Hi Everyone
I would really like to join this group as I think I will be starting chemo sometime in April. I was diagnosed with Invasive Ductile Cancer with intermediate DCIS on 28th February. I had WLE and SLNB on 12th March, the dressing were removed yesterday and I also got my results which is stage 3 ER+8 PR0. I will need 6x chemotherapy followed by 15x radiation and 5 years of hormone treatment, luckily there was no spread into the lymph nodes. I meet with the Oncology Team on 4th April and my BCN thinks I will start my chemo the following week.
I feel like I’m on a rollercoaster as everything has happened so quickly…in some ways that is good as I’ve just had to get on with it, but it is hard seeing the shock and worry on the faces of family and friends. The most immediate problem I have is concerning hair loss…Does anyone know how soon this starts as I’ve got a family wedding on 31st May and I need to know if I need to get my act together and get a wig sorted out. This leads me on to all sorts of questions re: wigs which I think I will speak to my BCN next week.
I’ve looked at quite a few posts on here and I think the support is fantastic.
Hi everyone
just a quick update my water bed did indeed turn out to be a seroma!
Had 70mls drained yesterday morning-didn’t feel a thing, but by last night it was sloshing and slurping away again. got a feeling ill be back there again tomorrow for another draining. Didn’t know I was actually in so much discomfort until the liquid had gone then it was ooooo lovely to be able to move again.
(((((( ))))))
mandie
Hi Debra,
I found the info about the girl using the cold cap she included a few pics throughout so it was good to see her result. You can check this out at the following site http://earthymother.hubpages.com/
Mandi,
Glad you had some relief from the drain away, I have not experienced a seroma but does not sound pleasant so glad it has difference having it drained, take care.
Welcome to the new members too - it does help to follow others progress we share the same concers…one biggy being the hair loss as one of the side effects. With regards getting sorted for a wig, whenever you feel ready. When you will need it though will depend when you start your first cycle many people are advised they start to lose your hair before starting second cycle.
Hope everyone doing ok, My day 3 is going ok after 1st cycle…long may it continue!!
Take care all
Lori x
Lori - I’m glad to hear your 1st Chemo cycle is going ok.
Kim - My BC nurse said I should expect to start losing my hair within a few weeks of the first cycle. I have bought a hat and bandana,but no wig yet.Guess I should get that one sorted out.
Littlescoot -I hope you get rid of your seroma soon. x
It looks like I might be joining you in April! I need to go back and read all this thread to catch up, but my mind is a bit all over the place today.
I had a DCIS 3 years ago (lumpectomy, rads. Tamoxifen), and now have a new lump in the other breast. This one is triple negative grade 3. Had various scans tests, MRI etc and yesterday thought I was finally going to get my operation date. Went to see my surgeon and she said they have changed their minds and they will do chemo before the do the op.
It was something to do with triple neg not always responding to chemo, so if they chemo it after they take it out they won’t know if chemo working or not. However she did say that these aggressive ones usually respond really well to chemo and it might shrink to nothing.
So today I had some dye injected to mark where it is in case it shrinks to nothing, as they will still operate afterwards.
Is anyone else having chemo first?
The other week my Onc said that if it had gone into the lymph nodes then I would need a stronger chemo, but now they aren’t operating first, then how will they know what strength chemo I need?
I am seeing him again on Tuesday, presumably to schedule the chemo, but wondered if anyone else was doing it this way round and what you were told.
Also, I was told I’ll need a portacath inserting and when I asked the breast care nurse about it she said it will be done under local. Anyone else had that?
The good thing is my breast care nurse has booked me on what I think is the Belgian equivalent of the “Look Good, Feel Better” skincare and makeup sessions on 15th April, so looking forward to that
Take heed girls I’ve been through this {it’s not nice} but I have come out the other side… 5 years on. Its hard and it’s not pleasant but it can be done.
Thank you so much Lori, I looked at her journey and felt comforted. I am having the 2nd chemotherapy on the 2nd April
E CMF it is called. I am trying to enjoy Easter and being with my fiancé. I have cleaned the house today and I am tired.
i will let you know how I get on.
best wishes to you all.
Debra xx
Good luck Debra, we’ll be thinking of you on 2nd and throughout. Glad you found the blog ok.
Im still feeling rough with the nausea, reflux and headaches but still hoping this is as bad as it will be for me…im sure very niavely but hey ho whatever gets you through.
Take it easy folks
Love Lori x
The nausea should not last to long, keep taking the tablets they give you. I am thinking about you Lori.
I found I craved for citrus fruit and was very thirsty. My sense of smell was enhanced also.
