De Novo Stage IV
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kbl-sounds good. And a new RV! My ex used to work on Airstreams and I always wanted one. I am not a tent person.
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Denny123, I’ve never understood Airstream. There is a guy who just pulled in next to us with a BasecampX. It’s very small. I looked it up. It says starting price is over $50,000. I’m really enjoying this camper.
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Im not a camping type person, but we love road trips and the occasional stay at a National Park housing unit (a yurt or something, if available). I saw one of the updated VW camping buses, the California Beach, last week and it looked like our speed. OH loves the old busses and took one around Europe for 6 weeks with his buddies when he was 19, so getting him to commit to an updated version would be difficult! But you can sleep in the back and it has a miniature kitchen set up and honestly looked like a lot of fun and more manageable/cheaper than an Airstream.
My cousin and his wife had one of those super duper $150K fancy all-green-materials custom made rigs when they did their RVing around the US for a few years. They enjoyed it, but were frustrated that their freedom was curtailed by having to book camping places so far in advance! So they sold it and bought another sailboat.
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kbl...they paid for the name. But I love any cmaper as longg as it has a toilet.
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sondraf---wow $150K????
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It was a LOT of money and it took like a year to build. Think it was done by Living Vehicle - I never saw it but they visit my parents once or twice a year and would park it up in the driveway. Whole extended family piled in to marvel at it!
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We looked at some A class and C class and even fifth wheels. I just wasn’t into spending that much money. I agree, Denny123. I don’t understand it. We have a smaller camper we are going to sell soon, so we’ll recoup some of that money. I bought it through a high school friend who worked at the dealership, and I can probably get back what I paid for it. We had that just as a temporary place at some land in Georgia where my daughter was building her house.
I don’t plan on making far off arrangements for our trips. What I hope to do is travel the 5.5 hours to my daughter’s place, stay a few days there, and then try to head a little farther north for a little bit in the summer. Florida is not the place to camp in the summer. Can you say miserable?
I have my monthly doc appointment with my new MO tomorrow. I am driving 60 miles. It’s so weird. I used to drive ten minutes to my appointments. I hope I like her. I’ll be asking for a CT, as it’s been seven months.
And here is something to make you laugh. My husband and I were sitting by the Suwannee River enjoying the flow and the beautiful weather. He had picked up a leaf and let it go in the water, and my doxie was thinking it was some sort of animal, so she was stabbing at the water with her snout. I got the bright idea to also get a leaf and bent over a little too far in my chair. I tumbled over and started rolling right toward the river’s edge. We were actually at the shoreline. My husband had a panic attack thinking I was going in. I stopped just before. Whew. That would have been cold. Lol. I woke up with a tender right shoulder and hip but not bad enough to take anything for it.
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KBL, it sounds like you’re having a nice relaxing time away, except for almost rolling into the river.
Airstreams are well built and have high end interiors but I’d never pay that price either. DH and I got a small couples camper a few years ago and enjoy it but need to take it out more often.
Wishing everyone a nice weekend 🙂
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LOL. Yes, I had a nice time.
Had visit with new doc today. She is going to present my case to the tumor board. That’s a first for me. She says the combination I am on is not standard of care and wants to see what they say. I liked her and her nurse practitioner.
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kbl,
I'll be interested in learning what your new MO has to say after she talks with the tumor board.
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I’ll keep you posted, weninwe.
Bloodwork came back. Tumor markers pretty stable. I hope if I come off Xeloda, they stay that way.
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kbl...lol at almost rolling into the water! Sounds like something that I would do. I am glad that you had a nice time.
I am lucky that my daughter only lives about 5 miles from me.
Super that you like your MO! My onc often talks about me at the Hillman, Pittsburgh, PA tumor board. He has invited me to go with him, but I refuse to get up at 5 am to have to sit in a long line of traffic for hours.I finally saw my endocrinologist last Wed, and as I suspected, I have hypoglycemia and postprandial hypotension. I have to try to avoid sugar and carbs, but I am not diabetic.
