IBC - Need people to talk to, HER2+, hormone -

Public Archive
21

Well what happened to the sunshine?!!

Carole I’m very jealous, though must admit I got a little burnt in the garden this week, desperately hoping it fades before my clinic appt on Monday. I feel a telling off coming :frowning:

Try not to overstress the bites, easy to say I know, but also so easy for us to associate every little thing with cancer amd worry ourselves sick.

Theresa, one year, and doing so well :slight_smile:

Andi, I agree, whatever they throw at me (within reason) I’ll do. We must combine our experience with their expertise.
I don’t recall the SE’s being too terrible with Femera, achy joints in the mornings similar to tax.

Sharon, apologies :frowning: Too busy responding to the fact that most IBC are triple neg. I’m not either!

Just a thought too Dawn has been on herceptin for a good long while now, well over 2 years, as it continues to do well for her. When I went for my second opinion at the Marsden the only part of my treatment Dr J queried was the stopping of herceptin (and indeed now has me back on it). He feels very strongly that it should be used for IBC/HER2+ cases.

Jackie x

22

hi all my name is laura just been dignosed with bc but now they think i have ibc feal i have not been told very much ie what cancer i have and etc starting chemo in a week on fec and tam am very worried and scared about it all as we all no ibc is not good to have any info you can give me would be greatfull i dont no what to think or where to start had a biospy at beginning but was only told had 2 lumps that was cancer and one not hormoane senitive they dont want to do another biospy as will delay chemo hope this makes sence to someone sorry dont know what to write still very upset about it all xx

23

Hi all,

I’ve been away for a few days and I’m just catching up on all the posts. I’ve tied myself in knots too since my diagnosis trying to work out my chances with all the statistics. My mate in the USA says they’ve had really good results there with Herceptin for HER2+. They’ve been using it now for 10 years and it is beginning to improve the 10 year survival rates. (Sorry that’s not much use to those who are not HER2+.) I’m pinning my hopes on that for now.

Laura64. Sorry you have come to join the club. You don’t say where you are but if you are in the UK you should ask to see the breast care nurse. The clinic can put you in touch if they haven’t already. Sometimes the consultants are just too busy to make time to explain things properly. It isn’t right but the clinics are just so busy. I found the nurse was better at explaining things and can also tell you all the tips for coping that the consultants don’t.

The symptoms for IBC are quite different to other types of breast cancer. Is your breast swollen, red and hot to the touch? If not, it doesn’t seem like IBC but please ask your nurse for advice.

Janxx

24

Hi Laura

Sorry you have to join us but this web site is really good.

You have to get on with chemo for now and concentrate on one stage at a time.
Once you have had your surgery they will take the results from that, although they do the biopsy they take the diagnosis eventually from what they remove. That’s how I found out I was hormone negative.

Take thing one step at a time, don’t overload yourself with too much info at first, don’t get yourself stressed, stay positive.

I know it’s easy for me to say all this to you but I have been on this journey since 22nd Sept 08. I believe having a positive attitude has got me through all this.

It may not feel like it at the moment but there are plenty people to talk to.

Hang on in there girl

Sharon xx

25

Hi Laura - sorry that you have had to join us… Agree with Sharon - try to take it all one step at a time… It was my one year anniversary of getting diagnosed yesterday and last year i only ever dealt with one stage at a time… I never even read a word about radiotherapy until the fortnight before i had it for example…

Must admit i have done alot more reading around in the last couple of months since i finished active treatment though…

Hope you can have a chat with a BCN and see if she can help… have they changed the diagnosis because of changes to your breast or because of getting lab results back…?

Theresa

26

Hi Laura

Sorry that you had to find us, but now that you have you will find that we all support each other as much as we can.

Once your treatment has started you will know that something positive is being done, and you should be able to feel more positive. One of the worse parts of all this is the waiting, for results, for appointments or even just for phone calls from the Breast Care Nurse.

I was diagnosed in August last year and have finished chemo, surgery and radiotherapy. Now I am waiting to see my oncologist to discuss what happens next.

Take Care

Andie

27

Hello ladies

Laura, sorry that you have been diagnosed with BC/IBC, if it is IBC it is important to get a treatment plan going, usually chemo before surgery I think in most cases. It is scary; I remember that feeling so well. All I can say is, you will get through it, it might not seem like it now, but you will. This site and some others are very helpful if you have any questions about BC/IBC. I’d just like to say that I didn’t present with all the usual symptoms of IBC, I didn’t have a red breast, and to the touch it didn’t feel hot but it felt like it was burning inside and it just grew and grew and grew. Eventually by my dx, it was 8 cm+ (in 8 weeks since finding a strange hardened area).

