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Increasing CA 27-29 markers
Hi everyone, I am sure this has been asked before but I am concerned and not sure what to do. My CA-27-29 markers have been slowly increasing over the past few months. They were at 14, then went to 21, then to 29. I know they are still in the normal range but they are going up. I had asked my MO about this and were not…
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A cure happened for a hormone positive Her2 negative stage 4 patient in a trial!
I can't believe this isn't all over the news. I know it's early and few more years are going to pass before we hear about more of these but we finally had a cure for a hormone positive stage 4 patient in a trial. It occurred in the Elaine -1 trial!!
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Everolimus
Has anyone been on everolimus? Doctor might switch to this from verzenio.
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Treating Faslodex-related acne
The newest insult to injury, my face looks like a sullen 16 year old. Has anyone dealt with acne following your Faslodex injection?
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Can lumpectomy scar break open?
I had DCIS in 2013 and had lumpectomy and 30 rads. In 2001 dx stage 4mets to liver. 2 years treatment and liver Mets have shrunk but my breast has changed and Pet showed active increase in that breast nodule and the scar has stretched almost into nipple. Is there a chance it can “bust” open? I see surgeon next week but I…
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Ibrance or Kisquali? Can you share your experience
I am on Ibrance and had an allergic reaction. My Onc says if I want to go on something stronger with more impact I should consider Kisquali. I am wondering if anyone has experience with both or either? Seems Kisquali has a longer span of time it works, but maybe greater side effects? He said once I switch I can not go back…
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Anyone NOT get nausea with Enhertu?
I am ready for my fifth treatment of Enhertu. My onc does a half hour anti nausea IV drip before Enhertu. My body's reaction is severe constipation. So for the 4th treatment I requested a different anti-nausea medicine. Guess what my side effect was? Severe diarrhea. Before I go back to the first anti nausea iv drip, is…
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Tested for Illegal Drugs
At our last office visit my MO gave me a print out of the previous week's labs. I didn't notice until I got home, but in addition to the usual labs, they tested my blood for cocaine, methamphetamine, fentanyl and others, mostly schedule II drugs. Could this be something to do with Medicare regulations?
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Experience with Verzenio???
Hello, I am new here, I was recently diagnosed with Stage 4 breast cancer. all at once, no previous diagnosis, it was missed in previous mammograms. IN some ways i am so lucky because i didn't have to go through the mastectomy (it would have limited my ability to do my job for months, i would have lost my job for sure) or…
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Weight gain on treatment
I am currently on letrozole, zoladex, and verzinio with stage 4 bone mets with a hip replacement, kyphoplasty and spinal injury. It is hard to be active because of pain but I try to work out 3 days a week...I have gained 20 lbs in 6 months and am only eating 1500 calories a day. Looking for advice- I am 5"2 and never been…
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Increase In Tumor Markers but Pet/Scans show stable
The doctor just called and said that since my markers have increased they want another scan in 3 months instead of 6 months. She told me that it was just a precaution since the scan has been stable and the markers increased, they just wanted to triple-check that the meds are working. Diagnosis in 11/22, two recent scans…
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Trust your gut re: Pneumonitis
All, This is a warning to all of you who are having symptoms of pneumonitis. In the past two years, I have had severe adverse reactions to Ibrance and Piqray. The Piqray episode sent me to the ER and the hospital for five days. This was in late March. My oncologist (former) gave me this drug when I had progression on…
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Ibrance for early-stage breast cancer?
To be clear, I am not stage 4. I am currently on Tamoxifen and Verzenio after a stage 2b diagnosis, surgery, chemo, and radiation. A recent CT scan indicated 15-20 lung nodules, largest 1.5cm, that were "suspicious for metastasis" per radiologist. Oncologist is concerned with the risks of trying to biopsy, so I will have a…
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Physician left
I received a call from my oncology department yesterday that my oncologist has left for medical reasons and won't be returning. I will be seeing a PA on Thursday. He is the only oncologist at the facility that sees breast cancer patients that I trust. One I had issues with back in 2015. The other one I learned when…
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Should I use Whole body bone scan or MRI to detect bone irregularities or bone Cancer?
Hi everyone, Should I use whole body bone scan or MRI of both Lumber Spine and pelvis to detect bone irregularities or bone cancer? Please comment on pros and cons. Thank you.
