Hope you're all doing OK today. Has the lock down affected any of your treatments/appointments today?
I had my New Chemo Pt appointment cancelled for this afternoon. Fortunately they just want to reduce my hospital visits so they're going to tag it onto my picc line apt tomorrow morning. I'm fine with that, but would rather have got all the info today than 24 hours before chemo actually starts! Having little people at home don't give you much chance to think!
Is anyone else juggling kids & chemotherapy? Fortunately i'm a key worker (I work at the hospital where i'm being treated! ) but obviously i'm on sick leave at the moment. I'm waiting for consultant to let me know if it's OK for them to still be at school or if I should keep them off as i'm vulnerable. Chemo & home-schooling is not a pretty option.....
Good to hear your replies about the cold cap experience. It does make me feel more positive about it, so thank you. 💚
@Belinda_F really glad you can take the time you need to rest. I’m not working at the minute so I’m very lucky I can too! Although I hope I won’t need to, obviously.
Ugh, no sleep is my worst! I’m such a grumpy cow if I don’t sleep well lol. I hope the sleeping pills work for you. I’m hoping for a phone call today so I’ll keep you all updated!
@Mumboo I was really pleased to read how well you recovered from surgery! Gives a bit of reassurance to us who have that coming up!
Funny you say that about chemo, I always thought I would say no, and to be honest, if it wasn’t for family members I probably would have thought about it a bit more before deciding. But hey ho, onwards we go!
All the best for Thursday!
Hope everyone else is doing well!
Oh that's interesting, I'll look the trial up... There are so many advances and gene testings in the offing, I too would have tried that option too. There's such a fear around chemo and it's the only thing that really undid me for a bit. But the drugs they give to help with side effects are amazing...
I'm using the cold cap, I too can't bear the thought of loosing my hair.
Was scared about the coldcap and pain, after reading too much online, but honestly, it was fine! I took two painkillers before hand, and the first ten mins were cold, but I asked the nurse if it gets worse, and she said no, and by fifteen mins in, I was relaxed.
The only bit that was uncomfortable was the under chin strap, but you can sort that out.
Apparently it works for 50/50, and some women have great success and only shed a little, others a lot... But I'm giving it my all! I've been taking hair vitamins for a while (need to check this is still OK actually)...we can but try and hope...
give it a go? Only thing is you're there much longer, 2.5/3 hours as oppose to one (depending on protocol I guess) Xx
Oh, here's a FB group about it, lots of info
The trial i was told about was called the Optima trial. It's only suitable if you tick certain critera ie type of BC (i'm HER2-, hormone+, Grade 2), age, weight, etc. I happened to meet this critera so my oncology Dr asked if i wanted to be put forward. Trial patients are randomised to either have chemo or take a test (called Prosigna, where they test your tumour for a specific gene which they believe shows how likely it is for your cancer to return within 10 years). This test gives you a score. Low score= no benefit of chemo. High score=need chemo. Neither the patient nor the Dr will ever know whether you were randomly picked for the Prosigna test or not. You just get told yes or no to chemo. So...the odds to get no chemo are slim, but i personally wanted the chance & also to help with any info that i could provide for future research. Even if the patient met the initial critera, it's understandably not the choice for everyone. BC is a very individual diagnosis in so many ways.
I'm considering the cold cap. Does anyone have any views/advice on this aspect of treatment? It seems to be another thing which is quite random as to whether it works or not! It's odd...i'm a lot more upset about losing hair than i was about my boob! Just realised my passport runs out in September so had better take a photo now!! Don't want to be reminded for another 10 years!! 😱
And glad to hear i'm not the only one guilty of over-indulging just before chemo!! It was those pesky Terrys chocolate oranges....! 😂 🤦♀️
I'm so pleased to hear your mastectomy recoveries have been positive, what a huge relief after such worry.
