How are you all doing ladies!? Just wanted to check in!! For those who had their second round this week, (Pippin, madhatter, Rufusblue, NGS)  I hope you’re doing ok and hope those side effects are still minimal…and really hope you can enjoy some fresh air but also put your feet up this Easter weekend.

i’m good, slight niggly throat still (day 10!!) but gargling difflam which is working really well. Slightly constipated but energy back and hoping for a good week or so before round 2 on the 9th! 

Oh and my taste might still be a bit off but it turns out chocolate still tastes good!!! 

Hope you all enjoy a lovely Easter. sending hugs xx

Hi Greeny80, lucky my side effects still minimal, a bit of constipation, which I think is the meds. Last time it eased up once I stopped taking the tablets. My injections start tonight, so hoping that goes smoothly too. Annoying for you that it is affecting your taste, but be sure to enjoy an Easter egg over the weekend. Glad to hear the Difflam is helping your throat, might have to ask for some, if I get sore throat this time. I had one really bad night of hot flushed and getting up for the loo, but the last two nights have been a bit better thank goodness. As you mentioned, hope everyone else is doing OK at the moment. Sending hugs and thinking of you all. Xx

Hi Greeny80, just wanted to ask you about what clothing to wear after port fitting. Was it difficult to raise your arms to put on clothing or put on a bra?

Morning! 
I don’t remember wearing anything different after the port…probably just slightly looser clothing but nothing that I remember.. I would suggest a soft bra as the strap can sometimes dig in depending on where they actually insert it..(mine is totally fine now but just for a few days) the only other slight pain/uncomfort I got was when driving as the seatbelt was digging in/pressing on the port slightly so I used to have a nice scarf which I used to pad that area a bit…but it didn’t last long, a few days/a week max. I literally don’t notice it at all now…Arm/neck felt a little uncomfortable for a day but it was never sore. Arm movement etc was fine. 

Hope it’s all fine for you too! Will be thinking of you tomorrow..I know you’ll be glad once it’s over and I promise it will be over in a flash! Good luck for the next round too…

im starting docetaxol next Tuesday (along with cyclophosphamide) and I have to take double steroids the day before, day of and day after and then who knows what else after! I’ll let you know!! 

Hope the bowel movements are all ok! I’ve been eating a lot of apricots!..but now all seems to be good if not a little too far the other way!!! Always something!!!!!!

Take care and good luck tomorrow! Xx

Hey! How many injections do you have to take? I’m not looking forward to those either next time around..assuming I have to have them again with the slightly different drugs?? So horrid feeling hungover..especially when you haven’t had a good night out before! Sorry you’re finding them tough..Hope you can enjoy a few days feeling better once they’ve finished?? I’ve felt super dehydrated I can’t get enough water in and craving cucumber I think for the moisture! So weird! Have you got anything for the itchy skin? That sounds hard too..sorry you’ve been struggling a bit. 

First week I just wanted carbs!..which I don’t usually eat a lot of, I’m usually pretty healthy but I just wanted salt and vinegar crisps for the nausea and crackers and bread! I then lost my taste so it put me off eating much the second week I feel like coming into week 3 I’ve just got my tastebuds back a bit so eating normally and healthier..think my weight is going to fluctuate quite a bit!..which I know is going to be hard mentally as I’m such a fitness and health freak and conscious about my weight but I just have to try and lean into the fact things are going to be different for a while and my body just needs to deal with the drugs!! And to remind myself it’s all for the greater good.

Sending lots of love. When is your next round? Wednesday? Hope it goes ok. Sending positive vibes your way xx

Thanks for the tip regarding the seat belt, hadn't thought of that. Will bring a couple of bra options for after. Wishing you good luck with the docetaxel next week, hope it all goes well. I've also been told I'll have to double up on the steroid when starting docetaxel and also start taking the day before. I've read on a different thread about someone using cold therapy socks and gloves to help prevent neuropathy, think I mght ask about it at my next treatment. I've seen some stuff available on amazon. Bowels seem back to normal now  I seem to only get the problem while on the meds. I took laxido this time, which did help a bit. Also still taking hot lemon drink every morning; which apparently helps constipation. Don't know whether this helps or not, but it's no harm to do, so will keep it up. Good to hear you found something that works for you. Just off to get blood test for tomorrow, will let you know how it goes with the port. Xx

Well done on being a target member.  I really struggle with my weight and lack of mobility makes it hard to exercise but feel right now I have too much else to focus on.  It is upsetting for me as I used to be a Health freak and very fit but the hip arthritis put paid to that.  I crave fruit and vegetables after treatment and love these which is good.  I guess my body is lacking nutrients.  

I’m guessing I’ll have the steroids every time which does not help with eating as makes me so hungry.  

last injection today.  Thankfully.  

