De Novo Stage IV
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hair washing!!! For oldest it was like water torture!!! Lots of bribes and wash cloths to "dry" her eyes. A few years ago brother sent me a picture of the funniest contraption on his daughter; a visor type thing so the water didn't go in her face.
I had the opposite experience regarding supplements. For years my GP always asked, then checked my bloods and said I was ok. At the beginning of this journey I specifically asked my MO if there are any supplements I should start taking and she said no. I have never taken supplements other than prenatal (when I remembered). At my last xgeva, the nurse asked me about supplements particularly D3. Then she looked at my latest bloods and said I need to take D3. So I did, but then was told to stop before surgery. Who knows? I try to eat well.
Not feeling 100% today. Maybe because I took the post op antibiotics on an empty stomach? Maybe because I finally got up and prepared some simple food for the first time? I've been walking, but bending into the fridge and cutting and sautéing are exhausting. My husband was trying to cheer me up and listed some really great things and then finished with "and you're going to get better!" I burst out crying.
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Hello all, nice to see our thread is keeping active.
Thanks for responding to surgery option for mbc, I read all your posts.
Olma, I calculated same logic, long or short (doesn’t really matter) waiting in hospital waiting area, laying down in scan/ mri tunnel with too much scanxiaty before and after vs enjoying a change with mask and other precautions. I love traveling but last 2 years, since my diagnosis to be exact, I stuck, bed resting with limited movement at first- don’t want to repeat my story, and then Covid and restrictions... I need to find a close destination for starter and plan to visit there for a change and recharge, I really need that.
Candy, I hear you. Cancer is a lonely land, we are dealing with many things in this disease alone daily, most because many people don’t have good understanding of MBC, medications and side effects, scans results stress, insurance etc etc. and by time friends disappear one after one. if you still have friends around, use the opportunity(!) maybe a sort of modified-outdoor small gathering is a good way of socializing at the same time safe for you?
Dancemom, I too record all visits including tests, and summary of doctors visits + questions to be asked etc. this has helped me a lot to keep track of my treatments and many times keep me safe of numbers of mistakes that care team does regularly!!
Saulius, I read your informative posts on research thread and appreciate your great effort. Please do continue posting here as well, plus your little king cute stories. All the best for the result.
KBL, I am so happy for you having fantastic time with your grandson. He is lucky little boy to have such a kind and loving grandma.
Sending vibes for those waiting for test and results.
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A slacker speaks up… I have great admiration for all of you who keep careful notes or spreadsheets regarding medical appointments, scans, treatments, etc. I doubt, knowing my personality, that I will ever be able to even come close to such meticulous record keeping! After 10 years at stage IV, I just say I've had too many of these things, wish I didn't have to have more but know I will. So, if you are not a meticulous record keeper don't feel bad. I should add that my patient portal includes every bit of my medical history and services by all my providers. I am a Kaiser Permanente member so everything from soup to nuts is in one central portal. Maybe if this was not the case I might be motivated to be a better record keeper (but probably not 😅). Take care all.
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haha exbrnxgrl! I just counted up the stuff listed in "MyChart".
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DanceMom, we had our Zoom meetup today, and many of us were a little on the blue side. One of the ladies did say this month is the Cancer moon. Granted, it means the sign, but just the wording kind of made us all nod our head. It's a full moon, and you are not alone.
I have thought about buying the visor for him. I have only washed his hair about three times altogether, so I'm not sure it would be worth it. On the TMI front, I only wish I had had a problem with my daughter washing her hair. Her problem was the other end. She must have had a time it hurt, and that was the end of that. I had to sit with her sometimes for hours trying to get her to go potty. I'm not sure how your daughter is now with washing her hair, but my daughter is the queen of a good movement now. Haha. Man, it was hell for probably a couple years. It seems there is always some quirk when they're little.
exbrnxgrl, All of my info is in my oncology chart too. It's nice that they pulled it all over, 99% of it anyway.
Snow-drop, thank you.
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KBL,
That is very convenient, isn’t it? Kaiser Permanente is an all inclusive medical entity. Notjust my mo, but every medical provider from acupuncturist to gyn, PCP, etc, as well as all pharmacies, labs, hospitals, and everything else medical is operated by Kaiser. All staff, from custodians to neurosurgeons are Kaiser employees. It’s a very different system than most in the US have and I believe they are only in 8 states. They have a huge presence in CA where it’s said that 1 in 4 Californians is a Kaiser member.
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I grew up on Kaiser, my whole family in CA is still on it. My mom says "its amazing, as long as you have a standard problem."
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exbrnxgrl, yes, very convenient. I just went to look at when one of my MRIs was because I want to have another one at the year mark. Boom, right there for me to see. They do have my gyn stuff and PCP stuff in there as well. I like it too in case my daughter ever needs my records. I hope that it will be there forever.
