Me too.. there’s that many different drugs and treatments, it’s mind blowing.
when I went for my chemo yesterday, there were so many different cancers being treated and so many different types of chemo.
keep in touch on here ladies, and we can share our journey together (the good, the bad and the ugly) xx
Lady34 - I have to say, they do seem to be very positive about shrinking things. It does make you feel hopeful which can only be good!
Carolyn99 - my marker coil was done with guided ultrasound (I think!) and they give you a good dose of local anaesthetic so it doesn't hurt, you are just aware of them manoeuvring. You'll be fine Oh and if you need painkillers after they said to take paracetemol, not aspirin or ibuprofen as that is more likely to bring out the bruises.
Ultra sound not mine. Mine was put in by a radiologist slight sting that’s all then cotton wool wipe due to spot of blood. Then plaster on it. I asked him if he’d pierced the actual tumor. He said yes. I asked if this could cause cells to spread from it. He said no.
Same here fec-t chemo 3 lots before surgery in February. Had a pin put in where the Tumor is told this is needed as after chemo tumor can disappear so they can’t see where it was. I said what even after just the first dose! Yes it does happen
Felt hopeful hearing this.
That’s all we can do.
im having my chemo before surgery too. Hoping this thing shrinks enough and does what it’s meant to do 🤞xx
will need radiotherapy after surgery. It’s a long road isn’t it.. but we’ll get there xx
Carolyn99 I hope the cold capping works for you. Keep us posted!
I've got 3 cycles of EC to be followed by 4 cycles of Pertuzumab, Trastuzumab and Docetaxel... then surgery... then 14 more PTD. Can't look too far ahead atm though, just dealing with each stage at a time.
i have injections from tomorrow for just 3 days.
which chemo are u having? mines 3x FEC, 3x t
i was told I’ll prob lose at least 30-40% of my hair (maybe all) who knows?
but as I have lots of hair, I thought I’d give cold capping a go. I was there 3.5 hours in all xx
Glad you had your friend with you Carolyn99 I decided against cold capping as I currently have very long hair and I'm pretty much guaranteed to lose it. So, time for a change! (although not quite yet...)
Although I was going to have someone with me I went it alone which was probably just as well as my treatment is administered by the nurse very slowly pushing the plunger on about 5 syringes. She was lovely. I seemed to be okay whilst it was happening although possibly a little metallic taste at the back of my mouth and at the end my nose felt a bit weird, like it was going to run.
Not looking forward to starting on the 'goody bag' of meds. Especially not the injections - I've got 7 days of those!!!
Hi girls, just a quick update after my 1st chemo yesterday afternoon.
i didn’t manage to eat my dinner last night, felt too nauseous. Managed 1 crumpet this morning, and ha d just eaten a tin on tomato soup, which tasted heavenly.. just what I needed.
diorrhea finished by this morning, thank goodness. Only vomited last night once, around midnight.
Are any of u trying the cold cap? I did, and wasn’t anywhere as bad as I expected it to be.. more uncomfortable than painful.
my best friend came with me, so kept me entertained xx
Found this which might be useful for anyone wondering about diet.
I'll eat like I did in pregnancy then, just to be safe but surprised that there was absolutely no mention of this at my chemo prep meeting and nothing about it in the booklets ( well not that I've seen so far... still wading through them) but yeah I'm with you I'm thinking surely turmeric or matcha present in small amounts in diet must be fine. Obviously I won't take supplements with more concentrated doses (I don't anyway) but a healthy diet with no unpasteurised foods should be ok.
I'll avoid pomegranate and grapefruit just incase, don't want anything to interfere with the chemo working as it should 🤞.
