oh that’s weird isn’t it after mine being the same! So glad you got to have yours too…mine was 1.1 so just slid in too!
just did my first of 3 injections this week…hoping the bone pain isn’t so bad this week…it makes me comfort eat!
Hopefully it’ll stabilise there then 🤞
I was surprised to find my white count on the cusp today 1.5 so only just got my Paclitaxol. Apparently not uncommon after the Carboplatin last week but was a bit of a surprise. I thought it would be Covid stopping my treatment this week! This cancer malarkey is full of unwanted little surprises 🙄
I have a PICC line, it’s fine. No pain when it went in, no discomfort now it’s there, and makes chemo infusion really easy. Certainly I found it easier than the cannula - like you, sometimes the docs/nurses had trouble finding a cooperative vein for the cannula, and I always seemed to get a bruised hand from knocking it while it was in place. The hospital gave me a prescription for a waterproof sleeve to cover the PICC when in the shower, which is only mildly inconvenient.
I bought some cotton PICC sleeve covers really cheaply from Anna Bandana, they have loads of colours and patterns in different sizes and they are way more comfortable than the cover the hospital provided, plus they don’t look “medical”!
That sounds like chemo flush. I tend to get it days 2-4 of each cycle. Not sure if it is related to the steroids or the chemo itself. Just looks like you’ve caught the sun and can feel rather warm to the touch. I think my treatment team weren’t at all bothered unless it turns into a rash, itch’s or starts to hurt, but mention it to them if you feel at all worried.
Congratulations on getting through all you EC cycles!
Hi there, I initially resented my picc, as it can be quite limiting in the shower and during exercise, but it certainly makes life so much easier for taking bloods and giving the chemo! You need to have it flushed through and dressed at least every 10 days, but if you’re changing to weekly treatment you shouldn’t need extra appointments. I was anxious about the picc line insertion but it was was fine!
Had my last cycle of EC on Tuesday - I’ve got a 3 week break and then I start Pacli every week for 9/12 sessions. My nurse suggested I consider a PIC line - has anyone else got one? What is it like to wear? It took 3 attempts to insert the cannula and they can only use the left side due to mastectomy!
Also I’ve woken up this morning with my face and neck looking a little flushed - could it be a side effect of the steroid?
Take care everyone x
Its 113 which is ok but it was because it was apparently a huge drop.
They have said that food won’t help but I am trying it anyway, spinach tonight and yes I eat red meat so will try that too!
@justine1970 It all seems so random doesn’t it?! How low was your Haemoglobin? Spinach?? Lots of or a nice steak if you eat meat?? Xx
yes I have 3 injections a week so hope that will pick it up.
as for the hemoglobin it’s hard to pick it up yourself isn’t it, feeling very tired and more breathless.
Oh no? Do you have the injections to keep your levels up? Hope you are ok? You probably feel a bit rubbish if your haemoglobin has dropped ☹️ Sending hugs x
Today my bloods have taken a big dive, they did the chemo but need monitoring and I hope they go back up.
Has anybody else had this? My hemoglobin has dropped a lot.
I too have had two sessions of EC. In week 2 after the first session I did develop calf pain but it was manageable with paracetamol and disappeared after a few days. I also do a lot of walking - not sure if this helped. Now waiting to see if the leg pain returns this cycle.
Like you I have cold capped. A lot of hair has fallen out and the thinning is really obvious to me, but no-one more than a few feet away is likely to notice (yet). I have a wig but haven’t worn it out yet. Hardly anyone knows I am having treatment but they’ll certainly notice the new hair cut, even though it’s not super radical, so I kind of feel that once I start wearing it there’s no going back. It’s a big step!
Good luck with the legs and the hair! xxx
I get calf pain and find that walking helps. I also take paracetamol.
Have you tried putting heat on it?
Also maybe try putting your feet in a bowl of Epsom Salts.