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dancemom,
I beg to differ with your mom. I had a few odd twists and turns early on and they were fabulous. My entire stage IV experience has been non-standard! Most of my teacher colleagues are Kaiser members as well (insurance coverage for teachers is part of the system for state employees) and like any group of people, our medical issues run the gamut from typical to non-standard. Rarely do I hear anyone complain about them. The other thing I love is their emphasis on wellness. Lots of classes geared toward wellness and the bigger campuses offer weekly farmers markets and lots of nutritional support. Although it’s not known why I have done so well, I will happily give Kaiser credit. Though this is no longer true, up until about 5 or 6 years ago they did no cosmetic plastic surgery. As a result their plastic surgeons only did reconstructive work which made them great for breast recon. I also love the idea that since their docs are Kaiser employees there’s no issue with insurance approvals and the doctors are just doctors who do not need to be concerned about running a business or pressure from drug reps, equipment makers or anything but being doctors.
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ahhh blue Monday and cancer moon 🌚
All my records are in my chart. But still when I show up for my injections there is problem(s) every month every time. My MO simply spaced out some important reports from radiology several times. So my records save me every time and they know it.
I have to sign up for zoom meeting, I don’t know how I react when I see your face!!!
Someone questioned about xgeva, you definitely should take daily calcium and vitamin D, I learned it here and confirmed with the MO.
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yes, i do think Kaiser is a fabulous model and I'm jealous! Unfortunately, when I was in college in nyc and on it, I had a problem and was told that since there was a kaiser within 50 miles, I had to go there for treatment 🤣🤣🤣. Um, it was 49 miles north of the Bronx!! But I do wish it were national. The next best thing is these new big hospital conglomerates where, while it is still an insurance nightmare, at least all your care, records, doctors are in one network.
Snow-drop, that was me about Xgeva. Thanks. And you are right, i DID first read about the D3 here.. I was told to stop all meds and supplements but letrozole before surgery. Once I know what is my next step, I will look into what I'm supposed to be taking. Right now its mostly antibiotics for these stupid drains.
Cancer moon, sigh
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I have a funny story about hair washing..My younger brother (he would also want me to say this was only when he was younger and this didn't follow him into his later life!) would cry when he had to take showers/baths because it was taking him away from his play time. When he got to the age when he was able to do showers without my moms assistance he would go in the bathroom, shut the door, wait about 15 min and then come out saying he had showered. My mom realized his hair wasn't wet after a few times of him being on his own. Long story short, he tried to outsmart her down the road by wetting his hair but not washing it. She then would do the smell test-and if you haven't ever smelled a young boys hair after a day of hard play, do yourself a favor and don't! Its a great story to tease him about now-how stupid it was that he was wasting all that time in the bathroom not getting clean, when he could have wasted all that time in the bathroom just taking the damn shower!
Also an admitted slacker here as far as keeping meticulous track of all appointments and test results. I also have everything in one central location in My Chart, and I have a calendar specifically for appointments, etc..but that's as far as I go. I do compare blood work from test to test. Ive graduated to once a month blood work on my off week of Kisqali which was very welcome as I went from weekly labs for some time to every 2 weeks, then every 3. I usually compare my TM's and neutrophils and make sure everything else is mostly where it should be ish.
Im interested in supplements too and want to start reading/looking into them. Good to know about D3, and I assumed calcium was on the list.
We have only traveled to Denver a few times since the pandemic to visit my brother and sister in law. Its an easy trip from CA, but Im ready to start traveling again if the world would cooperate. I want to see the beautiful blue water again in the Caribbean, Hawaii is always a must return trip, just so beautiful there. Id love to go back to Ireland and Ive been dreaming of going to Norway, Finland, Sweden some day..I love to travel, Ive missed it.
Dancemom, hope you are hanging in with your drain, Im sure you will feel better once that comes out!
Saulius, good luck to you and your wife on Wednesday, let us know how she fares.
Olma, I have to do what you did and get meds on a document I can hand out or fill out forms from. So much easier.
Im still dealing with my itchy skin. My MO prescribed hydroxyzine but it makes me tired so Ive been taking one at nighttime. While I do think its helping me sleep at least for the 1st few hours, I don't think its helping my itch. I may try upping it to two a day, bottle says I can take 3 times a day. Im also going to get some Aveeno lotion that has anti itch in it or something like that...If anyone has any ideas or knows of anything that would be helpful let me know.
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I have traveled extensively thanks to the Peace Corps and Pan Am but there’s still lots to see and great places to revisit. My current priority, when I feel safer traveling, is to see the Aurora Borrealis from Norway by taking a Hurtigruten cruise ( it also serves as a coastal ferry).
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I am not a traveler. I’ve never had the desire. I hope those of you who love to travel can start doing so soon.
EastCoasttoWestCoast, I remember you mentioning itching, but I can’t remember if you ever investigated if you’re allergic to something in the Kisqal. Just a thought.
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KBL, I blame my wanderlust on The NY World’s Fair and Pepsi Cola. In the early 1960’s “It’s a Small World”, later of Disney fame, was the Pepsi Pavilion in Flushing, NY. I rode it once and was instantly fascinated by how so many people lived in so many different places. Despite the differences, which makes life richer for me, what struck me most was that we are all people! My mother let me buy a doll from the gift shop and I chose the doll from India as I thought her sari was beautiful. I could hardly contain my excitement the first time I actually went to India! Disney always intended to install the ride in Anaheim and did so after the Worlds Fair closed
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exbrnxgirl, what a nice story. I went to the World's Fair in 1964. Was too young to remember anything, except my mom said I outwalked them that day. I was two years old, almost three. Lol
We then moved to Florida, and I have been to Disney many times and ridden It's aSmall World too many times to count. I haven't been since my daughter was in her teens. She's 32 now.
