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SHARE Metastatic Breast Cancer

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My story

Sbaker134 profile image
Sbaker134
โ€ข11 Replies

Hello everyone, I am new to this site and I felt like I was reading about myself for the most part. I started out in 2012 with breast cancer stage 2. Right now my brain isn't working very well but I wanted to introduce myself to all of you. I did the chemo and 40rounds of radiation. I though everything was good. I was given Tamoxifen but I was also taking Celexa which apparently didn't jive with one another so I was told to stop the Tamoxifen and was put on effexor. I started Ibrance September 2016,along with faslodex and Zomeda. I was having quite a bit of pain but on the pet cts every thing looked stable until this past Dec when I had another pet and my cancer spread. So I stopped the Ibrance did some radiation and now I'm on Xeloda. I take 3 500mg mornings and the same at night. I still do the zomeda but I will do the faslodex 1more time next Tues. So far I have been ok but all of a sudden I started having extreme pain in my buttocks and down both legs. My nurse told me it could be myalgia. Has anyone experienced anything like this? I'm not sure if it is a side effect or what. Anyway thanks to anyone reading my story and my prayers are with all of you with this disease. By the mine is stage 4 breast cancer metastatic to my bones and also a few masses in my lungs. I would love to hear from you warriors out there. Thank you and God bless ๐Ÿ™๐Ÿ™๐Ÿ™

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Sbaker134
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lweaver profile image
lweaver

I was stage 2b in 2009, did left mastectomy, chemo. Then did supplements instead of hormone therapy. This worked for 8 years when I started with back and neck pain almost a year ago. Now on 75 mg Ibrance, letrazole and zometa. Still have bone pain but able to work 30 hrs a week. So we are all here with similar stories. So glad we can have this forum. Hang in there!

LeAnn

Tap321 profile image
Tap321

Hi S. Thx for sharing your story. I was diagnosed Dec 2011. Never thought I would be stage 4. I am on ibrance for two years. I hope your new regimen works great for you!

Sbaker134 profile image
Sbaker134โ€ข in reply toTap321

Good morning Tap321, I never thought I would get my cancer back. I was angry at first but put it in God's hands. I stay miserable most of the time. The pain is so intense for me. Will keep you in my prayers

Moveit2012 profile image
Moveit2012

I am currently experiencing the same type of pain, which began this week. My mets are bone only, to T5, L10/11, and 9th rib. Just finished a week of radiation and have one more to go. Iโ€™m concerned that it could be a spinal compression fracture but am not having any issue with incontinence. Will be discussing with med onc on Wednesday. Good luck to you.

Sbaker134 profile image
Sbaker134โ€ข in reply toMoveit2012

Thank you move it 2012. I have been suffering from bone pain for quite a while now. I have a very bad back and I really need surgery but I refuse to so I guess I will suffer instead. When I received my diagnosis I was shocked. I don't know if I can continue on Xeloda but I will try. The Ibrance worked for a while but it kept dropping my wbc so I had to go off of it so many times. So we shall see about the Xeloda. I go Tues for my zomeda and hormone injections. Shouldn't they do an x-ray asap just to see if that is the case? I will say a prayer for you too. Good luck on your upcoming appointment with your oncologist ๐Ÿ™๐Ÿ™โค๏ธ

Moveit2012 profile image
Moveit2012

Iโ€™m not sure if the tests but I know that some type of investigation is needed. One of my daughters is an on oncology nurse practitioner. My instructions from her are โ€œif there is any numbness or incontinance โ€œ go directly to the ER. Fortunately I have had none of that. So we shall see. I have gotten to the point that each twinge is a possible lesion or complication or side effect. ๐Ÿค”. Another gift from cancer.

How are you feeling today?

Sbaker134 profile image
Sbaker134โ€ข in reply toMoveit2012

I go for my zomeda and faslodex today but I just woke up and can hardly walk. What a life ๐Ÿ˜ง

Hort09 profile image
Hort09

Hi I had stage 2 10 years ago and had a double mastectomy and have been on tamoxifin for ten years . I did develop pre cancerous cells on my uterus ( probably from tamoxifin) so I had a hysterectomy a few years later. The last few years there has been a spot on my lung that has been watched . This year it grew ( two other unknown spots) so the surgeon took it out. I am now awaiting to see a new oncologist as the one one I saw answered all of our questions with questions . I slso have fibromyalgia and for that I take liquid marijuana . It's the only thing that helps as I was prescribed lots of heavy duty painkillers that didn't work . I think this is a great bunch of supportive people !

Sbaker134 profile image
Sbaker134โ€ข in reply toHort09

I applied for the medical Marijuana and am waiting for my ID card. Praying that this will help me with the pain. God bless

Hort09 profile image
Hort09

I hope so as it helps with mine . Bless you as well

Tap321 profile image
Tap321

S. I pray that there is a good therapy for you. And the pain starts decreasing and the Mets start getting smaller. Many new treatments coming out.

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