So thankful for the group ... Ive been dreading losing my hair and have only had 2 EC with clld cap but most of my hair has fell out ... still can't brave the shave yet thou I found doing the look good feel better make up and skin was really good and made me feel better... it was also lovely to speak and see other women going through the same thing
I also have a wig but haven't worn it I feel self conscious that people will know but I just need to wear it snd sure it will be fine
Anyone had side effects of calf pain and what did you do yo help it
Love and hugs
had my second last week but I’m fortnightly at moment and did mine off week maybe check with doc but mine said have it as it’s important for us
Thank you so much for that, that’s really helped me as I have been worrying about it. Oh how I miss the idea of a festival and a hangover…if only! My treat now is fizzy water with cordial!
@justine1970 Thanks for your reply! It’s good to hear that you’ve found the paclitaxel ok. I’ve been working mostly full time during EC treatment, albeit from home.
I have fortnightly cycles and I’ve had three of four so far. I have treatment on Friday and consistently I’ve felt worst the following Wednesday which is when the steroids and the big anti sickness pill wear off. I tend to take it easy that day then each day after I feel better until by Sunday I feel mostly normal. Even on the worst days I can get up, get showered, do some work and get a few bits and bobs done. The symptoms on the bad days are like a really bad hangover - like really bad, as if you’ve been to a festival and been drinking excessively for a whole weekend!
Hopefully that gives you a sense of what to expect and eases your anxiety a bit xx
I was like you 2 weeks ago so my hairdresser came to my house, gave me a grade 3, stood behind as she did it, put my wig on and then she left, I looked when I was ready.
It was the best thing I could have done, so much less upsetting than picking clumps of hair up from the floor. I now have 4 wigs which I wear all the time and caps…I never wear hats but now have 3 in different colours. I am not a person to go out without a wig on and they are great! I would add a link but not sure how to on here!
One wig is off Etsy, it’s the sides and fringe and you wear a hat on the top, the hair looks real!
I second what @amy46 has just said, this is a rollercoaster of symptoms and emotions and we will all experience highs and lows.
It’s nice to know we are all here to support each other.
I too have 4 months to go.. the first 12 are paclitaxel/carbo then the last 3 are EC which takes me to early January..I have had 5 so far.
I am finding it ok…I get tired & achey but it’s workable with and I am still working from home.
Very very nervous about EC.
@Mel1978 Please don’t ever apologise for how you feel on here. The hair thing is massive because it’s such a visible clue to what we are going through. It’s the first time I’ve looked at myself and really felt like I’ve got cancer. It’s about so much more than being vain. It’s about identity and confidence and so much more.
I am finding my feelings fluctuate and sometimes I feel quite normal and other times like today I feel so low and miserable I don’t know what to do with myself. I’m trying not to worry about what I can’t control - if I catch covid from my daughter and have to miss my chemo then that’s what will happen and I can’t do anything about it, but when these bumps in the road come along they completely floor me again and I find myself being pessimistic about my whole future. I do know though that this will pass like the other awful bits and sooner or later I’ll feel better again. I’m generally a positive person but this cancer malarkey is really testing my resilience!
Let’s not forget how brave we all are. I think you are all awesome and I am very happy that we can support each other on this forum x
@Mel1978 Please don’t be embarrassed. Everything you’re feeling is valid. I feel the same as you, I thought I was taking it in my stride until the hair loss started. I surprised myself by how emotional and panicky it made me feel. I think it’s natural to want to cling to normality but I try to remind myself that for now we have a new normal. I still have moments where I struggle. This is a very hard process.
Another thing that comforts me is to remind myself that this is temporary - our hair will grow back and at some point this treatment will be a distant memory. I’m making plans for next spring, including planting bulbs and travel, it really helps to have something to look forward to.
Thank you for ur reply.
Mine doesn't seen to have stopped - id say iv lost about 60/70% already. Im scared to shave it all off though.
Like u say im embarrassed that im so bothered and vain but its something I have always struggled with - I dont even like having my hair cut.
I know there's so much more to this than just hair - and im sure ill get used to it - but like u say - I look 'ill' now.
I really hope u dont think im being shallow and stupid - I knew this was coming because until now iv felt positive and just got on with it.
