Hi Namaste, welcome- you have had such a journey in just these last three weeks! Welcome to the Moonbeams-still shining!. There seem to be over 2 dozen of us! I have been told I need 2x6 cycles of Chemo before and after op so this will be a long year for us too. In practice, the ONC doesn’t think I will need two lots but as ever with IBC you just have to take a step at a time- I seem to be hearing that expression a lot lately. Only word of advice from me is that I learned this weekend, as my daughter came and ran round with a hoover, that you can fight cancer on the sofa with a good book. 
ps I start 22 Wednes so maybe we’ll jump into the water together!
JBM- if you can’t do the Race this year save the date for next year! I am toying with the idea myself even though I can’t run far now cos my ankle is well busted.
Afternoon moonbeams, so I made it into work this morning, yeah! never thought i’d be turning down the chance of extra days off but feel like i need some normality. Am v tired now, think an afternoon nap might be in order, but glad I went, working from home the rest of the week then hopefully back in the office next week. Good luck to everyone having treatment this week xx
Hello everyone welcome new moonies,
rough day today just feel like I’m having a out of body experience ytwo day. Didn’t sleep very well last night either.Spoke to nurse about armpit feeling normal she said it a normal feeling not everyone gets it…
got appt with endocrinology ytwo day really not looking forward to going and sitting in a crowded waiting room…
Marie
Hi everyone ,and welcome namaste glad to hear they were able to coordinate your ops as wouldnt have been to pleasant having them all done seperately.
hey marie i like the moonies,sorry you are feeling rough today and hope it passes for you soon and you dont have to hang around to long in the hosp waiting room.
Well penny had my heartscan its no worries takes about 30mins little bit uncomfortable as the technician has to press the scanner around your chest area but maybe i just had a heavy hander hoping nothing shows up for us both and anyone else having scans this wk
Well i am home with a sleeve on my arm from fingers to axilla, as luck would have it it is the start of lymhoedema,hopefully has been caught early .I have to wear the sleeve all times except in bed its not v comfortable and i could see it being a real pain in the summer,however if its stopping things getting worse i will get on with it.So some advice ladies any arm swelling no matter how slight go and see your lymphoedema physio its not enough to mention to the breast care nurse as the pressure in your arm etc can only be measured by the experts the earlier things are caught the quicker they can get on top of it
.Hope you all have a good day am of tomorrow for picc insertion xx stay well caz
Hi everyone,
Got my test results from MRI today, wasn’t expecting what I heard. Nothing found in the bones but a small spot found in the liver (cancer). So new plan for treatment, stiill having chemo this month followed by possible rads, a drug I cant spell or pronounce, then long term Herceptin. Felt like I had been run over when they told me but have carmed down now. I have looked at some the posts on the secondaries sites and they are very positive seems like there are many ways to keep it under control long term. Will still need chemo advice as that might shrink the spot or make it disappear.So onwards and upwards it looks like I have a bit of a fight on my hands.
Lots of hugs
Angela xxx
Oh Caz. I hope you feel better soon, it’s a worry that will be there for many of us, what symptoms had you had? Everything crossed xxx
I must say I did laugh at the term “moonies” for some strange reason I went into to silly mode giggling like a 5 year old.
Well my day just very boring, no hosp appts today just seen financial advisor as it appeared in my wisdom some moons ago (there we we go referring to moonies again) I took out critical illness so trying to claim on it, might be worth any other ladies looking into it, if I get something I think it will go towards my mortgage to help with funds.
I need to look up some of these abbreviations!
Marie sorry to hear you’re not so good today. Keep on in there we are all behind you and everyone else.
Love and hugs to all moonbeamers or moonies
Xxx
Aww Angela it’s so hard when they drop news on you like that, cyber hug for you, we are all here. I remember that feeling well as they told me initially, it never crossed my mind of cancer and yes you could have knocked me over, such an awful feeling isn’t it. I’m sure the chemo will help but they will keep a close eye. They will look after you.
Take care xxx
Oh Angela, that is such a horrible thing to discover, its something we all fear and is always in the back of my mind, I know that the secondaries forum is fantastic and there’s also one on the young womens BC facebook page if your on it I hope they help to reasure you this IS managable. I know several people who have had secondaries on their liver (it’s one of the most common places I think?) which have been zapped into oblivion with chemo so all fingers crossed on that one. We’re all here for you and if you want an offline chat feel free to message me.
Caz really sorry you’ve got lymphodemia but glad its early stages and hopefully they can sort it, not much fun to have to wear a sleeve in this weather though.
Marie - drink lots of liquid, put your feet up and watch lots of trashy telly, this is the time to be selfish and look after number one. I hope you start feeling better soon.
xxxx
Hi Moonies!
Angela, I am so sorry to hear you have even more to deal with but you sound a brave and positive woman. You can do this. We are all right with you on your journey and I send you many many cyber hugs and good vibes.
Marie, I am sorry you have had a bad two days. I hope you improve ASAP.
Caz, I am also sorry to hear about lymph oedema but hope the sleeve thing helps you.
I had my pre chemo talk with a nurse today and also had a blood test which I passed so all systems go for tomorrow at noon. I am having chemo through a cannula.
The last two days are the calmest I have been since all this started. Although falling up the blooming stairs yesterday was horrid (hence the dark glasses in my photo). I like this state of calm and am hoping It continues.