I too really struggled with the prospect of chemo... I was initially told I'd have a lumpectomy then radiotherapy but that all changed with got the her2 diagnosis, and info wasn't given to me properly, another story another day... But in response I really started digging into her2 triple positives and for some women, chemo can be an over treatment so I was quite anti the idea if I didn't need it obviously... I asked my oncologist about this and she cautiously agreed but said the nuances of this for individual women with complex disease, as bc is, means these kind of deviations from guidance are five years away, and the science isn't there yet, so I've stopped driving myself nuts with this now and I've put down the science (for now). The guidelines say we have to have chemo to get the Herceptin, not entirely sure why still... But I can so understand why you would want to avoid it, me too! So why did they think you might not need the chemo? That's great studies being done now...
But try not to worry about the delay, they wouldn't say 3 months is OK unless they had very very strict science guidelines on that.
With the eating, god I've just been hoovering up all manner of rubbish, lots of sugar, oh dear! But today it's all going in a bag out of eyesight and I'll get back on healthy eating... Although TBH, vitamins and veg are essentials, but so is eating what you can, and keeping strength up with whatever you fancy guilt free so the way to go!
Love your posts guys, really helps not being alone doesn't it. X
Hey @pips88 it's so busy with appointments isn't it, you'll be relieved to get started and in a routine. The mdt meeting outcome will alleviate a lot of questions and you'll get dates in diary.
I'm still feeling OK! Fewer pills now, waking with mild nausea but after a pill it's fine. Stopped the steroids yesterday and sleep wasn't fab last night so that's odd! My GP gave me sleeping pills, I can cope with a lot but not sleeping is a no no for me.
It's hard getting started today, need to take the decs down which I've really loved this year... usually it's grim going back to work first week in Jan, but bc and work! OMG... So I'm putting that off for now and am still in bed (being self employed has some ups).
Keep up posted on your meeting outcome, thinking of you X
Hi @Mumboo and all, I'm a bit of a 'swinger' (!), as I actually started chemo just before Christmas, but I feel a bit of a January person as well, hope no-one minds! My second chemo is due on Friday, as long as bloods okay on Wednesday. I had my mastectomy first too, and agree with @Mumboo that it was nowhere near as bad as expected. And also, I'm not sure you can prepare that much for chemo, can you? My philosophy has been mainly about doing whatever feels okay... any food I fancy, as much movement as I can comfortably manage and trying to reduce stress as much as possible. I've decided that my job (as I've been signed off sick for 6 months) is getting through this... When I spoke with the Doctor and the pharmacist the day before 1st chemo (for me, the most helpful consultations which reassured me a lot) they said that the important thing was to get food and fluid down. My endless weight loss attempts will start after this is over!
I really feel for you, having that carrot of no chemo dangled in front of you and then taken away... I have always dreaded chemo and wondered if I might refuse it - in fact, once I knew I was Her2 positive I knew that that I would need it and just had to get on with it. If it's any help, my first one (I'm having Docetaxol, carboplatin, tratsuzomab) was nowehere near as bad as I thought. I think the anticipatory meds they give you really help.
All the best for Thursday, @Mumboo and to everyone who is starting, just started etc xx
I am 49, Mum to 2 gorgeous girls 8+10. I have a husband who has really stepped up since my diagnosis & i'm very lucky to have this support. 💖
I was diagnosed with BC in Sept, had single mastectomy 22nd Oct & chemo was due to start soon after, followed by radiotherapy & hormone treatment. However my Dr threw me a curve ball & offered to take part in trial to assess whether i actually need chemo. With the chance of not having to go through with chemo, i took up the trial offer. Sadly i was not accepted so am booked for first chemo on 7th Jan. I was concerned about the time taken, but Dr was ok with it, as long as within 3 months of op.
I'm glad i gave myself the possibility of no chemo, but the down side is that i had originally expected it to start mid Nov, so this waiting is getting quite unsettling.
I am due to have FEC-T. Once every 3 weeks for 6 rounds. I'm having a PICC line inserted on Wednesday & pretty sure i'm going to give the cold cap a try.