I really appreciate ur messages and its glad to know we aren't alone in this. Xxx
Please try not to push people away. I totally I understand the instinct but you need others to get you through this. I bet you have a beautiful face and beautiful eyes. Have you got a wig? Having a wig I love really helped me. Maybe buy some lovely new make up? The LGFB course was really good if you can book onto it. It will get easier I promise. Xxx
Im so sorry about your hair it’s happened to me too .I’m same I have my 3rdEC this Friday and I also lost my hair 3 days after my second EC I am lucky I have my husband who supports me and we both cried a lot as he got the clippers to my shoulder length streaked hair it was like my last identity as a woman was taken and the realisation of I have cancer his me . I can’t imagine being by myself through this without the support of family , friends and my beautiful neighbours although I sometimes need to just sit and reflect on my own I know they only want to help and love me so please try not to push people away because we dooo need them and their love and support whatever it may be.
I had prepared for that moment and had pre bought a wig online from Wigs Australia who are really lovely and helpful
you can chat online to them or ring them
also bought some turbin caps from eBay
I have joined Feel Good Look Better fglb.org.au they are recommended by the Cancer Council and have free workshops on skincare and makeup also wigs and scarves etc you can do them on line through zoom or attend locally in person they will also send you a care package gift I’m just waiting for mine it’s a bit exciting apparently they are great
Sending you lots of hugs please feel better we are all here to talk to if you need and try to except love and help from people who do care about you as it does help. We will be ok and come out stronger on the other end with beautiful new hair 💕😊
@Mel1978 Big huge hugs! It’s not at all stupid to feel bad about losing your hair. I feel exactly the same way. It’s such a big part of your appearance and for me part of the difficulty is not wanting a signifier that I’m “ill”. We are told that being concerned about our appearance is shallow and that that means we can’t worry about it but that’s a load of rubbish, especially now when we need to hang on to what makes us feel good.
I don’t have a lot of good advice, because I’m still processing but you could try a Look Good Feel better workshop. I’ve also bought lots of vintage silk scarves that I’m trying out in different styles, as well as hats and headbands. I’m also making more of an effort with make up.
My hair hasn’t completely gone - the shedding seems to have plateaued and left me with about 40% which might happen to you too. It helps me to feel that I’m prepared if it does all go. You could also join the Paxman Scalp Cooling group on Facebook. Lots of people on there recommend keeping going with the cap to promote faster and healthier regrowth.
Try not to push people away - I tend to do that too when I’m struggling, but I always feel better when I open up a bit and spend time with people. Feel free to send me a message - we’re going through the same thing xxx
Iv had my 2nd EC on Wednesday and its been a little harder this time. But I think because the cold cap doesn't seem to have worked for me and my hair is all coming out - I have a bald scalp now. This for my is the hardest thing. I dont feel like myself. Im embarrassed and darent see anyone. I know it probably sounds stupid but its how I feel.
I want to be strong but im struggling with it alot.
Im 43 and live on my own so im just pushing people away.
Any advice would be massively appreciated xxx
Im doing the opposite to you. Paclitaxol first then EC - don’t really understand why as it seems quite unusual this way round. I think you will find the Paclitaxol very manageable, I have so far. Im hoping that even if the EC is worse I will feel closer to the end and just get my head down and get through it. Who knows maybe I will find that ok too 😊
@SlightlyBewildered I use a company called Diablo. They seem very good, I’m on my third bottle. I use the oil that you put under your tongue. It does have quite a strong taste but I got used to it quickly. May not be good if you feel nausea with string smells. There are calculators online to help you work out your starting dose then work up. I take 20mg twice a day now.
Just having a stress now as my daughter tested positive on her LFT this morning. Half her year have it so not surprising. She’s vaccinated and just had a mild headache yesterday. Hoping I don’t get it and have to miss my chemo or I get really poorly. My white count was ok last week so 🤞🤞xx
Hi bananasatsuma and 14
I have had 2 out of 4 fortnightly chemo sessions and the to follow weekly about 10 more . The weekend after the 2nd lot I lost my hair . Don’t worry we’re all in this together and with all of the great support here I’m sure we’ll get to the other side of it just fine
keep smiling 😊
I’m so envious of those of you who are nearly done. I’ve got 13 more to go! It feels good to be almost done with the first stage, which is EC. I understand the paclitaxel is not so harsh and that the time goes quickly when you’re on weekly cycles.