Debra xx
I’ve had a busy ‘cancer free’ few days which has been a great distraction - just catching up with friends and family and not thinking about treatment etc too much at all
Back to reality now with heart scan on Wednesday, pre chemo assessment also on weds (at different hospital, very co-ordinated!!) then chemo starts on the 5th. I’m slightly concerned that there will be a delay as they won’t be able to get a vein for blood on weds and will have to get another appointment to get a line fitted. For my 2 ops the aneasthetist couldn’t give me a GA (as no veins) without putting me under with gas first just a bit annoyed that I have been calling this out all along but they are going to ‘try’ first on Wednesday then take it from there. We’ll see what happens…
Lori - thanks for sharing how you have been feeling each day, doesn’t sound like plain sailing but equally doesn’t sound as bad as some, hope it get’s a little better
Amber - good luck for Tuesday, will be thinking of you. Think it may have been you Amber who mentioned in an earlier post about a cash payment from private Ins even if you go with NHS. I contacted them and got £150 as I had to spend 1 night in hospital - thanks for the tip - used the money to pay for my scarves and hats…
Hi all, hope you are all having a lovely Easter, i finally got my drain out today! Yeah! Such a relief.
Amber and Wendy hope you both had a lovely weekend away
Mel and Diggy how are your haircuts? I’m having mine done next week
Amber and Debra good luck with 1 and 2 on Tuesday
Lori hope SEs continue to be not too bad
Hope I’ve not missed anyone, I’m losing track of us all already! But if I have and you’ve appts next week, good luck
xxxx
This must be a very anxious time for you. Hope you don’t mind me popping in from the February Valentines, Please feel free to read the poems I’ve put on there. Some are cancer related, others aren’t. You might find them comforting, or a way to get your anxiety, rage, sorrow out of your system a bit.
I am so frightened about tomorrow which is chemotherapy no 2, I am having the cold cap and my hair is shredding when I gently pull it, I know I should not do that.
I feel so low today I have stayed in bed, I feel safe here. Any one else feel like me?
Debra. xx
Hello to all you Awesome April Angels
Just got back from a lovely break in Cornwall. Dentist and haircut next week, I googled pixie hairstyles and found the look I want. I hope I keep my hair for a few weeks! Got the ‘chemo chat’ on 8th and first treatment on 10th. Worried about them finding a vein as it’s always a struggle. But we will get through this!
Hi lovely ladies … I’ve been out of hospital for a week following my MX and recon
I have been reading all your posts but haven’t replied until today as I felt so awful but on the mend at last (although I hurt my back picking up my daughter for the 1st time yesterday so have ended up back in bed today - - is there no rest for the wicked )
I have been following all your posts though - feel like I know you all already!
Debra - I am so sorry you are having a bad day, and that I can’t cheer you up lovely - but this is the best place for you - because we ALL have those days and the same thoughts that you do - - sending you lots of love and the very best for tomorrow x x
Hi Angels,
Hope you alll had a lovely easter, had a great time in Amsterdam wish we could have stayed longer, a nice break away from reality.
Back to reality, had my bloods taken today in preparation for chemo tomorrow morning. The nurse wanted to take blood from my affected arm but I refused. Anyway long story short my chemo kit is ready added another item, bought myself a onsie to slouch about in if I have rough days.
Debra - good luck gf or tomorrow will be thinking of you
Lori- how are you getting along?
Pauline & Kath - thanks for the good wishes
have a nice evening, girls
will keep you posted on how tomorrow goes xxx
i’m seeing oncologist tomorrow afternoon to sort out when chemo starts. Ridiculously i started with awful toothache on Saturday and dentist isn’t open until tomorrow. i suppose its better i get it now rather than during chemo but i am so hacked off. hope it isnt a big job as i don’t want it to affect when chemo starts, as i am having chemo before my op.
Hi all and Spudgirl,
I too am having chemo before surgery and have already had some sort of marker/coil put in. Lump is at stage 2 and is over 4cm and I have lymph node involvement. First time for me. I am absolutly petrified of the whole thing. In for cardiac scan tommorrow. Wed in for bone & Body scan, Sat middle organ scan. So many things and having to wait for the results is harsh, I should know tommorrow when I start chemo (next week i think).
I was told by my oncologist that cancer can still return even after Mx and that chemo would shrink the lump so that reconstruction would be an easier method nowadays. I have no idea if this is the right way round but its the only option they have given me.
Thank you all you lovely people for letting me join AAAs its good to talk.
Lv & best wishes.
Sandy
argh !! just typed a message and lost it! Sandy, good luck with all the tests this week. I do hope you start feeling better soon, its no fun being in the petrified stage.
i was supposed to have op first but they changed tack and decided to do chemo first. i only found out last Thursday so not got appointment yet for haircut. Mind you, at least i’ll get the dentist appointment out of the way now - i hate going!
Hugs to you Sandy, let us know how you get on with the tests!
xx
Just got back from oncologist. Have been told Her+ too whatever that is. All I know is that it’s bad as the drugs to combat this type can affect the heart muscle (but it is rare). Three more tests to go. So far the tunnel is getting longer. Have now convinced myself all other tests are not going to end well. Has anyone else had ER+ Her+ and the other one +. New to all this gargon.
Hugs to you Spudgirl I pray they blitz us both with the right drugs that work and kick this thing straight to hell.
xxx
just a bit annoyed that I have been calling this out all along but they are going to ‘try’ first on Wednesday then take it from there. We’ll see what happens…
)