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FGFR1 amplification
Hi everyone, I have been looking at the results of my Foundation One testing and saw that I had the FGFR 1 amplification. I did some research into this and saw that it can cause resistance to endocrine therapy and cdk inhibitors. I am currently on Kisqali and Anastrazole (for about 4 cycles). I was wondering if anyone else…
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Liver surgery
Hi everybody Did anybody with liver met did surgery? If yes, in what cases is suggested and when not? Please tell md about your case!
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Third time unlucky Stage 4
I had my first diagnosis and treatment for breast cancer in 1994 when I was living in the US. I had a lumpectomy, chemo and radiation. I was cured! and we never looked back. In 2017 my mammogram showed a reoccurrence in the same sight. By this time I had moved permanently to the UK. I had been widowed and still grieving…
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Really Scared--Bilateral Pleural Effusions
I am coming on year 3 since my diagnosis, and I have been feeling pressure and discomfort (primarily at night) on the ribs under my breast--yes, cancer side. It has been a few weeks. I had an X-Ray done and it showed bilateral pleural effusions. Of course, I googled it and now I am freaked out. Is this a clear sign that…
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MRI results
Hi, I recently had an MRI for back pain. Results are as attached, but they’re now recommending a Nuclear Bone whole body scan to see if the new lesion is MBC that’s spread or something else. I will have that soon. In the mean time, I’m not sure if I should be concerned or not 🤔 please let me know if this isn’t the right…
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Bone Pain from Mets or AI?
I am recovering from my third breast cancer dx and have been getting numbness and pain in my ribs, legs and hips. It gets worse at night when I lay down. During the day it doesn't bother me too much or stop me from going about my normal daily activities. I just had my normal bloodwork which was ordered by my cardiologist.…
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ASCITES
Hello all. I am actually writing on behalf of my best friend. She has metastatics breast cancer, Im sure hers is lobular. She has been living with it for 10 years. 5 years ago it spread to her peritoneal lining. Estrogen blockers & a chemo type pill kept it at bay, but it has become resistant to them. She has had one type…
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Two options left - what does this mean?
Hi all, Posting on behalf of a dear dear friend of mine who is living with MBC. She was first diagnosed in 2015 with mets to liver and bone - she is also now one of the unlucky 1% to have a singular met in her mandible. It looks like she will need radiation (which she is terrified to have near her face) and to change her…
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Any experience with Palliative Care?
My MO added a recommendation for Palliative Care in my chart after our last visit. I'm unclear on what it covers and how it might benefit me or my family. I have done some reading and watched a few videos and I'm not totally impressed; seems very administrative and leaning into the social workers arena of education and…
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Can I get pregnant after a stage 4 bone mets diagnosis?
We only have 1 beautiful little girl and I was pregnant with #2 and lost it during my cancer journey. That baby is greatly missed and we would love to have another baby of our own to love. I am 36 and we have been married 5 years, 3 before diagnosis. I have extensive bone mets. Has anyone ever had,heard of,or know anything…
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Backlash Coming Against Instant Disclosure of Health Records
In Politico today, there's an article about doctors lobbying the HHS against immediate release of test results & other electronic data in patient portals, as has been required for more than a year now. https://www.politico.com/news/2023/01/09/doctors-test-results-patients-00076843 I realize it may be difficult for some…
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FDA Approves Orserdu for ER+ MBC (oral SERD)
FDA Approves Orserdu for Metastatic, Estrogen Receptor-Positive Breast Cancer Jan 27, 2023 The FDA has approved Orserdu, a new oral medicine to treat metastatic, estrogen receptor-positive, HER2-negative breast cancer with an ESR1 mutation. Read more....
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Paid survey
Hi! As many know, I have done surveys for RC Horowitz. They are a great group. They are seeking participants for a 90-minute survey who are on their second line or more who are Her2 negative. They are also seeking triple negative as well. If you’re interested, please private message me. This is for those in the United…
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Is a chest wall recurrence inevitably stage 4?
My MO threw me for a loop yesterday. In May I had a 0.8cm recurrence 10 years after DCIS. Imaging showed no spread and my surgeon got wide excision in the lumpectomy. I finished whole-breast rads a couple of weeks ago, started Lupron in July, and will start letrazole shortly. In yesterday's appointment, I asked what I…
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Switching from Ibrance to Verzenio - Tips?
Daughter/caregiver here to a mom (70yo) with MBC. I'd love to know if anyone has experience switching from Ibrance directly to Verzenio. Context: My mom has been on Ibrance for 14 months, with an excellent response. She quickly had to reduce her dose to 75mg due to immediate neutropenia, but was able to get a handle on…