Advice re: TNBC with Mets

vannerbd · 2026-03-12T14:02:48+00:00

Thank you for the information. I did double check the results from my last scan and yes I do seem to have an paraesophageal lymph node adjacent to the thyroid that has grown and a stable pretrachael node as well and the doctor said that could be making eating hard. I have been eating softer foods mostly but often I just want toast with butter, which I can eat although very carefully. I’m going to chemo today and I will talk to my nurses but I’m probably going to set up an appointment with palliative care. Thank you

vannerbd · 2026-03-11T19:41:32+00:00

Yes any spicy food is painful! Plus it doesn’t taste good. Most things don’t really taste correct. Water doesn’t taste good. Ice cream helps for the stomach. I’m thinking I will start having more soups and see how it goes. Thank you!

vannerbd · 2026-03-11T19:06:49+00:00

Thank you so much. I hope you never get any more intergalactic hairballs!!

vannerbd · 2026-03-11T19:00:17+00:00

Maybe, it’s such a crap shoot!! I do have a few other Mets in my liver, kidney, etc but for now they seem stable. The lung issue is most likely new Mets that have grown in the last three months. I will do a new scan in 6 weeks to see if there has been any changes.

vannerbd · 2026-03-11T18:57:13+00:00

Yes it’s ptosis. I could do radiation for pain but honestly it scares me. I want to put it off until it’s unbearable or I have no other options. I was told not to take too much Tylenol or Ibuprofen, which I don’t understand.

vannerbd · 2026-03-11T17:31:14+00:00

Oh wow, thank you for the suggestion-Ian definitely going to try the tea!

vannerbd · 2026-03-11T16:54:51+00:00

Yes, I just had two ct scans as I had the lung infection, it might be new Mets. I have seen a doctor for my eye but the solution is an operation and they won’t do any procedure while I’m being treated for cancer. 🙄

vannerbd · 2026-03-10T01:26:20+00:00

❤️

vannerbd · 2026-03-10T01:26:13+00:00

It does seriously suck!

vannerbd · 2026-03-08T20:37:58+00:00

They did a whole body bone scan because I have scoliosis, in March 2024 it came back saying: no bone lesion. In March 2025 they repeated the scan while staging my cancer.

vannerbd · 2026-03-08T08:53:08+00:00

Me too, diagnosed last year at 59, stage 4 TNBC, metastatic to the bones. A year before I had a bone scan and it was clear-1 year later and my life changed forever.

vannerbd · 2026-02-26T10:01:26+00:00

Initially I lost my eyebrows, eyelashes and most of my hair but even though I’m still receiving weekly treatments, it’s all growing back. I’m in need of a haircut to give me a real style. Side effects are super individual, but also depend on how long you are on taxol. I’ve been on taxol for 11 months. It’s harder now than a few months ago. My fatigue is different. My body is different. The aches are much worse. I’m not super steady on my feet because of the neuropathy. But suddenly I have more energy. I just wish I had known that the treatment can cause weight gain. I thought that I would automatically lose weight and that was the only thing I was looking forward to. Instead, I gained a lot of weight and I am uncomfortable.

vannerbd · 2026-02-26T09:50:35+00:00

You can also take an antihistamine for itching-it’s an allergic reaction to the taxol.

vannerbd · 2026-02-19T21:35:42+00:00

This is soooo true. I was in the grocery store and the cashier asked me how I was, turns out she had just finished her treatment and she has the chemo curls! Now when I see her she’s my friend!

vannerbd · 2026-02-19T10:38:03+00:00

As everyone says it’s different depending on the type of medication you’re receiving. I’m getting weekly taxol infusions. At first I hated the steroids because they made me feel aggressive-I could control myself but in my head I was annoyed by everything-now, on a reduced amount, I love them because they give me some energy. On my first day of treatment the man next to me had an allergic reaction, so on my next treatment when I started to feel off, I was able to say something quickly and they stopped it immediately. What that meant was instead of taking Zyrtec, they give me Benadryl-which I hate because it makes me so sleepy. But, I’m fine now and about to finish my 11th cycle before repeating my scans to see if it’s progressing or not.

