I am so sorry you are feeling so rough. Did they change your dose this time or change any of your meds. I felt so awful after round 2 as I had Gosleronic acid and they think they gave it to me too quickly. I didn't have any on round 3 and feel much better. I know I am not drinking enough though so will hydrate properly today.
I think the heart palpitations are from the steroids aren't they, mine race like wildfire for the first four days. I daren't take a blood pressure reading in fear that I might be dying 🙂 I hope your symptoms have eased up a bit and you are feeling a bit better today.
I asked about CBD oil for the hot flushes but was told no, I am not sure of an alternative at present.
Anyway sending you strength and love and I hope you can get out for some fresh air today. I am attempting some work although I am still in my dressing gown!
Thanks Jennet, I will certainly take a look at the link as it looks really useful. Thank you for your kind words too, it is so nice to have this support group. I hope you are doing well today xx
@DAB72 Thanks for your message. I am at a Maggies centre on Wednesday this week as I have the Look Good Feel better session which will be nice. I will see if I can pick up a leaflet about the menopause and support as the only way to get through it at night is sleeping pills which can't be an option especially as I have promised to only take them for the first few days after chemo to get me through the injection pain and side effects. I hope you are ok. Please let me know. xx
My 2nd cycle was very rough, I've spend most of the days since Wed in bed. The sickness, tiredness and heart palpitations have been really awful. I did have some palpitations the first time round but not as bad as this. I phoned my doctors but they said it was the side effect of chemo and it would resolve. I've been feeling really low physically and emotionally, finding it difficult to stay strong. Haven't managed to go out for fresh air, don't think today is going to be the day maybe later this week. 😞
I'm sorry to hear you have to go through menopause this way. Mine started three years ago, I was on HRT for about a year and half and came off it a couple of months before my BC diagnosis. My hot flushes are horrendous and they're another many conditions I'm having to cope with.
I hope you find the right support to take you through this, hang in there.
Hope everyone is doing well xx
Hi @katenonip I hope you managed a good sleep and that things are looking a little better. Menopause can be really difficult and especially if it’s sudden - I agree there should be more support. I found this forum helpful https://www.menopausematters.co.uk
I had to stop HRT overnight, having been on it happily for 5 years. Nobody has talked to me about the consequences of that - hello mood swings, night sweats, brain fog, aching joints. Hard to know what’s a symptom of cancer and what’s hormone changes.
You’re not alone, at any rate, and I hope you feel better soon x
I'm really sorry to hear you are are having a rubbish week. Sending you lots love & hugs. Although I don't know much about forced menopause, as @DAB72 said I would seek advice from your oncology nurse.
Menopause is not a pleasant stage of our lives in best of times but when it is forced upon you like this, it can play havoc on you- physically and mentally. Please stay strong🤗 We will all get through this together. Good days are ahead of us 🌞
Love, hugs and healing power to everyone
@katenonip I’m so sorry to read your post, it sounds like you’re having a tough time at the moment so I’m sending you a big hug 🤗
do you have a Maggies centre near you or something similar like Macmillan ? I believe they can offer 1to1 support sessions and perhaps talking with someone about how you are feeling or the menopausal side effects you are experiencing might help. Maybe your oncologist/breast care nurse can point you in the direction of the support you need. Don’t try to go it alone. Thinking of you and wishing you a better week this week 💐 xxx
How was yesterday? I had my third round yesterday, my chemo nurse said not to have the cold cap as it would be too painful. Sorry I’ve been quiet I had a terrible week. The oncologist has added another round of chemo which was unexpected. Lots of tears and just feeling a bit angry about how little support there is for forced menopause. Took some sleeping pills last night but as still awake a lot. I hope you aren’t feeling too bad. I might try and get some air later as was in bed all day and night.
love to everyone
Thanks I will have a look. I have two bandanas but can do with another one and maybe a soft Woolly hat too. Yesterday I went out and even with cover my head felt cold. The small hair is now coming down in the shower when I wash so my scalp is getting more bare!
We shouldn’t forget scalp care, I hear Bio Oil is good 😊
I’m having my 2nd cycle tomorrow, not looking forward to it as I have to go through that period of being sick and lethargic especially now that I feel a bit normal again. Never mind.
Hope you are well, take care xx
I got some nice head pieces from Anna Bandana, they are really soft and cheap. They do matching PICC line covers too.
I hope you are doing ok.
Thank you 😊 I’m getting used to it, I thought I’d be wearing scarf even at home but I can see that’s not a good idea scalp needs to get air.
