Metastatic Breast Cancer Survivor

[Jeanettek1]

I am new to this group. Here it goes. I had a lumpectomy and then 3 weeks later had a right mastectomy with no lymph node involvement in 1994. At that time I did have reconstruction, which was painful. At that time I thought I will be good if it doesn't go into my left breast. It never has although there were a few scares. In February 2006 I had my reconstruction redone due to constriction of my prosthesis. At that time I was referred to my doctor because it was noted there was a spot on my right lung. Protocol said that the doctor should watch it for 1 year. A year past with no change. We are now in 2012. I went to the doctor because of a cough which I was sure was related to my GERD (Gastro Esphogeal Refux Disease) which I was given an additional pill a day but the doctor said let's do an x-ray of your chest just to be sure. Long story short I had metastic lung cancer. No chemo or radiation but had been put on anastrozole and scanned every year with the exception of my head. Jumping November 2015 I became dizzy thinking it would go away but in January 12, 2016, I was diagnosed with two brain tumors. It took me 2 1/2 months of dizziness, vomiting, loss of appetite, loosing 30 lbs, going to my doctor, several other doctors, and finally an ENT (Ear Nose Throat) doctor ordered a scan of my head. There it was 2 tumors were found one being the size of a tangerine and the other the size of a dime. Needless to say I had surgery in January 2016 followed by Gamma Knife Radiation because the surgeon couldn't get all the cancer in my cerebellum. I was cancer free for 7 months and the MRI showed a spot above my right eye. I will have another MRI December 22 to see if it is growing. I also have an appt for a second opinion of my lower region. I currently have stopped all cancer medicine because the insurance has declined ibrance. I have tried to get the ibrance free but was told we make to much money. Duh! That was for 2015 and I was working then. I haven't sent an appeal yet. Honestly, it is a lot of work. I have a lot of side effects from the brain surgery. Dizziness is one of them. I am trying Nortripiline for dizziness.

[Partia]

Wishing you all the best and I hope you can take Ibrance. Ive been taking it for awhile.

[Jeanettek1 in reply to Partia]

How long have you been taking ibrance and what medication are you taking it with? Where do you live? I mean what is the general area?

[Partia in reply to Jeanettek1]

I started taking Ibrance this past July 2016. I live in Michigan...between Ann Arbor and Detroit

[Jeanettek1 in reply to Partia]

Along way from Washington state. Do you have side effects from ibrance? Are you taking ibrance with any other medication? The doctor prescribed ibrance with letorozole.

[Tm7777]

I myself am taking ibrance 125 mg.

[Jeanettek1 in reply to Tm7777]

How long have you been taking ibrance and what medication are you taking it with? What area do you live in?

[Tm7777 in reply to Jeanettek1]

I've been on ibrance 4 months along with lezitrol. The ibrance they have lowered making me sick every month. I'm from Massachusetts..

[Partia in reply to Jeanettek1]

I was taking 125. Now on 100 with letrozole. Had to lower Ibrance because my nutrophils got too low

[Jeanettek1]

I am adding this after reading some comments...I was in stage 3 of Breast cancer in 1994. At this time I can't remember what the mass was in my lung. I was told because the cancer went to my brain it was considered stage 4. I was tested in 2012 for BRCA 1 & 2, and was negative so I expected my kids were safe from breast cancer. My eldest daughter was diagnosed with breast cancer in August of 2016 which is HER positive and she had gene testing to include BRACA 1 & 2, all of 28 genes which she tested negative for. My eldest sisters were dx'd at 49 and 51. Myself at 34 and my daughter at 39. I am 56 now. We have lived many years so that is good.

[Kats3]

You are very brave! I wish you much continued courage and strength as you deal with this situation. I also had the genetic tests done as my mother and sister both had Breast cancer but it had never metastisized like mine did. The Braca tests came out negative for any type of mutated gene in our family. So this disease could just be familial or caused by something other than genes. I find it amazing that you had your first bout of BC in 1994! To think that you're dealing with it again is astonishing. Stay positive. You made it through way back then and you'll do it again!

Your story is also a reminder to all of us to NOT doubt our feelings that something is not right in our bodies. I'm glad the ENT took you seriously. We need to be persistent in our care. Wishing you better days ahead and especially in the New Year! Keep in touch with updates. Kats3

[Meadesmith]

First, much love to you. This is hard. When someone says I wish I could help, let them. Second, call Pfizer or get a helper to make the call. Pfizer wants you to have this drug. I expressed concern about losing my coverage if ACA were repealed. The representative from Pfizer said YOU WILL GET YOUR IBRANCE, POSSIBLY FOR FREE. call them. They are very clear that no one has 12,0000 dollars a month. But if no one uses the drug, they won't have a body of data showing how it works. And they have a new ibrance in development.....PM me if you need support.