I'm scared. I'm getting tied up in knots about what food i should /shouldn't be having (eaten way too much rubbish over Christmas!!) Worried that i should be preparing my body more than i actually am. I walk the dog & run round after the kids. That's it! Worried about a million things that might or might not happen! Phew! And that's the craziness of my brain working before the kids get up! 😂
On the plus side, the mastectomy recovery was nowhere near as bad as i expected! And that was with a seroma, cellulitis & cording! If anyone any concerns, then happy to offer any tips.
Above all, just wanted to say hello. 💖
I’m good thanks, no news yet but they did say this coming Tuesday would be the MDT meeting to discuss my CT and then they would contact me to start chemo this month. I think the nurse said they were expecting to give me FEC-T. I had an MRI yesterday and I’ve got an echocardiogram tomorrow so at least they are keeping me busy, and my mind off the waiting lol.
Oh good. I’m glad, it gives you a bit more confidence when it runs well like that! Well I keep my fingers crossed your next scan shows good results. Definitely keep us updated.
How have you been feeling this weekend? X
PS, not sure podcasts are for everyone but I started listening to this last night ~really good I thought, funny, honest, kind... X
Hi @pips88 how are you doing? Any news back on CT scan? I wonder if they'll get you started on chemo this month, did they say?
My protocol is 4 X EC and then 12 taxol and Herceptin for a year and hormone blockers, think they're called endocrine treatment. After the chemo they'll do an op to remove what's left of the tumor. Got first scan in couple of weeks to see if it's helping so far so fingers crossed for that.
I was really impressed at the hospital by how seamless it all is, the nurses are lovely, bring round coffee too... And I was very relaxed once I'd... relaxed!
But was anxious before so totally get your just wanting to get on with it! You just want to get started don't you. Get it sorted, get this serious inconvenience out the way and move on... That's my thinking anyway.
Hope you're doing OK too, send news when you can X
How are you feeling Jan? How's your energy been? Dealing with nausea OK? I've had two days on sofa, mostly fine which is great, eating well, trying to time nausea pills better as had some later in the day and night time and had run out of pills I could take so timed these differently yesterday... Did my first immunity boost injection, feel bit woozy today, it's not unpleasant mind 😂
How about you all guys? X
Hi @Tomboy7 oh dear, talk about stress on stress... I'm no expert but don't panic, try not to. They'll have protocols in place if you do have covid... Do let your nurses know, have you told them? The nurses here are excellent too... All hopes you haven't got it. I do know some chemos can be done at home in covid times? Ask about that too? Thinking of you. When will you get your results? X
Tomboy, you must please ring your team about possible Covid and keep them up to date on sending for test and everything, your team will always want to know everything on chemo journey so they can get you safely through, please don’t get blasé with chemo, things are not like usual and things you might think oh I’ll just have bit of cranberry juice for uti will need antibiotics, chemo can give you thrush or thrush mouth again it will need antibiotics not just over counter do it yourself meds. ❤️ Getting through safely is what matters and along chemo journey you might get delays anyway lots have because of low neutrophils or other things but get through safely in the end ❤️💕💕✨✨Shi xx
Thanks BelindaFleur, you must be a mind or message reader (haha), but we think that we have both come into contact with Covid over Christmas. First signs, last Sunday, feeling lethargic, cotton wool/fuzzy ears, headache, very slight cough, general aches and pains. I just put it down to extra Christmas activity etc., and out of routine stuff. Well you do, because you don't think every little chill or ache and pain might be Covid. Anyway, I ordered tests for us both yesterday. Tonight, I have lost my sense of taste and smell...... oh dear. Tests have not arrived yet and my first Chemo is on 7th January; I will be well past the isolation date by then but what if I have Covid and it is Chemo time, even with mild symptoms. Does anyone know what my outlook might be? I don't wish to delay the inevitable chemo, but how does it sit with Covid? I have no idea and am worried that it might make the whole treatment process protracted. I am pretty sure my Oncologist said that they must start Chemo within 2 months of the surgery. I had my surgery on 19th November; do I have time, what are the odds? No idea but worried. Thank you to anyone who has read this comment and even more thank yous to any of you if you have any answers. Happy New Year All.
thank you! Hoping I can offer support to you all too!
