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Checking in

Just wanted to see how everyone is doing?

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I'm on my week off right now. I was supposeto get my Faslodex and xgeva shots Friday. Couldn't go so I got my faslodex yesterday. My jaws have been hurting so the nurse wasn't comfortable giving me the xgeva shot. Skipped it. Feeling like a truck ran over me. I'll be starting cycle 5 Saturday. Still don't know if it's working.

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Why don’t you know if it’s working. Haven’t they done scans after 3 months

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My Oncologist feels scans are unreliable. The problem is I can't count on my tumer markers either. I was only at 15 when they found all the cancer. I'm not sure if he just wants people to enjoy their life not knowing. It could be that in my case. I have a dnr order. He also knows I will not do a port or pick line. We're all different and quality of life is very important to me. I'm at peace through Jesus snd know where I'm going.

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Have you had any second opinions?

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Karen, I assume you are asking me this question. My Oncologist will do a scan in a heartbeat if I want him to. Right now he's just following the numbers. I discussed thoroughly how I felt about end of life care. I was originally diagnosed in 2013. Went through chemo and 12 surgeries. I will not live like that again. I love my family and want to be with them but the two years I fought this was horrible. I don't want to live like that. Also my ibrance starting in January will cost me 2,561.00. Have no idea how we're going to afford that.

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Did you talk to Pfizer to see if they have any discount cards for ibrance? They used to help

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Yes I did. They help if you have a copay which is what I used to pay. I am now stuck on a medicare prescription plan that has 20% coinsurance. Not copay. We worked all our lives and saved money. My husband does not get social security and because he has a pension and we have a 401k, we'e rich. He's paying 1100.00 a month for his health insurance and still pays cash gor everything because deductible is so high. I'm on medicare and in ohio it is illegal for me to have a supplemental or secondary insurance. So I pay 20% of everything. I suppose they want us to spend everything we have and go on medicaid.

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That makes me sad to hear that! Do you live near the border of a kinder state?

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I know in pa I could purchase a supplemental but I'm still stuck with the medicsre prescription plans. I'very worked helping my mom with hers. They are horrible. She has social security and a 300.00 pension. She gets no help. These elderly paid into this all their lives and have to deal with so much paperwork. Kind of like having cancer. I think this is a no winner in my case.

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Have not seen your post in awhile. Just wondering how u r doing? Sending good vibes!

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I’m good. Finally went back to work just a couple of days a week. Pain is gone. Scan was great last week and blood work is fine. How are you ?

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Doing ok. Also going back to work part time. Last blood work was fine! One day at a time!!!! Always anxious with a new pain or ache but that’s the new normal! Keeping busy always helps. Glad u r doing well.

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My week off .👍

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Enjoy

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Thanks. How are you doing marianne88?

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I’m good started 3rd round of ibrance. I have bone Mets but pain is gone. Having scans in January hoping they are good. My only complaint is being tired. Thanks for asking

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Marianne, this is fantastic news!!! Keep up the good work 💕. I feel like the fatigue does get better over time except for that darned off week lol

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Glad to hear your doing well. And you have no more pain. Praying for you.😊

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Hey, I am doing pretty good. I notice that I do tend to get emotional some toward the end of the ibrance cycle. I seem to do good when I keep myself busy. There is more to me than chemo, treatments, etc. I haven't worked since the end of July, due to back surgery. I feel good enough to want to return to work. I have to look for another job, the job I had at times requires that I lift heavy things, which I can no longer do. So, I am looking for work. I signed up for an employment agency, they are looking for me. I am looking for entry level type work. As long as I continue to do self-care, I think I will do ok. If I get sick, then I'll not work but for now, I can work.

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I stopped taking Letrozole for about a week and a half and most all of my side effects went away 🎉. I started taking Exemestane two days ago and so far so good.

Unfortunately, I am pretty sure that I am dealing with Osteonecrosis in my lower jaw 😢. My recurrence April 2016 was found in my lower left mandible. They radiated it really good but for the past 2-3 weeks I have been having pain and what looks like a non healing sores on my lower gums and it looks like my gum is receding rapidly by one of my lower front teeth. I went to my Dentist who was clueless but he did take x-rays and gave me the same views from 2011, 2014, 2016 and current. I see my oncologist this Thursday to talk about the new drug regimen and I plan to share with him my mouth concerns. This is a side effect of Zometa treatments that occurs in about 10% of cancer patients that have already compromised jaw issues. Praying that I can take a break from the Zometa and some antibiotics will get these sores healing.

Good news is that the hubby and I are headed to our 26 year old daughters house in Southern California for the holidays. Leave the 20th and back on the 4th.

Sorry to be a downer-not my intent 😊

I can deal with what I have going on. This is nothing compared to some others 🙏

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We're here to talk about these things. You are not being a downer. I pray for all of us.

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Agreed Selmac. It’s wonderful to celebrate the good news, but I think most important to be supportive and a good listener when things get tough. It’s hard to live with so much uncertainty ,symptoms med regimes continuous md visits financial issues isolation. I sometimes feel like a visitor in the land of the worried well 😱 it’s a continuous effort to strike a balance and not get sucked into making cancer your identity. In previous posts I mention how it took 3 years for me not to cry every day multiple times a day. Bless all of us in this path. It takes a lot of soul searching and support to accept it and keep moving. Enjoy the visit with your daughter!

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Thank you for that 😍. I really enjoy this group 👍

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Love it when I hear your call for checking in! Starting on 3rd week off Ibrance, first was my normal week off, then second because my WBCs were too few to start, now I have a cold so we are waiting till that passes. Even though the delay of starting again is due to things that are not in my favor, the delay is like a vacation! From reading others experiences on Facebook, it is not that uncommon and doesnt appear to affect outcome. Meanwhile my body gets a rest from the constant infusion. I hope all is well with everyone else, and will read the replies to see. Sending love and best of wishes out there to everyone! Michelle

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Great attitude!

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I was 4th stage triple positive breast cancer, to first stage now, pretty sure it is gone out of my body,only a trace 2 months ago. Did not have to have the full treatment .

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I'm new to this site and I am happy to read all the comments. I am in round 5 of IBrance & Letrozole, to treat stage IV metastatic breast cancer of the liver. So far it is beneficial and I am still very active and live a full life. In the back of my mind and sometimes the front, I wonder when will this medicine stop working and what will happen. But today its working and all is well.

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I finished my 20 radiation treatments to the mets in my stomach. Have to wait until January for scans to see if it worked. Will also check whole body status on Kadcyla. Had a clean brain scan last week. Fatigue and some nausea/problems with certain foods from the radiation. Hands still hurt a lot from taxol I took in the summer. Really hope it isn't permanent.

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I'm doing well and still getting an infusion of Herceptin every three weeks. At the end of this month, I'll be meeting with a cardiologist who specializes in oncology because I often feel very out of breath, and Herceptin can cause congestive heart failure. I've been going to a cardiologist regularly, but the new doctor specializes in oncology drugs that are toxic to the heart. Plus, when I had stage II breast cancer I had Adriamycin, which can also cause heart toxicity several years after taking it.

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