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  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

Really pleased to hear your niece has done so well. It’s great to her of success stories.  Did she have the reconstruction done at same time.  It’s a really long surgery which does concern me.  
xx 

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 MadhatterC, having weekly chemo for so long is really intense for you. At least going onto EC will give you a bit of a break in-between  It's the EC that's the red one, which I have just finished. I found it has been OK, with minimal side effects for me. Not sue how I'll be on the docetaxel, but I'm going to remain positive that this will be fine too. I Hope to keep up the morning walks with hubby, I'm sure this has helped my mindset. Annoying that you are having problems with your leg and that it's disturbing your sleep. Hope this starts to improve for you with the meds the dr has given you. Hopefully your genetic test results come through soon, you will then be sure of your treatment plan moving forward. Xx

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 

Hi, my niece did have the reconstruction at the same time. She did amazingly well, looking at her now, you could never know that she has been through this surgery. It is always worrying going through major surgery, which concerns me too. Xx

Yes, tummy tuck is for the reconstruction. Xx

I would be too hun, its a scary thought being put to sleep and recovery etc. 

I would be too hun, its a scary thought being put to sleep and recovery etc.