Hi all, what a lovely day today, hope you're all doing something nice. So, I went to the hospital to get bloods done through my port today. They wouldn't do them through port as said it needs to be after 10 days and it's only 9. They had told me at last chemo session it would be fine, that guidelines had changed to 7 days. A bit annoying as I could have gone to a closer hospital to have bloods done in the normal way. On the plus side, I asked them to talk to pharmacist for me about what gp can prescibe for hot flushes, as I've had to stop hrt. They suggested a suitable medication which doesn't affect hormones (as I'm pr positive, er positive and HER2 positive). I have a phone consultation with gp this afternoon, so hopefully she can prescribe this for me. Although receptionist did ask if the hospital were sending a letter (which they're not), so hope this won't be a problem. Also have my oncology appointment this afternoon, to see if chemo can go ahead on Monday. Off out for a walk shortly and out with friends for dinner tonight, which I'm looking forward to. Hope you all have a lovely weekend. Xx

Hey,

Ah that's annoying they couldn't access your port for your bloods this week. Hopefully by Monday and then going forward it will work perfectly but sorry you had a slightly longer journey to make today. Let us know what the oncologist says later...fingers crossed for the go ahead on Monday!

That's great news that the pharmacy has suggested some medication for your hot flushes! Let us know how you get on with that...really hope it helps.

Sunshine is amazing today, makes such a difference doesn't it?! Just been out for a lovely dog walk too....definitely helps having chemo this time of year going into summer..definitely better for the headspace!

I'm feeling pretty good today, weird taste still but not nausea, a little light headed maybe but all totally manageble and had a much better night sleep now i'm off the steroids!....my body definitely prefers this TC combo...although there is part of me that is still frustrated that my body couldn't tolerate the EC...I can't help but worry i'm not having the best chemo or the strongest one but i know i have to get that out of my head...and know that i have the next best thing and that my body just didn't want the EC so i have to ust go with it...but it does play on my mind a little!

Have a lovely evening tonight and let us know if you're good to go for Monday! xx

How's everyone else doing?? Sending love and hope you're all ok! xx

Hi NGS, I just wondered how you are feeling, after your treatment yesterday. Hope you are doing OK. Xx

Hi everyone.  Third round of EC completed.  Been an emotional rollercoaster this week.  I had felt so good the fees days before I became really overwhelmed Tuesday before treatment knowing it would knock me for six again.  But I’ve picked myself up now thankfully. Back on injections - day 3 today. It’s this bit that I dread most 

I am worried about the neuropathy on docetaxel.  What are the herceptin injections for ? I don’t think I’m having this - it’s not been mentioned.  My steroids have increased though pre starting docetaxel   Once my chemo ends I will have zometa bone therapy as well 

xxx 

Hi NGS, I can understand the anxiety before starting each cycle, especially when getting difficult side effects. Pleased to hear that you've managed to pick yourself up and you sound more positive. I think the Herceptin is due to me being HER2 positive, as far as I can remember. I too am worried about the docetaxel and neuropathy. I've been fine on EC, but who knows with this next one, will just have to wait and see. Started my week of injections last night, mine start later than yours for some reason. My next cycle is on Tuesday 7th May due to the bank holiday, so probably the same day as you. I've also been told to start the steroids the day before next treatment and they've also been increased. Worried this might make constipation a bit more of a problem. Hope you manage to enjoy your weekend. Xx

Well done for getting to round 3. It's tough, mentally and physically....and i totally get it....it's really hard when you feel good and vaguely normal for a few days beforehand knowing that they're going to knock you down again...it is hard to get yourself into the right mindset for it....but evey knock is one knock closer to the end.

What side effects are you finding the hardest? I hate the injections too, i think it's those which make me feel the worst..the aches, feeling weak and then the bone pain...i also had upset tummy for a few days after as well just to add insult to injury! So far it's all manageable but id be lying if i didn't say my body feels a little beaten up...feeling good today and energy levels are back to normal though but have super dry/cracked lips..taste getting better but still not quite there..but its tough knowing that i have to do it all again..and again...and again!!..but 2 down, 4 to go and it will be over soon! 

So far i haven't got any neuropathy with the Docetaxol, i know it's early days but hopefully a good sign??..i take the extra steroids like you the day before, during and then day after...the two days after i felt pretty good..i was super productive...but the weekend i definiteky took a turn which co-incided with the jabs! I was still up and about and doing things but definitely felt below par. i don't think i have the herceptin injections either just the Filgastim ones..how many days do you have those for? Mine are for 5 days...what date is your Docetaxol? how many rounds of Docetaxol are you having? 3? Assume every 3 weeks?

