De Novo Stage IV
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Great News KBL! Enjoy the holidays
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Great news, KBL!
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KBL, I agree that tumor markers are not good indicators for everyone, but the are for me, and the sure seem to be for you! Most importantly, you are feeling better! Congratulations!!
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Sondra: Obtain as many clinical opinions as you can re the radiation. MO was the weak link when it came to the radiation. Actually, the BS was the aggressive one pushing for the radiation, felt it was my best chance to reduce recurrence, and the RO agreed. Good Luck.
KBL: Woohoo. I'm so glad you trusted your inner voice re treatment protocol. Enjoy the holiday and have an extra dessert/treat. That is my current problem too many damn Xmas cookies.
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Thank you, everyone. I appreciate it so much.
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KBL happy for you!
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KBL, it is really great news congratulations 🎉 , as already mentioned I am glad you stood your ground and convinced your MO about switching your meds.
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Thank you so much, Olma61 and Snow-drop.
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KBL, I’m celebrating with you about your good test results. Since I’ve been feeling better I have not been checking the boards as often as I have in the past, but it is always great to hear when someone is doing well. I wish everyone here would be as lucky as we are and be able to enjoy the holidays. ((Hugs)) for everyone who has extra burdens to bear during the holidays
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I know the feeling, "If I had only found the lump sooner, I wouldn't have de novo metastatic breast cancer." I heard during a MBC Zoom meeting that some researchers are starting to think the cancer has already metastasized and is in your body before you find the lump. All I know is that I had the cancer before I was aware of it. I had the cancer before I retired from 18 years of teaching. I am not going to feel guilty any more about not finding it sooner. Besides, that final year of teaching we sold our home in Los Angeles and once I retired with healthy care for life, moved up to our dream home east of Seattle. If I knew I had cancer, I probably would have hunkered down and stayed in Los Angeles. I am so happy living here in the woods. I am so glad not to be part of the HMO in Los Angeles, and to be treated by great doctors here with a PPO insurance plan for teaching retirees from my LAUSD school district. Unfortunately, when I no longer am alive, my insurance coverage ends for my husband. I am turning 65, and I have had a good run. I hope to live at least 8-10 more years (and more, if I am lucky). I am so sorry for the women younger than me that get MBC. That is not fair. But, I always thought I was a lucky woman. MBC is a very unlucky disease.
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Thank you, cyathea. I’m so glad you’re doing well also. I have been on the rough side of not feeling well, so I will take full advantage of the time I’m feeling better.
Woodlands, I understand the guilt. I had it in my bones only for six years. I look back and think what if we had figured it out years ago? It may not have spread to my stomach. The thing is I can’t change it, so I’m going to try to stay alive as long as I can and enjoy my family and grandson. I’m so glad you got to move first before you found out. It seems it’s better for your well-being. Hugs.
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KBL, Congratulations! I’m so happy for you
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Just having one of those mornings. I did a grocery list so I wouldn't forget. Now I can't find the list !! Saw this on FB and it made me chuckle.
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Tinkerbell, I can so relate to that!
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D37, thank you. I’m sorry it took me so long to respond. I had my awesome grandson all day, and I’m just now logging back on.
Tinkerbell, hahahaha. Yep, that’s so true. I put my list in my note app on my phone. No way to lose it.
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Hi Ilowen and KBL. If I did the grocery list on my iPhone, I would lose the phone at the store. Many of times I lost the grocery list at the store. I’m easily distracted at the store. Too many choices, I lay the list down and then realize later it’s gone. I do this with coupons as well. Oh well. We have our strengths and weaknesses, right? Lol
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Tinkerbell, that is my life. I've learned..I liked my monthly grocery list on paper...I only set the paper list down *in* my cart. I use AnyList, Reminder, and ColorNote apps for ev-er-y-thing. And Alexa is my best friend, lol.