Welcome to Namaste, although sorry you have to join our bunch!!
Have a good evening everyone and Marie, please please take it easy xx
Hi Moonies lol,
im feeling a bit better now thank you though hubby says I look rough 
He will pay later
Hugs to everyone xx
Marie
Angela - those stories on the secondaries pages among the most inspiring!
Thinking about dental hygiene after reading all our posts about hygiene, and coincidently had a dentist appt today booked back in Sept and postponed once cos of breast clinic appt. The hygienist also works at ONC with facio/Maxillary cancer patients and knows tons about chemo. She gave me samples of non-mint toothpaste to try and recommends a paste you coat your teeth with when you are sick which not only protects them but also has fluoride and calcium in so it strengthens it. (I think it’s called MI paste; there’s also a product called tooth mousse which doesn’t have fluoride) Hoping this will be okay with my onc. The down side is it’s £13 per tube but is said to last a long time so I got some. It comes in lots of flavours. It will help when I’m back on Letrozole cause that gives me morning sickness intermittently. She says for cold sores the best think is iglu- I need to run that past onc as well. Hope someone finds this useful, I did.
Angela I’m so very sorry that you have found yourself in this position when your only trying to get your head around everything else I hope when chemo starts you see some shrinkage to the LF(little f****r) on your liver which is a term I’ve heard from another woman on this forum and find it very apt stay strong Angela we are all thinking of you sending you a massive hug lots and lots of love to you caz xxx
rara all the best for tomorrow here’s hoping that you are able to come on here and say that it went ok be thinking about you stay well moonies xx
Second your post caz haven’t got the energy to write it out fr myself lol lazy or what xxxx
Marie
Hi All,
my first post on here & it looks like I will be a May Moonbeam! Start FEC-t on 16th May having a Picc line fitted on 15th. Eeek! had a very daunting “chemo talk” today running through all the side effects etc. So glad I have come across these forums as I can keep an eye on how the Feb & March people have are getting on to prepare me for future cycles love to all xx
Hi Moonies!
Well it’s looks like I’m going to be a Jugless June 
As my blisters are not healing I’ve been given some antibiotics and new dressings and four weeks to hopefully be all healed! Feel somewhat deflated as you are all so fab and those of you who have started your journey are aninspiration. I know it is weird to be so eager to join you but this delay feels like being back in the waiting room and I’m sure you all remember what that was like.
As I’m having to wait until the 13th June anyway, I’ve decided to have the Oncotype Dx trial. This will determine if chemo will be beneficial to me in the long run. They take samples of the tumour cells and look at 21 genes to determine your chances of recurrence.
I am still preparing for chemo and will follow you all with interest. Your advice and experience is invaluable and you are all wonderful brave ladies. Xxx
Angela - I’m sorry to read of the secondaries and hope the chemo blasts it to oblivion. Keep positive xx
Good luck to those having piccs fitted and starting chemo in the coming weeks
Big hugs and thanks for all you’ll suppport. I hope the june ladies are as lovely as you all. Emma xxx
Melrose hope you will still p by from time to time you can be a honorary moonie :-))
Marie
Hi ladies/Moonies
I’d like to join you all if I may 
.
I have Chemo starting tomorrow 6 x FEC100.
PICC line inserted tomorrow then immediately followed by 1st session.
I was so hoping I would be VERY lucky and not have the chemo.
I have been offered to go on a research trial called OPTIMA which I jumped at, as basically it tests the tissues to see if Chemo has a positive effect or not, as research has shown Chemo has no effect on some forms of oestrogen led cancer, therefore getting unnesseary treatment with awful side effects. Hormonal Therapy would be given only. This is currently available in the UK if you wish to pay for it but VERY expensive!
Well results came back Tuesday and the carrot that was dangling in front of me has been taken away
Very nervous about tomorrow, but in a way a little relieved to get started! I’m swatting like mad now for any tips with coping, I’ve been in denial regarding Chemo now i’m unprepared.
I shall be having treatment at Cherrywood, Exeter Hospital.
Sooz x
Ah Melrose (Emma), just read your last post. I am also on the Oncotype DX (OPTIMA) trial, but have been put in the Chemo group.
I hope you are successful with the results you want.
Thank you for wishing us all well with the starting of our treatments, and likewise hope all goes well for you too.
Let us know how you get on with the trial.
Sooz x
Angela----all I can say is Awww.! Have fun with the Junies.
Welcome Sooz and… wow…don’t things move fast when you get started! Good luck with the chemo mine isn’t for another 2 weeks.
Now then, please tell us more as you go on about the Oncotype DX- you must both be having it at NHS expense? It’s only available privately in my area, and I would have paid for it as it would have saved the expenses of not working/the commuting to surgery and hospital etc etc etc so I talked it through with my CS and to my joy she seems to have raised it at the MDT which increases my respect for all the lovely people who are working together for me and so many others.
Anyhow the CS and I had agreed that it would not be for me as we really have a need to just zap this thing before it spreads any more- it’s a naughty tumour not behaving as it should. But for you two it is obviously going to be fabulous to be part of the database which will make it possible for our friends colleagues, younger relatives et al to benefit in the future the way we are benefiting from what those 180,000 brave women did in the 1980’s- and 1990’s helping to refine chemotherapy so we could have it!