Newly diagnosed

Don't be sorry, at least you found the site, and posted your first question. 

Take care, 

Lyn

Thanks Lyn, Sorry about that I will have a read and try and navigate around the site a bit better

Hi Kylie. If you would like to order a My Journey Kit, you can order it online here or give us a call at 1800 500 258.

Hi Sharon, you've posted your question in response to another post, so you might be better off reposting on the main page. There is a trio up called getting started, to help with navigating this site. 

Have you ordered a "My Journey" kit yet. It has lots of useful information in it, that you can dip in & out of. Don't try and read it all at once. You will find lots of help & support on this site. I didn't have IBC, so can't help much on that, but happy to answer questions any time. 

Take care, Lyn

Hi All, 

I have been diagnosed with IBC last week, everything has happened so quickly. I have so many question but am finding it hard to find up to date information on IBC. Can anyone help me.   

Thanks Sharon 

Hi Everyone

I have not been on this group for quite a while.  I was diagnosed with IBC in December 2008.  After rigorous treatment (chemo, mastectomy, radiation, drug therapy with a trial drug, Herceptin) I came out the other side.  Still very regular doctors/specialist appointments but no sign of further cancer.

Keep positive everyone.  Happy to answer questions etc.

ReenieBabe (Community Liaison)

Hi Kylie,

Welcome to the group but sorry to hear the news. I was diagnosed in july with inflammatory breast cancer grade 3 stage 3 triple negative. I am 5 or so weeks out of completing chemo and have a left mastectomy on thursday.  I had TAC chemo, aggressive but its done the job. What i have learnt from chemo is

its gonna make you better. Remember that cos it keeps you going.

Whatever food you choose to take on chemo day you will not want to look at it again or for a long while. I learnt this the hard way i tried to be healthy each round but after round 3 i had limited options. Round 6 i took a diet coke and sweet potato chips! No loss if i never eat them again.

I lost my taste and spent hours in the supermarket buying food i wanted to eat but tasted blah. Your taste comes back and its like Christmas. 

Hair falls out and its not the end of the world...it grows back eventually

My finger nails are still good. I had SNS manicures every 3 weeks and the coating adds nutrients to the nails, toe nails are not so great. 

All in all the diagnosis is horrid, the treatment is horrid but the outcome is worth it.

Take care and take each day as it comes 

Wendy x

Hi Kylie. As Kim said, a lot depends on what chemo combination you have. I had FEC-D(a combination of 5FU, Epirubicn, Cyclophosphamide & Docetaxel), so I had 3 cycles of FEC followed by 3 of Docetaxel. The FEC took,about  3hrs, the 1st D took about 5hrs but he next 2 only about 2hrs. I always had someone with me, so we'd sit & chat, or check emails & Facebook, stuff like that. Do something that will distract you, & that you enjoy. 

Ice gloves are one strategy to help prevent nail damage. The staff where I am felt that they weren't much benefit, so they weren't routinely used. I wonder now if they just didn't want the extra time, as you have to wear them for at least 30 minutes before & after chemo. The other thing that is supposed to help prevent nail damage is wearing dark nail polish on finger & toe nails, as it protects from the light.

While I think of it, there is another website that has factsheets on all the different chemo combinations, and also on radiotherapy. It's called Eviq. You have to create a log in etc for it, but I have found it quite helpful, particularly as my hospital use a lot of their protocols.

Hope you're doing ok, Lyn

Hi Kylie, chemo should take only 3 hours but be prepared for 5. I had TC chemo treatment. I wore cold mitts for the first 1 1/2 hours to preserve my nails and fingers, so all I could do was watch TV, I meditated, I talked you could take an audiobook to listen to. You just have to take what happens be flexible and ask for help. Have you made contact with a McGrath Nurse, they are priceless. I know everyone's experience of chemo is different but from myself and others it gets a bit worst each time and any side effect can happen at anytime. All the best. Kim

Hi Kylie, welcome to the site. So sorry you have had to join us but I hope you find lots of support here.

My tumours were HER2+ as well as hormone positive. What this means is that the growth of the cancers on the two hormone positive tumours I had were driven by female hormones (oestrogen & progesterone), whereas the HER2+ tumour had a higher than normal level of a protein called HER2. So in both instances the breast cancer cells were over-expressing particular things; either hormones or the HER2 protein. 

I had a mastectomy in April 2012 followed by 6 rounds of chemo every 3 weeks, Herceptin (to treat the HER2+ tumour) every 3 weeks for 12 months and radiotherapy for 5 weeks. I finished active treatment in July 2013 and am now having Tamoxifen (daily tablet) to suppress my hormones for the next few years. All of these treatments have their own challenges but you can get through them, especially if you tell your oncologist and team about any issues you might have as they can usually come up with something to help.

Like Lyn said, the My Journey Kit is really useful just to give you an idea of what to expect and helped me to work out my questions before I saw any of the specialists along the way. I also had a portacath put in rather than trying to find a vein every 3 week for 12 months - my veins would not have coped with that!- definitely worth talking to your oncologist about.

Best wishes, this is a difficult time for you but like Rowdy says, we are here for you. Jane xx