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Woodlands - its kinda like playing that giant Plinko board on the Price is Right where a contestant slips in a disk a the top and it jiggles and jaggles is way down into some prize a the bottom. That's how I felt at diagnosis and that every bit of information took me closer to the $0 slot and away from the "Boat + Vacation to Hawaii + Free Soup for a Year!" slot (aka benign or hell, DCIS would have been acceptable!)
Many times I have complained to OH about how unfair this is, or I see all the women celebrating that it hadn't been found in their lymph nodes and feel jealous i didn't get a tidy little "garden variety BC". Im pretty positive mine went through the bloodstream and whatever small initial tumor there was broke open in a high impact crash I had in 2016 where I landed directly on that breast.
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Tinkerbell, I've been losing my phone a lot lately too. Oy! It just happened yesterday. Used my husband's phone to call it. Thank goodness for great hearing because it was on silent, but I could hear it vibrating. Lol
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Tinkerbell, I saw that on FB too. That’s so me! I swear I forget everything!! It’s really affecting my life. Does anyone know If it’ll get better
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SondraF, you put it into words very well. I feel the same about not being diagnosed soon enough to have a "garden variety" BC. I know that's not to minimize what people with those are going through but when I'm angry or feeling sorry for myself, that's what I think too.
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D37, I can’t say whether it’ll get better or not but you will adapt. I write everything down that I don’t want to forget, just in case. It doesn’t mean I will forget, but it gets the worry off my mind. In fact, I usually do remember but it’s commonly after the fact like when I’m putting the groceries away, I’ll suddenly remember “oh right, bananas!”. And that’s when I finally put it on the list.
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KBL: I went back to read old posts and noticed your post about multiple melanoma> How was that found? I am concerned my bone marrow "enigma" might indicate that even though from what I have read, it is usually low blood counts that lead to testing and then to DX.I would have thought that MRI. EPT or bone scan would show it. How was your treated and is it no longer an issue?
Thanks.
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Hi, Elderberry. Actually, in 2013 that's what they thought it was, but they did numerous blood tests that proved negative for MM. That's the route they kept taking when I would have an MRI and they saw too many lesions to count in my bone marrow. It was actually breast cancer, so it wasn't caught until it spread to my stomach.
If you're concerned about possible multiple myeloma, there are specific blood and urine tests they run for that. If those numbers are out of whack, they can do further imaging to confirm.
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Tinkerbell, that made me laugh! I am going to share this.
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Thanks ladies for getting it. So often folks @ me want to normalize my behavior and then they go into how they have brain farts 2. I bite my tongue. What I want to say your brain fart most likely is an oops. My brain fart is a cognitive decline caused by cancer meds that messes with my brain. Not an Oops but a downward spiral. Making cheat sheets help but damn I aged myself by 20-30 years having mbc. The grocery list may be just the beginning. I hope not but it's good to laugh and vent with all of you.
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Tinkerbell, I'm sort of glad you said you feel you aged 20-30 years having MBC. I've told my husband that recently. I feel like I've aged 20-30 years in 6 months. When I lost my long hair it was 90% light brown. Now that it's coming back in after chemo it's 90% white! On top of that my joints get so stiff that I look like I'm going on 90 when I get up. When I wake up in the morning, even my fingers are stiff!
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KBL: I have had an MRI, PET, Bone Scan, X-Ray --- my bone marrow glow is an "enigma" My blood counts are really good. So what gives? I guess I have to hope it is just something weird but nothing bad.
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Elderberry, I’m glad your numbers are good. I hate the wait-and-watch stuff. My bone marrow is full of cancer. I’m grateful my numbers aren’t too bad. I’ve had anemia for a very long time but not bad enough to require transfusion.
I did have a bone marrow biopsy when they thought it was MM. They didn’t do it CT guided like the bone biopsy I had in 2020. Kind of mad about that because it came back negative. They must have grabbed some that didn’t have the cancer. Bone biopsy found cancer. They actually did it CT guided to pull a lesion.
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For those who celebrate Christmas as well as others who do not, we are bound together with love, hope and peace. Well wishes for us all. Forever grateful for our MBC sisterhood.
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