Good News

Today I found out that my IBC has not metastasized to anywhere else (got many, many tests, CT scans and X-rays done because I applied for the Kristine study). I was approved for the study and got the arm of the study that has perjeta and perception together. SO HAPPY right now! Tomorrow morning I go in for my first treatment. I am likely to have less side effects than I would with chemo and possibly no hair loss. I didn't care about my looks, but getting this arm of the study means I won't need expensive meds to get my white blood cells up, and means I'm more likely to be able to continue working (which is great as I own my own company and have no sick leave). I feel so blessed.

I am now two weeks out or so from my first treatment.

I am on the arm of the Kristine study that gets Kadcyla plus Perjeta treatment. The other side (that I'm not on) gets Chemo with perception plus Perjeta.

The first med (perjeta) didn't both me at all. The Kadcyla made me vomit and shake, but it was okay after a few hours. I had a fever and shakes for the whole evening and slept almost a whole day, then I felt absolutely fine!

Since then I've had a few side effects, but nothing horrible. Bloody noses (and my nose feels bad, but I can't blow it as it will bleed), sometimes I have weak legs, a few headaches (but not horrible), and nausea (but only badly painful for one day, otherwise easy to manage). I had diarrhea a couple days, but again nothing I couldn't manage.

I am SO HAPPY to be on the treatment I am. I feel really good. I hope it is actually working. Every now and then I feel a great deal of pain in my lymph nodes or in my breast and I imagine that it is the medicine killing the cancer .

A few days ago I applied for a 30 hour a week job. I am currently self employed (photographer and owner of photography school) but I really want something stable with a health plan .

I have gone through the grieving stages of disbelief, anger, sadness & loss and am feeling very hopeful now. I'm a christian, and knowing that death is actually eternal life has really helped me. I also have a lot of people around me I know praying for me, and a lot of family support. Most days I don't feel like someone who has cancer... maybe just someone who's a little more tired or weak than usual, but it's not in my face every day.

I would like to thank all of you for being here for me when I first found out. This board is important. I just wish there was a place that there was more chatting going on and more people on it. This site is great, but there are not many of us with IBC it seems, and it feels really great to speak with others with the same diagnosis rather than people who quite frankly I'm jealous of... with stage 1 or 2 breast cancer.... seems like a piece of cake compared to this (though I know it isn't as I was devastated when I thought I was stage 1, and really sad when I thought I was stage 2 before I got my proper diagnosis of stage 3 IBC).

My biggest fear right now is lymphedema and life after cancer. I am hoping to have a life after without too many side effects, though I have really changed my perspective on life. If I never go skiing again or into a hot tub again I will still love my life and be thankful for it every day.