All the fives... Tamoxigang cancer support thread 55

[WhatWouldLeslieKnopeDo]

Welcome newbies and oldies to our 55th thread!

Our previous thread is here.

If you have any sort of cancer please feel free to join us. We are always happy to offer a hand to hold if you're waiting for test results too.

There are no stupid questions here, and there will usually be someone who can answer, or point you in the right direction.

helly and fresta, my MIL is the same, I've stopped taking her calls now and DH screens them all. She keeps ringing to tell us how awful it all is and how dreadful our lives are now, and how hideous the constant waiting for results is..... She actually told DH that she was "entitled" to be like this as I'm her DIL
Welcome slanty I think we all feel the same, as helly says, even though I've had an operation, have all the kit, scans, appointments etc I'm still not quite convinced I actually have cancer. It's like I must have some kind of pretend cancer and only other people have real cancer.
I too have only a happy, superficial life on facebook. Can't face the "you'll be fine!". Everyone who needs to know does know. My boss is telling my team tomorrow which is another step to making it real I suppose.
On the bright side we have had an enormous bonfire this afternoon which has cheered us all up here
Does anyone else feel the urge to de-clutter/ burn things throw stuff away?

Yes yes yes to clearing out! - since Christmas I have cleared every drawer in the house, I have burned a box of bills and bank statements dating back to 1995, I have sent bags and bags of clothes to the charity shop and revamped my wardrobe with better colours for me (now I have no hair I can see some things just don't look good on me and I've been dying my hair too light for years). I have gone through the bathroom cabinet and thrown away all the highly chemical/paraben/fragrance laden products and only kept the more natural ones. I have also changed our diet considerably, we are eating more mediteranean type food, trying to top the five a day recommendation and cutting out processed food and sugar. Getting through tons of tomatoes and peppers, green soup and salads.

Someone asked earlier about being able to drink alcohol on chemo. I was told it wasn't off limits and my oncologist actually suggested the odd glass of red wine. However I feel I can't face alcohol for at least 10 days after chemo and I have drunk very little, maybe a glass of wine on a Saturday night on the good weeks is all. I have decided since my cancer is eostrogen positive and alcohol promotes eostrogen production it's best avoided or kept to minimum levels. Gone are the days of drinking every weekend (not that I ever drunk huge amounts) I'm going to be a special occasion and birthdays only drinker from now on, and that gin is waiting for my celebration next weekend

Sorry, oestrogen!

Hello everyone and welcome slanty. I think a lot of us have very similar Mums or mils. My Mum unfortunately is very very negative about it all and constantly tells me how she thinks the medical profession are lying to me and how I won't find it easy to be positive when they tell me the truth!! Had lots of comments at Christmas about my still being here for one last Christmas. Would love it if she could be even a little bit positive to my face even if she doesn't think it when she's not with me. fresta yes my lump has shrunk to the point that I can't feel it anymore although I'm sure there's still something there as one of the mri scans showed it was quite deep, still crossing my fingers for a good response though.

Hi to everyone, especially all the new people here. It's busy again, which is good and bad at the same time. I was amused to read about clearing things out. DH and I cleared a whole bin bag of old paperwork this afternoon dating back to the '90s. We're going to have to burn it, there's too much for the shredder. It feels good to make some space.

Wishing everyone well, those awaiting the dreaded results, in the middle of treatment or just ending it. We're collecting dd2 from university tomorrow for a months Easter holiday. Goodness knows why we bothered tidying today.

I have my two year mammo in a couple of weeks, I still can't quite believe I have cancer. I remember very well the early feelings that it must all be a mistake, then getting brought back to earth by the very serious faces of all the medics. But it does get easier, for all those just beginning this experience, hang in there it does get easier.

Crikey we all must be nest clearing due to spring, I went through 4 bags of old paperwork yesterday and was wondering how the shredder will cope, burn it is 😃.

Can I ask what people have done about work? I have been off 4 weeks wednesdsy and was intending to go back after the bholiday to see how rads went. Now things have gone a bit skewy with chemo discussions I am not sure what to. It's a mentaly challenging rather than physical job but my brain has gone a bit mental and I am only just getting through the days without having to make a decision 😕, plus I don't know the outcome, time frame invthe chemo discussion. I know I need really to wait till Wednesday but I am a great planner even if the plan is a shit one!

I work in a school, and due to infection risk I decided to take the duration of my chemo off sick. I don't regret this, as there was no way I could have worked with the energy levels required to teach young children. I also have managed to get through the six months and only caught one cold in that time so it has meant I have been able to have all my treatments on time, without delays. I'm due for surgery next month now, and after recovery I may go back part time, but will see how I feel as I don't know if it will be feasible to work through Rads, travel time and practicalities might be a problem. Have others found working and radiotherapy doable?