Hope you're doing ok - hope you can have a relaxing weekend and that you don't feel too awful...we're here if you need to vent!!

xx

Hi everyone 

how is everyone feeling / doing ? 
I have literally hit a wall post treatment this cycle. My energy has depleted and is at zero and it is taking me much longer to recover this time

bone pain has kicked in again so strong pain medication is also wiping me out

to top it all I am also experiencing mouth ulcers which not had before

all in all feeling pretty rubbish

praying as the week goes on things improve so I can get some respite before cycle 4 and a new regime with docatexal

hope everyone else doing well xx  

Hi NGS

I'm so sorry to hear you're having a rough time.  Re the mouth ulcers, I drank green tea throughout most of my treatment and found this really helped with a sore mouth and ulcers.  It's not the best tasting, but if you can stomach one a day, it really does help. 

So sorry to hear about the bone pain too, hope the pain meds help :( 

Do you start Docetaxel on your next treatment or do you have one more EC?  As you've had such a rough time on EC, hopefully the Docetaxel will agree with you more.  Just be kind to yourself and rest and listen to your body.  Also speak to your clinicians about the mouth ulcers, they will be able to give you something for them.  It's a common side effect, so they will know how to help. 

Take care of yourself.

Carol x 

Hi NGS, sorry hear you're feeling rubbish at the moment, hope things start to improve. I too hit a bit of a wall on Saturday; with extreme tiredness. I went out for my morning walk, but slept on and off all afternoon, evening and still slept during the night. Did feel much better on Sunday and managed to fit some cleaning in. I've got my ct scan on my lungs on Friday to check nodules, previously found. Also ct scan on boob next week, to check if chemo is doing it's job. I'm starting to feel a bit apprehensive about starting the docetaxel and Herceptin next time, I suppose because I don't know how I might react to this chemo. Hope you start to feel better before next cycle and get a bit of respite from the side effects. Xx

Oh i'm so sorry you've hit a wall...it's so hard isn't it? Every time you start to feel better you go in for the next round and your body gets a beating again. I found the worst days have been the Fri/Sat/Sun/Mon after my Tuesday chemo and i'm sure it's also to do with the injections wiping me out....how many more days on injections have you got? I think they make me feel super tired, weak and then add in the bone pain! Horrid....but it will pass! Hang on in there...hopefully once you've stopped the injections the side effects will lessen...

Also re mouth ulcers i was given Difflam mouthwash which is really good and they also gave me some other pills which you dilute in water and gargle, they're called Bethamethasone....might be worth asking your oncologist if they can pescribe something for you? I had ulcers with EC and have used the difflam daily with the TC as my mouth has been pretty bad, with taste and generally horrid feeling in my mouth, ulcers etc and the difflam has definitely helped. Good to know about the Green tea too Carol! Thanks for the tip!

As Carol also says i'm sure you'll find Docetaxol a breeze after EC. So many people say it's easier to tolerate after EC so i'm really hoping this is the case with you...so hang on in there with this one and really hope your next 3 rounds you have a slightly easier ride!

You will get better so hang on in there!! Sending lots of love and strength..we're all here with you!

Pippin - Sorry you had a slightly tricky weekend, glad you managed to rest a little but also get out for some fresh air. Totally understand that you are worried about scans and the Docetaxol. It's always so hard when you have a test or something coming up...hope the week goes quickly so you can get the scan under your belt and I'm keeping everything crossed for you that both scans are good news and also that you have mild side effects with the Docetaxol. 

Take care ladies - we've got this!

  xx

Hi Greeny80, I will certainly feel better once the scans and results are over with. A nurse did tell me that if you've been OK on EC, it's the docetaxel that usually affects you and vice versa. This is a little worrying for me, as I've been pretty lucky so far. Hope you had a good weekend and are doing OK. When is your next treatment?

Really hope that's not the case with you on the Docetaxol...just remember that the oncologists etc can provide lots of pain relief if needed. Did you end up buying the mitts/socks?

and yes having tests looming over you is really hard, it can be all consuming..so hope you can do some nice things this week to distract yourself a little. Do you know when you get the results back?

I've got my next round of TC on the 30th...so hoping for a good week this week before they knock me down again. I'm worried about the cumulative element of chemo and side effects..i've got 4 more of TC to go...really hoping the side effects don't get too much worse...but i guess i just have to take one round at a time and just keep ticking them off!

Not that i like wishing time away but roll on July!!!!...although then there's radio and then hormone drugs and god knows what else next! It's certainly a journey!!!..but just have to focus on the now and yeah each round i guess, worry about the chemo first!..and deal with the rest later! 

xx

Really hope that's not the case with you on the Docetaxol...just remember that the oncologists etc can provide lots of pain relief if needed. Did you end up buying the mitts/socks?

and yes having tests looming over you is really hard, it can be all consuming..so hope you can do some nice things this week to distract yourself a little. Do you know when you get the results back?

