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

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

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

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

Oh that's fab to hear Pippin and so nice you've got some lovely plans. Week 3 is so nice! It's so good to feel normal and good again...although then feels weird to think i'm about to plunge myself into feeling not so tip top!...but then at least i'll have another cycle under my belt! but yes feeling good this week, have been for a few runs and although i can already feel my fitness levels falling it's just good to be out. We have some gorgeous trails near me so it's lovely to be out and out walking the dog etc...

So happy you got to see your daughter and grandchildren and i bet your daughter is relieved to see you handing all of this so well. You sound super positive about everything which i think is half the battle! Enjoy your dinner out too...we are off out on Sunday evening with the kids for dinner too. Cant wait!

Ah i thought you were a week ahead of me, did they change the dates because of Easter? Yes mine is on Tuesday...so is your next one on Monday round 3? Half way there!! yay!

Have a lovely weekend and enjoy spending time with your brother and sister-in-law and hope you can enjoy a relaxing Sunday.

Chat soon! xxs

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 

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