De Novo Stage IV
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Mexhay and Olma: thank you. As in previous posts, it's been a wild ride, from a good bill of health until 50, and then a downward slide after diagnosed with MBC. Oh well, I'm glad to be alive..
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Dancemom - So glad your surgery went well! Thats awesome! Hope you continue to heal without issues.
Tinkerell - I was having weird symptoms and things going on when I was initially diagnosed and mentioned them to my MO as a brain scan was not done on me initially. I really appreciate that he listens to me and takes action as appropriate. I figured I had come this far, I wanted to know what I was dealing with or wasn't. The scan was clear, but I agree, even if you think what you are feeling is insignificant it may not be and is always worth mentioning.
My Pet scan results were as good as they could have been so next stop for me is radiation. Have an initial appointment w/ RO in a few weeks. Ive been feeling lots of pain in my clavicle met, even going up my neck some, so I was surprised at the scan results but happy and will take it. We must celebrate and good news! Prescribed something for my itchness, although I was asking about recommendations for OTC lotion. Pharmacist told me when I went to pick it up it makes you drowsy which is great because sleep is very elusive. I took one last night before bed and got my first "fair" sleep score on my Fitbit since diagnosis. I'll take that too,
I don't have children (unexplained infertility here) or grandchildren, but I loved my grandmother dearly and was very close to her, so I love reading all the grandchildren (and children) stories!! Very heartwarming.
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Tinkerbell, I swear I wrote a response to you hours ago, but I had my grandson, and I have a feeling I was midway writing and got distracted so didn't post it. I'm sorry. I'm so glad your MRI of the brain was clear. I've had one brain MRI, and it showed skull Mets but nothing in the brain. I'm grateful. I hope you get to celebrate the great news.
I had my grandson all day today. I've never met anybody sweeter. I was sitting on the floor with him playing, and he kept saying, “Hi, Ma-maw," and leaning over and giving me kisses and hugs. I have him calling me Grandma, but my new name is Ma-Maw because that's how he says Grandma. I'll take it.
EastCoasttoWestCoast, thank you. I am so glad you had a great relationship with your grandma. I worry about my grandson being sad when I'm gone. He has wonderful grandparents on the other side as well. He is a very loved little boy.
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Wow. There is so much activity here it's hard to keep up. I'm enjoying a vacation in Seattle with my daughter so that probably makes it harder.
Mexhay, I see you were also diagnosed about the same time I was. I'm so sorry you're here but glad you found us for support. I'm so, so sad you've been diagnosed with this miserable disease with young kids on top of it. I'm sorry. I hope your treatment goes well to see them into adulthood.
Olma that's exciting that you'll have your first grandchild soon. I hope I'll be around long enough to experience grandchildren. I'm glad you will be moving closer to your kids.
SeeQ, I'm glad you got moved. Happy Anniversary! I'm glad your daughter will be closer soon too. That's exciting. My son is in the Army. My husband and I were in the Army too, but only stayed in for one enlistment, so we're very appreciative of the leave he gets. My dad was in the Navy too. It sucks that you only get to see your son about once a year. That is so tough.
Edit: KBL( not Mel) , have fun with your grandson this week. I love hearing your stories about him.
Dancemom, I'm glad your surgery went well. That's great to hear. Reading about you not being able to sleep in the hospital made me remember that awful feeling. With not being able to do anything while you're there, one would think we'd get more sleep than normal.
Tinkerbell, congrats on the MRI results. That's great!
EastCoast, I had some benadryl cream prescribed at one point but if your medicine now helps you sleep too, that's a good bonus! That's so nice that you were close to your grandma. I never had that with any grandparents but my daughter did with her great grandmother (my husband's side). It was so special to see.0 -
kris_2000, yay for vacation, especially with your daughter. I assume you were talking to me when you mentioned my grandson. It says Mel, but that could have been auto correct.
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KBL -hhaha, yes, I definitely meant you, so sorry.
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kris_2000, No worries at all. Good-old auto correct.
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I am so happy for my friend who had her successful lumpectomy same day as my mastectomy. Clean margins, she's up and around, can take some time off work. She'll have to do radiation... but it also makes me so stupidly sad. I know I'm in a great place as far as it goes, pathology was good, everything as surgeon hoped for, but I still am sad.
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Thanks, Kris. At my recent oncologist appointment, she started talking about 'long term' issues like long term bone health, frequency of scans, etc. I'm committed to being here until my kids graduate high school (and beyond!) so it was nice to hear her speaking in those terms, too. She's so far been cautious with her language. Of course no one knows the turns this disease will take, but I want to continue to care for myself (and I want to be cared for by my medical team) in ways that take my long-term well being into consideration.