I wondered about hot flushes.  I do get very hot at night but I had my ovaries removed 12 years ago so bypassed menopause. I think it must be a combination of the chemo as well perhaps.  So sorry this disturbs your sleep.  Will you have to refrain from HRT post treatment.  I never took this post my surgery due to cancer risk in family but do think that likely contributed to my osteoarthritis.  

it’s such a juggle isn’t it 

any how’s hope you have some reprieve again now before next round and can enjoy the walks in the sunshine 

take care xx 

So far I am Having injections from day 2 for 7 days after every round of chemo.  They are meant to boost white blood cells.  These for me cause much more challenge than the chemo itself. 
I have one more round of EC then on to Docetaxel.  I’m presuming I’ll still need steroids and injections but not certain yet until I’m told.  

I have two weeks now till next round and if first cycle anything to go by I’m hoping I’ll feel more human from Wednesday Thursday this week and have a bit of time to recuperate before round 3. 

when is your next cycle ? Xx 

Yes I’ve got the gloves and socks in my Amazon basket!! Have read about that too for neuropathy so definitely going to ask when I go in next week. Anything to help!  

so far no sign of any hair loss so maybe the cold capping is working too? Although maybe it’s a bit early and I didn’t have the full dose so we’ll see!

Hope bloods come back ok. Xx

Yes i had to have those injections too but as i only had half a dose i only needed to have 3 doses. Next time i imagine i'll have to have all of them....they did make my hip hurt a little, i think it was the injections rather than anything else but you just dont know! Putting so much into my body with injections, steroids, anti sickness, laxativces etc...i hate taking any medication at the best of times so this goes against everything but i know this is a special circumstance.

I need double the amount of steroids for the Docetaxol part too, having it with Cyclophosphamide...and have to take 4 pills twice a day, the day before, day of and day after...i'm sure youll be the same but i'm sure they'll tell you!

So sorry you suffer so much from osteoarthritis. Do you think that was the HRT? I worry about how the chemo and the hormone pills will effect my bones too..and also how i'll deal with being plunged into early menopause...guess time will tell..and no point worrying about something which hasn't happened yet i guess?!?!

Hope you start to feel better soon so you can feel relatively normal for a week or so, I feel so good this week so am dreading being plunged back into chemo and side effects next round! My next cycle is next Tuesday, the 9th!

I have my daughters 13th birthday tomorrow!...and then my husbands birthday on Thursday! It was mine last week so it's a busy month! Just glad i'm feeling well this week for the celebrations!

Take care and glad you're on your final injection..yay! xx

It must be so difficult to do exercise when you have mobility issues, frustrating especially when you used to be keen on health stuff. Think you're right though, you need to focus on this current stuff right now. I've also been eating loads of fruit for lunch each day. I've eaten lots of apples, strawberries and red grapes, I have also made sure to include blueberries and walnuts as I've read these are good for cancer patients. Good that it's your last injection today, I have 2 more to go. Unfortunately I can't go back on HRT in the future, as my cancer is oestrogen fed. I will just have to learn to live with the hot flushes. Just had a lovely walk and feel fairly relaxed and ready for port tomorrow. Xx

I'll be interested to hear what your team thinks of the hand and feet cold treatment. Brilliant that you have no sign of hair loss so far, fingers crossed that this continues for you. Xx

I'll be interested to hear what your team thinks of the hand and feet cold treatment. Brilliant that you have no sign of hair loss so far, fingers crossed that this continues for you. Xx

Hi everyone 

just checking in 

pippin I hope you have got on well today with the port and can now relax again 

as per first round last 7 days of injections have floored me with day 7 being again by far the worst 

I am seriously thinking of asking if I can stop at 6 days as I wonder if the build up just gets too much for me 

despite the cold capping my hair is shedding quite a bit.  It started between week 2 and 3 after first cycle and I’m finding it quite upsetting.   I do still have a good head of hair and so far no bald patches. My hair was very thick before. This makes me think I should persevere  at the moment. 

i think the osteoarthritis began after my total hysterectomy and removal of ovaries   I was only just 41 at the time and it was after fibroids were found thankfully non cancerous  

I took Tamoxifen for 5 years after that and avoided an estrogen supplement due to cancer risk   Makes me chuckle as my breast cancer is still ER positive despite all my attempts 

anyhows hoping everyone is doing ok and best wishes to those having treatment this week

xxx 

Ah sorry the injections have been so painful..yes definitely worth chatting to your BCN about whether you can do fewer injections…I’d definitely ask. Hope all the other side effects have been manageable.