Sharon, yes I think I will be finishing either July or August but I am not sure. My 16th round is next Friday.

Theresa, I hope the anniversary of your dx came and went without too many horrible memories. It was only a day (my anniversary is next Thurs) but it will be imprinted in your brain for a long time as it will mine. The anniversary of your Mum’s death was probably more sad for you, the loss of a parent – especially a Mum is very hard to bear. I am not sure when I will next see the Onc, but I do have an appt with the surgeon in June to check on the scar and I think to talk about recon. Do you know if you will have recon yet? The insect bites are annoying, but I am sure that is all they are, the one on my BC arm seems to have faded, I think I look at it almost every couple of hours. Paranoia or what?

Andie, I was born in London – Lewisham and my Mum, sister and brother all still live in London. What part of London are you? Where have you been having your treatment?

Jackie, I know what you mean about the bites, as I said before you can get paranoid can’t you, I will try not to. I do wonder why they think that Herceptin should only be for one year. Why? For the ER/PR+ the hormonal tablets are for 5 years aren’t they – so this part of having BC confuses me. I am trying not to think what will happen when I finish Herceptin. Does Dr J think IBC/HER2 ladies should stay on it indefinitely?

Jan, I ask you the same question as Jackie really, in the USA do they give Herceptin for longer than a year for IBC/HER2+ ladies?

I had a second bone scan last week because of the problems and pain with my shoulders, and thankfully everything was fine except that the pain is down to frozen shoulder. Yesterday I had a steroid injection in the shoulder joint, and had quite a bit of difficulty driving home afterwards – a numbed arm that wanted to go in the opposite way to the way I wanted wasn’t particularly good! Anyway, I pin my hopes on that it will work and relieve my pain and mobility problems.

And so we are in for another bank holiday weekend here in France, and the forecast is good, so hopefully I will be swimming in our pool (it’s not as fab as it sounds its only a blow up pool), looking after our veg patch and taking the dogs for a walk – if I’ve got the energy that is.

Have a good weekend everyone

Love Carole xx

28

Hi Carole

I live in Anerley, South London. That’s an area between Crystal Palace and Beckenham. My treatment was all done at the Princess Royal University Hospital(PRU) which you may remember from your time in England as Farnborough Hospital. The old hospital was completely rebuilt a few years ago and the Chartwell Unit( Cancer Department) has won a Beacon Award for Excellence.They have no Radiotherapy Unit so I had to travel into London every day to either Guys or St Thomas’.

Obviously I would much rather not have to be dealing with the hospital on such a regular basis but must say that to date they have been amazing.They picked up IBC immediately and the time between DX and chemo was 2 weeks. In that 2 weeks I had MRI, CT and Bone Scans and had all the results back before chemo started.

My oncologist only works there 1 day a week, she is normally based at Guys, but the BCN is always available and as well as being a very nice person she will always seek a doctors help should the need arise.

Our weather is expected to be good this weekend as well, so with the protection of Factor 50, the garden just might get some attention.

Take Care

Andie.

29

Hello Laura,

Sorry to read of your recent dx.
FEC and Tax are the gold standard treatment for IBC and are always geiven before surgery. Other types of BC will also be treated with these chemos.

I think any dx of BC completl;y knocks us for six, no wonder you are feeling all over the place.

Personally I never look too far ahead, and I never take any notice of statistics, it’s my way of coping. Once treatment starts you will focus on that and tick off each cycle as you complete it. Don’t worry about the next stage until you get there, you have enough to deal with right now.

Do come back and let us know if IBC is confirmed. We are here for you whenever you need us.

Love
Jackie x

30

hi all thanks for your kind words i feal a little better today and once chemo starts will start to feal better still unsure if i have ibc even though i do have most of the symptons as they dont want to do another biospy because will delay treatment i think they are just going with their exp i have noticed my veins come up quite a lot and go blue sometimes but settle down when i rest does any one else have this happen to them i hope you all have a gd weekend looks like the weather is with us xx

31

Hi All

New here. Already on the Cornwall site.
DX middle of March with IBC. Just had 4th dose of chemo plus herceptin. All going well and boob almost back to normal. My consultant says i’m doing bloody well and to keep on doing whatever it is I’m doing coz its working! Due surgery end of July (I hope) followed by rads for 3 weeks.

I’ve found its easier just to go with the chemo feelings and try and remember its the treatment that makes you feel rubbish sometimes. I know I’ve had a bad day today (chemo last Thurs) but tomorrow will be better.

Is there anyone else there from Cornwall with IBC? Already in touch with some wonderful ladies with BC, just wondered if there was anymore cornish IBC girls.

