inflammatory breast cancer

Posted by Veronicakin on 22 Jul 2012, 05:20AM

Has anyone been diagnosed with inflammatory breast cancer. A week after also diagnosed with lymph and lung secondaries

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Lorraine1's picture

I was diagnosed as well with secondaries two weeks after my operations.  i hope you have a good support around you.

Inflammatory Breast Cancer

jaydub26's picture

hi I am Jenny and I live in New Zealand - I was originally diagnosed with IBC stage 3 in august 2008 and developed liver mets beginning of 2011

We have started a australasian group for women with IBC so that we can share info - there is also a couple of Facebook  groups for IBC support and an international forum mailing list ibcsupport.org

if you want to know more details you can direct message me and I can give you moore details

Veronicakin's picture

I don't have facebook but would love info

Inflammatory Breast Cancer online support

Daina Jones's picture

Hi Veronicakin,

You can connect with the "Inflammatory Breast Cancer" online support group in our network - It is a great way to share experiences with others who have been diagnosed with IBC.

You might also want to make a blog post into the group or send a personal message to the group members.

Here are some links which might help:

Just shout if you have any questions.

Cheers,

Daina

Yup

Stressmagnet's picture

Diagnosed in 2008 - it turned into Triple Negative a year later. Would love support, tired of being the one with the 'weird' cancer!
- Lu

Veronicakin's picture

I can't find much support for my inflammatory cancer with secondaries - only 1 other girl has it at my hospital and she is final stages. Not doing well on chemo - do you know your prognosis?

Stressmagnet's picture

I had mets to spine and lungs. They stabilised after some mucking about with chemo. Ironically, it's not the IBC which will kill me, it's the triple negative.
Where are you, and what treatment are you on? How old are you?
Ignore the stats, they will make you crazy. I had it beat until I got so sick.
X
Lu

Lorraine1's picture

Each case is different.  I have hope that the chemo will be sufficient enough for me to pull through for a lot longer. I too am triple negative but there isalways hope there will be a course of chemo that will hold the little bastard at bay for a long time.

Veronicakin's picture

I was diagnosed end of june and secondarys a week and a half laterjust started my chemo have really bad dirrhea its killing me has anybody else had that reaction to the vhemo and what did you do to stop it. Im 54 and at redcliffe hospital in qld. Having four lots of chemo every three weeks

Lorraine1's picture

you should talk to your breast care nurse. or better still give the oncology ward a call.

Stressmagnet's picture

Depends on the drugs. I get diarrhoea about 4 days after treatment which lasts for about a week. My Onc told me to take Gastrostop. Apparently, some chemo hits the lining of your gut causing heartburn and other digestive upsets. Give it a go and talk to your Onc when you can.


 

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