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

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

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 

Hi Pippin 24, hope everything has gone well today with having your port fitted,  my veins are already playing up with all the blood tests so not sure if this might be the way forward for me xx

Hi Rufusblue, all went well today thank you. Was a bit of a shock when they told me I wouldn't be sedated, just local anaesthetic and gas and air. I did ask for the sedation several times, but they insisted I would be fine, which I was. I got to the hospital at 8.30am and got home about 2.30pm, a bit longer than I'd anticipated. The only concern I have is regarding sleeping, which I didn't ask about and they didn't mention. The port was put on my left side (opposite side to my cancer), which is the side I usually sleep on. I've looked online and it says sleep on back or opposite side to the port. I don't mind this while it's healing, but would rather go back to sleeping on the port side afterwards. Really not sure if this will be OK or not, so will have to try and find out. How are you feeling at the moment?

Hi Pippin 24, didn't get back until 6.30, my appointment was 3.30 but it was so busy catching up after the 2 Bank Holidays,  fingers crossed I'm feeling OK physically,  still struggling with trying to be positive but I'm trying,  glad all went well for you today xx

Oh gosh well done for doing it under local! Glad it went well in the end..sleeping wise I can firstly sleep on the side of my port (like you it’s the other side to my cancer side) but I have no probs lying on my port side..probably slept on other side for a night or so but it settled pretty quickly. Hope yours does too. Hope all goes well for your next cycle too…xx

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

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

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 

Oh gosh i'm so, so sorry to hear about all of your losses. It sounds like you've had a lot to deal with and a lot of heartache along the way. I'm so sorry to read this. It totally explains why you had your ovaries removed and i'm glad you had a good consultant who listened to you. i'm sorry you now find yourself here....but I"m also glad that there are members of your family who are doing really well post treatment that is very encouraging and hopefully gives you some comfort too. We will get through this.

I worry about my kids as I've obviously been diagnosed with breast cancer and my husband had prostate cancer a couple of years ago...but i am forever graetful that medicine has come a long way and hopefully it continues to advance with all these amazing trials etc that hopefully by the time it comes around to my kids they'll just have to pop a pill or have a vaccine to cure it!!...or at least there will be more treatment and more effective treatment available. We are lucky now too...as 20/30 years ago our diagnosis would probably be a lot more scary. It's so good to know we still have options and treatments available even if they are harsh at times.

My test came back high too so definitely need this chemo...so at least i know i'm doing everything i can...and if it comes back, it comes back but at least i know i've thown everything i can at it now.

When you do get your genetic test results back? Will be interesting to see...

Thank you so much for sharing your story and i'm really sorry your family have been through some tough times. All the more reason to live life to the full like you say, you just never know when it's going to be taken from you...but for today the sun is shining and we have chemo....and hope!

Sending you lots of love and thank you again for taking the time to share this with us...xx

I have just read your family history regarding cancer and am so sorry. Your family has certainly had a lot to deal with over the years. I can certainly understand why you opted for the hysterectomy and removal of ovaries. It seems so unfair that you are now having to go through this breast cancer journey. You are right that we have to be grateful for the chemo  You are an amazing person, so positive and wanting to do what you can to help others. Xx

Hi Greeny80

I had a very rough time with chemo unfortunately.  I had 3 hospital admissions while I was on docetaxel, one of which I didn't think I'd ever recover from.  But as usual the medical staff were amazing and I was out of hospital after about 6 days.  While I was on EC, the nausea was debilitating.  The anti sickness tablets didn't work for me so they gave me something stronger, which made me worse!  So I had to stop taking those and just deal with the nausea.  I also got pretty bad neuropathy while I was on the Docetaxel/Carboplatin, so my consultant stopped treatment early.  I had 6 rounds of chemo in total. However, all the pain seems to have been worth it, as they can now find no trace of the cancer in my breast.  I still need breast conserving treatment (scheduled for the 24th April) to remove some residual tissue, and they want to remove 2 lymph nodes to biopsy, just as a precaution.  I'm hoping that had anything been in my lymph nodes, it would have been zapped by the treatment already.  Surgery is being done as day surgery and they've said I won't notice any difference when I look in the mirror, except for a small scar on the left side of my breast.

Once surgery is done, I will start radiotherapy for 15 days.  I also need to continue immunotherapy (which I've been having alongside chemo since I started in October last year) for a further 6 months, so not out of the woods yet.  I had my first solo immunotherapy treatment on the 28th and so far I've been ok, apart from tiredness and a very delicate digestive system! 

Good luck with TC (I'm not sure what that is?) tomorrow.  Hopefully as you didn't lose your eyebrows with EC, you won't on TC! :) 

Let me know how you get on x

Oh gosh, that sounds scary and tough. I"m so sorry you had such a rough time with it. glad you're out the other side though and amazing that they now can't find any trace of cancer. that's great news. Wishing you all the best for your surgery and for the lympn node biopsies on the 24th. Really hope like you say the chemo has worked its magic and obliterated any sign of cancer. Let us know how you get on.

TC is Cyclophosphamide ( so the C part of EC, i was allergic to the Epirubicin) and then  the T part is  Docetaxol....so Cyclophosphamide plus Docetaxol for 5 rounds...worried about the neuropathy..i've bought myself some ice mitts and socks so hoping that might help...not sure if thats a bit gimicky but i'm willing to try anything!...not sure how long the mitts will stay cold for either but will give it a go. Have you still got neuropathy? Is it sore or more pins and needles?? Hope it's easing a little..

Yes so far hair seems to be totally fine and no sign of shedding so maybe the cold cap is working its magic but we'll see what happens on TC! Have just started taking my steroids ahead of my next cycle tomorrow! It's weird knowing i'm not going to be feeling great for the next little while when i feel so good this week...but at least then i can tick another one off!!

Hope all the immunotherapy treatment is ok and miminal side effects with that and yes good luck for the 24th. xx

Hi Greeny.

Sorry it's taken so long to reply.  I've had a bit of a rough week.  The neuropathy comes and goes, it's more of a numbness in my finger tips than pins needles, but it is definitely better than it was and it isn't impacting daily life. 

I went to the hospital yesterday for my pre-op assessment - only to get a call as I was on my way to say the appointment had been cancelled because the nurse had called in sick!  Luckily I still had other appointments so it wasn't a wasted journey.  There was some concern over the weekend that they had changed their mind about lumpectomy v mastectomy as I got a random call asking me to go in to see my surgeon to discuss "options".  Needless to say I went down that rabbit hole of despair and worse case scenario.  As it turns out, he just wanted to discuss how much of my nipple to remove as part of surgery, as they still couldn't see any trace of cancer and therefore couldn't put a marker in place. Because of its location in the original scans, they want to take a "strip" from the top of the nipple down, so it was just to discuss that.  Honestly, I had the most stressful weekend thinking the worst!  He also confirmed the biopsy of the lymph nodes was normal practice for anyone who has breast surgery and he is confident nothing will be found as I was clear previous to treatment.  Oh the joy! 

How did your last cycle go?  My eyelashes are starting to grow back.  Hoorah!