I desperately wanted to work, but my oncologist kept signing me off. It depends how you react to chemo. Some people have minimal side effects, so would be able to work. There's no way of knowing until you've had your first round though.

I've only had chemotherapy. For my initial chemotherapy, Doxetaxol, I worked part time in the office (2nd and 3rd weeks of the cycle) and also worked from home, but I had a temporary assistant in the office. The first week of the cycle, was generally a work washout as the Tax Truck hit really hard and I couldn't see a computer screen clearly.
I've been on three other chemo drugs since then as I have secondary BC and I have worked through those. I work in an office and have a long day because of a four hour commute, but I can manage that as the work is not physically demanding. I can even work whilst having a chemo session!

I've had 3 weeks off and am due back tomorrow but like you helly, the chemo plan has totally thrown me. I have a call with my GP later as I'm in bits again today
I keep crying! I think it's because I have a hairdressers appointment this afternoon. I only go once every 6 months (high maintenance me!) but I'd normally have a sleek swishy bob cut - my natural look is rather fluffy with a home hair dye, controlled by straighteners.
All seems a bit pointless, and I know there's more important things than hair....but.
Anyhow, last week (when I could hold a conversation without crying) the BCN suggested I leave it longer, see if a cold cap reduces hair loss then I can move the hair about to cover the thinning.
Is this realistic?? Has anyone had success with the cold cap? Or is that a bit clutching at straws? Should I get a wig? Can I hide for 6 months as that's tempting today.
Until I know if it's spread I don't know what chemo drugs I'll need - does everyone start with docetaxel?
lilymaid were you diagnosed with secondary breast cancer right from the outset? I think that's what they're preparing me for - conversations about "other outcomes".

leslie I'm thinking about it like when you're first pregnant - you have no idea if you'll be glowing and gorgeous like the adverts or throwing up everywhere and behaving like a crazed loon - until you're there

Pepper, my advice is to get your hair cut into a short style because the cold cap works better if the cold can get to your scalp. Ask your hairdresser what style she recommends for cold cap. Lots of hairdressers are really knowledgeable about chemo.

I'm not cold capping because being cold is worse for me than the thought of being bald. But I do have RL friends who have cold capped and it worked for them. Your hair will thin a bit, but many people do keep their hair. They said the pain from the cold only lasts about 10 minutes and then its ok.

The crying is also completely normal. I cried loads when I was first diagnosed. I cry a lot less now. Many people start with FEC and then go onto docetaxel. I'm Her2+ and my oncologist does not give herceptin at the same time as FEC. So I am doing FEC first and then tax plus herceptin, although I will be on weekly paclitaxol instead instead of 3 weekly docetaxel.

Hi pepper, if you find the previous thread,54, and go to page 31 you will find some photos from poster boobz. She cold capped through chemo, I think she started off with longer hair but had it cut short before treatment and managed to keep a lot of hair. I don't think it was pleasant but she managed it. Perfectly normal and ok to be feeling very emotional too, both before and after you know what you're dealing with.

Haha! I've never been pregnant, but I'm sure I will be glowy and gorgeous if I ever am actually I got "morning sickness" from my egg freezing drugs, much to the amusement of the nurses. I arrived for the harvesting with my head in a bucket. So at least I know what to expect when I'm expecting

Actually, whether or not you have morning sickness during pregnancy seems to be a good indicator of how sick you will be on chemo. I don't know if that will be reassuring or not! My mum had hyperemesis, so I imagine I've inherited that tendency as I had permanent nausea during chemo. But the good thing is that there are lots of drugs available to combat nausea. I had a few public puking incidents but it was mostly under control, especially in later cycles when they'd tweaked drugs.

You might find yourself throwing up and glowing during chemo though, if you benefit from the chemo spa effect. It seems to help lots of skin conditions. My rosacea and keratosis pilaris completely disappeared. I think others have found it helped with psoriasis. Lots of people told me how healthy I looked perhaps a polite euphemism for the weight gain

I'm sorry you're struggling today pepper. It can be so overwhelming with all the results and tests at first. Do you have an appointment for your CT scan yet? Not everyone has Docetaxel, it will depend on your cancer type etc.

Afternoon all. I have read back and tried to have a catch up.

Congratulations Fresta on finishing chemo. I hope the SE are manageable this week and you can head towards that gin.

Elmindarina- hope you are recovering from your op.

Slanty- I hope that you have a clear plan today so you know what treatment you'll be having. It is such a whirl in the beginning with so much info to take in.