I had a bandana and I’ve bought another one, they seem to be a better option than bigger scarves. I’ve tried the ones I have at home and have no clue how to tie them or turn them to turban, need to watch some YouTube videos for ideas 😄 I do need to order a woolly hat though as the weather gets colder.
Oh @Corina that sounds like it was a tough day, but glad they were so lovely to you ❤️ hope you’re feeling ok now.
Now it’s hello endless orders of headscarves x
I shaved my hair yesterday, like you said it was very emotional as the look cements the reality of what we are going through. The person who did it was very caring and kept asking if I was ok and if I wanted the length shorter but I told them to just go for it. I couldn’t stand the hair coming down in chunks like it did.
I sobbed and they did too and they refused to charge me for the cut, that made me even more emotional. Been going to the salon for years so they know me well but I didn’t expect that, these are the times when our faith in humanity is restored. I did leave a tip but I will think of a way to return the favour.
I tell you what though I don’t have to pick up hair from anywhere now, every cloud…!
Hope you’re all well 💕💕
@DAB72 I hope the shave goes as well as it can and @Corina I hope yours went well.
My hubby said the barbers make it look easy, I told him to stick to his day job 😆 It is definitely emotional, but kept telling myself it was inevitable. It relieved some some of my scalp pain to. Even made myself chuck on a headscarf the next morning and go out and I’m so glad I did else it might have taken me a while to build up the courage.
Thoughts are with you all x
Hi @sharlea So glad to hear the extra meds have helped and not having to take the morphine is great. I hope your tiredness is short lived and you’re feeling a bit more yourself very soon.
My second treatment session went so much better than the first; such a relief. I even got free lunch this time 😂. Drank loads when I got home but then was up and down to the toilet all night 🙄 so feeling a tad tired this morning. Had positional vertigo this week (something I had a few months ago, totally out of the blue, for a couple of weeks ) and that was much worse when I went to bed last night but an anti-sickness tablet took the edge off and it’s not quite so bad at the moment. 🤞the rest of the weekend will go smoothly.
Resorting to shaving my head today as like @Corina and @veggiecaz have said, the hair loss is now embarrassing and annoying. Not sure my husband is looking forward to doing it and I know I’ll probably shed a tear or two.
love to everyone💕
Thank you, strange as it sounds I can’t wait to get it over and done with. I just went for a shower and it was horrendous I couldn’t manage the hair coming down I don’t think I even washed it properly.
I don’t wish to sound insensitive or offend anyone but I think maybe the best advice is to cut the hair really short or shave the hair right after the first cycle, no one should see their hair falling out like that.
I guess whichever way we look at this, it’s not going to be easy 🙁
I wish everyone well 💕💕
Good luck with your Chemo on Monday, you’ll be fine.
I booked an appointment to get my hair shaved tomorrow, like you said it’s embarrassing and messy. I thought about cutting it pixie short but surely that will come off too so best to go for the shave I suppose.
Hope everyone are doing well 💕💕
Sorry I’ve been a bit quiet on here. I hope everyone is doing ok.
@Corina and @DAB72 I was in the same boat, my hair was coming out in clumps this week not noticeable to the eye but shedding everywhere. Plus my scalp has been really sore. I’ve found the shedding embarrassing and annoying so last night my husband shaved it off, no1 all over. I was definitely emotional but I knew it was coming. Think it’s just scary making that next step. Do what feels right for you.
I have my second FEC on Monday @Corina I’m dreading it to as this week I’ve felt ‘normal’ and been enjoying time with my kids. Keep telling myself we’re on the countdown, it’ll be another one done!
Sending ❤️ to everyone
Wishing you all the best for your second TC tomorrow. Hope it is far better than your first cycle.
The few extra steroids they gave me, to slowly reduce the dose, were very helpful, as I didn’t get that extreme tiredness two days after. Am starting to feel a bit more tired today, but taking good rests now and again. Thankfully, haven’t needed the liquid morphine either, which is great. Maybe because I’m drinking more than 2 litres of fluid daily, to help flush out the toxins and trying to keep walking about to help move the muscles. Eating little and often too.
My hair is now very thin, but still have a few straggly strands left. Lots come out when even a very gentle wash. But, at least it shows the chemo is doing something, which is good.
Wishing all the best to everyone on our July chemo thread.
