ibc gone back gone back

Hi everyone
New to this site and would like to chat, have ibc and would really like to talk to people in a similar situation (hope there is not to many) would not wish it on anyone. Have not met anyone with ibc and don’t really talk about it to family etc
Love Mel

Hi Jackie

Good luck for scan tomorrow, will be thinking of you

Off out tonite darts !!

So I be back on tomorrow

U take care 2
Love Mel

Hi Jackie

How did your scan go?
Hope u ok!!

Love Mel x

Hi mel,

Had CT scan, results on Monday. managed to bleed all over the place so I’ve left a good impression!

Marsden rang me yesterday, they have arranged a MUGA scan next Thurs, not had one for a couple of years.
Trial nurse says that according to her info I will be starting th lapatinab/capecitabine trial unless MUGA is poor.

Anyway, I see Dr Johnston on Monday so al will be revealed I’m sure.

Feeling very guilty about work, another day off next week now and my youngest is due to have teeth removed on Wed in readiness for his brace.
How to make yourself popular eh!!

How you doing today?

Jackie xx

Hi Jackie

I’m fine, went shopping spent some money {that always cheers me up}

Cos i’m on herceptin I have muga scans every three months and the onc and trial nurse said on Tuesday that the trial { lap and cep} don’t affect your heart as much as the herceptin, so you should be ok. My skin mets are really weird sometimes they look redder and feel lumpy and then sometimes they don’t look so bad! Strange!! I think I’ll give it another month and then I be on the trial myself. I don’t understand though how they can treat you with secondaries etc to try and get rid of it but they can’t cure skin mets.

Don’t worry about work, you are more important. Works there after us! What do u do???

Love Mel

Hi ladies - sorry to but in - I have had some valuable support and advice for bone necrosis side effects from bisphosphonates from the ladies on the US ibc support forum - they seem light years ahead of us. When you consider their population compared to ours, they obviously have far greater numbers of women with ibc, and many of them go to the only dedicated IBC centre in thw world, at MD Anderson hospital in Houston, Texas. Some of them have skin mets, so may be able to give you the benefit of their experience.


Hi Liz

Thanks for that.
How do I get on the site ?

R u IBC as well? Can u tell me about yourself?

Yes you’ve guessed it I don’t stop talking and I’m noisy!!!

Love Mel x

Hi Jackie

How do I use whisperback???
I be on tonite.
U have a good day too!!!
Love Mel xxx

Hiya mel,

To ‘whisper’ you just type the name of the person you want to send to in the box above the comments box. You need to make sure you spell the name exactly as it appears in blue above the person’s post. Then just send in the usual way. Only the person you have whispered to can then see the message.

Well I think I’m going through the wars this week. Took a while to stop the bleeding after my zoladex implant this afternoon, I must be starting a new trend! GP has given me some antibotics to clear my sinusitis, had a couple of bad bouts recently, probably explains why my arm is giving me so much gip. Always aches when I have an infection! Tend to blame everything on the zoladex but it’s not responsible for sinusitis.

My GP asked if we were stopping zoladex, if it wasn’t working.
It hadn’t dawned on me that if there’s progression it isn’t working!! Doh!!
Anyway have said I’ll ask Dr J on Monday.

Where are you being treated?
I ask because someone on the other site was saying their onc had told them in January that the lapatinab/capecitabine trial was already closed, and she really needs to go on this trial. Marsden told me it is closing shortly. Did you mention you were delaying for now but have the option of taking part later?

Jackie xxx

Hi Jackie

Mine is not oestrogen only her2, when I first had lump I had chemo first then surgery where they removed my breast and I had a muscle expander put in at the same time, over 8 weeks they expanded it, by placing fluid into a port that sits a bit lower than breast on my side, I then had 20 rads, and 1 hr of herceptin as soon as I stopped herceptin skin mets appeared on chest wall, so started tax and back on herceptin had 8 rads more and 8 weeks on skin mets have returned not as bad as the 1st recurrence but back all the same. I have about 3 and one is about a 10p shape, one a 1p shape and the other (do you remember 1/2p’s well it that shape. I just wonder do they keep growing and growing and growing??