I've got my next round of TC on the 30th...so hoping for a good week this week before they knock me down again. I'm worried about the cumulative element of chemo and side effects..i've got 4 more of TC to go...really hoping the side effects don't get too much worse...but i guess i just have to take one round at a time and just keep ticking them off!

Not that i like wishing time away but roll on July!!!!...although then there's radio and then hormone drugs and god knows what else next! It's certainly a journey!!!..but just have to focus on the now and yeah each round i guess, worry about the chemo first!..and deal with the rest later! 

xx

I have found some mitts and socks that I'm happy with and think I'll probably give it a go. I think the oncologist said they'll have my results at my next pre cemo consultation, which is not too long to wait, thank goodness. I too have 4 more treatments to go,  then next step for me will be surgery. I know what you mean about the cumulative effects of chemo, I've read it can take some time for your body to get back to normal. I've also got to go on long term hormone blockers, which can also have side effects to deal with. One step at a time I suppose. Xx

Morning everyone,

Just wanted to check in to see how you're all doing.

NGS- How are you feeling today? Any better? How's your throat and ulcers? Another good thing to do is to gargle salt water...really hope you're ok. Sending hugs.When do you finish the injections?

Pippin - Glad you wont' have to wait too long to get your results. The waiting is so hard!..but that's good not too long too wait. Do you have a date for surgery? Or will they not know until after your chemo? Are you having a lumpectomy? Will you have to have radiotherapy too? Hope you're feeling ok today too and that you manage to get out for your walk.

Carol - hope you're getting on ok too?

I'm now in week 3, so feeling ok. My hair is starting to thin a little but still not noticeable. Eyebrows and eyelashes still in place too. Wondering when/if they'll start to fall out?? I've got my Dad and eldest brother coming to visit for a couple of days which will be nice...weird to think this time next week i'll be back in the chemo chair and we go again!!!!!!!!!!

Hope you're all ok

Good morning Greeny80, got out for our walk at 8.30am this morning, so an early start. I don't have a date for surgery at the moment. I assume once chemo is over I'll meet up with the surgeon again. It's going to be a mastectomy for me with lymph node clearance. Will also be having reconstruction at the same time. I've read this surgery can take 8 hours, so a bit daunting. Up side is I get a tummy tuck at the same time. Will then be having radiotherapy, plus hormone blockers for up to ten years, so a long road ahead. Can I ask you how long your stitches took to dissolve after you had your port surgery? My stitches still haven't dissolved and it's three weeks tomorrow. I seem to have a bit of redness around one of the stitches and I'm worried about infection. I have booked an appointment to see a nurse at my gp surgery in the morning, so hopefully she'll be able to give me some advice. Glad to hear you're doing so well on the hair front, you must be really pleased. I still have eyelashes and eyebrows at the moment, also legs like a tarantula lol! I'm reluctant to shave it at this point, as lady in the wig shop said it's better falling out when there is a little length. Apparently less likely to get ingrowing hairs. Have a lovely time with your dad and your brother, always great to have family around you. Hope all goes well with your next cycle of chemo next week. Xx

Morning!

That's good you can have the reconstruction at the same time...I have heard that if you don't opt for it at the same time then there is a really long waiting listso mayhe good to get it done all at once..and haha!!!....Always a bonus getting a tummy tuck!!...gosh yes 8 hours is long but you'll be sound asleep!...and hopefully recovery will be quick. So your chemo is to shrink any tumors before surgery? Yes like me i'll have radio then hormone blockers..not worried about radio but am worried about the side effects of the blockers and injections etc but i'll just have to see what happens when i start taking them and how my body reacts. Everyone is different so no point worrying until there is something to worry about i guess! A friend of mine had an awful time with her hormone drugs but i told her to ask her oncologist to switch brands of the medication and she's done that and is so much better so there is hope that even if you don't react very well to certain drugs there are still options..i guess a bit like the chemo?!

With regards to the portocatch stitches..funnily enough I had one stitch which was slightly sticking out so when I went for chemo last the nurse actually tweezered it out for me so actually they hadn't totally dissolved. Defniitely worth getting it checked..I'm sure you're keeping it clean etc but yes hopefully the nurse will be able to help.

I'm wondering if my hair might start falling out a little more this week as it's 2-3 weeks after my dose but we'll see.Great that you haven't lost your eyebrows and eyelashes though...and good tip about the hairs on your legs! I've definitely noticed my armpit hair isn't growing as fast!...these side effects are so strange.

