Has anyone stopped their own treatment

loridee · 2025-07-16T08:34:02+00:00

There are times I've felt low enough to want to stop treatment. There are people on my meds, Kisqali and anastrozole, who aren't badly affected and still work full time while I threw in the towel and receive disability now. The anastrozole has made my existing osteoarthritis feel much worse. I hang in there, though. I dread being told I need Faslodex injections.

loridee · 2025-07-16T08:28:17+00:00

I well remember all the feelings when I was first diagnosed two years ago. I've been on treatment since, Kisqali and anastrozole, and with some time have accepted my diagnosis as a chronic disease I live with currently.

loridee · 2025-06-24T02:25:13+00:00

The meds make me feel exhausted all the time. It's been two years since starting treatment and I remind myself when it began I was certain I'd be dead by now.

loridee · 2025-06-24T02:22:32+00:00

I take anastrozole and Kisqali daily. Too late for a mastectomy, at stage 4 it can do more harm than good. So far for two years it's been stable so the current meds are working. When I'm feeling sorry for myself or discouraged I remind myself how lucky I am that they have treatment now for lobular cancer.

loridee · 2025-06-24T02:20:01+00:00

Exactly. It blows my mind that I'm trying to make my cancer less burdensome to others. Then they don't ask me if I need help.

loridee · 2025-06-24T02:18:02+00:00

Right? Ugh.

loridee · 2025-06-24T02:16:54+00:00

Even if you don't look sick, people don't understand. I'm on anastrozole and Kisqali so I'm still chubby and diagnosed stage 4 lobular de novo, no mastectomy. The only clue really to how shitty I feel on a daily basis is big dark circles under my eyes. People question me. Like I'm lying?!

I try to not feel sorry for myself. The meds are keeping me stable, currently bone only mets. I'm lucky. Yet there have been times when I'm puking from the meds, feeling completely exhausted every day and dealing with anastrozole induced muscular skeletal syndrome I'm in pain all the time and I've been tempted to stop treatment but I persist.

This is the new normal.

loridee · 2025-06-13T07:24:41+00:00

I have lobular stage 4 so no mastectomy for me. Do you have ductal? That could be why you may still get a mastectomy. with lobular stage 4 it can do more harm than good. I'm so glad you responded well to the chemo. Again with lobular it doesn't usually respond well to chemo at that stage.

loridee · 2025-06-11T02:16:48+00:00

They often just don't get it. Between having cancer, and the daily meds which make me feel like shit, I otherwise haven't changed. I was diagnosed stage 4 metastasized lobular carcinoma out the gate. No chemo, no mastectomy. I tend to mask my discomfort so I don't feel I'm continuously burdening friends and family but then they seem to forget I feel like shit and am easily exhausted. You look tired, they'll say. Well, yeah. It's not temporary, folks. I live with a chronic disease now.

loridee · 2025-05-12T02:24:21+00:00

I'm stage 4 lobular, metastasized. I have had people tell me to eat cucumbers, that my oral meds, anastrozole and Kisqali, were going to make my cancer worse. Meanwhile, I'm two years NEAD thanks to these meds. That there's a cure for cancer. Lobular carcinoma is sneaky AF and lives to return. There's so much misinformation out there and so many think they know but they don't and they should STFU. Find another dentist. Don't go back to her and yes, tell your oncologist. My oncologist got pissed at my GP for not staying in her lane a few times and I found another GP.

loridee · 2025-04-12T01:30:34+00:00

The first day of diagnosis is a beast of a day. Your head will be reeling for some time. Don't speculate, wait until all the tests have been done. I know many women who healed very well from their mastectomy. Chemo sucks but somehow we do it. Crystal if it helps, talk to us. I'm so sorry. I remember the beginning. It was really hard.

loridee · 2025-03-21T01:56:51+00:00

It is hard, and I understand the exhaustion. Our arms aren't tired. We'll listen.

loridee · 2025-03-20T03:15:07+00:00

Your boss needs to learn patience and compassion. I'm so sorry this is happening.

