Hi @amy46 and everyone,
I hadn’t really been paying attention to bloods but my third cycle was delayed by a week due to a bad cold and so I had a look at the white blood count and it was quite a bit lower than at the blood test taken before my first cycle - almost half. That and seeing how wiped out I was by a normal cold has made me a bit paranoid about infection. I’m working from home, only seeing people outdoors and generally being hugely cautious. I don’t want any more delays or to put myself at risk if I don’t need to.
The thing is, I’ve got a two year old who’s in nursery, so germs are flying round everywhere. It looks like he’s getting another cold and I’m having to avoid hugging him, not doing bedtime or bathtime, washing my hands like a maniac and it’s very hard not to be able to do normal things like hug my little boy.
On a more positive note, this cycle has been better as I’ve got something to help me sleep and my hair seems to have stopped falling out. I do have an elaborate combover worthy of Donald Trump, but at least I look vaguely normal.
I thought the look good feel better thing was great, I picked up some useful tips and it was really nice to spend some time with people going through the same thing as me. I don’t really see any other patients when I go for my chemo so it made me feel quite emotional at the start to see so many brave ladies sat there.
Some of them seemed to be being extremely cautious about shielding and I just wondered what you think about it or have been told? I have kids at school which is obviously a risk but I am also seeing friends most days for a walk or a coffee outside. If family come they take covid tests first but I can’t bear the thought of completely cutting myself off for five months. Have any of you had a low white count yet on your bloods? I’ve no idea when to expect this? I have the filgrastim injections for three days after each weekly chemo and the last two weeks my white count was ok.
Hope you have all had a good day xx
Had my second EC and the nurse said to continue using the cold cap for protection of the follicles and regrowth purposes - I have lost about 50% of my hair after 1st cycle so was in two minds to continue so glad to get the advise off the nurse and will continue as suggested
Hope this helps anyone having second thoughts
its fglb.org.au and look on the menu for workshops Hope you enjoy it I did
hopefully you can snuggle those grandies soon 💕🥰
It's good to read how you are all getting on. As has been said, it's nice to know we are not alone.
Can someone give me a link for the look good feel better site? I can't seem to find it and it's something I would like to try.
Like you @mbElizabeth I am lucky enough to have family close at hand, but I am really struggling with not getting the cuddles I really want. My oncology nurse implied I have to be really careful of avoid picking up any infections, not just covid, and it has made me really wary of seeing my family, even though it's the one thing I want to do. I know it's not forever, but having waited so long during lockdown to spend time with them, I was really looking forward to spending summer time with them, and then because of my diagnosis in June, everything went to pot. I really feel I'm missing out on some 'special time' especially with the younger grandchildren.
Anyway, every day is a step in the right direction, so keep up the fight ladies - we've got this
hope you enjoyed the look good feel better session today I know I got a few tips from it
I too did the shave yesterday after my hair just fell into my hands in the shower and it really brought all my emotions to the surface from this last few months of turmoil
We must be strong and positive and take this day by day
my children are older and I have grandchildren who I love with all my heart and they are really upset about my cancer so I strive to reassure them all the time that I will be ok all the time with a smile and a cuddle💕
I hope you enjoy the Look Good workshop this morning. I thought it was fab. I’m doing the nail one tomorrow morning. I’ll let you know what it’s like 💗
I know EXACTLY what your mean re the fear of reoccurrence hitting hard at times. I was washing up after a Sunday roast yesterday and got really emotional and teary. It was totally out of the blue as normally I do well not overthinking it. A friend of mine who went through this last year has just finished a course of counselling through Macmillan. Mainly for this very same reason. She said it was excellent and she is a counsellor herself! I am going to have some too I think. Once I complete my treatment. Def don’t shut your worries away and try to deal with them on your own.
We are so lucky with all the treatments that are available to us. We will all be just fine and be annoying our family and friends for many years to come 😂💗
I hope the ‘double whammy’ doesn’t floor you 🙏🏻 Sending love and hugs. Sarah xxx
I think you ladies are all very brave to do the cold cap. My oncologist didn’t think it would be successful for me but I am
such a wuss with being cold I’d already decided not to try it! My hair started coming out on Friday exactly 2 weeks after first treatment. Saturday there was more and so much came out in the shower I just decided to go for the shave. It’s not awful but I definitely feel I look more cancery which I hate. At least I know it’s working as I’ve been very lucky with other side effects so far. I get the double whammy this week with the Carboplatin added to the Paclitaxol though so I might not feel so good next week. I had a massive wobble last night with the feelings coming back from around diagnosis time - sudden fear that I may not be here to see my children grow up. Most of the time I seem to be able to squash it down but sometimes it bubbles up and feels so overwhelmingly scary and so bloody unfair when I have tried so hard to be fit and healthy.
