Life does not end with a stage IV diagnosis (really!)
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spookiesmom, I love your fall in FL meme. We don’t have freezing temps or snow in San Jose but we do have deciduous trees and it’s definitely much cooler in fall/winter. Mornings can be chilly in the 40’s and 50’s but most of the time we break 60 for at least part of the day. We are also supposed to get rain in the winter, but that’s been a bit hit or miss recently
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Spookiesmom - that's hilarious.
SondraF - the passes can be terrifying in the winter. Or sometimes even in the summer. I hit a rock on the road one time on one of the passes and broke an axle drivingsolo at 1 am. When I got out to look at the damage, coyotes started howling somewhere nearby. And there was no phone reception ...
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lehrski, your photo of the Aspens is glorious. I'm a true believer in “America, the beautiful" and marvel at the wonderful variety of scenery across the United States.
Spookie, haha! Oh, you Florida show off! Lol
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Picture this, a petite 64 year old woman with stage IV bc teaching yoga to 75 first graders via Zoom. Imagine that since she only has a fixed iPad/camera so is using a double student desk as a raised platform to demonstrate seated poses. And she knows that her two fellow first grade teachers are howling with laughter inside, but she loves them anyway .
Yes friends, this is the normal life 😂
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I'm not so sure they were laughing. I'd be more inclined to believe they were marvelling at your courage and aplomb. I know my daughters (both novice teachers) would be impressed as hell.
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I learned something new this past weekend. My grandson's scooter was lying around and I got on it and taught myself to keep balanced.
When I was tired, I switched to the other "kicking off" foot. The gliding on asphalt was freeing.
Helped to forget my health, treatments and the unknown future.
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How brave of you!! It does look like fun!! Bet the grand couldn’t believe Grammy did that. Yay you!!!
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SandiBeach - brought a smile to my face. Last Feb (pre-Covid) my niece & family visited from beachy area. I bought sleds and we went tromped thru snow to local's sledding area. I couldn't stand just watching, so I got on! What a rush! Felt like a great accoomplishment.
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I love hearing about the sledding and the scootering!! That’s fantastic adventures
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Hello everyone, this is my first post on this forum and I can't express how much relief I feel at finding this site and reading so many great posts of people living their lives. I really needed to hear about how life does go on after being diagnosed with MBC, I was just given this diagnosis last week. Thank you very much!
Forgive me if I posted this incorrectly or interrupted the wrong thread, feel free to re-direct me.
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Hi SF-Cakes, welcome! I am sorry you have joined us but this is a good thread to start with! I know the first few weeks are so overwhelming and I really appreciated the info and support I found on this forum, and I still do! You will find lots of support, helpful information on specific treatments, and friendships, too.
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Hi SF-Cakes, sorry you find yourself here & with this diagnosis. You're in the right place! You will probably want to check out the bone mets thread https://community.breastcancer.org/forum/8/topics/...
and then, once your treatment is decided, there are also threads for the various meds/chemos/cdk blockers etc as well as just general support threads. Hang in there. The beginning sucks. It gets better. I didn't believe it but it's amazing what the mind adapts to
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Thank you very much, aprilgirl1 and moth, for the welcome! I will check out the bone mets thread, too. I'll try to read as much of the thread as possible, so I'm not asking a bunch of redundant questions. It is really helpful to hear what people are experiencing with this diagnosis, I've read some research and while that can sometimes be helpful, it can also be terrifying. Trying to reduce the terror!
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Welcome SF-Cakes, though I'm sorry you are joining us. I am the op of this thread and your neighbor in San Jose. This thread is a great place to talk about the more “normal" (I don't even know what that means anymore 🤷🏻) things that occur in our lives even as we deal with mbc. Life goes on, despite our dx. We are not always chipper and positive but we are sometimes surprised by how we continue to find happiness and joy. Take care.
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SF-Cakes, Love the name!! We share a similar (common) cancer subtype. I'm 5-1/2 years out and still on the first treatment. I can't say the scans ever get any easier, but other than that, life is very sweet
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Hi SF-Cakes would like to welcome you to this forum, but sorry you are joining us. i dont post often, but i'm always reading the posts and find them so encouraging. i was diagnosed with bone mets in May 2019. i was really scared, sure i would die really soon. but when i found this forum, just the name of the forum cheered me up. it is very reassuring to see all these women thriving, even with metastatic cancer. i felt very positive about treatment after seeing so many women, on this forum and on the metastatic bone forum doing well many years after initial diagnosis. unfortunately my first treatment (letrazole/ibrance) did not work and i was so disappointed and frightened. i didnt know what was next. i was so sure i'd be on ibrance and letrazole for at least a few years, but we live at a time when there are so many treatments available to us that were not available even 4 or 5 years ago and i am now on keytruda (immunotherapy) and doing very well. my most recent PET scan, less than a month ago, was NEAD and has been this way for the past year. i'm writing this because i want you to know that there is lots of hope, even if the first treatment doesnt work, there are many other treatments out there that can really help. Have faith.
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Thank you exbrnxgrl for starting this thread, and hello San Jose neighbor! I appreciate the recognition that of course we're not going to be positive all the time, and that's okay here, too.
Thank you cure-ious and ts542001 for your posts, and that treatments can really be helpful and can work. Even if not the first treatment, to stick with it and not give up.
