De Novo Stage IV
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cyathea- is interesting that there was a story on the news today about just that topic. Some states have laws that require patient notification and education (or literature?) about risks associated with having dense breasts. There are some other states that have laws requiring insurance companies to pay for additional screening. It's progress and hopefully it will snowball to all the states.
Tweedle- yes, there's a whole new vocabulary to learn, and so much more. I'm glad you've decided to be kind to yourself, and I agree living in the moment is a requirement. That doesn't mean you can't continue to live life, learn new things, travel, etc. You just have to be more flexible in your expectations. There's another thread " Life does not end with a Stage IV diagnosis" that you might enjoy when you're ready.
ETA the link
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Thank you, exbrnxgirl and cyathea.
I have my first advocacy meeting tomorrow. I’m looking forward to gleaning even more information.
Tweedle, please feel free to private message me any time. There are also Zoom meetings you can join to share with other ladies. Please let me know if you’re interested, and I can send you a link. They have meetings for those under 45, as well as three different meetings for those of us who are Stage IV. Hugs.
I am placing a link to my story that was posted on lobularbreastcancer.org.
I was out of pocket for a few days. I’m sorry it took me a minute to see the great posts.
I had a brain MRI last week. All clear. Very happy about that.
If I’ve posted this before, please forgive me. My memory isn’t what it used to be.
https://lobularbreastcancer.org/my-ilc-story-kris/
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Tweedle, I couldn’t agree more. We must offer ourselves the same comfort and caring we would extend to others.
I recently read two books on self-compassion. The author explains there are two sides of it; one is about being tender and kind to ourselves and the other is about standing up for ourselves, creating boundaries, making ourselves a priority. The books provided different things we can say to ourselves when we go through struggles or difficulties. It's not about affirmations but about talking to ourselves in an understanding, supportive way. It's an enlightened approach that I agree with. I got the books from the library and there's a website with some easy reading insights (so no money involved!):
What is self-compassion: https://self-compassion.org/the-three-elements-of-self-compassion-2/
What it is not: https://self-compassion.org/what-self-compassion-is-not-2/
Simple guided exercises to practice self-compassion: https://self-compassion.org/fierce-self-compassion/
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Welcome Tweedle!
I am at almost 21 years of Stage 4. I am having problems with wildly fluctuating BP and now going through testing to try to ascertain if a recent episode of dizziness, chills and being extremly hot and confused, was a hypoglycemic problem, or a TIA or heart problem.
All the while I have been on chemo forever, it seems.
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KBL, big happy woohoo for the clear brain MRI 🎉
tweedle, living in the moment can be a useful outlook but it’s not the only way. Often after the initial treatments and with some luck of good or stable scans, many find that adjusting to a period of maintenance can bring more looking forward and less uneasiness. That’s what I’ve found anyway. I wish you well.0 -
illima, denny124, and divinemrsm
I respect your experience, and therefore your words of wisdom.
I look forward to a better outlook. Right now, I am either numb, forgetful, or mad/sad. I have moments of real peace, but I am not maintaining it the whole day. I find 3;30-5:30 am to be my most difficult hours.
I still don't get how to be mindful. I've had ADD my whole life and have to work hard to focus except when I over-focus like when reading a book or knitting. So many new things to learn on this journey
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Thank you, Mae.
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tweedle, your emotional ups and downs are very normal. It took me many, many months to process living with mbc. I had severe anxiety so starting an antianxiety medicine was a big help. I developed coping mechanisms little by little over time, not all at once. Don’t worry that you don’t have better outlook. Allow yourself to experience all of your emotions. Being diagnosed with mbc is a shock to the system in more ways than one. You don’t need to minimize that.
For me, being mindful means not projecting my thoughts into a far off, unknown future I cannot predict. Not always easy! But I try to find things that keep my attention on today, this week, this month. It could be satisfying work, a tv show, doing a home improvement, reading, going to the pool, ect. Do more of the things you like. Any time you find something that makes your heart smile on the inside, pay attention to that, even if its something small, and try to add more of that kind of stuff into your life.
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DivineMrsM, beautifully said. I agree 100%.