Hi @Corina ,
I’m in the same boat as you, my hair is also rapidly falling out!! Delaying the buzzing off as visually apart from looking messy as I daren’t touch it, I don’t have bald patches and it’s actually difficult to tell that I’ve lost a wigs worth already, just a bit thinner. It’s the trail of hair I leave every where that’s getting on my nerves. I’ve also heard that the fallout can sometimes stop for a bit so 🤞.
maybe I’ll see what happens over the coming days as I have my 2nd TC tomorrow. Not looking forward to it but it has to be done 🙂
@sharlea How are you doing? Hopefully the extra meds have helped a lot and it’s been much better than last time!!
hope everyone is coping ok and good luck to all those having treatments in the coming days! Xxxx
Hope your chemo went well.
My hair has started to fall out at a pace and it’s getting hard to manage. I’m debating if I should also shave my hair.
When we say shave do we mean buzz cut or proper close shave? I suppose if we do buzz cut that will also come off?
My second cycle is next Wednesday, I’m dreading it as I’ve just started to feel a bit normal again.
Take care x
Hi there @SeaUrchin I am so sorry for the late reply. I worked all day yesterday and today and am now feeling tired but trying to catch up with a few bits now. My goodness I feel much better now thank you. How are you doing? Are you used to the hair now? Good luck tomorrow with your second round xx
Hi @sharlea and good luck with chemo this cycle- I hope it’s getting easier each day.
im Day 8 round 2 - one more of this EC and then Pertuzumab, Trastuzumab and Docetaxel from September for three rounds. And then we’ll see if it’s having any impact…hopefully there are effects as well as side effects!
cold cap definitely hasn’t worked but I have resisted shaving. My head looks like a badly plucked hen but thankfully I’ve never been a vain woman and I’m finding pretty scarves in charity shops (I go when they’re quiet - my son said, do they give you a discount in Cancer Research? But no they don’t and neither do they insist on masks).
im realising that I can’t wait until treatment finishes to get on with my life. There will be a time when ‘this is all over’ but meantime lots to get on with. Hope you’re all coping with this cycle and I can recommend punching a cushion when it all gets too much cxx
I’m so pleased you are feeling better.
I’m having 3 cycles of EC for period of 9 weeks and then Tacxol once a week for 12 weeks followed by radiotherapy. Not sure how long for but I think it’s for three weeks.
I’m forcing myself to eat mainly to fit in my clothes 🤣 I need high calorie food, if I was close to McDonald’s I would have a burger often but problem is the taste is not great for me atm so have to resort to other food.
Hope everything goes well with your treatments. We are all in this together xx
You are very brave, I’ve started to think about shaving my head probably after the second chemo. I cut it short before the first injection but I guess soon the inevitable will happen.
Good luck with the next treatment, hopefully it won’t be as bad as the first one. My symptoms lasted about five days and this week I feel like a human again.
The sun is shining today and that makes everything better 😊 x
Hello to all going through chemo this month, and hope everyone is managing as well as possible.
I had my second cycle of TC last Friday, and was given a lot more, additional, take home drugs, to help with the side effects. Hopefully won’t need them all, as been given 3 x 100ml bottles of liquid morphine, to help with last cycles severe musculoskeletal pains during the first week. This time last cycle was very unpleasant. Thankfully, I’m not feeling as bad, due to drinking 3 litres of fluid every day so far. Apparently one of the bloods indicated a score slightly higher than the top limit of something that could cause kidney damage, so was told, very firmly, to drink lots, lots more!
Hair really thinning out, on head and down below (sorry if tmi), looking very straggly, but no more tender scalp, which is good.
Found out on Friday that I’ll be having 6 cycles of this TC regime. It’s a long haul, this flipping chemo, but, worth it, worth it ....
Hi @SeaUrchin ,
My tooth is much better thank you. I finished the antibiotics on Saturday evening so hopefully it’s all sorted now. My next chemo (cycle 2) is Friday so COVID test and bloods tomorrow and oncologist call on Thursday. Not looking forward to it after last time’s fainting episode; hoping the cannula insertion works first time this week!! Avoiding buzzing my hair off for as long as possible but it’s falling out quite a bit now. Visually you can’t tell but with a just below chin, all one length bob, I’m starting to get fed up with hair in my dinner and the wig on my shoulders. 😂 trying to laugh about it although I have my moments of tears now and again. 😪
Good luck to you for Wednesday and to any one else with treatments this week! 🍀🤞
How are you all doing?
@DAB72 is your tooth better now? When is your next chemo?
