints, horrid indigestion, constantly runny nose, thrush, tiredness and lack of energy - not sure which are still side effects of chemo and which are just because I feel run down. 

 

However am managing to work (I’m a translator so luckily can work from home, don’t know when I’ll feel up to commuting back into the office). I’ve generally had a week off after each chemo session and then been able to work the other two, so didn’t need as much sick leave as I anticipated.  However got surgery and rads to come so will probably need some more time off. 

 

Got my lumpectomy on April 11th so enjoying the break without hospital trips this week - although next week it starts again with pre-assessment, physio practice session, etc. Just heard I have to go to a hospital miles away to get the blue dye injected the day before the op as my hospital hasn’t got its radioisotope licences sorted out 😠. 

 

If all goes well with that, should be doing rads in mid May so reading about your experiences with that with interest. As my lump is triple negative, won’t be doing any drugs after that, so just hope the chemo, surgery and radiotherapy do their job and get rid of it. Got a bit depressed about recurrence last week but trying to focus on just getting rid of this one and not thinking about any future issues for now. 

 

In the meantime, been enjoying the sunshine. Got out in the garden and planted out a few spring flowers to cheer it up a little. Bought some camellias which were on a 2 for 1 offer and gave one each to my sister, mum and best friend as a thank you for being so brilliant during chemo and helping me so much with meals/lifts/hoovering/moral support. So now we have a (end of) chemo camellia each 🌺. 

 

Also been trying to go for walks in the good weather. Went for a two mile walk with friends on Sunday so quite proud of myself. Ended up in a cafe, had tea and scones while the boys in the party walked back to get the car to pick the rest of us up as I wasn’t sure I’d make it all the way back! 

 

Fingers crossed for your friend Lou43, before my unlucky fourth visit, I had 3 separate referrals to the breast clinic in the past six years when the lumps I had found just turned out to be harmless cysts. So it’s not always bad news. 

 

Take care everyone.

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Re: November 18 chemo starters

Hi Pigeon,

Thanks, that's helpful to hear how you're getting on. I've just turned 44 so think that could be the route for me too with the ovarian suppression so we can swap notes on how we go on with it.

 

That's not helpful the room wasn't warm enough, I'd be the same. I remember I was cold after drinking all the fluids for my bone scan and felt the same. It's a long time to lie still for. Hope it's warmer for you next time.


I'm pleased I trimmed my hair. It does look more even but is also patchy in colour (it used to be dark brown with more and more grey so I was fully expecting it to come back grey). I'll decide what to do when it thickens and have a think about using one of the natural hair dyes I've found if I don't like it still. I keep wanting to throw my wig off in this sunshine but I guess our thin hair probably isn't the best idea and will need to apply suncream.

 

Hope everyone else is doing ok? Unfortunately one of my close friends told me she found a lump and went to her GP yesterday and is waiting for a scan. I really hope all is ok for her (I tried my best to reassure her but she's seen what I've gone through) but it brings back memories of when I was first diagnosed which now seems like a long, long time ago.