Im so glad you are not feeling too awful after your first chemo round. Fingers crossed we all get through this without too many side effects.
At the minute I’m aware I’ve got positive ER & PR receptors but I’m still waiting to find out about the last one. I’m ok thank you. Just want to get started with my treatment now!
what chemo are you on? Glad your taking it easy!
I'm not entirely sure which part but it's one of the EC protocol chemo meds. Think it's the E! called 'red devil' because it's red and makes your wee red for a couple of them. X
Oh wow @Tomboy7 that surgery sounds amazing... I too was possibly offered this, which appealed too...watch this space... But I'm so sorry you've got a reaction to the glue, all you need! I do hope clears up quickly...
I'm so so sorry your partner is poorly too, how is he doing? That must be chronically stressful for you both being unwell at the moment... And I do hope you've not got the covid, have the hospital said anything about this? Testing? Thinking of you both X
Hi Pip, lovely to have you here but so sorry you're here... Your treatment sounds very similar to mine and others here too. I do hope we'll be a good support for you. I've just had my first chemo, her2 triple positive, 20mm, and so far positive, feeling OK. Not doing much bar TV and sofa but don't feel ghastly so that's a big relief.
How are you doing? I hope you have lots off support Xx
My name is Pip, I’m 32, and I was diagnosed 22nd December after finding a lump four weeks prior.
I have a grade 3 tumour approximately 1.5cmx2cm. At the minute we don’t think it has spread to my lymph nodes but I have just had a CT scan and hopefully, will find out next week. I’m due to start chemo first, then have surgery, radiotherapy and finally hormone therapy.
Ive already ordered some headscarves and hats because I like to be prepared lol.
Hope everyone is well, and I look forward to getting to know you all.
I had never heard of a therapeutic mammoplasty until the surgeon mentioned it. Basically the lump was removed and my nipple removed and then the breast was pressed to a new shape together with a small breast lift (my mind jumped on hearing these words) was done and then the nipple was put back on with loads of glue. Then the other (unaffected breast) had the same thing done to it so, hopefully, everything eventually evens up! Reading stuff on here, I realise I was very lucky to be given this option, which I naturally jumped at. All has been going well, until about two weeks ago when I experienced an itchy rash over both boobs (and skin on my stomach from the OVERHANG) which apparently is an allergic reaction to the glue. So taking anti-histamine and rubbing calamine in at the moment. It is a form of breast reconstructive surgery and, as I say, I was lucky to have this option. Unfortunately now, I think I may have contracted Covid because my husband and I have mild symptoms at the same time. Could just be a normal virus but we are worried. My Husband is undergoing treatment for prostate cancer too, so we are a right pair! He and I felt unwell so we are waiting for testing atm. Just very worried. Happy New Year to you all. xx
I did have the red devil... the steroids made me high this morning but felt tired mid morning and then alert again this afternoon.
I am resigned I will lose my hair but also not sure I will cope especially for such a long period of time.
I have spent a lot of the day lying on the sofa in front of the TV! Hope you had a restful day avoiding the cold.
Hi @Tomboy7 and a big welcome! Another mammogram find, relief to know it's there and have a treatment plan. It's all rather frightening isn't. I google too much, and read a lot of science which I'm sure not help me... Blinded by it all...
What's a therapeutic mammoplasty? X
So glad you got thru it OK and slept well! I had to take sleeping pill as was wired with the steroids. Did you have the 'red devil' lol...
Oh I'd not heard that about the cold cap. Do hope it depends a lot, not quite sure how I'd manage loosing hair in amongst all this **bleep**... There's a facebook group for it, I'll try to get the link, there's things you can do to optimise it's use...