Dj43, I think for the most part be guided by a pregnancy diet - ie you avoid foods with a higher risk of giving you food poisoning so most soft cheeses, soft ice cream from a machine, cold or reheated rice etc etc. It's been a long time since I was pregnant, but most of that I found was common sense. Anything with live bacteria culture, live yoghurt etc is recommended to be avoided, similar to any live virus inoculation, just don't have the ability to fight and use the culture's in the right way at various points of your treatment. Grapefruit and pomegranate are both well known fruits that interfere with a lot of drugs and seem to be advised against on chemotherapy vy many doctors, as is turmeric and a few of the stronger spices around, they can be pretty potent, but I can't see how a slice of grapefruit in a fruit salad or a sprinkle of turmeric within a meal would make too much difference I'm treating things like that more as an "intolerant" rather than "allergic" guideline myself.
Problem is, this sort of advice seems to differ from area to area, and doctor to doctor, the number of times I've seen different people being told quite contradicting advice over diet etc from different consultants is astonishing.
Overall, just remember your ability to fight even a mild food poisoning is going to be very low, especially for the first couple of weeks of your cycle, so if you want to treat yourself to some soft cheese, make it a small amount, in the third week of your cycle to get rid of that cheese craving (it's Christmas - my cheese board!! 😭) - simply exercise common sense, if you get a tummy issue, make a note of what you've eaten in case there is a link.
Green teas I've never seen mentioned as a don't drink, if anything they are recommended, I have a variety flavour pack in to compensate for changing taste buds..
Carolyn, here's hoping today is kind to you, take it easy, be nice to yourself and be sure to tell us when you're pleasantly surprised at how few problems you get! 🤗 💖 😘
Me, off with some work friends for brekkie and cocktails before all this starts! 😁
Turmeric, matcha powder are no no’s too as is Brie. Wash all salad and veg too ❤️ Glad you’ve already got your team on it 👍👍 😘💕💕✨✨Shi xx
I had my oncologist appointment today to go over chemo plan. I start next Thursday. They never said anything about foods so now I'm wondering what things are restricted and why. I drink green tea with lemon a couple of times a day, is it not allowed?? What's wrong with pomegranate? I thought plenty fruit n veg was recommended for vitamins and minerals 🤔.
Hi girls.. well had my first chemo session this afternoon.. was ok.. felt fine during.
cold cap a little uncomfortable, but very doable.. just wrap yourself up warm and sip a warm drink.
about an hour after I got home, had a few bouts of diarrhoea and very sleepy.. felt sick, but wasn’t.
been drinking plenty of fluids. Just got into bed now.. hopefully I have a good nights sleep. Temp a little low.
ill see how I feel tomorrow.
i had FEC xx
Thanks Shi will check already gave in a list of stuff I have including green tea. They’re going to let me know what I can continue or stop having. Pomegranate and grapefruit is definitely not allowed.
Please check with your oncs about any supplements and kimchi stuff you have to avoid certain things during chemo, so please keep safe 👍😘💕💕✨✨Shi xx
Hi Silvertong, Debelina and all
im starting on Friday morning. Im taking my hubby plus told to bring food or snacks as could be there all day.
Going to make kimchi tomorrow and buy sauerkraut as want to boost gut bacteria.
Hi Silvertong me neither. I'm not starting until the 16th and I can't prepare mentally for chemo at all Are you bringing anything nice to help you get through your first treatment? x
I'm starting neo adjuvant chemo tomorrow with 3 cycles of EC to be followed by 4 cycles of PTD before surgery. Not looking forward to it!
Debelina! 😲 Sacrilege! 😲 Not be able to eat your Christmas Dinner?? Of course you will!!! 😁 😁 The sprouts at the very least! 😁
And hey, if you have no hair just think how much time you'll save when getting up in the morning, all that extra energy to enjoy the holiday season - oh yay!! 😁
It is nice when your family talk openly and relaxed with you about it though, I think that's more than half the battle won already..,
Lady34 try not to worry.......I don't have an up to date will either and I am a total list maker...….I actually think it could be my hobby. It's strange the things that pop into our heads now that we feel we need to do x
Oh lord my chemo brain has started already and I haven't even started......I didn't read everyone's dates of their start dates and planning meetings correctly....massive apologies x
Hi everyone.....just checking in with you all after my oncology appointment which went ahead despite the nurses strike.
Carolyn88 and Lady34 I will be thinking of you tomorrow for your first chemos and you too DJ34 for your planning meeting.
