De Novo Stage IV
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Thank you, prairiesea. Finally receiving the Xeloda on Friday. Will be starting it on Monday.
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Has anyone had an airport scanner pick up their titanium tumor marker? I just went thru security at Ohare and was flagged for metal on my right breast (I've taken to travelling in soft no underwire bras to prevent the usual pat down) and had the security gal run her hand over the flagged area. She was respectful about it but damn was that a little embarrassing.
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SondraF, forgive me, but I don't know what a titanium tumor marker is. Is it something they do when you have surgery on your breast? I do have metal from a biopsy many years ago under my right armpit, but they've never questioned it.
I'm sorry that happened.
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Sondra,
I have a memory of this having been discussed quite a while ago. I did not travel by air anytime between my biopsies and bmx, when the marker was removed during surgery. However, I was once sent for further screening because my port was seen. Luckily, I carry my port card in my wallet so it was easy too explain. I also wear a compression garment on one leg when I fly and that created a need for further screening as well. Ah well, a minor convenience in the grand scheme of things. The titanium marker is about the size of a grain of rice. That airport has some very sensitive equipment!
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I couldn't believe it when I looked at the screen and saw the yellow box indicating where they found metal! Actually I have two markers because the first was shot straight through the breast tumor and the radiologist had to place a second one and make note of it. She also showed me on the screen so I was aware (apparently this was the first time it had happened in her 10 year career to that point and she called in a colleague to see it as well). Maybe two pieces of rice were enough to trigger the equipment!
Now I wonder at the sensitivity of Heathrow's scanners, although they dont use the US-style hands over your head approach exclusively, more as a secondary screening.
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interesting. I asked about this when I got the markers and was told that they aren't picked up. But a friend told me she has a letter for travel. Maybe we should request those! I am planning my first trip to see family since March 2020. 🤞I'm sorry that happened to you.
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Somewhat related; When I do the hands over head screening, my port is clearly visible. I do have a card, provided by the manufacturer, stating it is an implanted medical device. I’ve never had to show it . I just explain what it is and I would bet that they’ve seen them before
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Hello everyone. This thread is quiet. Just waking it up for new cases of De Novo. Perhaps there hasn't been new cases. which I hope for the same. In the event you are lurking or need support, we are here (yes, we are a small percentage for MBC). A lot of us are on multiple threads or behind the scenes. I know when first diagnosed it was a lonely place and didn't know where or who to gravitate for support. Thankfully KBL started this thread to bring attention to De Novo.
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Tinkerbell: m y goodness. It has been quiet. I am usually in Mel's living room.
I have never had a problem with my port at an airport. I thought it was all plastic. I haven't been near an airport in over two years.
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Hi, Tinkerbell107 and Elderberry.
Thank you for pushing the thread up. I did see someone yesterday state de novo somewhere, but I wasn’t sure if they were new. If I see who it is, I’ll let them know about this thread.
I’m up at my other home in the country right now. It’s chilly by my standards, in the high 40s at the moment. We have beautiful blue skies, though, today, so I plan to go out when it’s a bit warmer.
I’m doing fairly well right now, able to eat a little more again on my new treatment. I hope you’re doing well
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Hi KBL and Elderberry: Thanks for stopping by to keep our little circle going to help newbies or anybody that needs support. I often struggle where to post so it leaves me hit or miss on multiple threads. Elderberry I'm glad you have a place Mel's living room.
KBL: Glad to hear you are doing better eating. I'm sure your quality of life has improved. I recall it was touch and go for awhile.
As far as treatment it's crucial newbies get on the right track. Our group has a lot of experience with treatment to suggest different options. It saddens me when I learn of young mbc with de novo and see how their care needs are being managed. I only can speak for me but was in no position to be making decisions when diagnosed, When I look back if I didn't have my breast surgeon who I've known for over 15 years calling the shots I'd be in a different place, most likely not a good one…
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Tinkerbell,
my MO’S plan is A/C for 4 doses over 2 months and then Taxol for 12 weeks with H/P every 3 weeks to follow. I am Stage 4 de novo Mets to contralateral axillary lymph nodes. Do you think they are doing a good plan?She says after chemo we can discuss surgery and radiation….
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Hi BarbtheBCBarbie: First off, I'm sorry to find you here but welcome. As far as treatment, I dont believe any of us are in a position to question your MOs plan but to share our story or care plan when first diagnosed to help support you on the way. Are you Her+? I dont have experience in this area but maybe someone on this thread who can share their initial treatment plan with you.
In reviewing the literature, the pendulum has swung to hitting de novo aggressively with surgery and radiation. There are also strong opponents against this idea. I can only speak to my treatment plan which was surgery and radiation. Currently I'm on targeted therapy and bisphosphonate.
Did you have your primary tumor tested? I utilized foundation one to see what actionable information to help me down the road.
