Metastatic Breast Cancer: Really want and need to connect with others

@cdammen
I also take 5mg Melatonin. It takes about an hour after I take it to go to sleep. If I wake up at night and cannot go to sleep I take another one. We are retired so I don't worry about what time I wake up. My oncologist doesn't have a problem with the meds. Considering the cancer drugs I take I'm not concerned about this one.

@wandering I take a lot more to sleep than you do but I am working on it.

@wandering What are the infusions you speak of, what drug? I too have been on pills, and shots, and now Tamoxifen, but lowering the dose. The earlier drugs had detrimental effects on my heart (blood pressure) and legs, possibly giving me venous insufficiency & swollen feet.
I've about given up on hormone blockers, they just give me more ailments than I had.

@jardinera25
My infusion drug is Trodelvy. They have a pretty good website you can look at which calls for an infusion at 1 day, 8 days, a week off and another infusion. I am currently on a two week cycle. Not sure if I will stay on that since my tumor markers have gone up but my scans are really good. I have had some side effects but that is normal for me. My infusion day is pretty long since it takes about 3 hours but I can deal with it. I can take a nap during that time and I get an ice cream. I have about 1 hour between labs and the start of my doctor visit and infusion. I usually do some grocery shopping during that time. We live 50 miles from town so I maximize my time in town. I get a good heads up on my schedule (they set me up at least a week to two weeks in advance) so I can make arrangements for my trips into town. Best of luck with your treatments. PS: Gilead, the manufacturer of Trodelvy, has a patient assistance program, which may be able to help you with your copay. My copay was $2200 which for me is not affordable.

@sthrush I originally was diagnosed in 2012 TNBC but it came back in 2020-21. All metastatic cancers are Stage 4. Re: sleeping - I also use 10 mg melatonin. I rarely have trouble getting to sleep but I need to use the bathroom multiple times during the night. When I get up I drink a couple sips of “sleepy time “ tea and that help me fall back to sleep. Also a use a clock radio on low volume. Just enough noise to block out my tinnitus and wild and non stop thoughts. If I want to remember something I write it down so it can leave my brain and I will not obsess over it.

@wandering
I am taking Kisquali and Fulvestrant right now. It does seem to be working. I am getting scan again next month as my PER scan this month showed both signs of healing, and a little progression. One area we are watching is the possibility of cancer cells in a swollen lymph node. The hypermetabolic activity in the lymph node could be cancer but may not be we will check it again in a month. If it is then that means it is not just bone mattresses, but also in soft tissue. My other organs do not show any signs of tumors. We are watching things very closely.

It sounds like your oncologist is keeping on top of your disease. This is great. we need that. I saw my oncologist yesterday. She said my scans showed no progression but is concerned about my low platelet count. we will keep an eye on that for the future. Thanks for keeping in touch. It is nice to hear from others. Jackie

I like having a group I can relate to as well. This is scary and there are a lot of considerations and decisions to make. All the meds cause side effects, some are more easily managed than others. Fatigue, nausea, and water tasting like metal are the ones I am facing now.

@wandering
Trodelvy may be in my future as well as Truqab. What side effects did you experience?
I am thrilled to hear you were diagnosed 12 years ago! That gives me such hope and optimism. Thank you! When first diagnosed in August '25 I thought I had to plan my funeral.

Although I am Stage 4 with lung ( Pleural effusion ) and liver nodes, I am symptom free and am being closely followed with imaging every 3 months. I am on an androgen blocker experiment-the reasoning being my cancer has always been strongly AR+ even when it was estrogen receptor positive. Although the cancer has changed to TNBC, it remains strongly AR+.
I emphasize the joy in my life and remain optimistic. Your message has really helped. Much gratitude, thank you.

@olivia7850
This forum is so helpful to me. Recently joined as I felt so atypical. Your post made me feel so understood and not like an outlier.
Like you I was diagnosed April '22. Because of my daughter's wedding, it was approved to postpone workup.
Lumpectomy in June '22
Originally thought to be TNBC with oncotype 28, was started on chemo ( cyclophosphamide, 5FU. Methotrexate) followed by Taxol. ( dose dense because I just couldn't bare 12 more infusions). Mammo after chemo in December '22 was positive for the first time ever! [Diagnosis for this evasive lobular was originally found by routine ultrasound because dense breast tissue]. Proceeded to full mastectomy of right breast Jan '23. Then 30 sessions of radiation.
Tried anastrozole, Letrozole, Tamoxifen unable to tolerate. Never able to start CDK 4/6 inhibitors. Meanwhile had successful DIEP flap reconstruction.
Thought was "over the hump" in '25 August when contralateral lymph nodes found on routine exam. Now the whirlwind starts. Found at Mayo to have pleural effusion and liver nodes, stage 4.
Am currently feeling well and symptom free and on close monitoring. Truqap and /or Trodelvy may be on the horizon. My cancer is pleomorphic. Originally low ER then unstained slide showed ER+ , now I am TNBC. I have always been androgen receptor positive so am trying an AR blocker now with the hopes it will be as effective as ER blockers are for ER+ cancer.

Any advice welcomed. I understand your frustrating course and I wish you the very best. Thank you for your post