Lady34 I only saw my new breast for the first time today as all my dressings are now finally off. I'm still a bit overwhelmed seeing my body and the scars for the first time. I don't want to make anyone uncomfortable by describing anything else but please feel free to PM me if you want anymore info....what I can tell any of you considering the type of reconstruction I had is that any pain is absolutely bearable with the pain relief......I was able to stop taking paracetamol 8 days after my surgery. I was able to walk (slowly) the day after my operation. The physio is not painful. This was the right decision for me.
My chemo is now confirmed for Tuesday 17th....I go in on the Monday to have bloods checked and may even have it then depending how quick the results come back. I am having FEC-T, Herceptin and Perjeta. The FEC-T is 6 cycles followed by the Herceptin & Perjeta every three weeks for one year but on different days. Alongside that I will have Tamoxafin so I am totally petrified but grateful at the same time that there is this treatment available to prolong my cancer reoccurring.
When my son asked me how it went today I said sooooooo basically I did need chemo and by Christmas Day I may not have any hair and might not be able to eat Christmas dinner to which he replied 'yeah but then again you might'...… I love that child
I'm off to make a list now for my Chemo bag thank you Fluffball for taking the time to share yours.
Bye for now x
All the best for starting chemo. I’m starting Friday morning. Dreading it too but at the same time want to be free of any rogue cells.
I start chemo this Friday the 6th. Was going to do a chemo shop for stuff for myself after chemo. So useful to read the shopping tips of what may be needed. Been worried about feeling sick so ginger bickies tips great. The rest I will buy on Wednesday. Been away visiting family in Hull for couple of days back tomorrow got to get a new bed delivered for a friends flat. So first day to focus on myself is Wednesday. For me I think it’s better to keep busy as if I think about the chemo then the OP in February I get anxious not just about the treatment but about all sorts of things like I haven’t got an up to date will!
Im dreading having all the chemo chemicals in my body because I’m not into medication in general. I’m hardly ill. I’ve researched their contents and found out some are plant derivatives.
I read on here of a pre treatment meeting where the cold cap was measured for and blood test done. I’ve not been offered this at my meeting just a talk on managing after chemo and confirmed the drugs I’ll be given.
So now I’m worried they’ve not done a blood test even. As someone here has said so wisely. Many have been exactly where we are now gone through all these treatments and are fine now.
Wishing us all all strength and courage
😂 Shi, I'm already very aware of the side effects to steroids. .. Try having a child with chron's disease who is also autistic on a starting dose of 60 steroids, 1 injection and about 8 other tablets every day and tell me if I reckon I'll manage! ¡
Must admit my sleeping has changed already through inactivity, going from 6-7 hours a night to around 4-5 now and it's all I need - boredom is my worst enemy 😔 I'll just have to go annoy all my work colleagues on a more regular basis! 😜
Fluff ball ❤️ Wait till all your steroids kick in you’ll be chatting away at all hour of the day and night ❤️ Because you will always be there for each other 👭👭 it’s bit like a relay race where you take it in turns with the bargin, sometime there will be a few of you having chemo in same day, they can run together while rest of thread cheers you all on etc 👭👭😁😁keep 🏃♀️🏃♀️🏃♀️🏃♀️🏃♀️🏃🏾♂️🏃♀️🏃🏾♂️🏃♀️🏃🏾♂️🏃🏾♂️ 💪💪👍💕💕✨✨Shi xx
just got back from my pre assessment, and all good. My bloods were perfect apparently (nice to know something is working)
Everyone really nice and looked round the unit and was fitted for the cold cap, so all set to go for tomorrow afternoon.
I’ll let u know how it goes xx
Wishing you the best of luck for tomorrow Carolyn99. Keep us posted how it goes, I'm a week behind you so really hoping it all goes well for you.