A lot of folks go for a second opinion at a NCI center to validate current MO or receive another direction. I did both, interesting enough had 2 different opinions. This can become tricky ...
Good luck and we are here if you need us...
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Barb,
I echo what tinkerbell said. None of us are oncologists and we are not in any position to question your mo’s plans. However, the proposed tx does seem perfectly reasonable with respect to what you’ve said about your circumstances. If you have questions or concerns about the proposed tx you can always seek a second opinion from another mo. Take care.
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Barb, my MO didn’t do the A/C, I think due to the risk of toxicity to the heart in those on HER2 meds. I also had allergic reactions to taxol and taxotere but did successfully handle abraxane with H&P for the standard timeline and only H&P thereafter without issue.
Also, considering lymph nodes as the only site of spread mentioned, you are probably in the oligometastic category. Not all oncologists agree on if it makes a big difference or not but it might provide non standard treatment or surgical options and is thought to have a better prognosis but it’s still being studied, no one really knows. Cancer is tricky and can change quickly.
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I was told she’s going aggressive because of location and that I can be considered 3c by some standards. Idk, I just want to live as long as possible. Thank you guys
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Barb, is there any way you can go ahead and put your diagnosis in so we can see. It really helps to see what you’re dealing with.
It was so nice to meet you today, Tinkerbell. Hopefully you’ll be able to make more meet-ups.
Missed you, Mae
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KBL: Thanks. It was nice to meet you on the Meet Up. It was my first time visualizing other folks with MBC. Rather surreal experience but gratifying. Typically, I attend virtual MBC conferences where the audience is researchers or professionals in their field. Depending on my work schedule I hope to pop in again.
MBC folks are fabulous!!!
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I hope you can make it more often. I love the group, and it’s really nice to see them. I don’t have anyone close to me who has MBC, so no one knows what we go through better
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KBL, thank you, missed you guys too but I’ll definitely be the next Monday. I double checked and my infusion is mid morning that day, so we’re on
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Tinkerbell- thanks for bumping this thread. I follow a few other threads, and post in Mel's (fast moving) Living Room. I feel like we speak the same language here.
Barb - I would definitely consider a second opinion. I did it, just for the peace of mind. It's all so overwhelming in the beginning. I guess it could be challenging if you get two different opinions, but then you'd have to get an understanding of the two approaches and choose which suits you best.
I really want to be at the zoom meetings, but things keep interfering. I'm hoping once we're settled in our new house I can be there regularly.
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Tinkerbell thanks for waking up the thread, I too struggle where to post and sometimes I can’t keep up fast moving threads!
KBL, enjoy your trip. I am glad your new meds are working well on you, and your appetite improves.
Barb, I second all absuggestions just add one, make sure you have your questions ready when you see your MO/ second opinion MO, bco has a list of questions, it is helpful to take a look at those questions, don’t hesitate to ask questions about your treatment or other options, you can also request a social worker to be with you during visit and asks questions on behalf of you. First few appointments I just cried because of that the MO didn’t bother to explain things, wasn’t good experience at all. Good luck.
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Mae, I may not be able to make next Monday, Grandma duty. I'll try.
SeeQ, hope to see you there sometime in the future.
Snow-drop, thank you.
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Hi everyone
Been a silent reader since my diagnosis in 22 October 2021 with denovo MBC.My lump was misdiagnosed by another doctor as fibroadenoma last year July 20.I am 36 this year with twin boys of 6 years old. Took me a while to settle with the diagnosis , emotions and finally acceptance that I can only move forward and fight tis battle. Cancer is not new in my family. While I am recently diagnosed with MBC , my younger sister has been struggling with metastatic ovarian cancer and my father urethral cancer both for 3 years now.My initial diagnosis earlier October 2 from ultrasound and mri before biopsy found involvement of multiple lymph nodes and tumours in my left breast.In which the plan by the MO was AC for 3 cycles, surgery , 8 cycles of chemo . But before that he called for a pet/Ct to determine further staging where 1 bone met was found on the sternum which made me a denovo met.
MO’s plans after pet scan is targeted and hormonal therapy with kisqali + femara with monthly zoladex. If response is good and stable, he plans to go aggressive and refer for surgery in 6 -9 months time. Currently I am in my 2nd cycle tolerating better now besides very low neutrophil count.I am really thankful and hopeful when I found this thread. It comforts me to know that all of you are strong fighters, supportive and knowledgeable.i read thru all the pages in October and today with some activities again, I decided to say HI to everyone.
Regard
Do
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Mae, SeeQ, Snowdrop, Exbrnxgrl, KBL: It's nice to hear from everyone again. This gives a voice to newbies and existing folks with De Novo. Mammography missed my tumor after nearly 20 years of scanning. Dense breast tissue more than likely was the culprit. It's too late now but I believe there is more than 6-10% de novo cases. Thankfully there is more research to treat de novo cases then lumping us into recurrence. At least there is now discussion going aggressive. I love hearing the term "oligometastatic". I know there is difference opinion as well but this does matter for radiation (SBRT vs palliative), at least in my case.