Hope you're having a good rest today, freezing out! X
Glad it went well. I had a very similar experience with the cold cap. The nurse did say that on EC that the cold cap doesn't work that well.
Strangely enough I had the best night's sleep in months. I am feeling ok this morning and no nausea.
Hello everyone, it has taken me 30 minutes to work out how to reply to you all on here. Firstly, ladies, good luck with all that you have ahead, I think it might be daunting but it is a means to an end and we will get through it! I have not read your posts yet as I just wanted to sign up to this group. Mine starts on 7th January, not sure about a cold cap, but I don't think it is available anyway in my area. Not sure what my chemo meds are, I will post this later but I had a lump in my left breast around about 12:00 and had a therapeutic mammoplasty, I am HER2 negative. Not really sure what this means though, so still struggling with the terminology and treatment. I am hoping to get more information on my first visit to the chemo suite next week. I am up late, I am a night owl, so now it is the last day in 2020 and I have to say Good Riddance to it; it has been a difficult year in so many respects. So good luck ladies for you all to have a much better 2021. xx
Hi @donkeywoman ~ sounds very similar to me, routine mammogram, shock horror, numb...it's crazy isn't it, super well one day, got bc and dealing with the emotional and medical fallout the next. And it all happens so quickly. How long did you wait for your operation? I'm her2 triple positive, they're throwing the book at mine.
But so far, so not too bad... I'm currently on sofa. Did have bit of a turn early, got the tube back home as felt fine, had a pret sandwich and came over all sweaty and hot shivery... Horrible, but all fine when got off train... Now feeling a bit steroidy, wondering how I'll sleep.
I'm glad you have lots of support and friends. Yes, the texts are lovely aren't they but it's hard replying all the time, what's your tip for this?
Hope you and everyone being gentle and kind with yourselves today X
Hi guys, one down, sixty four million to go! Might be a bit preemptive, but that was fine. No discomfort, bit of tingling during infusion but not much, and cold cap was absolutely fine! First ten mins cold yes but painful, not at all. Will write properly later but just wanted to say the nerves were far worse than the treatment. How about you @Cleaeview ~ I do hope you're OK today too? X
Re fasting - try putting it in the search box - there are definitely some women who have done it as I've read about it (in awe!). I couldn't even countenance it - I find I'm hungry a lot anyway, and once the steroids kick in... But I think some people find it really helps. I can't remember which thread it is on, but it's definitely there
Hello @Belinda_F , I didn't have the cold cap, they aren't doing it at my treatment place and I probably wouldn't have done it anyway. I was okay after the treatment, just a bit tired, mildy queasy and mainly glad it was all done! My treatment is Docetaxol, Carbaplatin and Tratsuzomab (the one for herceptin pos tumours). I had to have them all separately in case I reacted to any, so it was a long day. But there was a woman next to me on the same regime, also first one, so we had a natter. The best thing was the nurses - they were friendly and kind and, above all, seemed calm and knowledgeable. I'm a nurse myself, so it's hard for me to put myself in the hands of others, but they were just great.
It's weird, it is kind of a shock, mine was found on routine mammogram (phew). I kind of took it in my stride at first, but seem to be coping less well as the time goes on! Or rather, some days I am completely fine, others I'm a blubbery wreck. I'm just trying to ride the waves 🌊.
All the best for tomorrow - let us know how it goes, when you feel like it. One thing I have found is that my (very lovely of course) friends send lots of messages and I can get a bit caught up in trying to respond to them. I'm weaning myself off this, as can become too much...
TCH I mean, doh!
Has anyone looked into fasting before treatment? I'm trying to do 24 hours but finding that hard today after all the Xmas stretching of stomach eating! X
Hi @donkeywoman ~ you're super welcome! Thanks so much for sharing... I'm so glad you found surgery manageable, it's such a shock isn't it, the diagnosis... How did you feel after your first thc? And sorry for ignorance, what is thc?
