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 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

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

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

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