Hopefully it won't be as bad as we're imagining, think of all the thousands of people who've been where we are, we can do it!! 💪
Glad I'm not the only one under prepared, lol. I'm kinda running on the principle that I'll eat as healthily as poss, drink loads of fluids this week and see how it goes, we're all different and it will probably affect us all slightly differently, and there's always 24hr Tesco's 🤣 I'll get fruit juices in to make ice lollies and fruit chunks for the fridge and gingernuts forwhen I'm feeling seedy n don't want to eat and take it from there. I won't know til tomorrow if it's definitely the 10th I start so we might well be starting together.
Keep in touch so I know how you're getting on with it.xx
Carolyn, hiyas and good luck tomorrow and Wednesday!
Remember the horror stories, especially online, are from people needing help and therefore the most likely to be posting and seen, this does hugely skewer the resultant seen affect of chemotherapy, I have spoken to loads of women now who haven't had any nasty side effects at all at cancer support centers etc and because of that haven't posted, so let's make sure we post even when there's nothing to post asking for help, if we post the positive as well it can only help.
Besides, I'm sure a lot of the side effects, especially in milder forms can just as easily be attributed to stress - I know I suffer tummy problems when stressed!
Looking forward to hearing that everything is going good and you wouldn't know you'd had it Carolyn!
i think we all just want to get started now.
pre assessment for me this afternoon and 1st chemo tomorrow afternoon.. not going to lie, I’m dreading it.. heard so many horror stories.
but we really have no choice, so need to get in with it and hope we come out the other side with as little damage as possible 🤞
good luck to all you lovely brave ladies. Xx
At present there are no children in my family, so Christmas shopping is easy!! 😁
We booked our Christmas day dinner in June for myself and hubby at the local miller and carter, booked and paid for so that's a nice easy day, and thankfully the chemo cycle should be at its best for us then too! New year's eve we simply go out the front with our neighbours and watch everyone else blow their money up in the sky for us whilst toasting with champers - usually have about 6 sets of neighbours out, but it's still a quiet affair even if I'm feeling a little out of it shouldn't be affected.
Can't wait to get it started on the 9th, just so I can get to June and find out what's next to be honest, so concentrating on one day at a time, being as prepared as possible and enjoying a little extra temporary freedom from work life (still regularly going to see my work colleagues, chat and keep up with the gossip!) .
Are you getting a line of some description put in livers?
You sound just like me - starting chemo 10th Dec following bi-lateral mastectomy on 30th Sept. - just spent the weekend doing the Christmas shopping and that’s the only thing sorted!
Dj43, it's funny, throughout my adult life I've had some weird illnesses - I had meningitis in my 30's, a parasite called giardia about four years later which isn't found in the UK at all, but in Australia and I'd never been abroad in my life at that point, up until then I had struggle with depression marked with psychotic episodes. Then I got into my forties and things changed - although I suffered the odd cold/tummy bug, nothing more, I was fighting my depression myself and able to come off all medication, in fact at the beginning of this year I was happily saying that I was my healthiest both physically and mentally that I have ever been as an adult!
Apart from the scars from the operation and nerve damage from lymph node removal so exercising my arm etc etc, I would still say I feel absolutely fine, I feel healthy and good about myself, even emotionally, whilst I have my bad days, I am coping with all this far better than I expected. I am able to ask the right questions of my team, I am not simply accepting what I'm being told, I am questioning my treatment and ensuring I know the reasoning behind it, the only part I am burying my head in the sand about is the idea of metastasis - whilst I know what they are saying and expecting, I refuse to let that hit me emotionally right now and to concentrate on what is 100% verified. I've asked them no to speculate with me now, I know what the blood markers are indicating, but as they've found nothing yet I'm prepared to ignore them for now and my team are doling my lead with this when talking to me.
I think part of this is making sure I am prepared for anything I can see immediately ahead of me - it's my way of taking control in a situation where I feel helplessly out of control. Even when I go on holiday, every day already has something planned and booked, I have a list if restaurants I want to try, I enrol in a holiday phrase course of the language, I search out locals who will take me away from the tourist scene, look for areas not accessible by public transport etc all before I've left home, I'm doing the same here.