@Jennet I hope you are feeling better each day. I agree that cold caping has been in vain in my case. After losing a lot of hair, I had it shaved yesterday. Although my scalp is sore, I'm feeling much better about it like @katenonip. My oncologist also said I won't be having any scans until after my chemo finishes. I wonder whether it is depending on having adjuvant or neoadjuvant chemo. I'm having adjuvant chemotherapy. I have an appointment with my oncologist tomorrow, I will ask this question.
@katenonip How was your day 3? Having to rest is easy said than done when you have 5 year old. I hope you are getting some rest. How is your appetite? As @Corina said, Omeprazole really helped my heartburn which I only started taking halfway through the first cycle.
I felt much better on week 3 and ended up working through the week but with shorter hours. My second chemo cycle is on Wednesday. Getting the portacath flushed and blood/covid tests done tomorrow.
Wishing you all a better week X
How are you feeling today? I hope you've managed plenty of sleep.
I was prescribed some Omeprazole on Friday and that has really helped.
I hope you are doing ok xx
Thank you for your message. I hope you are enjoying a quiet weekend.
I have been prescribed Omeprazole on Friday and yes it is doing it's thing which is wonderful.
Sorry to hear that you had covid and your sense of taste is still a but rubbish. It can't help with an appetite either. How many rounds of treatment are you having? It feels forever to think of 3 years time. I has horrid hot flushes all night and spent most of the night awake so feeling knackered today. Hope you are ok xx
I’m sorry to hear you’re going through this tough times, I didn’t fully appreciate that there are different treatments for different stages. I hope you have a safe and speedy recovery.
Did they give you Omeprazole to take with your meds? It’s supposed to line your stomach and ease the heartburn caused by the drugs.
I guess with so much drugs and toxins in our bodies we are bound to have these side effects.
My problem is that after Covid I developed smell disorder and most foods smell and taste pungent especially onion and garlic so it’s been very hard to eat for past few months and now with Chemo it seems to have got worse. I don’t know which is worse cancer or smell disorder! ☹️
Here’s hoping for better and brighter days for all of us xx
@katenonip So tired from today’s one but that’s it so far. Slept on the sofa for a couple of hours. 3 done 13 left 😁
I found drinking milk and sometimes vanilla ice cream helps with the heartburn. I have 2 bottles of gaviscon here which I bought when I had it horrific cycle 1 but weirdly the milk helped more. X
Thank you for reaching out. Yes I found the first 24 hours the worst for feeling sick. I suppose apart from a hangover I have never experienced anything like it as had no morning sickness when I was pregnant.
So I am Her-2 positive, Stage 1, grade 3, had reconstructive mastectomy 12 weeks ago. I start Herceptin in round 4 for a year. I also have to be placed into the menopause for 3 years so that I can be given the biosopsonates. Brutal as now stops any future babies (we have a 5 year old and I am 42). So I have to have the goslerin implant monthly for 3 years.
The chemo nurse had words with me this week about hydration as they couldn't draw blood from my PICC. I have lost 4 lbs in a week so am cooking onion bhajis and curry for dinner, not sure it will help the heartburn but will add calories. You just can't win can you.
Lovely to hear form you. Rest up and thank you for your kind words.
I heard that the first one can floor you mainly because the dosage isn't quite right for your body measurements. I suppose a lot can change from seeing the oncologist to the first round. I have just picked up some meds for raging heartburn, apparently another lovely side effect of the EC/steroid combo. Fingers crossed that works. Your treatment sounds hardcore, you sound like you are nailing it with great strength. I wish you a happy weekend with lots of rest and feeling good. xx
I am glad you are doing well after round 2, I feel like I have contacted a doctor everyday this week for change of meds or weird side effects. I did the cold cap for the first two rounds. I had my head shaved last Saturday, it was actually really nice to not have anymore falling out. I get more sad faces now but to be honest I think I was pushing myself too hard trying to be 'normal' with being a mum and still working so it is quite nice that people now actually can see that I am poorly and not superwomen.
Yeah, I was told I will only be on annual mammograms. Seems so weird doesn't it to not get a full MOT form cancer after going through all this.
I hope you are resting well and taking plenty of time for you.
@Jennet R u sure re scans? I had an ultrasound on Tuesday (before cycle 3) to see if any change. It started at 1.7cm and now is 1.4cm, it’s nice knowing what we are going through is working. I would ask your oncologist again (unless they did my scan due to being triple negative)
Hi @katenonip I hope you’re feeling better today. I had my second round of EC on Tuesday and am just exhausted but otherwise fine.