I've been so shocked that my cancer has already progressed this fast (I was first dx with breast cancer in June 2020) and I'm still adjusting to this new reality. You all have already given me so much more hope around it. Whew. It's so much.
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Hi and welcome to the club that no one wants to join:) It is all so scary in the beginning but I want to assure you that life goes on. I was diagnosed with PILC, Pleomorphic Lobular Carcinoma in October of 2006. I've had many surgeries and treatments and I've been stage IV since 2015. I take Ibrance and Femara 21 days a month. I feel pretty good most of the time and people that don't know me think I look healthy. I actually have another advanced stage cancer that showed up five years ago in my stomach and liver. It is neuroendocrine so I had to have a major surgery and radioblasting. I get Sandostatin injections every 28 days. I have been able to live a full and normal life for 15 years inspite of cancer. New treatments are coming out all the time. Keep your chin up and take one day at a time.
Take care,
Nancy
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Hello, what an uplifting thread 😍 lovely to read you all living everyday.
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Hi SF Cakes - I'm a northern neighbor from southern Oregon. Like you, my cancer progressed fast. I was diagnosed in March of 2018 with breast cancer, thought I beat it and then had my MBC diagnoses confirmed in December of 2019. I've used these boards a lot to keep perspective and hear from real people that have gone on living with a metastatic diagnoses. Sorry to have to meet you here but I hope you find some comfort and inspiration. Welcome!
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ts542001- Wow, can you please give us some more details on your immunotherapy?! There are only a few ER-positive cancer cases we hear about that have responded to Keytruda. Normally, if you do not respond to Ibrance-Letrozole at the start, they just move the Letrozole to Faslodex. How did you get to a Keytruda therapy? Are you taking it as monotherapy or as part of a clinical trial. Did you have a high tumor mutation burden in Foundation One testing?
There is a report that people who do not respond to Ibrance- Letrozole at the start rather often have high levels of PDL1 expression, which would indicate they might do well with immunotherapy, and so I also wonder if that was the case for you...Thanks!
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hi Cure-ious -
interesting fact about people who dont respond to ibrance may have hi PDL -1 - i didnt know that. (i also dont know whether i have hi PDL -1, although its possible).
i am currently on keytruda - my tumor has MMR and MSI - meaning Mis Match Repair and Micro Satellite Instability. i have a gene for lynch syndrome, MSH6- that increases risk of many different cancers including breast (ovary, kidney,stomach, colon....)there are many others as well. anyway the MSH-6 is why i have the MMR/MSI. and MMR and MSI are now approved reason for getting Keytruda. Ifeel very lucky to have been able to get keytruda as it has "saved my life". my MO now tells me (now, since im NEAD) that my cancer was a nasty one. glad she didnt tell me that before. my tumor also has a high mutational burden.
i am fortunate to have gotten cancer now when we have so many different treatments available - and we also have so many different tests to identify the abnormalities our tumors have so we can get the right medication for our particular abnormality.
not sure if i explained that all, so feel free to ask any other questions
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Does chemo affect your menstrual cycle
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imotep, chemo usually halts menstruation. For some it's permanent menopause. For others, cycles resume after chemo stops.
Welcome to the board - I see it's your first post. Sorry you find yourself with a Stage IV dx. There are threads for bone & liver mets. Also looks like you might be de novo? There's a thread for de novo peeps too. Looking forward to getting to know you.
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Welcome to those who have just found this thread. I don’t mean to be the thread police and I certainly don’t mean to say we should never mention the medical/tx aspects of our lives but I would like for this thread to be a haven and perhaps an inspiration as we share the non-medical aspects of our lives. A focus on what we still can do and enjoy, if you will. BCO has many threads dedicated to every medical or tx aspect of bc. For stage IV members, knowing that we can still find joy in life can make a big difference mentally and emotionally.
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Imotep, For me it did put me into menopause and I was able to go straight onto exemestane, but I was 48 and so rather close to menopause age.. A year or so later I had my ovaries removed because there was a mass there from scans, but it was just some endometriosis, not cancer...
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TS- For sure, now we have so much more in the way of options, innovations, and a big push to move advanced cancers to something more approaching a chronic condition. You won't get resistance to your immune system, so you can keep going back to this in different combinations- like with STING agonists, the kinase inhibitor Eganelisib, cytokines like modified IL2 and IL18. statins, autophagy inhibitors, vitamin B3, or EP4, there is already long list of possible immunotherapy boosters!
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And back to our regularly scheduled thread topic...
Of course, teaching first graders over Zoom is not normal, despite the fact that we’ve been doing it since mid-March of last year. I have been teaching from my empty classroom because everything I need is there. Last night and well into the morning we had a major wind event here in Silicon Valley. When I arrived at school there was no power and so no Internet. My principal asked me to use my phone to email my class and then I gathered a bunch of stuff and headed home. Started class about an hour later than usual but almost half my class had no internet (I do not live in the neighborhood and had no power/internet issues at home). By the afternoon services had been restored so we were able to finish up the day somewhat normally. I was about to sink into a foul, frustrated mood when I realized that this is just life and I am very glad, despite MBC, that I am alive and well enough to still be teaching. Yup, teaching is frustrating this year but at least I get to be a part of it 😊.
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Cure-ious thanks for all that info!!! good things are happening...
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This is me in a mirrored reflection with my new wine cooler.
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