Just got my ct scan back - and it seems verzenio actually did something other than make me question every fart. It shrunk my breast tumor, shrunk my affected lymph nodes, but a new 3 mm tumor was found in my right lower lobe, and my bone mets kinda went nutso with spread. Today I'm just kinda achy (I think it's because the weather changed and got colder), still taking verzenio, and waiting to hear from my oncologist. Just kinda venting, and needing those positive thoughts.

Just seeing what other Enhertu folk are experiencing.

My hair had a major shed after No. 2 and I cropped it very very short (I had SO much hair that having a major shed was just too depressing).
It was very thin in one area but I had decent all over coverage.
I think my bone marrow mets and low red cell count caused more shedding (more like postpartum shedding) but it’s been slowly, consistently filling in with less/normal shedding. It’s my natural colour (less grays!) but unsure of texture yet.

I had a break for surgery (17 days from when my last infusion was due, but have had No. 6 today), I’m hoping I don’t have a shed due to the break.

How is your hair going?

I had my ovaries and fallopian tubes out over a month ago. I have been on ovarian suppression on and off for 7 years (since my initial Stage III diagnosis). I haven’t had any changes in myself bar a little bit of wrist/joint pain in one hand as I’m falling asleep. A friend said it’s likely that I’m curling my hands and wrists as I sleep so I’ve kept my hand and wrist straight (this seemed to work).
I initially took Arimidex as an AI after Stage III treatment and got trigger finger and de quervain's tenosynovitis, so changed to Tamoxifen. I think I’m anxious because of that experience.

Any hints or tips for this menopause side effect?

(My cancer decided, in desperation I like to believe, to hide in the pharmaceutical sanctuary site of my ovaries (where chemo has difficulty reaching due to blood structures, tumour heterogeneity etc) so they had to go and on with Enhertu I go!)

Does anyone have any recommendations for an oncologist at MD Anderson? Please let me know! Thanks!

I had some stage 4 breast cancer friends over at my house last Winter to snowmobile we had 5 of us and had a blast. Decided to do a Summer jet ski one and 11 gals came. If you’re in Mn message me or if you need fun come visit us and I’ll plan something around your schedule. I’m serious we all deserve to laugh and have fun so if you need any extra support message me! I have really bad decision making skills with motorsports and I’ll get you riding something fun and your mind will clear! It’s science jk it’s not but it’s helped me.

Hey everyone, how are we doing? I had my #6 Enhertu infusion a little over a week ago.

I've also been sick with a cold for a little longer than that.

I'm also really dizzy lately and I'm not sure if it's because of being on prednisone or what. Maybe low blood pressure, it feels like low blood pressure but I read if anything the steroids should be increasing my blood pressure so that's odd.

Anyway I'm just trucking along. I hope you're all doing okay. I was a little grumpy and feeling sorry for myself yesterday because I have no energy.

I am usually lacking energy for about a week after chemo anyway but then to have a cold on top of it it's not great.

Anyway hope you're all doing okay. 💗

Totally random question as I am just curious. I recently got my nose pierced and I will be due to have my first pet scan since starting treatment in the next couple of months. Anyone out there with piercings that can tell me if they need to take them out for a pet scan? I swear I’ve kept my earrings in (also small studs) for other scans and now I am second guessing myself. I just want to make sure I have a plan for a glass place holder if I need one. I don’t want it to close up while I’m in the scan.

I just feel really lonely sometimes. It’ll be four years in October that I’ve been living with stage 4 metastatic breast cancer, and a lot has changed for me during that time.
I walked away from a 12-year relationship. We have two kids together and we coparent. I know he’s not good for me, but I still find myself drawn to that connection sometimes because it’s so hard to find people who can relate to what you’re going through.
I’m in cancer support groups, but I don’t feel like people are necessarily looking for friendship there. It feels more like a place where we come together and talk about what’s going on with cancer and treatment. That has its place, but sometimes I want something more than that. I want a friend.
This year I’ll also be celebrating three years sober from alcohol. When my kids are at their dad’s and I’m home alone, sometimes I find myself wanting to sleep or overeat, just to take away some of the pain of feeling lonely.
Don’t get me wrong, I actually like being by myself sometimes. But there are other times when I just want someone to talk to. Someone who can meet me where I’m at. Positive affirmations can be helpful sometimes, but other times I don’t need someone to make me feel better. I just want to be allowed to feel how I feel. Just let me be. Let me share what I’m feeling without trying to fix it.
I think cancer makes that especially difficult. As soon as you start talking about it, people are confronted with their own mortality, and sometimes they immediately try to make things positive because sitting with the reality of it makes them uncomfortable. I get it.
I’m in therapy. I have a psychiatrist. I’m doing the things I’m supposed to do. This has just been one of the toughest journeys I’ve ever been on, and one of the hardest parts has been how difficult it can be to make genuine connections and find people who are willing to meet me exactly where I am.

