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

I can confirm Jersey is just what the doctor ordered! It’s been so so nice to be here! Amazing beach walks, catching up with family. It’s been lovely. If you do come to Jersey then let me know as I have loads of recommendations! 

Hope you’re continuing to feel good? 

Happy Easter! Xx

Hi Greeny80, so pleased that you have been enjoying your time away, I'm sure it's just what you needed.I have continued to feel pretty well, although I had a bit of an off night on Friday night; with hot flushes, then feeling freezing cold. Have now had 3 injections, without any problems, so fingers crossed, that continues. Getting a little nervous now about having my port fitted on Wednesday and will be glad to get it over with. Enjoy the rest of your break and have a lovely Easter. Xx

Oh hope the hot flush was a random one off…glad no other major symptons…please don’t be nervous about the Port. It will be totally fine…it didn’t hurt at all. If anything it felt slightly uncomfortable for a few days but it wasn’t sore and it will make administering the remaining cycles and blood tests etc so much easier and it will be over before you know it…I promise you have nothing to worry about. Are they doing it under local or sedation?

Xx

Unfortunately getting hot flushes all the time, now that I can no longer take hrt. Not sure if meds and injections are just making them worse. Mustn't complain though, my side effects haven't been too bad overall. As far as I know I will have sedation for the port. They've told me not to eat after midnight the night before.  Also no liquid two hours prior to procedure. Have to be at the hospital for 8.30am, so at least no hanging around. Thanks for your reassurance, I'm sure all will be fine. Xxx

I fear my life is about to become all hot flushes and other menopause symptons!! Just have to try and remind myself that it’s all for the greater good and preventing reoccurrence…which is the most important thing.

honestly you’ll be totally fine. I was sedated and it was amazing! I think I drifted off to sleep and then woke up just at the end…felt really relaxed and pretty peaceful after! The sedation was good! I wasn’t very good with general anaesthetic as felt very nauseous after that but the sedation was good!!! Will be thinking of you but it will be over before you know it. 

Hope you’ve had a lovely Easter. X

I feel much better about the port after hearing about your experience, have decided to chill out about it now. I suppose the menopause systems are a small price to pay, in the grand scheme of things. Sommething we'll just have to try and get used to! Had a very chilled and quiet Easter, as isolating until day 10. Hopefully will be catching up with the kids and grandkids next Friday, can't wait. Also hoping to take my elderly parents out for a nice lunch. This has been so hard for them, as they're used to seeing more of me. Luckily my mum is not too bad with a phone, so we facetime every day. Will let you know how it goes on Wednesday, take care. Xx

Hope everyone has enjoyed some time over Easter.  I will be so pleased once the injections end.  I really struggle with them. Whilst stronger pain meds have helped this time I just feel hung over the whole time and ache all over.  I’ve slept relentlessly and have zero energy. I’m also hyper sensitive right now and my skin feels like it’s crawling.  
Also just wondered how your doing with eating / weight control. 

it’s such a minefield of symptoms / unknowns all the time. 
good luck for Wednesday Pippin.  I agree with others it will make future treatments so very much easier 

hoping everyone is getting on ok 

xxx 

Hi NGS, so sorry to hear that you stlll struggle with the injections, this must be so difficult for you  I do get a little tired at times  and generally have a nap at some time during the evening. The biggest issue for me is the hot flushes, which do disturb my sleep. I managed to weigh in at slimming world the week before my 2nd chemo (target member for 8 years now), as I love going to my group when I can. I find I do put on weight the week after my chemo, which is annoying. I think this is because of having to eat before some tablets and after others. I end up eating when I'm not even hungry. Once that week is over I go back to my normal eating and it sorts itself out  I'm a bit worried about what will happen when I go onto the docetaxel, as I think the meds increase. Thank you for your best wishes regarding my port tomorrow, will just be glad to get it done now. I really hope you start to feel better once you finish your injections. Xxx

Hi Greeny80, just wanted to ask you about what clothing to wear after port fitting. Was it difficult to raise your arms to put on clothing or put on a bra?

Morning! 
I don’t remember wearing anything different after the port…probably just slightly looser clothing but nothing that I remember.. I would suggest a soft bra as the strap can sometimes dig in depending on where they actually insert it..(mine is totally fine now but just for a few days) the only other slight pain/uncomfort I got was when driving as the seatbelt was digging in/pressing on the port slightly so I used to have a nice scarf which I used to pad that area a bit…but it didn’t last long, a few days/a week max. I literally don’t notice it at all now…Arm/neck felt a little uncomfortable for a day but it was never sore. Arm movement etc was fine. 

Hope it’s all fine for you too! Will be thinking of you tomorrow..I know you’ll be glad once it’s over and I promise it will be over in a flash! Good luck for the next round too…

im starting docetaxol next Tuesday (along with cyclophosphamide) and I have to take double steroids the day before, day of and day after and then who knows what else after! I’ll let you know!! 

Hope the bowel movements are all ok! I’ve been eating a lot of apricots!..but now all seems to be good if not a little too far the other way!!! Always something!!!!!!

Take care and good luck tomorrow! Xx

Morning! 
I don’t remember wearing anything different after the port…probably just slightly looser clothing but nothing that I remember.. I would suggest a soft bra as the strap can sometimes dig in depending on where they actually insert it..(mine is totally fine now but just for a few days) the only other slight pain/uncomfort I got was when driving as the seatbelt was digging in/pressing on the port slightly so I used to have a nice scarf which I used to pad that area a bit…but it didn’t last long, a few days/a week max. I literally don’t notice it at all now…Arm/neck felt a little uncomfortable for a day but it was never sore. Arm movement etc was fine. 

Hope it’s all fine for you too! Will be thinking of you tomorrow..I know you’ll be glad once it’s over and I promise it will be over in a flash! Good luck for the next round too…

im starting docetaxol next Tuesday (along with cyclophosphamide) and I have to take double steroids the day before, day of and day after and then who knows what else after! I’ll let you know!! 

Hope the bowel movements are all ok! I’ve been eating a lot of apricots!..but now all seems to be good if not a little too far the other way!!! Always something!!!!!!

Take care and good luck tomorrow! Xx

Thanks for the tip regarding the seat belt, hadn't thought of that. Will bring a couple of bra options for after. Wishing you good luck with the docetaxel next week, hope it all goes well. I've also been told I'll have to double up on the steroid when starting docetaxel and also start taking the day before. I've read on a different thread about someone using cold therapy socks and gloves to help prevent neuropathy, think I mght ask about it at my next treatment. I've seen some stuff available on amazon. Bowels seem back to normal now  I seem to only get the problem while on the meds. I took laxido this time, which did help a bit. Also still taking hot lemon drink every morning; which apparently helps constipation. Don't know whether this helps or not, but it's no harm to do, so will keep it up. Good to hear you found something that works for you. Just off to get blood test for tomorrow, will let you know how it goes with the port. 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

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 

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? 

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 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