Hopefully the results are the same, we've had a couple of amazing holidays abroad now (I figure if I'm gonna get the parasite I may as well visit the place! 😁) and both hubby and myself have felt my planning has ensured we've experienced a lot and enjoyed many activities. So... The chemo is going to run smoothly, the odd bump perhaps, but nothing that isn't easily remedied, I'm going to stay feeling healthy in myself, I'm going to have a lovely Christmas, I have plans for some nice long weekend trips next year which are not going to be affected by my chemo treatment, I am feeling positive and full of energy.
I'm having a port fitted on Thursday, first chemo on Monday next week, even that's gone my way, they thought I wouldn't be able to have a port, instead have a picc line with weekly flushes, I asked for a port, no having to go anyway for it to be flushed each week, no hanging wires on my arm, it's all implanted, very little evidence of it at all apart from when it's needed - I love my baths and using a cover would be such a nuisance - and they have got the machine in place from today to do them - yay!!!
So... Here's some positive hugging vibes if anyone feels the need...
🤗 🤗 🤗 🤗 🤗 🤗 😘
jeez fluffball, sounds like you're super prepared!! Go you!
I'm going to write a list tomorrow and start getting things ticked off this week. I've got some questions for oncology on Tuesday already written down, shame they can't answer the one we all want to know...will it definitely work??
Until 2 months ago I'd have described myself as healthy, I'm never Ill, barely even catch a cold. When I told my kids it was the first thing my son said, ' but how can you be the one with cancer you're always the one who never gets ill?'. So I'm really hoping that stands me in good stead for getting through chemo...wait to you see, bet I'm terrible at it!!
I'm going to our local cancer care charity place after my oncology appointment to get myself booked in for some support sessions and pampering treatments.
Good idea to get the skin and nails etc prepared so I'll get on that this week. I have quite dry skin already so I'll need to get moisturising.
I'm a nurse myself so I usually have the basics in in terms of medicines so I'll see how things go but will add some zovirax and corsodyl to the stock.
We'll get through it I'm sure...we've no choice really, it's the hand we've been dealt unfortunately. We can compared notes as well go. ♥️
I've known since September that I would be undergoing chenotherapy, I was almost put straight onto it, but they decided operation first as although there are indications of metastasis in my blood markers, they have found no evidence of any tumours on a CT scan, so decided operation, chemo and rads, then a full MRI to see what's what. Cross fingers it will be nothing found and scans every 3 months with endocrine/biophosphates, although they will never class me as "cured" there is every hope it will be lifelong remission!
This means I've had a LONG time to look at other people experiences and advice - first thing you need to do is realise that when someone reaches out on a forum such as this or indeed any support network, it is because something has gone wrong, when everything goes well you simply get on with your life and think nothing of it. I have spoken to so many people now who have simply sailed through their chemotherapy, who have had very few problems and the ones they've had have been easily solved - remember that when looking around..
So... I've had time to go overboard preparing, here's what I've done:
I have lots of different drinks in the house, different flavoured waters, sparkling water, cola, fruit juice, ice lolly sticks, hot chocolate, different teas - you need to be hydrated and so many people say their taste buds change dramatically, I'm trying to make sure that no matter what, I'll have something in I'll want to drink.
Moisturiser - I have chosen E45 but also have a small bottle of Aveeno in case I react (highly unlikely) to the E45, again, many say their skin gets very dry, easily irritated and tired - I have got myself into the habit of moisturising all over, getting my skin into the best condition I can beforehand and developing a habit before I start.
Medicine: whilst you can call the chemo line and get things prescribed if you do have a problem, it seems to me that being prepared for basics like headaches (remember most pain killers will also control temperature and therefore hide a key symptom for infections, so go careful with these, take your temperature before having anything that can help bring it down and record it for yourself), constipation, diarrhea, allergy medicine, a couple of tubes of zovirax for cold sores (the galpharm version is great as a preventative and cheap), a couple of boxes of canesten duo cream and a tube of germaloid cream - if you have these in you can take them as soon as it's ok'd by your team, rather than wait to go to a pharmacy to collect, they're cheap enough too, and make sure you get the prescription to replace. These are also things I tend to keep in anyway.