I know I can deal with the treatment it’s what comes after a d the constant fear of it recurring that really gets to me.
Anyway, sorry. That’s not a very cheerful way to start the day it’s just I’ve been awake for ages fretting.
On a more positive note, I’m doing the look good feel better today. I wonder if any of you are doing it too? Xx
Def keep going with cold cap if you can. I’m going to. Even with considerable hair loss it will protect your follicles and also is meant to support faster regrowth. Good luck with everything. Sarah xxx
it’s great to be able to hear others’ experiences. I have had two cycles of EC, both with cold cap. My hair started to come out on day 20 but that’s not yet noticeable looking at my head. I have headwear and a wig on order in case I lose a lot, but will probably keep on with the cold cap anyway.
After my first round of EC I suffered horrendous vomiting and nausea which basically incapacitated me for the first 4 days, after that I was still nauseous for another week but it was more manageable. My team responded to my tale of woe by providing stronger anti-sickness meds for round 2, and that has made a big difference. No vomiting at all so far, and definitely reduced nausea. So certainly worth pressing for more meds if you’re suffering.
I found drinking lots of coconut water helpful for constipation (it also slipped down easily when I was feeling sick). Luckily it was on special offer in my supermarket! Eating liquorice seemed to help too when I felt up to it.
Thanks to everyone for posting, and best wishes to you all xx
I'm on day 18 and my hair has started to come out 🤦♀️
This has been what I've been dreading most but iv pulled on my big girl pants and trying to be brave.
I used the cold cap too and am planning on continuing to do so even if it all drops out.
Iv got a wig upstairs ready just incase.
I just want to say that I am so grateful to u all for posting in here - it really does make me feel like im not alone through this.
Let's keep going girls ❤ xx
I’m using the cold cap. I’ve had two cycles of EC so far and will have my third on Friday. My hair started shedding on day 19 and it’s kept going although it seems to have slowed down a bit. It’s very thin on top so I have to do a kind of combover to hide the thin spots.
I still have a lot of hair, but it was very thick to begin with. I’m in two minds about whether or not to continue with the cold cap. I have heard that it can support faster and healthier regrowth even if you lose a lot, that’s the main pro for me.
For now, I’m learning to tie headscarves and will start layering the make up on with a trowel!
I’m using the cold cap. I’ve had two rounds of TC so far. I started to shed on Day 20. I shed a fair amount for about 5/6 days and then it slowed right down.
Apparently it normally starts from around week 2/3 of first treatment.
I’m brushing mine through twice a day and I keep it tied back. I do lose some every time I brush but not as much as in those 5/6 days. Is your scalp tingly and sore? This is a sign that shedding will start or continue apparently. If your scalp feels like it’s calming down the shedding may lessen over coming days. Mine was mostly in my crown area.
I am on the FB group Paxman Scalp Cooling Group. If you’re on Facebook I highly recommend it. It’s the cap we use here in the UK. Loads of advice and tips from women taking a variety of diff chemo drugs. Paxman say losing some hair is unavoidable and totally normal whilst using the cap. Even if we lose considerable amounts they say to persevere as it will support faster regrowth after treatment ends.
I hope your next treatment goes ok on Monday. Another one in the bag and a huge step closer to getting it over with!
Love Sarah xxx
It's so good to be able to get advice from this group - I had the cold cap but my hair has just started shedding today day 16 and feels like half of it came out in the shower this morning.
I haven't booked the wig appointment yet but probably should get on with it sooner rather than later.
I've booked onto look good feel better workshop which I'm looking forward to and wouldn't have known about if it wasn't for this group.
Got my next EC on monday - has anyone else had the cold cap but still lost hair ?
So glad to hear you are doing a little better this round 😊 Constipation is not ideal though. I had it quite badly first time round. Not so bad this time. I did take Senicot though. They do two strengths. I took the lower dose. One every night the whole way through. And this time for the first two weeks. I ate raspberries and figs with green yogurt and honey. Plus I drank an expresso each morning! Not sure if that all helped though.
