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Paid survey
Hi! As you know, I talk highly of RC Horowitz and have been taking surveys with them since 2020. I am not employed by them. They are looking for participants for another survey. The requirements for this one are as follows: HR positive / HER2 negative NOT currently taking Hormonal/Estrogen therapy but has taken in the…
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Podcast: Elacestrant Seems Effective for HR-Resistant BC
Experimental Elacestrant Seems Effective for Breast Cancer Resistant to Other Types of Hormonal Therapy Dec 8, 2022 Dr. Virginia Kaklamani explains the latest results from the EMERALD trial comparing elacestrant to the standard of care. Doctors are looking for new treatment options for people diagnosed with metastatic…
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Podcast: What Pts Want Drs & Resrchrs to Know Abt Living W/ MBC
What Patients Want Doctors and Researchers to Know About Living With Metastatic Breast Cancer Dec 7, 2022 Metastatic breast cancer patient advocates Christine Hodgdon and Stephanie Walker explain why the viewpoints of people living with metastatic breast cancer need to be incorporated into research. A number of issues…
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Newbie Questions
Hello All! I am new here....some background. Family has history of BC. Can be traced back to my great grandmother. No genetic mutations found. Had BC first time 2006 (bilateral mastectomy with implants, salpingo oopherectomy, 3 rounds of taxol), recurrence 2013 (mastectomy redone, ACT(taxotere not taxol) DIEP Flap,…
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Question about new treatment for MBC
Recently diagnosed with MBC after removing two lymph nodes near liver which confirmed related to original lobular ILC in 2013. My oncologist has put me back on letrozole 2.5 and I will have blood work and pet scan on 12/6 to compare with pet scan in July. Then I may begin Ibrance, Verzinio or Kisquali. My question is does…
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CK4/6 comparisons
Of the three CK4/6 drugs which are Kisquali, Ibrance and Verzinio is there one that is the most effective when used with letrozole? Also is there one that has fewer side effects than the others. I am anticipating that my oncologist will put me on one of these and trying to gather info to discuss my options. Thanks for any…
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Weekly Zoom meet up for those of us still working
The Mods contacted me via private message to see what time and day would work best for those of us who are still working and finding it hard to participate in the current stage 4 weekly Zoom calls. They are trying very hard to get a meeting that will work for us. If you could please post which day(s) and time(s) would work…
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HER2+ MBC. Anyone 5 years out?
My name is Peoy. Singapore Chinese. Dx Oct 2022 with 8 sclerotic bone mets from T8 to pelvis and lymph nodes. My cancer cells have morphed: ER80%+ to 5%+. PR+ to -. Her2+ remained 3+. Just started Taxol+Herceptin+Perjeta. Xgeva mthly. My MO said median prognosis is 57mths. I also hope to discuss HER2+ MBC treatment lines.…
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Gemzar
is there anyone here on Gemzar? Had my first treatment on minday
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Fall 2022 New Covid Shot?
I was just curious if anyone had got it yet. My MO told me a couple of months ago to go ahead and get another booster but by that point, it made sense to wait until the new Covid shots came out and hopefully get better protection against the new strains. However, I am not sure from what I am reading if the Covid vaccines…
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DVT’s
I wasn’t sure which thread to post this on, and I didn’t see one specific to the topic. Have any of you had DVT’s? I’m freaking out somewhat. On Wednesday morning, I noticed my left leg was swollen when I put pants on and they were tight on my left calf. It was swollen and felt tight, but no pain, discoloration, etc. I did…
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Medicare questions
This is pertaining to Medicare in the U.S.---- I will be eligible to start Medicare in January 2021--- 2 years after being approved for Social Security Disability. I do not know anything about Medicare as I am not close to regular Medicare age (I am 50 years old). I want to do some research now in preparation for applying…
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No treatment and no progression
wanted to let everybody know- I stopped conventional treatment( was on enhertu at the time) in February. Still had lymph nodes that were lighting up on PET , original lesions in lungs seemed to be inactive and fibrotic. Scan at the end of May shown no change. Obviously everybody's situation is different- mine was an…
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Paid survey by phone/computer
Hi! For those who don't know me, my name is Kris or KBL on the forum. I've posted before about surveys I've done with RC Horowitz. They are a research company who performs surveys. Aside from the other post I placed, they're also looking for up to 30 participants to have a phone/computer survey. This one will pay $175. It…
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Breast cancer mets to lungs but now called mucinous carcinoma