Also, my BP goes really high before I eat. And then it goes really low right after I eat... that is the postprandial thing. So he said to eat pickles!!! The salt will help to keep my blood from rushing to my stomach for digestion. And it should help my venous system to retain more blood. And I have to eat every 2 1/2 hours, so that my BP doesn't go too high.
I have been trying to figure this out for 3 months. The worst part is when I get my Herceptin (which I have been getting for 17 years). When I get home I have either a bad reaction or am so tired that I can hardly move.
I have a CT scan scheduled for Feb 6, and I have to drink the yucky stuff. Ugh.
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Denny123, I've never heard of those issues. Our bodies are such a pain in the ass. I wish you could catch a break. I absolutely hate pickles. They'd have to give me an alternative. I hope eating every 2.5 hours helps. What the hell!!
I'm really sorry you're dealing with that.
I ended up in the emergency room yesterday. I suspect it had to do with my fall, but I'm not sure. You know that feeling you get when you get a Charlie horse in your calf in the middle of the night? You want to scream, they hurt so bad. I woke up with that type of spasm into the right side back of my head. The spasms were constant and squeezed tight like that. I was screaming they hurt so bad. Even though I knew it was spasms, I went to make sure it wasn't a blood clot or aneurysm. I had no symptoms of those. After a CT and artery check, they were ruled out. She gave me a steroid, Meloxicam, and a muscle relaxer. I woke up this morning and could function again. I was glad I went. The spasms were not stopping. I still have twinges when I move wrong, and the back of my head feels like a bruise when I touch it. I wouldn't wish that on anybody.
I have a CT on February 3rd. I usually drink the berry bottles, two of them. This time they said I only needed one bottle and that they didn’t have berry Orange it is. We shall see. Please keep me posted how yours goes.0 -
Thank you so much, cyathea. I really appreciate the hugs and am sending one back your way.
I’ve had so much more energy on the steroid, I had forgotten what it felt like. It’s only a five-day regimen, so it probably won’t last, but I’m thinking once I can come off the Xeloda, maybe I’ll pick more back up. I had to take Zquill to counteract the steroid insomnia, and it worked. I got about seven hours in. Whew!
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Thanks kbl and cyathea!
kbl-Wow-that is scary! I hope that you never have those pains again! Did they figure out for sure what caused it?
Dill pickles aren't my fav, but I am okay with sweet pickles. I also eat high-sodium potato chips. It seems to be working since I have not had the extreme highs and lows lately.
I had no idea how many problems some ladies have with diabetic hypoglycemia. They have to wear monitors that sound an alarm every time they go really low.... even all night.
Since I am non-diabetic, I am really lucky. And actually, a diet that is low in carbs and sugar is a healthy one. But I miss stopping for an ice cream cone now and then.
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Denny123, I think it may be from the fall I took out of my chair last week when I was camping. I remember hitting my shoulder and hip, and I may have jarred my neck without realizing it. I could definitely tell it was spasms. I’m still having some slight pain in the area but no spasms. My fingers are crossed.
I’m not diabetic either, and I must say I eat pretty much whatever I want, although lately, I’ve been putting on a few pounds more than I’d like. I try to tell myself it’s okay because when things go south, I lose weight really quickly, so I need the extra cushion.
I’m glad the highs and lows are better. My sodium was actually a little low when I was in the emergency room. I thought that was odd.
They also checked my ferritin,, which was pretty high, over 300. It’s been high before as well. I’m going to mention that and see what the doc says.
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hi. Reading along here, so much happening with everyone! Hugs to you all.
I realize it's been 2 years now. Life is very different.
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Hugs back, DanceMom. Life is never the same, it’s so true.
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thanks kbl
I'm curious, do people count from when they got the biopsy results and the "you've got cancer" call, or after the weeks of more scans and tests when you got the "you've got stage 4 cancer" call? The diagnosis process was so long, especially in the middle of covid. From mammogram, through callbacks, biopsies, covid, covid tests, scans, mris....it was almost 3 months. So I'm never sure when my "cancerversary" is, maybe it's not that important.