Hair all over my pillow so the trauma of cold-capping might have been in vain,
my oncologist said I won’t be having any scans until after the chemo- how do they know if it’s working then?
Bit annoying if I get to round 6 and it hasn’t done anything…
strength and hugs to everyone xxx
Good Luck today Sharron!!! Hope to hear from you in a few days once you’re feeling up to it. Hope the side effects are better this time too, now you have the new dexamethasone regime.
my tooth problem seems to be improving but all my teeth and gums feel super sensitive at the moment. I noticed a bit more hair than normal falling out when I washed it yesterday so I think i’ve joined the path to baldness….
🍀🍀🍀 see you on the other side xx
@katenonip It’s weird how each cycle is different. My first was terrible and I felt drunk 🤪 the nurse had to help me to the car park but the 2nd one was completely different and I came home with loads of energy.
Your sleep should get better once you have finished all the drugs they give.
I have EC once every 2 weeks and then it changes to weekly with Carboplatin and every 3 weeks Paclitaxel thrown in (I think that’s the way round)
Sorry to hear your chemo rounds are rough, I had my first one a week ago and for five days I felt very tired with no energy or appetite whatsoever. The first day was awful feeling sick but the meds helped.
I noticed you mentioned you were given Bisphosphonate. I thought this was something they would prescribe to post menopause women (like me) after the chemo treatment.
Hope you feel better soon, drink lots of water and eat fruits and vegetables 😊 xx
Nice to hear from you. I had my second round last Thursday, it hit me really hard this time. I think I thought I’d be ok until cycle 4, boy was I wrong. I think it might have been the biosophonates which they did over 15 mins but I’ve been really rough. Currently laying here not being able to sleep. Not slept properly since second round. Had last injection yesterday so am hoping I am now on the up ready for round 3. How often are your cycles? I started 7th July. Best of luck for tomorrow. Are you having EC? X
Hi @katenonip , this is the July forum. I had my first cycle on the 9th July and my third one is tomorrow.
How are you managing?
I am trying to join the July chemo started page but no idea what I am doing. I started 7th July and would really appreciate some friends going through the same thing as quite frankly this is hell and we all need a hug xx
Hope things are going as well as can be for you.
Hopefully your wisdom tooth is starting to settle down and the antibiotics doing their job. I was told by the nurse to ask for an urgent temporary fillin, with no invasive treatment. I saw the dentist on Monday and ended up having 2 temp fillings. At least that will help prevent infections.
My hair started to come out last Thursday, and it now feels very thin, but still have some. Looks ok with a headband for now. Bit of a tender scalp now and again.
My oncologist phoned this morning and we had a good chat. The chemo will remain the same but she is adjusting the steroids, so to give a gradual reduction instead of the 8 each day for 3 days. She called it the 3,2,1 approach. So, on the 4th day will have 3, then next day have 2 then following day only 1. Should stop the drastic change from feeling ok to totally whacked. Also giving a liquid morphine to help with the pain during the first week, can take when needed and will also help to get a better night's sleep. Yup, a common side effect from the TC chemo is to feel like bad flu pains combined with a bout in the boxing ring.
We agreed it was manageable, but no picnic. To drink between 2 - 3 litres daily and to rest as much as possible. That the tiredness may well be accumulative, as would taste changes. What joy! At least I still have a sense of humour, I told her.
Bloods done this afternoon, hopefuly should be ok, And the nurse admired my portocath, say it looked very good. She asked if it had given me any problems, well it does hurt now and again at the jugular insertion point. What was interesting, was she said that chemo slows down the body's healing process.
Take care, and let me know how things are going for you too,
all the best,Sharron, xx
how are you doing? I hope your oncologist call and bloods go well today!! How’s your tooth?
ive also had a tooth problem. I have a wonky wisdom tooth that catches food easily. Unfortunately, my gum has all swollen around it and despite regular salt washes is very painful. I contacted the oncologist nurse on the urgent number I was given, and now have antibiotics, as of yesterday. Wondering now if I should contact my dentist?
When did your hair start coming out? Mine still seems intact at the moment but I know I’m a week behind you so expecting it to happen soon.
anyway good luck for today and fingers crossed Friday goes ahead as planned. Let me know how you get on.
all the best
Thanks Sharlea, I’m so glad to hear that things get better between cycles. Don’t want to speak too soon but today I am feeling better. I had to force myself to eat yesterday so maybe that’s why, I can’t afford losing more weight and don’t want my treatment to be delayed. I can’t wait to get out for a bit of walk and fresh air.
Wishing you and everyone well xx