Myself and @HighlandGirl have done the Look Good workshop. And @amy46 @is booked in! I started with bare face. But they go through cleansers/toners so you can always clean your face during that bit. It was good, hope you enjoy it 😊
I hope you have a successful wig appointment too 🤞🏻
My school all started back this week, I feel totally out the loop with it all. Luckily I have a super TA and she messages and calls me with updates and school gossip 😂
Sending love. Sarah. xxx
It’s lovely to hear how everyone is doing. I’ve certainly felt better during my second cycle (apart from being a little constipated - anyone got any tips - I’m reluctant to take meds as I did that last time and went the other way making myself unwell with dehydration) - my oncologist has reduced my dose slightly as I was given quite a high lot the first time around so think that’s made a difference.
Haven’t been able to find a wig through the NHS that I like so have found a local shop that supplies them so have an appointment for next week.
Im still struggling with how I look without hair and feel it’s so obvious that I’m now the Cancer patient.
ive book myself onto the Look Good Feel Better workshop this Friday for makeup tips so that’s something to look forward to. Has anyone done it? Is it best to stay makeup free for the session?
Take care everyone
Mine started to fall out on the day of my third Paclitaxol which I think is quite common.
7 days later and still have lots of hair but so does my carpet! 😂
Oooh Fab! And like @HighlandGirl said, you get a super goody bag too. Loads of lovely products to pamper yourself with. Not had mine yet but friends have sent me photos of theirs and they really are great. Such a lovely thing to be offered xx
@HighlandGirl Good tip about the scalp ph I never would have thought of that thank you!
I’m going to hang fire a bit before I shave my hair as none has come out yet. Third Paclitaxol this Thursday so maybe after that x
I’m booked on the course next Monday, really looking forward to it. Glad you e joyed it and found it helpful 😊
It sure is! This workshop was a definite mood lifter for sure. It was about 2.5hrs! We ran over slightly as people had lots of good questions and were sharing product advice and good tips! No one wants to be in this club but things like this make it a little more bearable xxx
I did the Look Good Feel Better make-up workshop on Friday. I thought it was brilliant. Lovely lady running it and 9 other really lovely ladies. We had a laugh and I picked up some really good tips. I have signed up for the nail one on 14th September. So lucky that things like this are available xx
Glad you are feeling better, that’s a relief.
That’s useful to know too re the medication for times when you are in need.
yes in totally get that feeling too..my hair was super long and thick.. has it cut to my shoulders in prep and now after 6 days of falling out it’s really thin. Like you my wig is really lovely but it’s a bob type length as now used to shorter hair.
As much as possible I would like to keep wearing make up and keep my identity, I don’t want to look like I have cancer.
Today I am going to self tan, I hope we can!
Thank you for the tip on coconut oil..I will buy some…I have tried to find a scalp look good feel good but they are on the day & time I have my chemo so unable to attend on line.
@amy46 I'm sure everyone's hair loss is different. However my experience is this. I shaved my head 2 weeks ago, when it started seriously falling out. Even with the shave I still had lots of tiny little hairs over most of my head. Since then the tiny hairs have been shedding and I'm now much bolder than I was 2 weeks ago. Nothing appears to have grown for me. I haven't lost my eyebrows or lashes yet which I'm very grateful for, but I am expecting them to go when I start Decetaxel in October.
@justine1970 I have found my wig to be quite hot so good idea to wait for the hot weather to finish before doing the shave. I've actually enjoyed wearing scarves and hats though so it's not been a big issue for me.
The big thing I learnt this week is do no put shower gel or moisturiser on your scalp as the PH of your scalp is different to the rest of your body. I've now started using coconut oil and massaging it in daily.
Also, ladies, look up 'Look Good, Feel Better' and do their online workshops. This week I've done the makeup one and the nail care one. Both were great and they send you a goody bag afterwards! I'm still waiting to do the scalp care one at the end of September.
