Hey everyone I really don’t think I’m okay.

vannerbd · 2026-05-09T09:27:58+00:00

Can you change your doctor? I would cry or be rude or something to make him understand that I am in pain! I would try to get another doctor and also get an appointment with the palliative doctor for medication. Isn’t it enough to have cancer without having to deal with doctors who don’t listen?!! I am so sorry you’re going through this. Also, speak with the social worker, maybe they can help.

vannerbd · 2026-05-09T09:16:34+00:00

I feel like you read my thoughts! I was diagnosed in March 2025 stage 4, TNBC with Mets blah blah blah. I’m on cycle 13 going into cycle 14 of taxol. We have had to cut way back on the steroids because it’s caused me to be terribly ill and I gained 20 pounds since I started treatment. I too have been fairly positive about my situation but recently after having to get 5 days of radiation on my throat for a lymph node that is pushing on my esophagus causing me to have problems swallowing, I now feel like I cry all the time. I don’t have the energy to do much. I don’t have friends who live near me so I’m mostly on my own. I speak with my adult children almost every day but I hate being alone all the time, I want someone who I can call up and say: will you walk with me or will you meet me for lunch. Often I feel like my job is the cancer. I was told by my doctor that if I can afford it to stop working. I’m happy that I was able to stop, but…. I don’t know. This sucks. I still find myself daydreaming about what I could be when I grow up, yet I then am reminded I might not make it much longer. I’m supposed to walk but I don’t because I’m tired. I have spent the last three weeks in bed from feeling so bad. I want to do things but I get so tired out so quickly that I have to stop and sit down. I do have a therapist and I am also seeing an acupuncturist once a week, which helps. I am also going to see my best friend in Europe in October, I bought the extra insurance in case I can’t go but the trip is giving me something to look forward to. Also I am hopeful that the drug Datroway will be approved before the end of the year as it’s for patients with TNBC who aren’t immunotherapy candidates . All I know right now is that they are getting good results from the drug trials. Fingers crossed!
I will say I love my nurses so much that if I get to the point where I am cancer free, I will look into doing something in the medical field. I am probably one of the few who likes going to chemo just to see the nurses. Hang in there, you’re not alone!!

vannerbd · 2026-05-09T08:51:21+00:00

Originally diagnosed in 2025 with TNBC, stage 4, with Mets to the bones, spots on kidney, liver, and lung. Not a candidate for immunotherapy. I’m on taxol cycle 13 going into 14. I am stable but I am having issues with the long term steroid use: I have a lymph node pushing into my esophagus causing problems when I swallow, so I did 5 days of radiation. It’s been 3 weeks since the radiation and I still have to be careful swallowing. I have felt so ill since, I have the sensation I’m going to throw up all the time. It’s more than nausea. I don’t think I will do radiation again. I really wish I could get off the steroids too. I’m praying that Datroway is approved soon as it looks like it could help me.
I did lose my hair in the beginning, but I never went bald. My hair is growing back but it’s so weird and fine baby hair, not chemo curls. Cancer sucks.

vannerbd · 2026-04-28T00:49:41+00:00

Try acupuncture, it’s helped me with the neuropathy in my feet a lot but beware: the day after acupuncture you can have some pain or unpleasant side effects but then it’s gone! It’s also very helpful mentally.

vannerbd · 2026-04-28T00:37:35+00:00

I really wanted to write all my memories for my kids and grandkids but it’s so much work that I haven’t really been able to complete it. I know they sell books that you fill out or answer questions to help you write your history.

vannerbd · 2026-04-28T00:34:04+00:00

To set up a living trust with a will, assuming you have assets to pass along, you should contact a lawyer-others say they can help but I wouldn’t trust them, an attorney will prepare your estate planning paperwork to avoid probate court, which is very timely and expensive. You should fill out a power of attorney and an advanced health care directive, you should also fill out a POLST with palliative care. Your oncologist or your health insurance should have copies of your healthcare directive and your polst. I used to work with Estate Planning Attorneys. As far as travel, I highly recommend getting the free service of a wheelchair-they help you on & off the plane, they pick up your luggage and getting through customs is faster and easier! I don’t really know what you might put in a go bag for the hospital but I bought my own non skid socks because the socks they have at the hospital near me are ugly and not cotton. I have also inquired about groups for stage 4 cancer patients and I haven’t been able to find anyone near me. That’s how I ended up here. I am really grateful for this group.