Great to chat to anyone,

xx

32

Hi fudgeincornwall - sorry that you’ve had to join us - but pleased that things seem to be going so well…:smiley:

I’m at the total opposite end of the country i’m afraid - Northumberland…

Theresa

33

hi rhapsodyangel glad things are going well i was dx in may due to start my chemo next week feal really nervous hope mine goes smooth to take care xx

34

Hello fudgeincornwall,

Don’t know of any other IBC ladies from Cornwall I’m afraid, but the rest of us are more than happy to chat whenever you need us.

What chemo are you currently on?
It’s great that you are having such a brilliant response and I totally agree with you I always felt if I feel rubbish it must be doing something good!
I had my fifth herceptin today (second time around with herceptin) and apart from the runny nose and rubbish veins am feeling OK.

To the rest of the ladies,
my clinic appt at the Marsden went well today.
Snr Reg feels the progression in my skin mets occurred during gap in treatment and at the mo heceptin/aromasin combo is keeping them stable. I’m pleased as I’d been worrying since one of them had bled a couple of weeks ago, scared the life out of me for a few hours :frowning:

I see my local onc on Thursday morning, can’t give him up, trust him completely. Will run everything past him just to double check and reassure myself.
Take Care ladies,
Love
Jackie x

35

Hi to fudgeincornwall

Sorry that you’ve needed to join us here, I want to welcome you, but it sounds as though you are taking treatment very well, so keep up the good work and hope the good response continues for you and you have your op as planned in July.

Hi Theresa, Jackie, Sharon, Laura, Andie & Jan hope you all had a good and sunny weekend, its been so hot here, plus 30 degrees every day and I’ve needed to cool off in the pool. It’s cold in the pool though, but a brisk swim does me the world of good. I hope that swimming is doing my BC arm good, the pool isn’t very big, just enough to do a few strokes and then turn round, but hopefully its good therapy and I do enjoy it. Even managed a 30 min walk today with the dog.

Andie, I used to live in Beckenham many years ago, on the Penge border. Used to take the train from Beckenham station to travel up to Blackfriars to work each day, oh those were the days. In the early 80’s (may have been late 70’s but my brain can’t exactly remember when) when all the rail, buses, electric etc were on strike I used to have to catch the company coach at 5 am to get to work. We used to watch the Crystal Palace fireworks every year from our lounge! It sounds like you are having excellent treatment from your team.

Jan how are you doing? Hope that everything is ok for you.

Take care all

Carole xx

36

Jackie - glad to hear that the appointment was positive…:smiley:

I seem to be going from one scare to another at the moment… The last couple of weeks my “good” breast has been hurting…:frowning: and I noticed at the weekend that the nipple seems to be changing - becoming inverted…:frowning: That was one of the things that had happened last year when i was diagnosed… I only had my mammogram and ct scan a couple of weeks ago - and both of those were fine… But my mammogram last May was fine - and the ultrasound a week later found a 5cm tumour…
Anyway - I phoned my bcn yesterday and she said I have to go and see my GP to get referred to the clinic again as it is my other breast… so have got an appointment for tomorrow… Will insist that the gp has to make it an urgent referral… (last year they hadn’t even heard of IBC…) Obviously the fact that something weird is happening with the nipple again is very worrying…:frowning:

Theresa

37

Hello to you all and thanks for your comments

I’m on Docetaxel, carboplatin and herceptin. So at the hosp.most of the day last Thurs. Just coming out of my chemo fog now. Hopefully do a couple of hours at work tomorrow and try and get back to normal.(whatever that maybe).

I’ll keep my fingers crossed for you Theresa.

xx

38

Hello Theresa
So sorry to hear of your extra worry now with the “good” breast, when does it ever end, eh? I am sure you will get an urgent referral with your past history, but good luck, will be thinking of you and let us know how it goes.
Many cyber hugs for you
Carole xx

39

Thanks Fudge and Carole - just got to hope it is something simple… i’m hoping it is nothing as the CT was okay… given IBC and mammograms i’m not giving that being clear much importance… lol But as i’ve said before in this section i know how last year i went from a totally normal looking breast on my holiday - to one that showed every symptom of IBC a month later…:frowning:

40

Theresa, phone your oncs secretary and explain your worries. I’m sure he will see you urgently.Obviously hoping it is nothing to worry about but we all know how important it is to check these things and quickly.

Carole, replied to you on bcpals re skin mets Q.
You’re making us very jealous indeed cooling off in the pool. I’m sure the arm exercise is beneficial.

I was back to work today after a lovely week off for half term plus an inset day for report writing!! Very hot here again, not that I saw too much of it. Difficult to know what to wear in this heat isn’t it? So many tops are quite low cut. I usually put a vest top underneath but don’t appreciate the extra layer when it’s so hot.

Take Care ladies
Jackie xxxx