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Hi Mexhay,
I noticed you are on Kisqali like I am- how do you find you are doing on it? I have minimal side effects thankfully and the worst one (besides constipation) Ive got going on is being itchy, and Im not even 100% sure its from the Kisqali. Im talking it w/ Femara (Letrozole)-
I also noticed you have had radiation, I should have radiation next month, how was that for you?
Hope everyone has a wonderful weekend!
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Hi EastCoast. I'm on cycle 7 of Kisqali and the past 3ish months have been really easy. Like, I don't even notice I'm on it most days. I didn't like losing hair, but that has stopped or at least significantly slowed. And my bloodwork has generally stayed good, just a few ANC dips here an there. I'm really grateful for this treatment option.
I had radiation in 3 places: two spine and one hip. I had negligible side effects from the hip and lower spine, but the radiation to my T2 (upper back) impacted my esophagus and was pretty miserable for several weeks, leading to dehydration, etc. If you think you'll have radiation to that part of your spine, let me know and i can share all my tips and things I wish I'd known. I'm so glad to hear that the treatment is otherwise so tolerable for you, too!
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many posts here, I am trying to keep up!
First congratulations Olma, grandma-to be and grand-auntie, 2022 got you precious gift 💝
Tinkerbell, first yay for clean mri result, I totally get that how scanxiety is. yes agree 100% we all share many similarities, which hard to understand for others. This platform let me to be me!
KBL, I am glad your little VIP keeps you busy in a very good way. enjoy your grandson and cute way he callsyou grandma.
Kris, dancemom, east-west coast, mexhay I am glad you found this thread. For me de novo at the beginning was so frustrating- no knowledge of what happened, this thread has helped me a lot...
I hope everyone is doing well 👋
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Thank you, Snow-drop.
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Kris, EastCoast, KBL and Snowdrop: Thank you. One down (MRI) and scan in April. Have a few months to breathe, and then the cycle starts all over again. Even in my downtime, do we every really breathe a sigh of relief? When I wake up in the morning and try to get out of bed (most days I delay the same, cozy under the covers,) the first step I feel is joint pain. How can this not be a trigger for MBC? Didn't have it before. I'm able to work out the joint pain, but this is how the morning begins, then onto pills/supplements. I know all of you get it for I'm sure your mornings our similar. I'm just venting/ no real purpose. Hope everyone stays safe. Covid numbers are crazy in PA, I guess everywhere.
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Mex-hay, Im right behind you and staring cycle 7 on Monday, I also lost some hair but it has also stopped for me, or slowed down like you said. My bloodwork has also been pretty good. I struggled w/ some heart issues in the beginning, my MO was very cautious and I found myself being seen by a cardiologist and wearing a holter monitor for a week. I was prone to palpitations before diagnosis and they wanted to be sure it wasn't being aggravated by the Kisqali or that it wasn't causing other issues. Thankfully that all checked out. You said it best, Im thankful for this option and I too often times feel "normal" which is a delight.
I'll be having radiation on my L1 and clavicle if nothing changes..so Im wondering how the clavicle is going to be. being so close to my throat. I don't know much about radiation yet..Im kind of getting my feet wet now but want to be more educated before I see the RO. Im hoping since my mets are small I won't need a lot but I have no idea if that makes a difference.
Tinkerbell, I very much relate to what you said about your downtime. I don't feel like Im on pins and needles but I hate not always knowing what's going on inside my body and having to second guess little pains and things. Its just become the new way of life..Where in PA are you? I was born and raised in Lancaster.
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Been off for a long time, crazy season of grading at work, traveling briefly, and then pulling together holidays in a hurry. Welcome to all the new folks--Tiffany, Eastcost..., Dancemom, Mexhay--sorry you are here but also glad you found this site and thread. I'm almost 10 months out and some of the shock has worn off but definitely relate back to how I felt in March. With treatments that work it's gotten better, though even that's a process of adjustment. I hope and trust you'll find the better.
This group is very comforting and once again tuned in to much I've been feeling. Particularly the out of nowhere dark thoughts. I'm actually feeling pretty well and have just been pressing ahead with life and job, enjoying a short vacation with my family in Costa Rica, delighting in my wonderful twenty-something ds. But nevertheless I get the thoughts....am I planning too far ahead? Am I really going to be able to do those things I've planned? I'm going ahead anyway, figuring if things change people will understand, but the uncertainty is sometimes unsettling. It's helpful to know others also have this experience.