Glad that you seem be handling your EC round ok again this time. Amazing!

Chat soon - happy Tuesday! xx

Yes the chemo was first, to try and shrink the tumours. Hopefully will find out soon how that is going. I have also read on different threads on this site, about side effects from hormone blockers being a big issue. As you say changing brands can make a big difference, as some people have mentioned. Will see what nurse says tomorrow about the stitches  I did get in touch with my macmillan nurse who gave me a number to book a port check. Not sure what to do now, really don't fancy another trip to the hospital. I've decided against the cold therapy for hands and feet at my next chemo for now.  I got advice from my friend's niece who's an oncologist, who said that there's no evidence that it works. I also asked my macmillan nurse who also didn't recommend it. So think I will just see how things go for now. I think people are put of when you mention buying stuff online to be honest. Really had hoped they would say give it a try. Xx

 Pippin24 Greeny80 hi ladies, hi all sorry been missing for a while 1st lot of chemo wiped me flat out and I got an infection and ended up being admitted, just done week 5. Hair is all gone, and leg pain is the main side affect, but lump is feeling smaller. How are you all doing, what's the update?

Hi MadhatterC, sorry to hear you ended up in hospital after your first chemo. Are you still doing weekly chemo? I've now finished EC chemo and moving onto docetaxel next cycle, which is meant to be stronger. I've got a ct scan on my lungs on Friday, to check lung nodules previously found. I've also got a scan on my boob next Tuesday, to see how the chemo has been working. Most of my hair has gone too, just a little bit left now  Do you have any idea what is causing the leg pain? Good to hear that the lump is feeling smaller, think mine is too, but not sure if I'm imagining it! Good to hear from you, keep in touch. Xx

Oh gosh Madhatter, that must have been scary. How long were you in hospital for? Sorry you've got horrid leg pain too...but sounds like you're doing ok with other side effects? (other than the horrid infection, im so sorry you ended up in hospital)  I hope you are doing ok now....how many cycles are you having again? 12? So you're nearly half way through??...do you have EC after your weekly chemo? how many rounds of that? Sounds like a lot so really hope you're doing ok!...and that's amazing that you think the lump is smaller...yay!! really hope that's the case and that the chemo is working its magic!

I have done 2 rounds so far, mine are every 3 weeks, I had an allergic reaction to the first drug so they cut that cycle short and then i started TC last round, so i'm on 5 rounds of that...i've got my next round next Tuesday..my husband has just informed me that he's got to go away with work on Monday - Friday next week! Eeek! Hoping my side effects are minimal and that i can get someone to take me to and from chemo and that i can juggle the kids!!

Pippin - interesting about the cold mitts and the advice...i think the problem is the lack of evidence so nobody really knows! Hopefully you'll be ok with the neuropathy anyway and you'll have mild side effects like on the EC...fingers firmly crossed! and sending you so much luck for your scans that you've got coming up,.....really hope the chemo has shrunk those horrid nodules. When is your GP appt for your port? I reckon the nurse will be able to sort it...hope so!

Hope everyone else is doing ok?

NGS - how are you feeling today? Sending hugs xx

xx

I think you're right about the lack of evidence, people then don't want to say yes it's OK. I can understand it I suppose. If I do end up with the neuropathy, I could always purchase later when chemo is finished, to ease the symptoms. Nurse is going to look at port wound tomorrow, hopefully she'll sort it out. Macmillan nurse said hospital would probably trim them, so don't see why nurse at gp's can't do it, we shall see. Will let you know how it goes. Very unfortunate that your husband has to go away on your treatment week, hope you manage to get some help. Xx

Hi everyone. 

last injection today - cannot be over quick enough.  Hopefully I’ll pick up again from tomorrow. 

pippin - keeping everything crossed for your scans. We have our next treatment on same day due to bank holiday I do think    

madhatter - goodness sorry to hear you’ve been in hospital   How are you feeling now ?  Fantastic that the chemo appears to be working it’s magic on the lump 

greeny - wishing you all good for the next round next week and hoping the effects stay under control  

I received my generic testing today and it’s confirmed I have BRCA1

mixed emotions really as I’ve begged for this for over 30 years and had I got confirmation earlier the monitoring would have been higher and I’d likely have had preventative surgery 

but I am where I am 

sadly it mens my plan needs to change  despite already having had 2 surgeries, lumpectomy and re excision i now need  double mastectomy and reconstruction when chemo ends   They have advised not to have radiotherapy first but not sure if I will still have this following surgery   
my road just got longer still   

cascade testing will now take place for my family members   

on a real positive my cousin had her scan results today and her metastatic breast cancer remains very well controlled with chemo tablets - it’s over 8 years now so a huge success story 

xx