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

 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

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

Same here with the injections hun EC is what I am on next after the halfway point and there is no break in between. I am all for the surgery, we are done with having children and with being triple negative I am all for there being nothing there it can come back to and grow off as much as possible. I want to be avoding having to go through this again as long as possible. I need 10 years to get my youngest in to adulthood. They did say the test can take 6mths but they were fast tracking. All the cancer history in my close family has been the male side with my dad and 2 brothers.

 Pippin24  I saw the tummy tuck, is that what they are using for the reconstruction hun?

Hi NGS, yes the tummy tuck is part of the reconstruction. The surgeon told me she'll take what she needs from the tummy to reconstruct my boob. She said she'll also make sure the other boob matches. We had this conversation when I was first diagnosed. It was then decided that my cancer was more invasive and I was HER2 positive, so would need chemo first. Hopefully, this won't change my surgery plan moving forward, will have to wait until I see the surgeon again. Hope you now get some relief from the bone pain and can enjoy your week. I'm looking forward to going out with friends at the weekend. Xx 

Yes, tummy tuck is for the reconstruction. Xx

If you need extra material hun I am here for you.

Thank you, it us good to share our journeys and experiences. Xx

Just noticed you asked about the port. They used it at my last chemo and it all worked well. Just wished they'd have put it in sooner, as had two chemo put through a canula. I do have a bruised feeling along a vein in my arm where first two chemo went. Not sure if this would gave caused this feeling or if anyone else has experienced this. Went to the nurse today as my stitches hadn't dissolved and she trimmed them for me. Asked her about the arm but she wasn't sure. She did say I'm down to receive a call from gp on Friday to see how I'm doing, so will ask her about it. Xx

Might be common mate, picc line arm felt like that for the first couple of goes, probably milder then a port I would image though.