Anyone else still got months to go?
I’m crossing my fingers that I’m going to be one of those people who sees hair regrowth during paclitaxel and persevering with the cold cap.
That headscarf video was brilliant, thanks! I'm quite a way behind most of you, as started my TCHP chemo on August Bank holiday Monday - lots of nausea, vomiting and diarrhoea day 5-9, but have had my meds adjusted in time for round 2 this Monday coming. I have lots of fine shoulder length hair and am cold capping, but shedding madly over the last couple of days, so starting to think about scarves and hairbands. Have a great weekend all, Sarah xx
I have one more to go. My last is on 8th Oct 👏🏻👏🏻
Went well yesterday. There are a few of us that are there together every week. The nurses sit us all together so we can chat. It’s actually a very positive experience which is amazing really considering why we’re there and what we’re having done.
Those of you that are capping … I have worn a headband in the past but it kept slipping down - annoying! So yesterday I stole an idea from the American ladies. I used a panty liner 😂😂😂 Oh my goodness! Total game changer! Stayed put, was super comfy and caused a laugh! I have attached a photo of me sporting a panty liner stuck to my forehead!
@amy46 I’m so glad you enjoyed the workshop. You will love your goody bag 💗 The nail one was great too ✅ Brilliant that you’re doing well after 4th session. I reduced my steroids too after the last one and will do the same this time. It definitely helped the sleep issue. What CBD oil do you use. Friends have suggested it but I’m not sure where to start xx
I hope everyone has a good weekend. Sending love to all those with treatments next week. Sarah xx
@SlightlyBewildered I thought the workshop was great and I’m doing the nails one next week 😊 they said three weeks for the goody bag and I can’t wait to see what’s in it!
I had by fourth chemo yesterday with the Carboplatin added in. So far so good, don’t feel much different to last week and I was able to run this morning. I have reduced the dexamethasone this time as my oncologist says that was a good thing to do if I didn’t feel sick which I don’t. I have been having acupuncture and taking cbd oil which might be helping who knows?!
I am also keeping pretty active although I do make myself have a little rest or a snooze in the afternoon. I guess I’ll know about it if and when I overdo it! Different for everyone I suppose. Have a good weekend.
Hi @SlightlyBewildered and all
I really enjoyed it..it was a nice way to spend 2 hours.
Well done on completing your chemo..I have 7 cycles…so far nearly completed 2.
Yes being active when you can is god isn’t it. My mum is getting worried as I am working/cleaning etc still & she said I should be resting but I don’t feel tired. My view is rest when I feel I need to & the days I have energy use it or is this wrong?
What do others do?
Hi @amy46 and everyone
What did you think of the workshop? My goody bag arrived yesterday - it’s amazing. So much lovely stuff 💗 Was gonna post a picture but then thought it would spoil a nice surprise!
I have my 3rd chemo of 4 tomorrow. Can’t quite believe I’m here already. It really seems to be going super fast which is great 👏🏻 I’ve cleaned the house today as I can’t bear it being grotty when I don’t feel up to doing anything about it.
If anyone is considering it - the nail workshop is good, my nails have started to dry out and flake. Not sure if it’s the chemo or because I’m keeping them painted all the time and it’s drying them out. Could be both I guess. Anyway … I got some really useful tips to help keep them in better shape ✅
Sending love to all. Sarah xx
I had my 5th chemo yesterday and so far my white cells have been okay so hopefully yours will be too.
I am enrolled in to the look good feel better thing tomorrow but have asked to turn my camera off as I have only just lost my hair & not comfortable with it.
As for shielding I see friends for walks or coffee outside but that’s it, too paranoid about germs!
Oh @bananasatsuma @that must be impossibly hard to have to distance from
your little boy. I really feel for you. Could you get hold of some FFP3 masks? You could put one on for cuddles? (maybe decorate it first if you think he might be scared by it) xx
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