I totally understand what you mean. I had a good sob about my hair last night. I’ve always had really thick long wavy hair and I’m so sad about losing it. It also feels like I will finally have to accept that I really do have cancer once once my hair is gone. It’s very symbolic. And such a visual clue to others. I’m trying to be brave about it but it’s quite hard. None of mine has come out yet so I don’t know what to do about timings. I do have a beautiful wig that’s actually very much like my old hair. Hopefully it’ll be comfortable 🤞🤞
good idea I think to wait if it’s going to be hot this week x
I’m feeling a lot better, thanks @justine1970
I was prescribed promethazine hydrochloride which I understand is one of the ingredients in Night Nurse. It definitely works and I don’t seem to feel too drowsy the next day.
I hope you are starting to feel better and can have your treatment soon.
My doctor has given me zopiclone for sleeping but they are super strong! What have you been given?
I am holding out now until Wednesday as the weather looks hot next week so I don’t want to wear a wig in the heat! It started falling out on Tuesday so this is day 5..its everywhere though and it’s becoming annoying but it’s my last thing of me if that makes sense.
good luck with yours too..I have a couple of wigs and a topless wig (just the sides) that I will wear with hats.
thanks for your reply. It’s a bit frustrating to have a delay as apart from the cold I felt like I was handling the side effects well, but having had a big sleep I feel so much better that I can see it would have been bad for me to go ahead. It’s a marathon, not a sprint!
I’m so sorry you’re feeling so rubbish. Last this you need is a cold to fight off. I am super pleased to hear that you managed a mammoth sleep though. That’s got to go some way towards helping you fight this cold off. Bet you could’ve hugged the GP! Sarah xxxx
@justine1970 Just wanted to wish you luck with your hair shave. I think I’m going to do it next week even though no sign of it coming out at all yet. Does anyone know - once you’ve shaved it, is that it or do bits grow back even on chemo? X
My third cycle of EC was delayed today because I’ve been battling a cold for three weeks now and it’s not getting better. I’ve got antibiotics and a week off to sleep, eat all the vitamins and relax.
I’m disappointed about the delay, but wasn’t up for feeling any worse, so it was the right decision.
I also mentioned the sleep problems to my gp and she prescribed an antihistamine which causes drowsiness. Tried it last night and slept for 11 hours!
So had my second round of docetaxol and phesgo on Wednesday. They managed to not have me react that time after another pile of piriton and extra steroids up front. Nausea seems worse this time around but the tapering of the steroids has at least stopped me crashing on day 3. I made it past lunchtime!
Does anyone else get really bad brain fog for the first 5 days or so? I feel utterly away with the fairies and can’t tell if that’s the chemo drugs, the mild lack of sleep, the anti ovary injection or a combination of all 3.
I’m really appreciating having my diary of symptoms from last time, makes planning so much easier. I’m expecting to utterly crash this weekend so have basically marked the next two days as mostly bed days where I pool enough energy to cook a main meal and supervise some washing getting done.
For those of us dealing with the hair loss I found this video really helpful for learning to tie a few different styles of head scarf https://youtu.be/5yeNjDPbEZY after raiding a few charity shops I got some cheap scarves in lots of different shapes, colours and sizes. I can pretend like I have long hair again and have something to fidget with (I always used to play with my hair). For those on the cold cap massive fingers crossed for you all that it does the job 🤞
I had my first carbo/plaxo 3 weeks ago then 2 weeks of Plaxo…then the same again for the next 12 weeks then 3 x EC.
So far have felt ok on all 3..slightly achey today but probably from lack of sleep due to the steroids yesterday.
My hair started to fall out yesterday (day 15) so getting it shaved off this weekend and putting my wig on.
I am triple negative.
Well done on the run!
@bananasatsuma Instead of taking 4 tablets for 3 days. I took 3 on day one after treatment. Then 2 for the following 2 days. I decided myself how many to take. My nurse seemed a bit blasé to be honest 😳 I kind of got the impression I could forgo the whole lot if I’d wanted to. Was far too scared to do that though 🤦🏼♀️ I’m pretty sure they go quite a way to getting you through some potentially horrid side effects. Def worth asking though for sure. They may say no but you never know xxxx
Re the sleeping. I was exactly the same after my first round. When I went in for my second I asked the nurse what could be done. She asked about sickness/nausea and I hadn’t had much/if any so she said I could lessen my steroids this time. I did and it made a huge difference to being able to sleep. Not perfect by any means but much better. Was able to actually get to sleep at a reasonable hour and then stay asleep for 5/6 hours. That didn’t happen when I was on max steroids. Sarah xx
That sounds tough with a little one to look after. I hate not being able to sleep. I’ve got a couple of suggestions. Have you tried melatonin? And also CBD oil might help. I am taking both. You need a reputable brand to buy from. Xx
Hello all, this is my first post but started chemo on 6 Aug. I’m having four cycles of EC then 12 of paclitaxel. I’m 39 and I’ve got a two year old. My cancer was invasive ductal carcinoma, 2.7mm, HER2- but oestrogen positive, two of 17 lymph nodes were positive. Had a lumpectomy and lymph node clearance followed by second surgery to get clear margins.
