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Fluctuating Alkaline Phosphatase
My ALP is within normal limits, 105 (40-156), but it fluctuates up and down in the normal range consistently. Last month it was 70 and the month before that it was 100. Is this normal? Every time anything heads in the wrong direction I freak out. You’d think I’d be used to this crap by now. Jackie
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Switching between chemo and hormonals - is this possible?
Hi everyone, would greatly appreciate some advice and thank you for listening and all your expertise. I visit every day, but don’t really post. I’m currently on abraxane, (about to start my 5th cycle)due to go a couple more cycles. I’m wondering if it is possible to be put back on hormonals after this finishes? I have only…
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Both HER2+ and HER2-
Hello everyone! I just received news that I have been taken off my clinical trial that was due to start soon, as the trial lab tested the segment of my tumor as HER2-, whereas my cancer center lab tested it as HER2+. Both labs designated it ER/PR+ still. I am really confused and it's difficult to find information on having…
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Ibrance/Exemestane
I just started Ibrance/Exemestane (only the first month) when is it typical to see results? Is it after 3 months? Thank you, keeping fingers crossed here.
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New De Novo diagnosis
I was just diagnosed yesterday with de novo MBC. The PET scan showed "1. large hypermetabolic left breast mass, consistent with invasive ductal carcinoma. Regional nodal metastatic disease to the left axilla. 2. Numerous lyctic osseous metastases. Many of these are small, but a lesion in the L2 vertebral body show…
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Stage IV MBC with Type 2 Diabetes
I was diagnosed May 21, 2021 with metastatic breast cancer that has spread to my chest. In addition, I have type 2 diabetes. I've noticed that since starting iBrance and Letrozole my blood sugars are running high. I'm curious if anyone else in the same situation has experienced this as well. I'm also in a clinical trial,…
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You've got to see this AGT video, Stage iv Sisters!
When she stood on stage, beautiful and skinny, with uber-short hair, I knew she was one of us. Her original song "It's Ok" is amazing, and so is her voice. Be sure you watch the interview part, too. When someone asked her, 'How are you now?" I wondered how in the world she would answer. She matter-of-factly told them, "I…
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xeloda
OK I've searched for aa topic xeloda and got nothing- pretty sure there is and waiting on that new website!!! So far, doing OK. BUT, getting that first dose in is HARD! I DO NOT awake before 8 am and am not running to get something to eat. So 12 hours apart is not happening. What do people do?
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Blood biopsy - nothing detected ?
hi! Has anyone done the liquid (blood) biopsies through foundation one and had it come back with nothing? My body and bones show NED but 3 wks ago two BrainMets showed up. I was just wondering if that's happened to anyone else? Thanks!
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Tomivosertib trial
Hi all! I was looking for some information about Tomivosertib and there doesn't seem to be any here on BCO, so I will start a new thread, hopefully others will join me. I will be starting a trial of this drug in a few weeks, it is given with Paclitaxol. here is a link to the US trial information Tomivosertib trial
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Lymph nodes and PET
had a PET scan - anybody has any idea why a couple of lymph nodes can light up ( SUV 3-4) while the lessons themselves appear to be inactive/possibly scars?
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Managing risk while being immunocompromised
My oncologist told me that I'm considered immunocompromised, which wasn't surprising. But I asked for clarification and she didn't have much to offer, she only said I was more prone to infection and that it was hard to quantify the risk. So....now what? I'm not sure how to manage this unknown level of risk. I don't have…
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Genomic testing for stage IV
This is a thread for discussing next generation sequencing and molecular profiling of metastatic tumors through tests such as Foundation One, Caris etc. We can talk about the tests themselves as well as what the results mean and how they might affect treatment options.
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Costochondritis, Nerve Pain?
I am currently on Abraxane. For the past couple of months I have a few spots on/near my rib cage that is tender/painful to touch. There are two on my right side and one on my left. It seems to become the most prevalent after my Abraxane treatment. It feels like it’s a movable nerve or something to me. I have felt something…
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High ferritin levels and anemic
I have been anemic (of inflammation not iron) My ferritin levels are off the chart (5100, normal is 200) My Onco wants to get a PET scan asap because he's pretty sure of progression. My question is, when they took my blood work it was 1 week after radiation. Radiation definitely causes inflammation. Can someone give me…
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Requesting work accommodations?
