Ibc - FECT didn't work. Help - lung and skin mets!

Hi

I don’t post often as have been in a negative place since diagnosis, but am often cheered by other people.
I was diagnosed wi IBC in May. had 3 x FEC,But tumour in breast got painful with internal necrosis, and tumour in lymph grew, plus pleural effusion showed cancer cells escaped into blood stream. Tried 2 Docataxol, with no effect except the tumour in lymph now grown into chest muscle and skin mets appearing. So, no chance of any surgery. Onc not convinced any chemo will work.

I know I have months not years (after asking the prognosis question). Onc is planning to try a newly licensed combination of Avastin plus Capacitine. She is not hopeful any chemo will work however and as I am Her2negative, she is talking about local treatment only going forward. Eg, rads and lung draining etc.

I know there are many positive stories of secondaries people out there, but am struggling to find IBC ladies, who have the same aggressive growth and resistance to chemo. Anyone else in a similar position?

As I have two young girls, my husband and I in a very dark place as it appears we won’t be able to stabalise this growth. We have been referred to the palliative psychology service, but the whole thing is surreal. It has only been 4 months since I found the lump!

Any advice would be gratefully appreciated on coping strategies.

Sue x

Hi. Oh Sue, how hard!

Sorry, no help with ibc but ive just finished 18 taxol and AVASTIN with good response. In trip neg with lung and bone mets.

I do hope they find something.

Hugs nd more hugs.(((((xxxxx)))))

Sadie Xx Xx

Hi there Sue

It sounds like things are very difficult for you at the moment. If you feel it might help to talk to someone, do call the Helpline. They’re great listeners and can also point you in the direction of other sources of help and support.

The number is 0808 800 6000. They’re open Monday to Friday 9-5 and Saturday 9-2.

Also, you mention you have two young children so I’ve given here the link to our factsheet on the subject of talking to children about breastcancer.

It can be either downloaded or ordered through the site:

www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/talking-your-children-about-breast-cancer-bcc50

I hope this information is useful.

Kind regards.

Louise
Facilitator

Thanks for your replies.

I guess not many similar ladies…

wishing you all a good weekend.
S x

Sue - sorry nothing useful to say. but wanted to say thinking of you.

Hi Sue, I am an IBC lady but have had good response to chemo so I can’t help you with advice but wanted to send you my love and hope things get better and they find a treatment that makes your life a little more comfortable.
Jean .

Hi - IBC colleague here diagnosed 2009 with secondaries (bones and lymph nodes)and also Her neg. Also have two teenagers. Had the chemo/surgery/rads and then onto tamoxifen. When that didn’t work, onto Aromatose Inhibitors with Zoladex (am peri-menopausal). Firstly Femara. When that stopped working, changed to Aromasin and have just heard that that too has stoppped working. Back into Oncology Thursday to see what’s next… Don’t know if these are options for you maybe?

Do you think you maight find more IBC ladies with secondaries if you posted on IBC forum??? I do hope you find the support you need to give you hope… I only found your post’cos I was looking for any answers to my earlier query about a drug trial (ZICE) for secondary cancer I’m on…

Tillybob, thanks for your note and support.

Haxted, I just found the IBC forum yesterday, so, catching up,with the posts there. Thanks. Sounds like you have really been through it yourself. Good luck for the next part of your plan.

I am calmer about it all now. Doc is hopeful Avastin with Cap might work. I think if I could just get some stabilization with the main cancer, I could cope with the secondaries and local treatment for them. While waiting for Avastin approval, i (apparently this combination was only licensed in Aug this year)will have some radiation to the breast and lymph node, to reduce tumours.

Just one more question - I have considerable pain in the two tumour sites. Onc thinks is necrosis or abscess from dead tissue. I am having another ultrasound this week where they will try and drain sites - did anyone else have this kind of pain or treatment.

Thanks again for all your support. Never thought the saying one day at a time would mean so much!
Sue x