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hi ladies, it’s been few weeks I’ve checked in, I wanted to post several times but forgot or being busy with stuff, my teeth decided needing repairs all of a sudden, I think I need study glasses as it is difficult to type and rea, ah another appointment to go. and on top of that preparing for a move to a smaller house…
KBL congratulations, your knowledge and support are valuable for the community .
Welcome to newbies to the club nobody wants to join, you will get support here.
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Good to “see” you. Snow-drop. I hope the teeth and eyes get sorted. And I hope your move goes well. Thank you.
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To all my Florida Sisters, please be safe once again. It appears another hurricane is forming. Not sure exactly where the location is in Florida for it looks rather widespread and going up the East Coast. Enough is enough already. Let's hope the storm is downgraded. Prayers.
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Thank you, Tinkerbell. I’m actually hoping we get lots of rain from it. Our pond is dry. We haven’t had rain in many months. She looks to be coming at us from the east, and we are on the west, so we should get some wind and rain. Hugs
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I was so glad that I attended the Zoom meeting for Metastatic Breast Cancer on Tuesday night. So many well-spoken intelligent, caring people who finally truly understand what I'm talking about (certainly better than I do!).
I had a telephone conversation with the oncology dietician from MD Anderson. From a weight loss, cancer point of view, she has given me good guidance, but she doesn't seem to take into account my diagnoses of Diabetes Type II or non-alcoholic fatty liver disease, or ....
I really like reading what you all post. I don't like what has happened to us. It is horrible to be blindsided by a de novo stage IV breast cancer diagnosis. However ... not being alone in this situation helps.
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Tweedle, so glad you could join. I’m usually at the Monday 2pm ET Zoom. I’ve been going since they started. I am sad when I have to miss. I hope you can continue to go. It really is comforting to talk to people who understand what we’re going through.
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I'm finding that acceptance is closer now than ever. I've lived a rich full life and intend to continue until my last breath. I don't know how long I've had breast cancer, and I don't know how much longer I will live, but I'm coming to terms with being of worth even with this devastating disease that cannot be cured. A lot of people tell me they are praying believing that I will be cured. I don't know what to say to them except "Thank you."
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Tweedle, the acceptance is a hard piece of the disease. It took a while for me to accept the doctors screwed up and it spread because of no treatment, but I’ve also accepted that nothing is going to change it, so I must live with it and enjoy what time I have left. I’m so appreciative to still be here after nine years, and I have not suffered nearly as bad as some have. I try to find the things to appreciate each day.
I hope being here and being able to talk about what you’re feeling helps. Nobody gets it quite like we do.
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tweedle, I’m cheering you on! Accepting this change is like picking lint off a black jacket. Just when you think you got every white speck (or kitty hair in my case) off the jacket, you find another piece. So maybe the work of acceptance is never done, but the jacket looks a lot better after you use the lint roller.
I think that, early on, it’s hard to imagine that life can still be good, even with this diagnosis. It’s not good all the time, of course, but there is still light in the comfort of friends and in the daily routine of living and breathing. This is harder for some than others due to brain chemistry. I’m a natural optimist, so I think I have it easier than a lot of people, but I have friends who are bipolar and struggle with depression and anger. Their journey is SO difficult. I am in awe of their persistence and courage. I just hug them, thank them for not giving up, and tell them that I will love them no matter what
((Hugs))
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tweedle...hang in there! I am one month away from the beginning of my 21st year of Stage 4 MBC de novo. So there is much to hope for.
I am dealing with hypoglycemia and orthostatic hypotension and have had a ton of tests. I am non diabetic though. This doesn't help my struggle with BC.
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I received the results of my latest CT scan yesterday, of my chest area. My onc was worried about my heart function so was concentrating on that area, and did not scan my liver. (darn it). My previous scans showed an indeterminate spot in my liver. So here's hoping that it remains stable.
Anyway, all areas look good. I do have some spots in my lungs that are not considered to be mets (hopefully).
Still fighting to figure out my hypoglycemia and orthostatic hypotension, and unsure what the heck to eat anymore. Tons of tests have turned out to be fairly good.0 -
Denny123, glad things look okay, but don’t doctors realize we need to know all information? Ugh. Sorry they didn’t scan your liver.
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kbl... My liver spot has been stable for 2 years and he said that he doesn't even know what it is. He was more worried that I had a blood clot so he ordered a special CT scan to check that area better.