Mouth care - now I suffer anyway from mouth ulcers, so I reckon its gonna be a toughie for me - I have soft toothbrush, aloe Vera natural toothpaste (at a minimum avoid sodium lauryl sulphate or SLS!), alcohol free corsodyl mouthwash, baking soda and salt (mix into water and use as a natural mouthwash), difflam (expensive, but worth perhaps paying for one initially as its a godsend and you can get it on prescription, but I've been told not until I get the problem (huh?)), get a free sample of something called gelclair from their site - ultra expensive but if your mouth ever becomes a real mess and you can say it's helped you MAY get it on prescription (depends whether your docs will allow the expense), have some bonjela adult and some oragel too in the house. For me pineapple works well too, having it frozen is nice if my mouth is sore, but do check that it doesn't do the opposite as for my sister it is one of those things which triggers mouth ulcers, so don't try this whilst you have them, check beforehand, if good, lots of pineapple juice too...
Dried fruit - prunes/apricots/dates are especially good for energy and helping the digestive system, I also like them which is a bonus!
Anti-nausea - sea-band, ginger biscuits (the higher the ginger the better, try Borders old fashioned ginger biscuits, or M&S ginger stem cookies), aromatherapy rubs - there is a lot out there, look for stuff that is safe and advised for pregnancy sickness and you're good for this.
Hair - I suffer bouts of alopecia anyway, so I've used this as an excuse to splash out on some new headwear and a couple of extra wigs - personally I love buffs - versatile, lots of colours and if you go for the polar ones at this time of year, cosy and warm, but there are some excellent headwear companies that work with women with alopecia, no matter the cause and it is worth experimenting with scarves/beanie hats/slouchies/soft caps - it is probably worth getting a really soft sleep cap as your scalp is likely to be a little tender and certainly cold.
A soft blanket - for sheer comfort, when you need that little bit of extra cosseting, don't ever worry about saying stuff it and cuddling up with a nice soft blanket and a good book or film and ignoring the world for a short while! Add a nice soft pillow too, perhaps one to take to chemo with you, for that added comfort factor.
Fluffy socks, gloves, scarves, hats for warmth - it's winter and many report that their extremities feel the cold, so nice warm pj's too...
I have treated myself to a little extra make up, I have also renewed my eyebrow make up - I've never been bothered losing my eyebrows, so a very simple easy to use solution I like is a Christian Faye eyebrow kit with stencils, but there are kits which with a little patience you can draw very realistic eyebrows. I've also treated myself to some nice lip colours, a nice blending pallete and some nice earrings (draw attention away from the eyes and eyebrows). Never tried the fake lashes, but be warned if your lashes go, you do tend to tear up and "cry" a lot!
Hand wash - at every sink, a fresh hand wash, have hand sanitiser too, for all your family, get into the habit of using them.
Hand moisturiser - I'm using vaseline hand and nail, and trying to strengthen my nails, many recommend dark nail varnish, personally I'm not going to bother with that and will simply ensure I'm wearing gloves when out with plenty of moisturiser and cotton gloves if needed inside as it's the UV light which damages your nails most, but be aware that's not the whole story and you need to also look after your feet. I've been to a chiropodist and have a general foot massage/MOT to ensure my feet are as healthy as can be going into this.
Lots of tissues, nice soft toilet paper and washlet toilet wipes, a pack or so with witch hazel for piles, lush bathroom products which are hypo sensitive for indulgence moments are completing my kit..
Yup, I've gone totally overboard - I'm reckoning on not needing most, if any of it - but its all stuff that isn't going to go out of date immediately, will get used at some point anyway and if needed will hopefully make my life easier as quickly as possible...
One thing I have repeatedly been told is to keep a record of how it goes, tell your team everything, don't take anything until its been ok'd by them, keep a record of everything you take tok and how quickly it's been effective. Often things can then be done on the next cycles before they happen...
See... Told you I had way too much time to think about this!!! 😁