almost 14 years NED breast cancer and apparently it's back in my lungs

[Carol Ann]

Cathy,

I am so sorry you weren't able to get the Arimidex when you wanted it.

Praying you have a clear plan in place going forward on Friday.

Yes, each individual pathology makes so much difference.

Please know we are all rooting for you!!

Carol Ann

[Cathya]

I have had a meeting with my new oncologist. I really liked him and felt confident in him which is important. My tumour is now Her2-. I asked him why this was and he said that all tumours hold a variety of cells and the herceptin I took got rid of the her2+ cells. It is still ER/PR+. I haven't looked at the other pathology but am going to register for mychart online which will allow me to look at my entire file, including pathology, scans, comments etc. online at home. He believes there is definitely some weird mutation going on and is having both my ovarian tumour and this one genetically tested. I was so happy to hear this and it is free. I am not starting with chemo but rather a new drug called palbociclib (apparently very effective for hormone positive advanced cancers which are her2 negative) along with letrozole. This new drug palbociclib has only been available in Canada for two months and is $10,000 a month. He is arranging for it's payment so it will be free. I will not have to pay for the genetic testing or the drugs and am very happy with that. I am also seeing a geneticist at the hospital on the 27th who will be testing me so I seem to be covered all round. He thinks that given that my cancer didn't come back quickly I could respond very well to this new drug and will be on it as long as it works. He thinks eventually I will need maintenance chemo.

A couple of other things came up as well. My ca125 continues to raise and there remains fear that I might be having a recurrence of my ovarian cancer. He, along with a OBGYN oncologist will be monitoring this as he said that would require some creative treatment. Palbociclib is a pill. A side effect is that it stops the growth of your blood cells so is taken for 3 weeks every day then you take a week off so your blood can recover. Ovarian recurrences call for chemo apparently and another side effect of the drug is that it interferes with chemo causing it to not be effective. So we'll see. I do have confidence that my life is in good hands though. They are also concerned that the breast cancer might have spread to my bones and will be running a bone scan. I hope not. I am so grateful that I have had the backup of the her2support site as I have known so many women with these types of complications and am not as frightened as I might otherwise be.

As I find out more I will post here. He did tell me that I will never feel as good as I feel right now and that if I have a bucket list I should address it sooner rather than later. Even with this he was enthusiastic about my treatment and the possibility that I might extend the bell curve beyond the 5 year normal life expectancy. That was good to hear but I am starting to make holiday plans lol.

My best to you all

Cathy