at the moment no sign of my hair falling out but I’m only just week 2..I did only have half a dose though so it may last a little longer?? Did you get any signs before it started falling out, like itchy scalp?? Or did you just wake up one morning?? I’m intrigued! My son said he wanted my hair to fall out as he wanted to see what I would look like!!!! I just can’t imagine how I’m going to feel when it starts to thin?! It’s super fine already so doesn’t stand a chance! Really hope you’re ok. It’s  a big thing losing your hair in the i think because it has such strong association with cancer..and I guess makes it feel a bit more real? Sending you virtual hugs. Good you have thick hair as maybe it will just thin rather than all fall out???

interesting about the Tamoxifen too..just goes to show there’s not certainty about whether it’s going to come back…all we can do is try and keep living our lives to the full….and hope! There is always hope! 

xx

Hey Pippin, 

Sorry just read your last message: I spoke to my team about the cold mitts and they didn’t really say much. They said some women had tried it so they wouldn’t be surprised if I turned up with them but they said there wasn’t enough evidence either way?! the lady I spoke to didn’t seem very knowledgable if I’m honest…. I’m torn as to what to do but I’m also willing to try anything so may well invest and hope it helps…neuropathy scares me. I don’t want to be in pain in my feet so that I can’t run or exercise..so may give it go..I guess it can’t hurt? Nothing to say it has a negative impact? 

It's a shame the team were not a bit more knowledgeable about the cold mitts. I think it's quite popular in America, from what I've read. The neuropathy really scares me too, really not sure what to do. Hope all goes well with your next treatment  xx

Hi, sorry for the late reply, I must of missed your post earlier. I was a bit nervous as they didn't sedate me as I thought they would. Got through it though with local anaesthetic and gas and air, although did get a bit emotional at the end for some reason. Sorry you are struggling so much with these injections, good idea about asking to stop at number six. I'm struggling with a heat rash under my boobs at the moment, which is really irritating. Think all the hot flushes are causing it. Will need to get some advice on what I can use for it. It must be upsetting for you that your hair is thinning, especially as you're using the cold cap. A friend of mine used the cold cap and although her hair also thinned, she never lost it. How did you find being on tamoxifen previously and do you know if you'll have to go back on it? Xx

Hi Greeny80 

I was just reading your post about hair loss.  Mine started to fall out in clumps around day 14, though the chemo I was having was pretty strong and I guess everyone's different.  I had no real warning, it just started to fall out in clumps so I ended up getting it all cut off.  At first every time I looked in the mirror it made me feel sick and depressed and I avoided mirrors for quite a while, then I guess I just got used to it. Started to make fun of myself calling myself an Ostrich (as it was very tufty on top lol) and then started to forget what it looked like and opened the door to poor delivery people with no hair lol, forgetting it would likely be a bit of a shock to them.  However, no-one batted an eyelid and I guess because no-one else cared much, I started to care less too.  I do wear a head scarf if I have video calls at work and pop a wig on if I go "out out", but around the house I tend to leave my head uncovered to let it breathe, unless I get cold, then I cover it up.  I do find if I sweat at night that with no hair, the sweat has nowhere to go, so I wear a little soft turban to help combat that. 

Since having EC I have also lost eyebrows and my eyelashes have thinned.  I have become quite adept at drawing eyebrows and have found an eyeliner that stays on all day, even if you use it on the inner side of your lids.  Putting a line on the inner, upper lid just about a third from the outer corner of the eye gives a good illusion of eyelashes.  Again, most people don't even notice. Quite frankly, as the lady in the Look Good Feel Better workshop said, if someone notices you don't have eyelashes, they're too close! lol. Strangely I miss my eyebrows way more than my hair, who knew. 

Anyway, I hope this helps a little and am always here if you want to chat to someone who's a bit further down the line with treatment.  All the best with everything and I hope the minimal side effects continue.  

Carol xx

Hey Carol,

Thanks so for getting back to me and for all the info about your hair loss...i think you've got the right attitude towards it and making it fun rather than scary or worrying. I'm weirdly not worried about my hair falling out, more intrigued about if/when/how it will fall out?...although i imagine when it does actually start (If it does!?) then i may feel differently but I think like you, you just have to go with it and accept it as part of the treatment. I've seen some of the Look Good Feel good workshops which i'll definitely watch when my hair starts to thin..i think i'll miss my eyebrows more too!!!! Anyway will be interesting to see what happens in my next round..i've got TC dose on Tuesday so will be intersting to see how my body reacts to that rather than the EC...time will tell! At the moment very much enjoying feeling good and normal this week before they knock me down again next week!!!

What cycle etc are you on? Hope you've been ok side effects wise, other than your hair.

Thanks again for your reply, it's been super helpful and comforting chatting on this little forum!