So I don't know if it could include the liver also. I will be getting another CT scan in 3-4 months.
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I’m glad it’s been stable. I did have a nodule mentioned once, but it’s never been mentioned since, so it’s probably resolved. I know it’s still hard to wait three or four months.
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denny123,
I'm amazed by your MBC history. You're 21 years out after your dx of MBC and your tumor was grade 3! And 5 years on Xeloda? I'm amazed and impressed. My MO keeps saying I have a 5 year prognosis, tops.
I was not a candidate for chemo when first dx with Stage 1 in 2016 and when dx Stage 4 in 2019, I was put on Verzenio and Letrozole not chemo. So have never had any chemo.
My latest treatment has been nine weeks of Everolimus and Fulvestrant, but my chest and abdominal CT scans done today show progression in the liver with multiple new lesions (none larger than 1.0 cm) and one new bone lesion L1. I see my MO Friday and expect she may suggest a switch to Xeloda. Although the new drug Elacestrant might be an option for me as I have the ESR1 mutation.
I'm a daily walker and go to the gym for resistance training with light weights so I'm very concerned about Xeloda's hand & foot side effects. This side effect sounds terrible and I would not tolerate not being able to put on my shoes to walk outside even in winter. A daily walk is so important to me both physically and mentally.
I saw the foods you listed that are lower in folic acid. Is the "red lettuce" on your list "red leafy lettuce".....like green leafy lettuce, but with the red tips?
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weninwi....Thanks. I don't know what Grade my BC was. I have 21 years of papers to look through and haven't taken the time...lol.
Your MO's prognosis is not right, I feel. In 2004, my liver was so filled with mets that I statistically had only a year, but I never did ask my onc. Well, I am still here!
The red lettuce that I got was from my local produce guy and it was all red. I never really looked for it in the store since I have my food delivered. I just stick to iceberg. If you are affected by folic acid, I think that if you watch your diet, you should still be able to do your daily walks. I get out of breath too easily to do so, and am now getting tests by my cardiologist. After my upcoming stress test, I hope to be able to use my treadmill again.
Now I have to use compression stockings and they are so hard to put on, that I don't take them off through the day to reapply Aquaphor. So I decided to wear them every other day so that I can lotion up and wear regular socks. At night I use silicone socks with Aquaphor and Aquaphor on my hands with food service gloves. At the gym you might want to wear gloves of some kind to avoid the friction.
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weninwi, I have been on Xeloda for 14 months. I do have hand and foot but not severe. Lotion will become your friend. I still walk and do everything I need. It will be different for everyone, so hopefully it won’t be so bad for you.
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weninwi, I have been on Xeloda for 14 months. I do have hand and foot but not severe. Lotion will become your friend. I still walk and do everything I need. It will be different for everyone, so hopefully it won’t be so bad for you.
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weninwi, I've been on Xeloda over two years and still am active. I walk, go to the pool, line dance, etc, tho not every day. But I think I get around okay. I deal with hfs and consider Xeloda to be very tolerable. I did have to have a dose reduction after 9 months due to increased hfs but it’s been rather manageable since then. I do keep lotioned up. It's not painful, just sometimes some mild tingling. You may have to make some small adjustments but find you can still be pretty physically active I hope you do well on the treatment.
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weninwi, I've been on Xeloda over two years and still am active. I walk, go to the pool, line dance, etc, tho not every day. But I think I get around okay. I deal with hfs and consider Xeloda to be very tolerable. I did have to have a dose reduction after 9 months due to increased hfs but it’s been rather manageable since then. I do keep lotioned up. It's not painful, just sometimes some mild tingling. You may have to make some small adjustments but find you can still be pretty physically active I hope you do well on the treatment.
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kbl and denny123 and divinemrsm,
I start Xeloda in a few days. My starting Dose will be 1500mg 2x/day. My starting Schedule will be 14 days on then 7 days off (when blood tests will be done).
What Dose and Schedule are you on? (I realize dose may vary as it is based on a wt/ht calculation).
Have you ever had your Dose reduced due to side effects? If reduced, to what Dose?
Have you ever had your Schedule changed due to side effects? Apparently a typical cycle is 14 days on/ 7 days off, but an alternative is 7 days on/ 7 days off.
Thank you
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