Since my MBC diagnosis, I've been fortunate to be able to work from home (only upside to the pandemic). My employer now wants us to start returning to the office, and I am struggling with some serious fatigue from my meds. I want to talk with my MO about possible work accommodations, as in only working virtually, but I'm…
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Telling people??
Just diagnosed with Mets to spine after being 4 years out from Stage 1. Blindsided and devastated to say the least. Just told my kids tonight (husband and immediate family also know) and it went ok, but wondering about work and other friends. I’ve been lurking for a while and I know you ladies are a wealth of information.…
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Who's on Kadcyla/TDM1?
I've found some older threads about Kadcyla/TDM1, but it's hard to tell who's still on the drug and how they're doing. Can we start a new thread for those of us who are currently on it? I'll be starting Kadcyla Monday after failing PH. PHT worked great until I dropped the Taxotere; then, I had progression when I was just…
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If Ibrance failed for you, what was next in line?
Hi everyone. Looks like I'll be moving on from Ibrance. A PET scan on 3/18 will confirm this but it looks to be the case. My question is that if Ibrance failed for you, what drug or drugs were next and where was your progression? Thanks.
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scanxiety and health portals
So a few issues- this has been a tough week. I feel great - no bone pain, better breathing and normal labs. I saw my ophthalmologist and my right eye mets have improved or resolved- GREAT news. Went for scans on Tuesday and had results sent to me through my patient portal today!!! The portal sent me an email and I looked -…
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MD Anderson
For those of you who have gone to MD Anderson for consultation - is there a difference between the main campus and the other MD Anderson sites in the surrounding area? I can’t get into the main campus until March but can get into the other sites earlier. Any recommendations on oncologists there? I want to do this right the…
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bone scan
Hello ladies! I just had my third bone scan. Had significant increase in mets at the last scan 3 months ago which was felt to be healing. This scan is stable without further metastasis. ? with oligometastaic bone disease will the bone scan ever be improved or is stable the best news I’ll get?
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In Memoriam To a Longtime Member
I learned on another thread that one of our longtime members, Fitztwins, passed away on October 7. She lived with mbc for 17 years. But her death was caused by a fungal infection. There is a thread about her in the “stage iv forum open to all to contribute”, I only happened to find out by reading another post in this…
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Catch Up on the Latest MBC Research!
If you or a loved one has MBC, take a look at the summary of cutting-edge MBC research disclosed at the San Antonio Breast Cancer Symposium (SABCS) in Dec. 2021! There's encouraging news for individuals with each subtype of MBC, and all information has been incorporated into my book, "The Insider's Guide to Metastatic…
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Ladies in their 30s?
Hi! I'm 33, just looking to see who else is out there that's Stage IV and in their 30s. I don't know anyone locally in the same age group as me who is also going through this so I thought I would reach out here. :)
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I know people mean well . . .
So I know people mean well when they approach me and ask me how I'm doing. I have had people say everything from "hopefully this will all be gone soon and your treatments will be over and you can put this behind you". I've also been told "early detection is the best thing" - maybe, well my initial cancer was detected early…
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Pericardial effusion
On Friday, my oncologist told me I had a pericardial effusion. I am due to have ecohocardiogram in 10 days. I was wondering if anyone here has any experience with this. I am really concerned after reading about it. Thanks for any help.
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Shoulder metastisis
I will be having radiation on both shoulders and both clavicles soon. I'm dealing with the pain until then. Is it normal to have neck pain from this? The pain seems to go from shoulder to shoulder in the back (including the neck in the middle)
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Podcast: Experimental Elacestrant for Pre-Treated HR+, HER2- MBC
Experimental Elacestrant: A Standard of Care for Pre-Treated, Metastatic, Hormone Receptor-Positive, HER2-Negative Breast Cancer? December 11, 2021 Dr. Aditya Bardia is associate professor of medicine at Harvard Medical School and director of the breast cancer research program at Massachusetts General Hospital Cancer…
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Exp. Elacestrant Promising for Pre-Treated HR+, HER2- MBC
Experimental Elacestrant Shows Promise for Pre-Treated Metastatic, Hormone Receptor-Positive, HER2-Negative Breast Cancer December 8, 2021 Experimental elacestrant offered better progression-free survival than standard hormonal therapy for post-menopausal women and men diagnosed with metastatic, hormone receptor-positive,…