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

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

Think I got mixed up with who's chemo is near to mine. Mine didn't change due to Easter, but will be affected by May day bank holiday. My round 3 is on the 15th April and then have 4 docetaxel after that. Glad to hear you have been able to get out running, I've just got back for a lovely walk. Enjoy your dinner out with the kids on Sunday. Xx

haha yes it is confusing! We are all slightly out of sink!! Yes mine is on the 9th and then you're the week later i think..Hope your last EC goes well...I'm on TC on Tuesday so will interesting to see how i fair with the new combo.  Hopefully ok!

Have a lovely weekend xx

Hoping the next round goes smoothly for you xxx 

I’m day after you Pippin. Next round on 16 th. Will be last EC for me then onto Docetaxel but just for 3. 
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, I knew somebody was close to me. My day for cyle 4 will change due to the bank holiday, which is a shame as Monday is good for me. I need 4 cyles of docetaxel so 1 more than you unfortunately. How have you been this week? Hope you're doing OK. Xx

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

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!  

Oh so sorry to hear you've had a bit of a rollercoaster week. It's crazy how your mind can go to some far fetched places...i'm glad you now seem to have a plan and know what is in store for the 24th....and yes i think lymph node removal is pretty standard procedure for any breast cancer but hopefully it's just that, standard practice with nothing to see! Keeping everthing crossed the op goes well and biopsy results are good too!

With dog walking, as Pippin says, i would go out with your friends and the dog and just get them to hold the lead?? That way you both get exercised!!

Sorry to hear the neuropathy isn't great but good that it seems to be improving, that's a good sign. I guess it all just takes time...How quickly did you get signs of neuropathy? Was it after your first cycle? or further down the line? How many Docetaxol cycles did you have?

My second cycle was last Tuesday so it's been a week. I would say i've felt a little rough round the edges but it's been managable....My body definitely prefers this new drug cocktail TC to the previous EC. I have been less nauseous which I am taking as a huge win. My oncologist said i would feel worse fri/sat/sun and he was pretty much spot on! Felt very achy, weak and flu like..still functional i wasn't bed bound or anything, still ferrying kids around and walking dog etc but definitely didn't feel great. Then had my last injection yesterday and was in quite a bit of bone pain with that..and upset tummy for a couple of days but today seems to be a little better and i've finished the injections so i'm hoping i've now turned a corner and can enjoy a couple of weeks of feeling relatively normal!...hoping my taste might come back a little too,, my mouth tastes horrible and all food, except chocolate weirdly, just tastes very weird! But i can't complain - 2 down 4 more to go. 

Hair seems to be ok still...definitely thinning a little but you wouldn't be able to notice...will be interesting to see if anything happens later on in this cycle or whether the cold cap has been working its magic? I'm trying the cold mitts and socks...the mitts are annoying but the socks are quite good so i might try them again...who knows if it's a bit gimicking or not but worth trying i guess!?

Anyway i hope you're enjoying some sunshine and that you're feeling ok about the 24th. Will be thinking of you. 

Pippin - hope you're still feeling well today! xx

Hi Greeny80, I'm feeling well today. Went on my usual 2 1/2 mile walk with hubby this morning. Just ordered some dark nail polish, although not sure if supposed to wear it when using polybalm. But the polybalm doesn't stop the uv rays, so might put the polish on when outside for long periods. Still undecided about cold therapy for hands and feet. I'm glad to hear you are feeling a bit better after finishing injections. Start mine on Thursday for seven days, but had no real issues on previous 2 cycles. I did have a back ache one day when on first lot of injections, but think it was unrelated to injections. Annoying that you have issues with taste, hopefully that improves for you. Did you have this with the first cycle, or do you think it's the docetaxel? Xx

Hi Greeny and Pippin! 

Yep, I'm sure I can join the dog walk and if they're going on a longer walk than I can manage, I can leave them to it and head back lol. 

I had 3 rounds of Docetaxel.  I was pretty rough on that too, although I didn't get nausea with that one.  Just tiredness and lightheaded for about a week after each session.  Neuropathy kicked in pretty quickly with me.  I did warn my consultant that I would be that 1% when it came to side effects!  I also had a horrible taste in my mouth, quite metallic.  Check your tongue, as I got a couple of bouts of oral thrush on the Docetaxel which affected my taste buds.  I also really craved sugar when I was on that one, not good at all lol.  I only had 3 rounds of Docetaxel because of the neuropathy, so I was one short.  I should have had 4 x Docetaxel/Carboplatin and 4 EC but ended up with 3 x Docetaxel/Carbo and 4 EC in the end.  Honestly I think I was a medical nightmare for them lol.  I had a really bad allergic reaction to either the Docetaxel/Carbo or Pembro (immunotherapy) and ended up in hospital for 6 days - 2 of which I can't remember!  But high dose of steroid and lots of antibiotics, drips etc sorted me out.  I do think they were baffled for a bit though.  However, like I said, I do seem to be in that 1% bracket as what's happened to me during treatment has been very rare and I was already aware that my body is extremely sensitive to all medication so I kinda knew I was in for a rough one lol.  

I'm feeling ok about the 24th thanks.  My sister arrives on Tuesday so that will help keep my mind off things.  She's going to take care of me for my first week post surgery, then a friend takes over for the 2nd week.  Mainly because I'm not allowed to lift anything heavier than a kettle etc, but it will also be nice to have company.  I have to be at the hospital for 7am on the 24th.  Yikes! 

Hopefully the cold cap continues to work for you.  And good luck with the cold mitts and socks!  I'd not heard of these until you guys started to talk about them. 

xx

Hi Carol, it does seem like you had a really tough time on the chemo, well done for getting through it. I've done really well on EC, but am really apprehensive about going onto docetaxel and Herceptin injections. I know the docetaxel is stronger and the Herceptin has a lot of side effects too. Looks like you've got a lot of support in place for post surgery, which must be reassuring for you. I'm wondering if I should get a cleaner organised for a few weeks, post surgery. I did this some years ago when I had a hysterectomy. I've lost touch with the lady, so would need to find a new one. Good luck for the 24th, hope it all goes well. Xx