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Interesting about travel. I think the hardest thing about the pandemic for my mom has been not being able to travel. My parents did brave a trip here shortly after my diagnosis, right after they were vaxxed & pre-delta when we thought the world was getting safer. And a trip to Ireland to my brother's family and cousins after boosters and Pre-omicron. She BOOKED A CRUISE when they first reopened those!! We kids did not let up until she canceled. They were on a cruise in Australia in early Jan 2020! They got home just in time! Scary world when the idea of vacation is a gamble.
I had the "its a small world" record when I was a kid, from Disney. I think it drove my parents crazy, my mom still sings it annoyingly, lol. BEST RIDE EVER!
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KBL,
I was six and my sister was two at the time. I still have a photo of the two of us, in matching outfits, sitting on the grass with the uníshere in the background.
dancemom,
It's a Small Word is the ultimate ear worm!
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exbrnxgirl, it would be great to think we were there at the same time, crossing paths but not knowing. My sister was also almost six. Too funny. I’m going to ask her if she remembers anything from the World’s Fair. I remember wearing my favorite dress because there was a picture
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Hi everyone, I’ve been to a couple support group meetings and figured I should introduce myself
I found a large lump in my right breast (that I swear wasn’t there the day before!) at the very end of Aug. Went to gyn, then sent to mammogram and US, biopsy a week later. Stage II ILC. Was recommended to get MRI, when at initial Onc visit, she went over results and dropped the bomb that it looked like there were spots on my ribs. I had PET scan 4 days later which showed 4 spots of bone mets, though ironically the rib shadows were not. They recommended palliative approach to treatment. I saw another dr for second opinion and as I was what they considered oligometastatic and relatively young (49) they recommended an aggressive treatment plan. I started AC and T course the following week. Unfortunately, MRI of my pelvis in prep for bone biopsy showed numerous mets, not just the few on PET. My dr recommended keeping with the chemo course as I was tolerating it well and my breast tumor was showing an obvious response. I have 8 more taxol treatments. My onc has discussed possible mastectomy pending follow up scans next month. I know she plans to start me on Kisqali when I finish with chemo.
Sorry, that turned out longer than I thought! The mental aspects of this whole diagnosis have been heavy. It really is so isolating. I feel so cheated. I’m sure you all understand that.
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Mozuke1, It’s so hard to welcome a new member. In our hearts, we wish you didn’t have to be here. If you were on the Zoom meeting yesterday, I believe I know who you are. Please post any time and make them as long as you want. The beginning truly is the hardest part. I hope your scans get better with time. Hugs.
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hi mozuke. I'm also on aggressive treatment. Recovering now from masectomy.
US Ladies, govt site for covid home tests is live!
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Thank you, DanceMom
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Mozuke, thanks for sharing your story. I totally support aggressive treatment for MBC, despite I am in palliative treatment. Please report back how are you feeling. (((hugs)))
Dancemom, thanks for the Covid test link. Each home can order 4 tests. Wish you the best for remaining drain (((hugs)))
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snow drop,
Oddly, I’ve had some of the least aggressive tx than most mbc members. After rads to the bone met my only treatment has been about three years of Aredia and AI’s for ten years. That’s it and never had any progression. I understand that now that oligometastases are more widely acknowledged now so aggressive tx seems to be a common choice. My mo never referred to my tx as palliative but after a decade they can call it whatever they want 😉.
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Drains out, yay me! I shared this news with my sister along with my list of appointments. Her response: What are you, a cancer patient or something? Made me laugh. But, yeah, here we all are. °• Its a small world after all•°
Be warm, dry, and safe!
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I felt 1,000 % better after the drains were pulled. They weren’t painful but incredibly annoying 24/7. I had them for ten days. Sleep well, dancemom!
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Dancemom, congrats on the drains, that was fast! Mine were in for 5 1/2 weeks, I hated every minute of it. I couldn’t get down to the desired drainage level, I was told “some people are just juicy” lol. You’re gonna sleep so good 🙂
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thank you ladies!!! ❤ I am so glad that part is over. Having that surgery hanging over my head since I was diagnosed last March was stressful.
15 days. 5 1/2 weeks?!!! Illimae, wow. You are pretty amazingly strong.
That long pull and the delayed "ugh" feeling was sooooo weird. I suppose when reconstruction eventually happens I'll know better what to expect. I'm looking forward to hearing on Thur with MO what treats are in store next.
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yes, kris, I was on zoom yesterday, the only other ILC !
Thanks everyone for the welcome. This thread moves fast! I don’t know if aggressive treatment is the right one, and certainly other treatment plans work for others, there’s just no way of knowing, and we all have to make the choice based on our own personal cases and our doctors' recommendations. My husband and I discussed both treatment plans for a few days before deciding to go forward with chemo.
Dancemom, the drains sound awful, glad they’re out!
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