Take care and hope you're having a good day! xx

I didn’t really get any signs my hair would start shedding.  Just loose strand and then more and more.  
weirdly it has slowed down again but I’m wondering if come 2 weeks post cycle it will start up:again.  The logic is so bizarre 

I felt quite “angry” for a while when initially diagnosed as I had as I say have my ovaries removed and taken tamoxifen.  I also breast fed my 3 children. In other words I did everything advised to improve chances against breast cancer 

I had yearly mammograms and always thought any issue would be picked up early maybe some radiotherapy.  I was so dumbfounded to be here having chemo 

I struggled with how the cancer was estrogen positive when i had done all I could to block estrogen in my body - no supplements either 

I’m fine now and in a good head space.  I see this as body armouring myself against the future.  I may even have felt cheated if not having chemo.  

post chemo I will be having radiotherapy and zometa bone therapy.  I will then take Letrazole for at least 10 years

I’ve decided I can’t predict the future but I can sure live life to the full and I’ll be doing just that

xxx  

Hey NGS,

Good to hear from you. I can totally understand why you'd feel angry..It just seems so unfair doesn't it? Cancer is cruel and there seems to be no rhyme or reason as to how, when and who it hits. When i was diagnosed all my friends were like "how can you have it, you're so fit and healthy?" but that's exactly it, it doesn't discriminate...all i can take from this is that i am fit and healthy so going into treatment I can tackle it from the best starting point...

Mine is super hormone driven too - i was 8ER and 8PR...i do wonder if it was having the coil fitted..i'm convinced it was but the doctors will never admit to that?!?! Who knows, i know i can't dwell on the why though, i just have to get on with the cards i've been dealt and do everthing i can to prevent it coming back...

I'm so sorry you have been diagnosed after ovary removal and tamoxifen...were you taking tamoxifen for preventative measures or had you already been diagnosed with something or cancer previously? Wondering why you had your ovaries removed? Don't mean to pry, please don't feel like you have to share...

I'm so glad you're in a better and good headspace now though..,like you say you are now doing everything you can to prevent re-occurence and that with Letrazole should keep it at bay...we hope! All we can do is take the druvgs offered, live a good and healthy life as much as we can and then go live life!! Something positive always comes out of something negative..and appreciating life even more than before is definitely one of them...

Look after yourself xx

I’m happy to share.  My dad is from a large family. He is 1 of 10. His mum sadly died in her 50’s from breast cancer and what we now know to be secondary breast cancer.  She was 1 of 16 and through tracing our family tree we know many of her sisters also had breast cancer as well as there down lines.  
3 months before losing his mum my Dad lost his eldest sister who was just 37.  She too had secondary breast cancer. He was just 19 at the time. Long before me.  
life then plodded along until I was 18 when my aunt ( Dads sister ) lost her battle to ovarian cancer aged 61 

we started to question things and as I was living in london at time I was referred to Royal Marsden 

they agreed annual screening - mammograms and told me to consider ovary removal once I had completed having children. I was only 18/19 then and genetics was not talked about 

6 years after losing my aunt we lost my dad's brother to prostate and pancreatic cancer all wishing 3 weeks. An elder cousin of mine was also diagnosed with breast cancer aged 35 and had a double mastectomy followed by chemo and radiotherapy 

life plodded along for a bit I had 3 sons.  and continued with mammograms 

we asked about genetic testing but was told we needed a living relative with cancer to start this. My cousin at one point some 20 plus years ago was tested for BRCA1 but is was inconclusive 

in December 2011 I had severe abdominal pain and was found to have fibroids   The consultant was brilliant and said with my history and the fact my family was complete I should have a hysterectomy and ovaries removed   There was research that by doing so pre 45 it added another layer of protection against breast cancer   I did not hesitate   I was under the breast clinic for yearly checks and they advised tamoxifen to block estrogen as another guard against breast cancer.    a potential risk of tamoxifen is increased risk of ovarian cancer   With ovaries removed I could take this 

Things in my family have spiraled over the last 4 years 

we lost another of dads sisters in 2019 to cancer followed very quickly by another sister April 2020 - both had cancers in the endocrine system  - both he short bottles from diagnosis 

my dad was diagnosed with prostate cancer 2021 and I’m pleased to say following radiotherapy is doing well 

another sister was diagnosed august 2023 with leukemia  And my cousin has also been diagnosed with prostate cancer 2023 and just completed radiotherapy 

My cousin who had the mastectomy was re diagnosed with cancer in her lymph nodes some 8 years ago despite chemo / radiotherapy and 10 years of letrazole. However she is now on tablet chemo and doing amazingly 8 years on

so now with my diagnosis I have gone back to genetics   Surely despite such a big family this cannot be coincidence 

at last I’ve been listened to and have had testing for 7 genes   I am awaiting results  

I should also say I lost my maternal grandmother to breast cancer and my mum is in remission for breast cancer although her journey was very different to mine - lumpectomy and radiotherapy  

anyhows   I’m feeling super positive despite what seems like an ordeal 

im grateful to chemo - my oncoX type test was high  not at all surprised 

I want to do whatever I can to help others and my next generations whilst living life to the full 

xxx