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t this point, less than 2 years from the process beginning, I remember almost all the dates, the day I discovered the breast lump, mammogram, biopsy, appt with 1st careless MO who laid out chemo treatment and then said that they saw a spot on my ribs which, if turned out to be Mets, would change my treatment to hormonal only, the long weekend waiting for my scan, PET scan date, and the day my PCP called with the news about bone Mets. Was about 6 weeks altogether from start to finish, with mri, second opinion appts, etc…I just go with the month I received final confirmation. Though I don’t call it my cancerversary and I definitely do not celebrate.
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I count from the day my breast lump made itself known. It was about three full months from that day to the day of my first chemo, so it’s not really that big a difference (although months of life matter a lot in stage 4) with my Mets confirmed about 2 weeks prior to that.
But as far as I’m concerned the day I found that lump is the day my life changed, the day I entered “cancer world” so for me that was the beginning and that’s the day I count from
I do feel celebratory when August rolls around because hooray I am still alive.
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Olma, I think the same way as you. My life changed the millisecond I felt that lump in my breast in December of 2010. Within a month or so after a flurry of appts and tests, I received the stage iv diagnosis. I count the December date as the beginning of how long I’ve been living with metastatic breast cancer.
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in that timing, I'll go back to summer of 2020 when I noticed the dimpling, but couldn't get into Dr for 2 months, then another 2 for mammogram.
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I was a missed diagnosis, so technically, my de novo diagnosis was August of 2013. I wasn’t officially diagnosed with it in my stomach until May of 2019. I still count from the day they told me they thought I had cancer in my bones and bone marrow because that’s what it was. So for me, August 13, 2023, will be ten years. The thing is it had to have been there way before that because it was throughout my whole spine and bone marrow at that time in 2013. I look back now and am sort of grateful I didn’t know because I still had a young child. I feel so for those who are diagnosed with young children.
I also have a blood clotting disorder that I didn’t know about back when I had my daughter. I didn’t get the shots after I gave birth to her and even had a C-section without the drug I should have had to prevent clotting. My daughter was also diagnosed with the disorder and had to do something like 12 weeks of stomach shots after my grandson was born. Now she has to think about whether she will get this dreaded disease, as she has a cancer marker from my husband’s side of the family, and two other siblings of mine out of five have had cancer.
I’m not sure which is better, the knowing or not knowing. It all just sucks.
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I count from the actual sit down appt of 'youve got cancer' at the end of September, although I had the full initial diagnostics in one clinic two weeks prior where they told me then that I was to expect a cancer diagnosis. But then it took another two and a half months to start treatment and a bunch of other stuff happening in the meantime.
Early 2018 I remember developing some fatigue, which deepened into depression later that year. I thought it was work related, but November I remember developing some intermittent hip pain. 2019 was just a mess - dragged myself through a major project the first six months and didnt go to the doctor when nipple started inverting because a) the GP was such a hassle to get an appointment with and b) I knew I was due a surgical lift/ plastics consultation on an old reduction anyway. Then my back went out and I chased that down thinking it was another herniated disk, GP lost my blood results and didn't tell me, etc. Sometimes I feel bad about not going earlier but what is done is done and frankly Im pretty certain the mets were there even before the breast changes. And I know they say oh, trauma to the breast doesnt cause cancer but I wonder - what about trauma to the breast + BRCA1? Eh - its all just a great pachinko board isn't it.
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I consider my starting date as the day when my dr called to tell me that I had BC.
But since I was an immediate Stage 4, I wonder how long I really had BC. My onc said that I could have had it for 6-8 years prior to my dx. So that would make me a possible 29 year survivor.
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I go by my biopsy results date, since it was found by US/MRI in my liver first. Before the biopsy, I was expecting a liver cancer dx. I know my liver was clear 5-6 years prior (unrelated MRIs), and I was basically symptomless, but I was dx'd with large and numerous liver mets. I am thankful for Verzenio, SEs and all, as I've been NED for 2 years now. Yes, life is different now.
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The day after my mammogram. My ob/gyn called before our appointment, with the name of a breast surgeon to see. Everyone sounded so urgent.
I feel if it was stage 4 from the start, how long did I have it before it showed up? A year and a half from my last mammogram I was given an "all clear" from another surgeon.
But who's counting?
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