But so much good stuff: Congrats to KBL for reduced tumor markers and improved health....and fund with your grandson. And Olma looking forward to a new grandbaby, and SeeQ on your move.
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Tinkerbell - I'm with you on mornings. It didn't used to be this much work getting out of bed in the morning.
prairiesea - A Costa Rica vacation sounds amazing. I hope you had a wonderful time.
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Tinkerbell, I can relate to the stiffness. I’m sorry. Venting is awesome and what we’re here for. We definitely get it.
Prairiesea, so glad to see you. I’ve missed you on Zoom. Thank you. I’m glad you’re feeling well right now. It seems the dark thoughts subside a lot for me when I feel decent. I’m so glad you got to go to Costa Rica. Hugs
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prariesea it looks like we were diagnosed around the same time. Yes the ride of what to plan, what not to plan has been crazy. I am so relieved this surgery is over!!!! It was looming since last March Now! Now I want to figure out the rads schedule, and know when I go back on meds, and when will omicron pass and maybe we will have a little respite like last June when the world felt almost safe again so I can plan to visit family I haven't seen since fall 2019 and earlier. I miss my parents!!!!!
Does anybody know anything about a change in hormone receptors? My pr went from positive on initial biopsy to neg in pathology from the mastectomy. I'm wondering if it's from the treatment? I didn't find much info on it, only something about change being possible in the Mets cells later. This is the same tumor. I think i understand that it doesn't change treatment as long as ER is still positive. I see MO next week, so I can ask then.
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DanceMom, I don't have an answer for you, but I think Candy-678 had that happen, so you may want to ask her. I know she's on a different medication now, but I think that's because she had progression.
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Dancemom- KBL mentioned me. I was ER+/PR+/HER2- all the way thru until my latest liver progression (4years). Then the liver biopsy came back ER-/PR+/HER2-, I flipped my ER status. That can either be from the cancer finding another pathway that allowed the liver tumors to grow, or heterogeneity-- meaning some cancer cells are still ER+, but some have become ER-. But you have not had progression, right? So you should ask your MO. I think they look at the ER with more weight than the PR also. So your ER not changing might not effect your treatment plan right now. I did change treatment, but that was due to liver tumor growth. The ER flip may have factored in too.
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Candy, thanks for reaching out. No progression on last scans so maybe its just where they picked up the bits in the orignal biopsy? I will ask next week.I hope you are tolerating your new regime well. So much to learn!
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Candy-678, I thought your PR status was what changed. So sorry I got that wrong.
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KBL- No worries. I am surprised you remembered that I had a flip. Hard to keep up here. I think "now who posted that? I cannot remember who it was".
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and thanks kbl for remembering!
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hello de novo friends,
just popping in on your thread to share this very new research regarding surgery on the primary in de novo pts.
Early Local Therapy for the Primary Site in De Novo Stage IV Breast Cancer: Results of a Randomized Clinical Trial (EA2108)
https://ascopubs.org/doi/abs/10.1200/JCO.21.02006?... abstract only, full text is paywalled
They found no OS benefit in this study
"Early locoregional therapy for the primary site did not improve survival in patients presenting with metastatic breast cancer. Although it was associated with improved locoregional control, this had no overall impact on quality of life."
I saw discussion on it on twitter & there apparently was subgroup analysis. for triple negs there was actually a small decline in OS - some oncs on twitter were hypothesizing it was due to delay in starting chemo. Someone also commented that a subgroup analysis of HER2+ and oligomets/bone only might still indicate a benefit.
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Thanks for posting that article Moth. Helpful to have that information.
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Nice meeting you today via Zoom. I have De Novo stage four cancer. I had a small pain on my side which started hurting a lot. I went for a scan because they thought I had a blood clot and found cancer in my breast, liver, and back. I have two young kids and find the Diagnosis overwhelming. I want to live a long life.
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Lizzybatts, it was so. Ice to meet you today. I hope you find our group of awesome women helps you to know you’re not alone. I’m sorry you have to be here, but there is a lot of support.
Candy, with my forgetfulness lately, I’m glad I remembered. The threads do move so fast.
Moth, thank you for posting the article. I really appreciate you sharing this. My primary was never found, so I wouldn’t have had a mastectomy, but for those who have Stage IV and know it’s in their breast, this is good information.
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moth, does that mean my amputation a few days ago was in vain?
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