Just want to bring hope for new folks that may read this thread. I need to find a place on BCO that is "home". I become too scattered reading and responding to multiple threads. Can't keep up. As you can tell I'm a single tasker, lol.
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Hi Do: Sorry I missed you earlier. This happens when both members are typing. Welcome to the group. I also had one bone met at the time of diagnosis. My treatment plan is similar but I'm on Ibrance rather than Kisqali. In addition, I'm on Xgeva due to the bone met to the spine. Did your MO discuss Bisphosphonates?
I'm sorry to hear about your family members with cancer. I too have a family history of cancer (paternal/maternal) side. Ironically, I had genetic testing before my MBC diagnosis, no indicators where identified. Cancer is such a crap shoot.
Thanks for stopping by and keep us updated. I hope you respond to treatment and are eligible for the surgery. Your MO sounds like they are on top of things.
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Dofhl, I’m so glad you have come and introduced yourself. I’m sorry you find yourself here but am so glad you felt comfortable enough to tell your story. I can’t even imagine what you’re feeling at this young age with young children. I have to say I’ve seen quite a few younger women on this site lately, and it makes my heart hurt.
I suspect I’ve had this cancer since my early 40s, and looking back, I’m almost glad it didn’t show itself until my early 50s, but there wasn’t a positive diagnosis until I was 58.
Bone mets, thankfully, can let you live a really long time, and I hope they can get rid of that one met quickly for you so you can have the treatment get you to no evidence of disease.
If you’re ever interested, please join the MBC Zoom on Mondays at 2 Eastern. No pressure. We are all there to support each other.
Hugs, and please keep us posted about how treatment is going for you.
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Hi Tinkerbell & KBL. Thank you for the welcoming me into the group. It's really nice to hear from you.
Yes Tinkerbell, cancer is such a sneaky disease. I was previously advised for a genetic testing but too afraid to have one as my sister has double malignancy with colon and ovarian cancer with 16 gene mutations. It's to late to say i should have one now. But it's surprising to know that it may not necessarily identify any cancer type from what u shared.My MO said that I wouldn't need any Bisphosphonates for now unless i have mets at the spine and since the mets is on the sternum now, it will not affect my overall activities. Perhaps only once a year of bone strengthening jab with daily vitamin D for now. As u also earlier mentioned about Oligomets, my MO said that he would like to treat me as Oligomet Mbc and hopefully that there is a case for me for a radical approach. How long have u been on Ibrance, and how are u tolerating so far? Do u still experience any side effects?
Hi KBL, thank u for starting this thread. I have to say, it is one of those place I find inspiring stories from when I don know where to look. And you journey is one that truly amazes me. I am sure it wasn't easy for u but u r so full of positivity supporting each other here. I rmbr u mentioned about ur brother having BC as well if I recall correctly and I am sorry to hear that. I hope that things will turnaround somehow for all of us. Thank you for inviting me for the zoom on Monday but I most likely won't be able to make it as I promise my boys a short beach trip for their birthday. But do share if there is anything exciting or new. I will keep posting updates too.
Many love
Do
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Dofhl,
Sorry that you are joining us. With respect to genetic testing, it’s true that most of us have no genetic mutations using what is currently known. Genetic mutations account for only about 15-20% of breast cancers. If you have children, you may want to consider genetic counseling and testing. Despite several factors going against me, I have tested negative for all known mutations. Of course, I already had bc but I have children and grandchildren and had I tested positive, my children would have been tested as well.
I am the odd person out here. I have not had radical tx, not even chemo. I had a single bone met treated with rads and then AI’s. Drugs like Ibrance and Verzenio had not been approved back then. I have had no progression in ten years. Go figure!
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Dofhl: In regard to your question "How long have u been on Ibrance, and how are u tolerating so far? Do u still experience any side effects?" I'm starting cycle 29 tomorrow or 26 months at 125mg. My SE varies each month but tolerable. Low neutrophils are the gift that keeps on giving with Ibrance. I know you mentioned you'll be starting kisqali + femara. I have no idea why an MO may choose Ibrance vs Kisqali since they belong to the same class of drugs. Perhaps someone on this thread may have insight on this matter.
I know of a few folks who post on multiple threads that are on CDK 4/6 inhibitors for over 6 years, may even be longer if they are part of the clinical trial.
For bone health i take calcium/vitamin d supplement. I look at my lab work (especially calcium), at times I was over doing it, then again was concerned for being on Xgeva (which can lower calcium). I'm sure your MO ordered a CBC and CMP panel, as well as a vitamin D level for baseline information before you started treatment.
Since you recently started treatment you'll get into a pattern of sort with visits with the MO, imaging and lab work. Initially it is overwhelming, then I adjusted. You got this and we have your back.
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