So far I’ve used the cold cap for both chemo cycles but my hair is coming out thick and fast. I’ve got (had) very thick curly hair so it’s not that noticeable but if it continues at this rate I’ll have none within a week. Also got a fetching bald spot at the crown. I’ve decided I’m giving the cap a go for the next cycle but if the shedding continues I’ll stop and shave it off. I’m not going to spend the next four months dreading every hair wash.
So far for me the side effects of the EC haven’t been so bad, I’ve not had any nausea or sickness. The worst thing by far has been sleep disruption from the steroids. I take them for 3 days after each cycle and for about 5 days I can’t sleep for longer than a 90 minute stretch. I get a grand total of about three hours a night, with big gaps between each chunk of sleep. This means I’m exhausted by midweek after chemo. I’ve mentioned it to the nurses and they just keep telling me it’s normal, how does that help?
Has anyone had the same and any success improving the situation? Atm I’m on fortnightly cycles, so I can catch up on sleep in the second week but I’m really worried about how I’ll cope with weekly cycles!
Morning @amy46 of course you can join us ☺️
I’m having different treatment to you. X4 of TC. Grade 3 Hormone + HER2 - Lumpectomy. No lymph node involvement.
I had my second round last Friday and I think side effects have been slightly less this time. Although I think someone has already mentioned … Going into the second one being more aware of what’s likely to occur definitely helps. I didn’t feel too nauseous after round one so I lowered my steroid intake this time. That helped me to sleep better. I don’t feel so good when I wake up but once I’m up and about I’m fine. Energy levels are def on up again now from Friday.
Sending love. Super impressed you’ve managed a run or two 👏🏻👊🏻👏🏻 Sarah xx
Morning everyone, I joined the September starters but I was wondering if I could also come on here as it seems I am the first one to have had chemo (started Paclitaxol and Carboplatin last Friday) 12 cycles the due EC four cycles 2 weekly. I’ll stay on September too as they are a lovely group but I was hoping also for a little support from people a bit ahead of me.
I had a WLE first 35mm Tumour nothing in the nodes grade 3. Then a licap flap. I have coped pretty well with the first chemo. No sickness just feeling a bit odd and occasionally a bit fluey. No temp. Had one day where I felt a bit gritty all day but mostly I’ve been better than expected. Even managed a couple of short slow runs. I was just wondering what I might expect after second one? Could I get lucky again?
I've had 2 ECs so far (I'm having them fortnightly). I cold-capped for both of them. My hair has started falling out, it has happened really fast, it started on Saturday and I think I have lost about a third of it in 3 days.
I'm feeling ok, the worst bit for me is the Pelgraz injection, that makes me feel really sore for three days, I can barely move with the pain.
Sending my love to everyone, take care of yourselves 🐵
Well done on the hair shaving.. mine hasn’t started to come out but I am on day 15 so think it will be soon. Going to get mine done this weekend. Very anxious about my first glimpse and the meltdown that will follow.
in hope your next cycle goes better for you.
Purple world ❤️ Do let your team know how anxious you are when you go for treatment, they will reassure you and keep close eye on you during infusion ❤️ After I had reaction on 2nd T my head was 🤯 and I just wanted to leg it, but you keep 😁 think that’ll be another one ticked off and treat yourself to something nice ❤️ Always reward yourself with a treat ❤️ 💕💕✨✨Shi xx
Sending you love for tomorrow. I hope that your oncologist can make things a little easier for you this coming cycle. It’s a long old time to feel rough if not.
I am a teacher too and will likely be signed off for the duration. I had been hoping to go back in some capacity maybe during weeks 2/3 of the cycle when I’m feeling ok. But I too am worried about germs! Coughs, colds AND tummy bugs are always rife in school during Sept/October 😳 so I think probably best to stay away. Work have also been very good 🙏🏻
Thinking of you, Sarah xxx