Pepper- I hope you have gone to have your hair cut. It's such a difficult time waiting for the results and decisions about treatment to be made. I didn't have the cold cap- couldn't face having that on my head but I know some people have done. The only person in real-life that I know who had it found that it thinned and came out in places but kept most of it.
I had FEC to start with and then tax.

Now have a pile of work to do so best get on with it.

lilymaid were you diagnosed with secondary breast cancer right from the outset? I think that's what they're preparing me for - conversations about "other outcomes".
Pepper - I was diagnosed with SBC very soon after initial BC diagnosis - after the first diagnosis I was sent for various scans the following week (and started chemo) and was told I had SBC within a fortnight of the initial BC diagnosis. Now coming up to three years since SBC diagnosis.

The chemo helped with my keratosis pilaris, think this is related to hair growth as the trapped hairs cause the red bumps. When my hair started growing again on the EC the keratosis pilaris started coming back.

Pepper I think it's good advice to have a shorter cut before chemo, whether you cold cap or not. It's less of of a shock then when you do lose your hair.

My hair seems to be growing quite quickly, although i think it will be a good while before it is thick enough to go without covering it. It's also coming back mainly white. Yes, I had a slight splattering of grey before but not to this extent. Did this happen to anyone else and did your hair return to it's previous colour eventually?

I am the worlds easiest person to make sick, I was very sick during pregnancy, I get travel sick and can even be sick just spinning round too much. However I haven't been sick once with chemo, the anti-sickness really help keep it at bay and I've only suffered from a slight feeling of nausea for a couple of days after the EC, not enough to be debilitating and nothing near as bad as morning sickness. I told my oncologist I was sick easily and they prescibed Emend which has worked well without any side effects.

I had Tax first, I wonder why as most people seem to have it the other way around?

I cold capped, had my long hair cut into a bob as preparation. I didn't find the cold cap too bad, always had a hot drink while it was on to try and warm up a bit. I did still lose most of my hair and had to wear a wig so I'd advise you to get one just in case, better to be prepared. I still think cold capping was worth it as my hair grew back quickly after chemo.

Mine came back white/ grey but is now back to normal

It's strange with a wig, you think everyone will stare but they really don't. I had to force myself to go to sainsburys by myself the first time I wore mine and I was so self conscious but soon realised that no one noticed or cared. In fact I had a few people comment on my new hair cut while I was wearing my wig, I didn't tell them ! I wanted to be anonymous and it not be obvious that I had cancer which is why I didn't wear scarves but we are all different

mumto2 how quickly did your hair go from grey/white to normal colour again? Mines growing back fairly quickly thank goodness but there's definatley only white and grey

It's hard to say really because I dyed it. Started off ginger as I needed a strong colour to cover the white but after a few months got my usual highlights from the hairdresser.

Can I ask people who have gone through chemo if and when their periods stopped?

My oncologist told me that periods will stop with chemo. I'm on my 2nd FEC and am still getting periods - just come on again. Does it take a while for periods to stop?

Morning everyone.

Mysilly, I had a period after the first round of chemo (tax) on time but it was slightly lighter than usual. I haven't had one since. I don't think FEC seems as aggressive as Docetaxol so maybe it might take a little longer for them to stop if you are having your cycles the other way around to me?

Waving to all.
Fresta, depends on the technical geeky details of your biopsy report. Some lumps are most likely to respond faster to Tax first. Teams look for how fast and how well a lump shrinks. The faster and smaller, the better. The best possible outcome is a 'pCR' where it disappears completely during chemo. So if Tax is nearly doing that...but not quite, they can add extra oomph to it.

mysillydog My periods stopped from the first dose of chemo (had 3 fec then 4 tax) and haven't returned yet, which I'm quite happy about!
Amberlight Can I ask what's 'pCR' please?

Morning all, thank you all so much for all your support and advice yesterday. I feel much calmer today.
I had a short bob cut, all the same length and my hairdresser was lovely (I cried at so many people yesterday ). So I feel happier with my hair today - forgot to take a voucher with me which may expire long before I need my next haircut though - doh.
Chased the hospital as no date for the CT scan and they had lost the referral! , the lovely nurse I spoke to was also the oncology BCN so she talked me through some wig options and what to expect timewise for hair loss. Hopefully I'll also be able to have the chemo at my local hospital (where all my appts are at the moment) instead of travelling to the regional centre.
So I may get the scan over the weekend apparently to keep me on track for results next wed.
Somewhere in all of this I need to get my head round DS2s 10th birthday party in 3 weeks - he wants a trampolining party - I so need to get a bra that fits before that!
Waving to all.