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 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? 

Hi Greeny80, I was so nervous and kept asking for the sedation. They reassured me and said I would be fine. I was a bit of a wimp towards the end of procedure, just started crying, really not sure why. Think all the emotion of the last few weeks just came out. Was probably all the gas and air too, I was hogging it a bit! Thanks for the info about the sleeping, I was really concerned about it. I forgot to ask them and when I looked it up online, it said to sleep on opposite side. This wouldn't work for me as I like to sleep facing out of the bed. Xx

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 Rufusblue, glad to hear you are feeling OK physically.  The struggle trying to stay positive is totally understandable, I think most people would be the same. Sorry I missed responding to your last post. Such a shame that you'll have to go further afield  to find a new hair clinic, hope you manage to find somewhere equally as good. Annoying you had issues with getting cert for work, but glad you got it sorted. Hope you had a lovely Easter. 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

How are you doing Pippin? How's the Port? Hope you're doing ok....xx

Hi Greeny80, I'm doing really well thank you. I took paracetamol the day after port fitting, but have been fine since. Had a lovely visit from both my daughters and the grandchildren yesterday, then met up with friends in the evening. This evening we're out for dinner with my brother and sister in law, which will be lovely. Think Sunday will definitely need to be a day of rest for me. How are you doing at the moment? Hope you enjoy the week ahead, before next round of chemo. My next lot is the day before yours. 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  

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