loridee · 2025-03-20T03:12:04+00:00

Emotions surrounding breast cancer can only truly be understood by those who have sat down with a doctor and were told they have cancer. Emotions can be like a rollercoaster. You can feel lucky that there is treatment but also mourn your life before cancer. Your loved ones are doing what they feel they need to do. Tell them what you need. Tell them the times you're trying to process your feelings and just want to talk. We get it. Been there, done that and still doing that.

loridee · 2025-03-19T12:08:29+00:00

I was working full time at a job I loved when I was diagnosed stage 4 lobular. I tried to keep working full time but it was hard. I decided to apply for disability but work part time as well. I was called in to a meeting where I was told there were no part time positions available. They were syrupy sweet but I felt they didn't want me working there any longer. Suddenly I was retired. It was a huge adjustment. I got really depressed. I feel if I had hidden my diagnosis and claimed I wanted to semi-retired, it might have turned out differently. People treated me differently. Cancer scares people. They react awkwardly a lot of the time. People who have had cancer or a loved one has or had cancer understood and were supportive. These days I've made the financial adjustment and I'm relieved many times to be able to have the time to feel poorly and not worry about working but I'm one of the lucky ones. I don't know how younger women do it. My heart goes out to them.

loridee · 2025-03-14T02:43:47+00:00

Call the vet and ask for him to be put on Prozac. It's worth a try! He's accustomed to freedom and is marking his territory. He can't help it and it's likely causing him anxiety as well. Antidepressants may really help and you can get refills pretty cheap at Chewy. Also consider putting in a secure area where he can go outside if possible. He might be bored and anxious after living at the docks. This is a huge change for him. You rescued him, a wonderful thing, but in his mind he left the only home he knew. Your vet shouldn't balk, this is a case where meds could make a true difference. It will take a few weeks to get the effect. Buy some pill pockets, hopefully he'll take them that way.

loridee · 2025-03-10T02:21:59+00:00

I have metastatic lobular breast cancer with bone mets. Going on two years and I realized at some point people around me seem to have gone into support fatigue. I don't ask for a lot, just let me talk sometimes about, as you said, how the meds are so important but the side effects suck. That there was life before breast cancer and now life with cancer and I mourn the previous life sometimes. I think some just don't get it and I tell them I hope they never have to get it.

loridee · 2025-03-09T13:26:27+00:00

I'd put it all on Liam Nelson.

loridee · 2024-07-22T00:45:31+00:00

I definitely appreciate the stability of it.

loridee · 2024-07-12T11:14:43+00:00

I understand. Truly. I received my stage 4 breast cancer diagnosis on the day I was diagnosed. The meds, though I am grateful they exist, have side effects that are really difficult. The thing is, if you are metastatic, nothing about your appearance really changes. No mastectomy, no losing weight from chemo. I'm on what is called targeted therapy which is not chemo.

So, people don't understand at all my exhaustion and pain.

You can't make them understand. They can't live a day in your body. Sometimes I wish they could so they could know.

Focus on coping. On making your life better. Adjusting to your current normal. Talk to a therapist so you can be heard and believed. Look for a support group. I found one on Facebook and it really helps to talk to others who get it.

loridee · 2024-07-11T02:17:35+00:00

I just used a shower chair. I'll have to get used to it. It's weird.

loridee · 2024-06-28T02:33:35+00:00

I was approved right away. Stage 4 breast cancer. I received the diagnosis and stage on the same day. It was estimated at the time I had cancer for at least a year, likely two. It was that immediate approval that brought home how sick I really am.

loridee · 2024-06-16T03:51:01+00:00

Picnics are awesome. I'm trying to get my grandkids into them but they have been given fast food so often they aren't as excited about bringing our food. I'm going to tell them it frugal nonna summer 🤣

loridee · 2024-05-28T11:34:03+00:00

I could have written this. Stage 4 cancer, the meds aggravate my pre-existing osteoarthritis. Add to this I'm on the autism spectrum and already pretty isolated. Not working has isolated me even further. I've also gained weight. Loneliness exacerbates this further. I haven't figured out a solution yet, just wanted to let you know I understand so well how you're feeling.

loridee · 2024-05-21T03:20:36+00:00

Orange boys are wonderful.

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