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

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 

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  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.