I'm going to cold cap tomorrow, bit worried. Did you try it? X
Hi @Cleaeview and @Belinda_F , I'm actually a December starter, but crashing your thread a bit too, as I only started on 18th December. I'm Her2+ too, but have already had a mastectomy and now have 6 cycles of TCH planned. I really hated waiting for chemo, and, although I'm not going to pretend I'm loving starting it, it does feel less anxious. But I do agree about night times, they can be so long, can't they. The one bit of reassurance I can offer is that I found surgery much easier than I was expecting, so you should be getting the hardest bit out of the way first. Obviously we are all different. This forum is helpful too and you can always tap your thoughts and feeling here in the middle of the night. I don't think you will be alone! All the best for tomorrow (mine next one is 8th Jan x
Yes very similar treatment plans and they did say the treatment plan is to shrink the tumour then operate. It is so horrible. Thankfully I come from a close knit family but it is the nighttimes which is the worse (and the daytimes are not great either)
That's a very similar treatment plan to me... 4 X EC but then I'm on taxol weekly for 3 months I think... Have they said the plan is to shrink the tumor then operate? It's all really horrible and hard isn't it. I hope you've got some support at home or with family/friends X
❤️Do ask away on here ❤️ lots of tips, tricks, 👭👭, kindness, support and as unlikely as it sounds lots of 🤣🤣too as you 💃🏻 dance, hold onto the rollercoaster, run the grand national and jump the hurdles without a horse 👍👍 and get through, step by step, keep safe and keeping each other safe ❤️ everyone here understands and always here 👭👭 mountain lion by strawberry blonde think it’s in hope and inspiration has helped lots of us over the years ❤️ 💕💕✨✨Shi xx
Thanks Shi, that is very helpful and informative. That is not TMI at all. The more info the better!
Treatments are tailored specifically for you ❤️ It’s not a one size fits all ❤️ And everyone does what they need to do to get through, no right or wrong way, you put yourself first and focus ❤️ You will settle into routine with the chemo it does take bit of juggling between senokot, anosol when steroids block you up, sorry if tmi. Keep eye on your temp during chemo, keep fluids flowing helps flush things through ❤️ Remember being on chemo is not like normal always ring your rapid response for anything so you help your team get you safely through ❤️💕💕✨✨Shi xx
Like Belinda I signed my consent forms last week and I start first chemo this Wednesday (30 December). I also Her2+ but am scared and worried about my prognosis. I am having EC x 4 every 2 weeks and then Docetaxel x 4 every 3 weeks. That seems so much more intensive and longer than everyone else.
Been here for a month or so but first post. Starting chemo 30/12 so figured that kind of counts as Jan?? Really quite nervous now, had consult today and signed the consents which made it all rather too real.
Diagnosed around 4 weeks ago, her2 triple positive. Some discrepancy as to size, initially 19MM so op then chemo was the plan, but mri was measured again and docs decided on 20MM which took me into chemo before op category. I feel like I've kind of floated in shock thru it all mostly... Diagnosed after routine mammogram, thank god for them! No lymph nodes they think but it's a long haul....
Hi everyone anyway, be great to connect and say hi. Your support really means so much x
This thread is for anyone due to start chemotherapy in January 2021. I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment. If you have any questions please post away on here and others in the community will watch over you whilst you are getting started. Once you are into it you'll be pretty good at helping each other. You can also ask the nurses on this forum if you have any concerns. In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day and get a thermometer and check your temperature every day.
Here is the BCN guide on chemo:
Here’s an excellent article for anyone concerned about hairloss. That’s pretty much everyone starting chemo: https://pinklotus.com/powerup/breastcancer101/chemo-hair-loss-and-menopause-hair-too/
Here are some apps which can help to keep you on track:
I finished my chemo in October 2017 and doing very well again now. Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:
If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in. Your conversations can be a real comfort to others.