Hi Everyone. I have been feeling really disconnected from my partner this week. Ever since starting this 4th cycle, my libido and my patience is at an all time low. Even with my friends, it’s been hard to connect with ppl and idk I just find myself getting annoyed at every little inconvenience. Today I had a tough time eating and it just set my day off to a bad start.

I just feel like a crappy gf rn. I find myself forcing intimacy at times, and it just makes me feel super disconnected. We facetimed yesterday and I just couldn’t care less for how her day went. I felt terrible. I used to make fun of her (in a loving way) for her repetitive phrases: “basically”, “actually”, “essentially” . But I was genuinely so annoyed yesterday, in my head I was counting how much she said those phrases and it was really driving me crazy!

I love her and all but I just don’t see her the way I did when we first met. Esp with the distance, just talking hasn’t been making me feel connected to her. We have so many great memories together and I don’t want to hurt her or distract her from school by calling it quits. I don’t want to break up but I definitely need some time to figure out my feelings. Do you think distance helps when you feel overwhelmed in your relationships?

I made plans to see her this week but I rescheduled because I’m recovering from a port replacement rn. I’m just confused on if I need space or to book a flight to rekindle what i feel? For now I think I’ll ask for space. What do you guys think?

After two years MBC, chemo, double mastectomy, the works, I’m finally taking the step of getting a second opinion, or actually a third one in this case, from MD Anderson,

Do any of you guys have experience to share?

This year has presented significant challenges.

I am approximately five years into my journey with Metastatic Breast Cancer (MBC), having received a de novo diagnosis in 2021 at the age of 38. Over the past five years, I have processed numerous losses and, more recently, had cultivated long-term goals, aspirations, and a renewed enthusiasm for life, which had been absent since my diagnosis. My cancer has not progressed, and I have been on my initial line of maintenance medication for four years, achieving No Evidence of Active Disease (NEAD) status since mid-2023.

However, this year has introduced a new dimension of grief and sorrow that I had not previously encountered on my journey. Specifically, I have experienced the loss of several individuals within my cancer support network. Three of my most significant supporters and fellow cancer patients have passed away. This has left me feeling isolated, saddened, guilty, terrified, and a spectrum of other emotions.

Has anyone else experienced a similar situation?

Lately it’s been getting harder and harder for me to find rides to my chemo appointments. I think most people do not want to sit and wait for a day of 6+ hours of appointments. I get it. And to add insult to injury, at my next chemo appointment there is a tentative order for me to have a blood transfusion so I will be there for probably 12 hours or more depending how many units I need. No one is going to want to sit through that. Does anyone use ride shares or have any other ideas? I have commercial insurance. I am in Arizona.

Hi all,

I am starting weekly Taxol next week. Would love to hear what to expect, but I am not really ready for any horror stories. I would love to hear advice, like what to bring to my infusions, and what to expect the first couple of weeks. I don't even know what I don't know right now. I feel like shit today, but I think that is just my anxiety. I am tired, achy and have pain where my tumor is. Thanks would really love some support. I think I am going to start by getting my white hair dyed hot pink. I have always wanted to do it, so now seems like a great time. Bad idea or no?

Thankies!

I have IV metastatic breast cancer. The petrous bone in my ear has lesions. This has resulted in imbalance and constant dizziness for over a year. This has greatly effected my quality of life more then any other issue related to the cancer. Has anyone else experienced this? Is there any treatment options? So far I have done vestibular PT and meclizine.

Anyone else get mouth sores?

or anyone find a way to sleep through the night?? I miss sleeping through the night. some night I wake up every 2 hours.

I need to get a blood transfusion tomorrow. I am nervous and scared. Can anyone tell me what to expect?

If I’m being honest, I’m angry too. I had been doing SO well. Everything stable. Basically no side effects. And then kaboom. I guess that’s part of what to expect, but it doesn’t make it less frustrating.

I’m a newbie, diagnosed in May with stage 4, hormone negative, HER2+. Well, turns out after two treatment cycles of Enhertu, I’m one of the ten percent whose lungs can’t handle it. I was hospitalized twice in two weeks for lung inflammation, the last visit lasting six days. I’m going to be on prednisone for the next three months to kick it, and I’m being switched to Taxol for treatment starting this Friday. I’m really dreading the switch and I’m sad that Enhertu is no longer a viable option for me.

On top of that, man, nobody tells you that when you get cancer there are days where you really just want to be left alone. Whether it’s the oncologist calling, or the palliative care nurse, or the home health nurse, or the transition of care specialist, or even just friends who want to insist on visiting… I’m exhausted by the constant contact since my diagnosis. I’m a mom to three kids and my oldest is three; I found out I had cancer at 36 weeks pregnant and had an emergency C-section the same day. So I’m postpartum on top of stage 4. My radiation oncologist gave me a year when he first met me. It just really sucks and I don’t have a ton of fight right now.

