New to group: Hello. My name is Amy... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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AngelicAmy profile image
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Hello. My name is Amy. I am 45 yrs old. I was diagnosed November 2013 with stage 4 breast cancer that has metastasized to my bones all over my body. I can't remember what it was exactly but it is hormone driven. So I had a hysterectomy to stop the estrogen. I had tried a couple different medications but am currently on Ibrance and Letrazole. They have stopped my cancer growth for 4 yrs now. I am very thankful to be here watching my son grow up. My husband has Early Onset Parkinson's Disease. We were separated at the time of my diagnosis but got back together shortly after.

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14 Replies
mariootsi profile image
mariootsi

Welcome! You found a wonderful site. We are all here for each other! Love, Marianne

nstonerocks profile image
nstonerocks

AngelicAmy,

Geeze, so sorry you have so much to deal with. Seems like everyone has a back story in addition to mbc. You will find great support here, and we know what you are going thru with this miserable disease because we live it too. Glad you found us.

Teddielottie profile image
Teddielottie

Hello! Glad to see another long -term Ibrance / Letrozole lady ( I’m bone mets too) and hope it continues for you . Do you mind me asking what dosage(s) have you been on , have you had any breaks off it and does your onc. say how long they will keep you on this combo ? Sorry about your husband being unwell but happy to hear you are back together raising your son. And welcome to this site x

Hello Amy!

welcome to the group. Thanks for sharing your story. It sounds as if your treatment had been successful for a number of years, which I find really encouraging. I hope to be as successful in my treatment plan as you are.

Take care,

Sophie ❤

Dianne417 profile image
Dianne417

Hi, AngelicAmy! Welcome to our site! I am so sorry about everything you're going through, but am encouraged to see that you've gotten such good long-term results from your Ibrance/Letrozole combination. I, too, have extensive bone mets in my spine and some in my pelvis, and have been on the same regimen as you for almost two years now. My last CT-PET scan earlier this month was ambiguous, so we'll see what another scan in three months brings.

I hope you will have continued success with regimen! This is a wonderful group and I'm sure you will find much support here.

Bobbie86 profile image
Bobbie86

It’s great to hear the drugs combo is working for you. Mum is on the same and she also has extensive bone mets. X

PJBinMI profile image
PJBinMI

It's very promising that these meds have worked so well and so long for you! Those of us with a hormone receptor positive cancer and bone mets only often do well for a long time. I've had bone mets from the get go and am nearing my 15 year anniversary of diagnosis. One thing both you and your husband might do is to go to a major medical center to see very specialized doctors, at least for second opinion, if you haven't done that already. The top tier for bc treatment are the "Comprehensive Cancer Centers" and those are listed on the website of the National Cancer Institute. They have oncologists who specialize in bc and who both see patients and do research. Alot/most of them are affiliated with medical schools and should have specialized neurologists on campus, too. I got an appt within ten days of my local onc calling for an appt for me after initial staging, and though I didn't think it was necessary, it was hugely relieving for my husband and grown daughter and I am glad I went along with that plan. I can go back there as needed. I can only imagine how stressful it is for you and your husband for each of you to be dealing with such major health issues! Do take good care of yourself! Too easy for us women to focus on others and not get the rest and care we really need.

Kimr2081 profile image
Kimr2081

Welcome. I know you will find a lot of amazing women and inspiration here. Best of luck to you.

lynnhbtb profile image
lynnhbtb

Welcome Amy!

Juliandrea profile image
Juliandrea

Welcome Amy. I am on the same combo since march 2018. Great ladies here, I wouldn’t be able to function without connecting here daily. I am happy to hear that you are doing so well and I pray that the rest of us who just started do as well as you and other great ladies here. Looking forward to hearing from you again.

PLASEM profile image
PLASEM

Welcome to our group and It is great that those medications are working for this length of time, I took Ibrance and Letrozole for one year and I switched to Faslodex instead Letrozole I was diagnosed MBC on August 2017.

God bless you and take care

13plus profile image
13plus

Hi Amy, welcome to this wonderful group! I've only been on here since about June when I found it by chance. I'm so glad I did!!

This is a great group of women who have been a great collective source of information, positive encouragement and inspiration.

I was first dx stage 1 in 2005, new lump 2008, and bone/liver mets this year.

It has been invaluable to me to come here and be able to see what are the typical side effects (vs reading the pharma leaflet), dosage changes and success stories, etc, and to also learn about other treatments and experiences at specific hospitals.

Wishing you the best for the journey ahead and that you get the comfort you need from this group.

I am also very sorry to hear about your husband's health issues but I think it's great for all of you that you resolved to come back together and work together through your challenges. I hope your families provide support too?

For your husband, I strongly encourage him to seek out a place, even if it's a distance, that provides "Dance for Parkinson's" . It does not matter if he has two left feet, or if he does not like to "dance". There is a strong proof that this program, and he is a great candidate being early onset, helps maintain ability to walk and sometimes helps IMPROVE and regain control. PM me if you want help finding one!

kit5 profile image
kit5

welcome to the club no one wants to belong to...but we are all warriors and we have lots and lots of options:) good luck on your journey and post often - it helps all of us!

RLN-overcomer profile image
RLN-overcomer

Sister/Warrior, and yesssssssss over-comer: You do have so much to be thankful for. Everyday we are able bodied able minded, with no pain, or challenge is a blessing. I do not take it for granted, and every now and then I have to remind myself of how blessed I truly am. God's continued blessings my sister/warrior/over-comer, and all of our sisters/warriors fighting for more days, weeks, months, and years to share with our loved ones. XoXoXo

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