I am a 62 year old female. DOB 4-13-1960. I was treated in 2012-2013 for Stage IIB Breast Cancer EST and PRO positive cancer. Double Mastectomy DIEP at Westchester Medical Center in NY. Had 6 rounds of chemo, then after two surgeries, had radiation on R breast with an HMRT machine to limit exposure of my lung. Oct 11,…
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New metastatic diagnosis
I just received my path report after 4 months of testing for a suspicious lymph node in portahepatic area near liver Results: porta hepatic lymph node positive for metastatic carcinoma with apocrine features. Tumor cells positive for GATA3 and CK7, negative for PAX8, GCDFP and mammoglobin. Although breast origin is favored…
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Stage 4 - MBC long term survivor (3+ years)
Hi, I was recently diagnosed with stage 4 MBC. A friend of my friend has been living with MBC since 2012 (she’s been on clinical trial since 2012). This kind of story gives us hope, I would love to hear from anybody that’s been living with MBC for 3+ years. Please share your story with us
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Paid survey in New York City - please see post for info
Hi! For those who don't know me, my name is Kris or KBL on the forum. I've posted before about surveys I've done with RC Horowitz. They are a research company who performs surveys. Right now they are looking for Hispanic and African American breast cancer patients who either live in New York or New Jersey and who could…
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Lines of Endocrine Therapy
I am very interested in the details of endocrine treatment experienced by other members with an ER+/HER2- diagnosis like mine but have been frustrated by trying to make sense of the info that appears beneath an individual's post. I am particularly interested in the chronological order of each type of treatment and whether…
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New zoom meetup Tuesdays, 5:30 PM PT (8:30 PM ET)
NEW recurring zoom meetup for people with metastatic breast cancer Tuesdays, 5:30 PM PT (8:30 PM ET) Register Here and looking forward to seeing you.
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TAXOL- Ive been on for 10 months, has anyone been on longer?
Hi, My doc thinks since I am stable, and I should leave Taxol (2 weeks on one week off) and go on something else when I stop being stable (probably Enhertu) since Neuropathy will only get worse on Taxol. I'm afraid to go off of Taxol since it has put me into "stable". Markers are going up slightly, every 3 weeks. How long…
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Bouncing from hope to despair. Ugh
Is it normal to have really hopeful days and the very next to just feel despair? I would love to hear those amazing stories that are out there with long life and stage 4. I am Her2 positive Mets to liver and.chest nodes. My anxiety could be up because this month is my first pet scan since completing thp in July. So, once…
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Pleurx pain
hi I just had a Pleurx installed yesterday and I have pain outside the tube pain. Next to the tube, my rib and insides are hurting. It’s like I have something in there. It really hurts. Is thisnnormal
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Tumor markers - how long to see a change?
Hi all, there have been a lot of posts about tumor markers but I didn't see anything specific to my question. I've been on IV chemo for six weeks (four weeks of chemo, two off) and just had tumor markers drawn because I'm having pain in my rib cage where I have a met or two. Unfortunately I never got baseline tumor…
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Prolonged healing from a wrist fracture.
I fell off my bike five weeks ago; what was diagnosed as a simple wrist fracture has turned into constant pain and swelling. Anyone here has any experience with the side effects of Ibrance or Letrozole and healing complications from a fracture?
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De novo questions
De novo Her2 + ladies, 1. How long were you on Herceptin and perjeta before ( if) you had progression? 2. If no progression, how long have you been Ned or stable? 3. Who all has gone off treatment? I know there’s a HUGE Denovo thread, but I get lost in there. Thank you sisters. I am grateful for the support.
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Leaky eyes anyone ?
still have eyes leaky . Feel sick all the time because of this . Help
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Intramedullary metastatic disease?
Hi, I need some support. I was just diagnosed in October and I thought I had all the mets - brain/bones/liver/lungs. Then I was diagnosed with leptomeningeal disease one month ago. (Did whole brain radiation and am now on Xeloda/Tuksya for that.) And now, I just got MRI results that say this: "New 3 mm nodule of…
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Working full time to keep health insurance
I am having trouble continuing to work full time and wonder if anyone else is dealing with the same issue. How do you deal with needing to continue to work, being basically stuck in a job because you have to keep the health insurance? Have you found a way to quit working without being financially destroyed? Disability…
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Aquaintance celebrates 25 years since advanced cancer diagnosis!
Hi everyone. I just have to shout it out because it gives me such hope. She is such a gracious, generous and caring person.