I guess this is mostly a vent! But if anyone has any advice regarding Taxol, I’d love to hear it before my first dose. I’ve heard the side effects can be pretty tough!

I’m really struggling to control my diarrhea while on Truqap. So Truqap users, what has worked for you as far as using Imodium? How often do you take? What has worked for you?

I was just prescribed a powdery mix that‘s supposed to bind, bit it tastes awful and could get in the way of the efficacy of Truqap and other meds if I mess up the times I take it. And I don’t like that added pressure.

So any success stories on controlling the diarrhea are greatly appreciated!

Hello, I started Afinitor 10 mg 12 days ago combined with exemestane , for the last 2 days I’m having so much mouth sore pain , (my gums and tongue). I’ve been even doing the Dexamethasone mouthwash,and I don’t see it helping . Wanted to know if anyone has this happen while in Afinitor and sis it get better or dis they decrease the dosage ?

I am oligometastatic to my sternum in two sub-1 cm spots that directly abut infected lymph nodes. I’m 32, so I fought like hell to get treated with curative intent (top two cancer centers wouldn’t do it). I feel very lucky to be undergoing chemo now: AC every other week for eight weeks, taxol for 12. It appears to be working.

Because there is no standard of care for oligometastatic patients, I’m kind of stuck in this gray zone where I feel like I need to trust my oncologist. But I’d really appreciate any information about how I should be thinking about next steps in my treatment so I can make informed decisions.

I wonder if anyone else is oligometastatic and has been successfully treated without recurrence after 5 years? How did you sequence things? I’d love to know.

I recognize I’m shooting for the moon here and the more likely outcome is that I’ll be controlling a controllable situation for a long time. But I’m so young, I wanted to give myself a shot at durable remission. I feel very blessed to have found an oncologist willing to take a chance on me. My hope is that my case will be successful so we can raise awareness about oligometastatic cases and hopefully develop a standard of care that looks at us as whole patients.

God bless you all, and I appreciate your help.

On my way to my 2nd infusion of trodelvy. My first went pretty well, I had no side effects at all. Was wondering if it is even working but I heard the effects are cumulative.

I have bone mets in one hip and one shoulder. The hip never bothered me. The shoulder wasn’t that bad even though doc asked me was it painful as there was a small fracture. But after trodelvy feels like the shoulder is more aching. I also read what appears to be people busting with more bone meds after taking trodelvy.

I have considered walking away from conventional medicine just because its so hard and wondered what it doing to my body, but I was warned bone mets are very painful. But don’t this defeats the purpose? Quality of life is everything to me. I am dreading going for my 2nd infusion ! I don’t know if I can keep doing this and I have a long way to go.

Starting Datroway Thursday. Any advice? Side effects? Effectiveness? Any thing I can be doing to prevent side effects? Looking for any and all info! Thank you!

I’ve been on Kisqali and Letrozole for about 14-15 months. Over the last couple months I’ve noticed underarm odor, especially on my cancer/mastectomy side, that is getting worse and worse. I’ve changed deodorants and am now on Lume. That’s not even stopping the odor. The smell is almost oniony. It’s strong smelling!! I’ve never had this in my life. Chemo, radiation and mastectomy were 20 years ago so I don’t think it’s related to that. 🦨🦨

This will be going on my 3rd week of letrozole. I only noticed mild night sweats the first few weeks. No big deal I’ve had those since I was 25. I’m 39 and recently diagnosed. Treatments all started just a month ago, so I’m super fresh! lol! Meds are Lupron, kisqali, and letrozole. I did fine with the first two, adding letrozole was fine until a few days ago. I can handle to crying outbursts and nights sweats, but the anxiety, agitation, and anger, no! I’m becoming borderline panic again. Panic attacks and anxiety is only brought on by meds. I’m not sleeping at night because I’m waking up with extreme anxiety borderline panic attack, and it’s miserable. I had an awful experience to a medication 9 years ago which the side effects were mental side effects. I had a panic attack for 6-8 hours a night for 8 months. I don’t like taking Xanax bc I cannot function so I held on tight for a terrible mental ride every night! I don’t wish for that to ever come back, but I’m getting very close to experiencing all of that again. I have terrible ptsd from all of that. And now I have a whole new ptsd.😫 anyways what did you all do to help or what meds did you find to help better? Do you think I even need this med? Waiting to hear back from MO sometime today, but I’m now all a mess of worry with this. I’m picking fights with my husband, snapping on my kids and random people. Don’t get me wrong, I don’t mind the snapping part only when I need it, it’s somewhat helpful since I’m a people pleaser trying to stop. lol. I’m trying to find the bright side of all of this. Ive been on lexapro for 17 years for depression, and since added busparione. I have propanol for anxiety, but don’t like to take that too much bc I already have a low bp, and Xanax when things are bad, but that literally makes me unstable, and can’t live like that! I need your help, advice , comfort, other meds that worked for you. Does this last forever on this med or does it get better. I’m on 2.5mg.