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, 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

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

Hi Carol, just wondered how you have been feeling since your chemo finished, hope you're doing OK. What is the next step for you moving forward?

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

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 

Hi NGS, sorry to hear that your results show that you have the BRCA1 gene. It must be difficult having more surgery, when you have already been through two. My young niece went through breast cancer last year and also tested positive with the BRCA1 gene. She went through a double mastectomy and through reconstruction surgery and is now doing amazingly well. Good to hear about your cousins success story. Xx

Hi Pippin24 sweetie, yeah still on the weekly for 7 more weeks and then changing to EC every 3 weeks for 4 cycles. They will also scan again at that point and start planning surgery. Left boob is definitely going but gentic test to confirm fate of right and hysterectomy. How you been feeling hun, how as the port been working for you? docetaxel is the red one right that should give that should hopefully give what ever is left in there mate a good kicking mate as we want it gone and all this hard work you have been so amazing with to work.  In regards to the leg pain they just think it's a chemo side affect and it the nerves in my leg reacting, so been given codine by the doctor today for home for when I feel I really can't cope with it and it is stopping me from sleeping.I guess that the thing with the size, I don't know if it smaller, the brusing etc all could have just settled but always go with hope is where i am. I am being treated to be cured which I feel very lucky about. 

Hi  Greeny80 hun  yeah still on the weekly for 7 more weeks and then changing to EC every 3 weeks for 4 cycles. They will also scan again at that point and start planning surgery. Left boob is definitely going but gentic test to confirm fate of right and hysterectomy. Was in hospital 9 days was stuck in  A&E for 3 nights waiting for bed. Concern was sepsis but they really don't know what the source of infection was. My white blood cells normally sit around 5/6 and had shot up to 92. 

How have you been finding it all mate? How are the kids? If people have offered any support to help mate confidential rake them up on it. They probably be really happy they can feel useful to you. 

Hi NGS is the the white blood cell injection at home you are talking about? If so I am 100% with you there. I hate them and would like a bonfire party for each one. I have to have 3 each week post chemo but I am a few who have more. It sucked being in hospital especially 3 nights in A&E and away from my babies over Easter. I was really sobbing at one point which was awful for husband, but happy to be home and ticking these appointments off.

I am so sorry about the genetic test result hun, how long did that take to come back. (This is the one I am dreading at the moment)

As I understand it from the surgeon hun, they give you radiotherapy afterwards in this case to make sure they zapp away anything that may be left behind post surgery. (Number of sessions TBC). Does feel like a kick through when you think you need extended recovery/treatment just that bit further. They are even suggesting I talk about hysterectomy if mine comes back positive, so make sure you take your time and ask the surgery team and barage of questions that may have hun. 

Fantastic news on your cousin hun. I love a good news story. 

Hi 

yes daily injections at home are the killer for me.  Each cycle I have 7 injections from day 2 and every time as the days go on the pain intensifies.  feels. Bit catch 22 as they work to build white blood cells so without them you risk blood count not being where it needs to be for next cycle 

EC is the red chemo.  Called red devil. My chemo nurses had to push this through my line over these last 3 cycles.  Docetaxel can be hooked up on a drip so we will see 

madhatter - I had a hysterectomy and my ovaries removed 12 years ago.  Despite only now being confirmed I have a gene if I am honest I could have come to this conclusion myself 35 years ago.  My Dad’s family lost cancer battles one after the other and at a young age.  When I had fibroids an excellent surgeon looked at my family history and suggested the surgery.  I had 3 children then and did not plan anymore.  For me that was one of the best decisions I made as ovarian cancer is such a silent killer.  It stopped me living in total fear.  And now knowing I have BRCA1 it likely saved my life. I honestly dont think I would be here today.  

They fast tracked my genetic testing as I was going through treatment.  Results usually take up to 26 weeks mine came in 7.  

I do have lots of questions for the surgeon. Interestingly he had said there was no point in genetic  testing as I already had cancer.  My oncologist thought different and was clearly right thankfully.   I hate you sometimes have to keep fighting your own battle to get the best results. 

a key question for me is what other testing monitoring they will provide post surgery etc as two aunts cancer originated around endocrine system - pancreas and gall bladder.  I need to do some reading / research around this. 

pippin - you mentioned a tummy tuck - is this part of the reconstruction ?  I know nothing on this front yet so need to look into so I can  ask all the right questions 

roll on the bone pain beginning to finally subside today and to feeling more human again for the next week   
xxx