Are you still on herceptin?

What did they tell you about skins mets?

Can anyone be seen by the Marsden??? Would they see me???

They won’t operate on me, as I wanted the to take my implant out, cut away affected skin and pull the extra skin that I have due to expander across, but they say that they won’t take the risk in fear of it going else where.

I really enjoy talking to you as I feel we can relate in some way although our stories are different in some ways, I feel it always nice to talk and compare.

I pray your results are good on monday and will be awaiting to hear from you monday nite as I am working in the day.

Ps I don’t own a pair of wellies either

Love Mel x

Hi Mabel

A muscle expander gives you the shape of a breast, it’s not perfect like having recon but it just gave me that bit to put in my bra XX

Hi ladies!

I wonder if I might join you on this thread. I used to post here when I was first diagnosed but have since forgotten my password and username. So, I’ve had to reregister. I already know Mabel who posts here but for you other ladies who don’t know me I’ll begin by telling you a little about myself.

I was diagnosed with bc in 2003. I had a very large lump and was given FEC in order to shrink it before surgery. I then had a mastectomy followd by Taxotere. All was well until a couple of years ago when I noticed a lump in my other breast. This was finally diagnosed as a new primary. At the same time it was noticed that I had a rash on my previous scar line. They thought it was Eczema. I was given Herceptin. This cleared up the lump in my other breast and got rid of it completely. I didn’t even need surgery as there was no trace of cancer in the breast.

However, the rash was eventually diagnosed as skin mets from my original cancer. It has affected the skin around my scar. I was told it was a local recurrence and given Capcetabine along with the Herceptin. The rash cleared up leaving a couple of nodules, one in the middle of my chest and the other on the scar line. As these were not growing my onc was happy to continue with the Herceptin and Capcetabine to control them.

So that’s my story up to date. I know this is an IBC thread and I haven’t got IBC but I hope you don’t mind me joining in as this is the only place I’ve found where skin mets are discussed. We don’t seem to fit into any catergory, do we? I can’t post in Secondaries as I haven’t got secondaries so here seems the best place.

Wishing you all well,


Hiya Sue,

You’re more than welcome! Lovely to see you.

Jackie xxx

Hi Jackie and Welcome Sue

Well Jackie we are going down a similar road now are’nt we !!!

And Sue you are more than welcome!!!

I was up till 4.30am this morning watching the boxing from Las Vegas.

Well our boy won but it was a close call, he was the better boxer but Hopkins put up a fight knocking our boy down in the first round.!
Not a lover of boxing but got to support Calazghe.

Am quite tired now though so can’t talk long.

Opened a new thread yesterday but have had no reply about that blueberry punch from australia, I bought some, it cost £135 can’t comment on it yet as only been taking it for week. Dear though!!! wondered what others thought!

Jackie thinking of you and good luck for tomorrow, speak to you tomorrow nite.

luv to both Mel x

ps bought lush dress yesterday for summer (cheered me up no end)

Hi Mabel

How did it go today ?

Hope you ok

Love Mel x

Hi Mel,

Have replied under your other post.

Get some sleep!!! LOL,

Jackie x

Hi Sue

How are you?

Luv Mel x

Hi everyone,

Great to hear you scan results were fine, Mabel. That’s brilliant news. My fingers are crossed for your Muga scan today.

How are you doing, Melba? Hope you’re feeling well. Horrid day here today. Wet and not like Spring at all.


Hi Sue

I’m fine had my herceptin today, feel ok though.

Where are you from?

Weather should be better for this time of year.

Hope you ok

Luv Mel x

Hiya Sue,

MUGA results good! Collect tablets tomorrow ready to start on Saturday,

Jackie xx