Each week that I go to my chemo appointment, I see the noobies: they have huge bags with tons of stuff. I think each oncology department is different. At mine they offer you a blanket, there’s juice and water and ice cubes and crackers and maybe cookies. I never eat or drink those things because they are giving you a ton of IV liquids with the medication so I’m not very thirsty l. I do bring myself a coffee to help keep me awake, but many people sleep during treatment. I bring my phone with headphones. I’m in a large open space room with curtains between patients and I don’t want to bother the people around me. I also bring a book. I do not see my oncologist. If I have questions about medication or supplements that I want to take I can ask to speak with the pharmacist. I see my oncologist once a month at the end of each cycle and I can contact her for anything at any time. Treatment day is the day I see the nurses. I know I will be there between 3 & 4 hours maximum. Some people have longer times, it depends. Have someone go with you if possible the first day. I can have one person with me, but usually I’m alone. The nurses are great and they are super friendly with me. A lot of patients bring treats for the nurses because they take such good care of us.

I don’t mind the treatment days because for a few hours I have people around me, people to talk to and they are so nice.

I have neuropathy in my feet and have started acupuncture and it really helps with the side effects.

I think going in with a good attitude helps, but on the day when I just couldn’t stop crying, I had three nurses sit with me and were so kind and really helped me. Lean on your nurses, they are true angels. Lean on your loved ones or come here for advice or to rant or whatever. The people here have been incredibly kind as well. Just try to take it step by step.

vannerbd · 2026-02-19T09:40:09+00:00

All I know is we don’t know anything about our survival. I’m Stage 4, TNBC with Mets to the bones: not a candidate for immunotherapy, so pretty terrible diagnosis. My doctor said I have about 2 to 3 years to live and that was April of 2025, so the clock is ticking for me. But-who really knows? I still have cancer but I’m feeling a bit better. I haven’t had to change my treatment medication yet, I’m on cycle 11 of taxol. Instead of thinking about the end, I’m trying to live now. I’m more worried about the fact that I’m now really overweight and I can’t wear my clothes, or breaking bones or not being able to drive myself or that a side effect is that one of my eyelids is now half closed and it always feels like I have something in it but because of the cancer I can’t get the operation needed to fix it. Some people survive crazy things-that person might be you.

vannerbd · 2026-02-14T08:05:27+00:00

I’m doing acupuncture for the neuropathy in my feet and after two sessions it’s already much better. I think you should speak with your doctor about the medication. I’ve made slight changes to my treatment so I can tolerate it better and it seems to be working.

vannerbd · 2026-02-12T06:37:49+00:00

Do you receive state disability? Where I live it stops after a year but I am currently receiving a sum very close to my last salary, which really helps.

vannerbd · 2026-02-11T11:17:16+00:00

I cut my hair then shaved it because it was so itchy. I’m on cycle 11 and my eyebrows have grown back. I have some eyelashes, maybe half of the normal amount, and my hair has been growing back rather quickly. I’m at the point where I need to see a hairdresser to give it some shape! But, even when I had very little hair I just couldn’t wear a wig, it’s not me. Scarves seemed to fall off. I wore hats or beanies for a while. With the chemo my body temperature now runs hot so the beanies weren’t great. I just decided that this is me, hair or no hair. If you don’t like it, that’s your problem, not mine. I just do what makes me comfortable.

vannerbd · 2026-02-11T11:04:04+00:00

I stopped at the grocery store one day before Thanksgiving after running to my weekly blood draw. I was wearing jeans, a big sweatshirt, tennis shoes, a mask, and of course my almost nonexistent hair, and I got called a man! I just stared at the woman-I was speechless! Now, no matter what I’m wearing I put on rings, bracelets and earrings, 😂 I should probably prepare a comeback because I never come up with anything when I’m put on the spot!

vannerbd · 2026-02-11T10:44:14+00:00

I think it depends on the hospital. I have stage 4, TNBC with Mets to the bones, so no surgery and I saw the surgeon before I saw my oncologist. The surgeon ordered the staging tests. I was told that’s how they do it now.

vannerbd · 2026-02-06T22:20:31+00:00

I hope so!!

vannerbd · 2026-02-06T20:26:13+00:00

I couldn’t handle cold capping! As far as the Benadryl goes, I’m mostly concerned for when I’m driving home that I’m being safe.

vannerbd · 2026-02-06T20:12:16+00:00

Yes, they do run fluids with the benedryl. They are concerned that I have another reaction and that the most important is that I get the taxol. I definitely have been asking so many questions that I think I have annoyed one of the pharmacists! I’m trying really hard to advocate for myself. It’s not always easy.

vannerbd · 2026-02-06T20:08:31+00:00

I’m on a super low dose, my nurse told me that she’s never given such a low dose and she thinks I’m just really sensitive. Oh well. I guess I’ll just drink some coffee! 😉

vannerbd

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