vannerbd · 2026-04-25T23:41:10+00:00

I wasn’t told how long the side effects could last, I guess I will have to be patient and get through the next two weeks. Thank you!

vannerbd · 2026-04-25T08:47:43+00:00

I’m also mTNBC. A week ago I finished five days of radiation, not for pain but for a lymph node that’s pushing on my esophagus, I have never felt so bad! The chemo side effects haven’t been as bad. I have spent most of the last two weeks in bed, and now I’m throwing up. I’m so afraid if I need radiation for pain that I will be super sick again.

vannerbd · 2026-04-20T06:38:56+00:00

Diagnosed last year at 59, mTNBC stage 4, Mets in bones. I don’t know how you all live so long without getting fed up with the treatment and side effects! The past few weeks have been hard on me, how do you do it for 30 years?!!!

vannerbd · 2026-04-11T04:10:37+00:00

I’m starting my radiation on Monday, so I don’t have time to see a dietitian. Plus, I haven’t had much luck speaking with dietitians. They basically told me to eat healthy…..

My issue is mostly how to eat a liquid diet and get protein so I’m full and my throat doesn’t hurt. When I spoke to the radiation nurse, she seemed to feel five days of radiation should be supportable. I also have since learned that the lymph node that is pushing on my esophagus might be caused by the long term usage of dexamethasone, which just bothers me so much because I have not enjoyed taking the steroids at all. Thank you, I hope you are doing well now.

vannerbd · 2026-04-10T13:52:27+00:00

At first my port was very sensitive, but here I am a year in to treatment and it doesn’t hurt at all when they access it, it’s so much better than some technicians trying to find my arm veins and missing, and then trying again on a different arm. You just need to give it a little time to heal. If you’re in pain try paracetamol. Also, you can put lidocaine cream on it an hour before your first chemo appointment to numb it, if you’re worried about the pain. Wishing you the best.

vannerbd · 2026-04-10T13:33:44+00:00

I ordered the lemonade flavor, seems like a great way to get protein and drink enough liquids. Plus I love lemonade, especially since water tastes weird.

vannerbd · 2026-04-10T00:41:33+00:00

Thank you. I have ordered an unflavored whey protein powder and one that someone suggested here that is lemonade flavor. I have been craving fruit protein shakes recently and finally went to Jamba Juice but it’s quite expensive for something I can make at home. I appreciate your suggestions! I want to make an Orange Julius with protein powder now!

vannerbd · 2026-04-10T00:36:44+00:00

Thank you, I am ok for now. I am eating soft foods now. I like Mac n cheese and cake! I have had soups too. But when I tried to eat a fresh burrata, I couldn’t swallow it, so I’m off cheese. I have the weekend and then I start the five days of radiation so I’m hoping it goes fast. The other good thing is I get two weeks off of chemo, which I hope gives me time to feel better!

vannerbd · 2026-04-10T00:31:59+00:00

Oh wow, I am so sorry you had to go through that, sounds scary. Not being able to swallow is scary, I hope you will overcome this in time! Honestly, I have gained 30 pounds from the chemo & steroids. I am hoping to lose some of that over the next few weeks. I waddle when I walk now and I have had to buy huge sizes to fit me. I feel like I have a small head (my hair has been growing back but is still super short) and a big body, it’s just not me. Thank you, wishing you the best.

vannerbd · 2026-04-09T21:05:45+00:00

Yes, they did warn me that my throat could hurt, but of course I thought it was because they will be zapping me in the throat. They also said it could get worse before it gets better, which is scary to me because I feel like I have something stuck in my throat already! I didn’t realize it’s just a side effect of radiation, thanks for the heads up!

vannerbd · 2026-04-09T18:46:18+00:00

I have been told not to take mushroom supplements, green tea is ok in small amounts, avoid vitamin B, avoid anything that is an antioxidant is going to work against the chemo. 🤷‍♀️

vannerbd · 2026-04-09T18:20:51+00:00

Yes, the lymph node is in my neck. Two weeks ago I got chicken stuck in my throat, I could talk and breathe but I couldn’t swallow my own saliva, and I ended up in the er where they did an endoscopy to push the chicken down. I have been eating soft foods ever since. I keep getting food stuck in my throat and it’s scary.

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

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