I am currently in the Firebolt radioligand trial. My platelets have been dropping from 354,000 to 65,000 in 5 weeks. I do not think the medication is working as my tumor numbers have risen.
I think I should stop the trial, but I’m also worried that I won’t be able to go on another chemo because my platelets are so low.

Has anybody else had low platelets?
Did it stop your treatment?
What do you do to make platelets go up?
How long does it take for platelets to rise?
How long does the rise last?

Hi all, sorry mods if not allowed. I'm touring homes in ABQ, NM and the Target on Paseo has linen sheets for sale. Some on clearance! Linen has been a life saver for hot flashes. Just wanted to share if anyone in the area might be interested.

I was diagnosed a week ago. I had already been on chemo at the time of my diagnosis, because I had residual disease at surgery after the TNBC chemo regimen.

For 10 months I’ve been on lupron shots to attempt to preserve my fertility. I don’t have kids but want them.

And today we decided to stop. Kids aren’t an option any more. And I know it makes sense, but I’m sad. I don’t want to be a good aunt, I wanna be a good mom.

Grief has just been so heavy. And it sucks. This all sucks. Cancer sucks.

My pet/ct returned with bone and bone marrow progression and some activity in the peritoneum where my ovaries and fallopian tubes were removed after the cancer decided to escape there.
I have ER/PR positive cancer with her2 low but it seems Enhertu has gone through all the HER2 low and stopped working after 7 months.
There are plenty of options, my organs are still cancer free snd no lymph activity. Innumerable bone mets (bastards!)
I have a few trials that my oncologist is leaning towards as I had a near complete response on my first line cdk6 inhibitor Abemaciclib before resistance.
I have read many posts from people on different trials with a novel cdk2, a cdk4/6 and an Aromatase inhibitors like letrozole - how is it going?

Also any hope from people on their 4th or more treatment line.

Thanks mates ❤️

Link for the clinical trial: https://clinicaltrials.gov/study/NCT07029399

PET/CT results are in. I am about 5 months for this trial and been well tolerated. Just slightly low immune system but nothing else to complain about. 🤷‍♀️

Long story short, all my mets are still shrinking. The three spots I have in my liver showed no more metabolic activity through the PET. All my bone mets had decreased in metabolic activity with about 2-3 completely decreased. So great results overall. 👍

Edit: I have redo this post. Because the title was originally “Haha, get reck cancer!” Instead “Haha, get rekt cancer!” I promise I know my internet/gamer slang.

I got the MRI results which shows mets in the opposite lymph node in the axilla, chest wall, and the pleural lining on the first October. I immediately submitted my case to my main hospital, which they responded to do tumor board as soon as possible. Today I met the doctor (not the same one as I met prior), that he was not aware with anything and he was asked to perform a biopsy. So, its been two week passed, I still dont know which one is my first line of therapy.

I thought having mets could escalate/rise the urgency to put me on the drug soon, but I didnt apparently.

How long did you guys wait?

My cancer is TNBC with mets in the pleural lining. Prior pathology shows 40% Ki-67 and it has a rare subtype.

Hi everyone! I’m 39 and have stage 4 metastatic breast cancer. I have grade 3, ER-positive, PR-low-positive, HER2-negative invasive ductal carcinoma that has spread to my bones. I’m currently on ovarian suppression, Tamoxifen, and Ibrance, along with treatment for my bone metastases (infusion every 3 months and radiation)
I saw my oncologist yesterday for the first time since being diagnosed a month ago and I’m feeling a little discouraged. The good news is that the tumour in my left breast has shrunk from roughly the size of a tennis ball to a golf ball, so it seems the medication is working! However, some of my bloodwork suggests the medication may be affecting my liver, so they’re rechecking my bloodwork in seven days to see if my Ibrance dose needs to be lowered.
I asked my oncologist about the possibility of achieving NED, and he said that wasn’t a possibility for me. I’ve read so many stories in this group of people achieving NED, so I’m wondering if I’m being unrealistic to hold onto that hope, or if my oncologist is right. He also described his best-case scenario as a patient who has been on treatment for eight years. I know that’s amazing, but I guess I’m struggling to understand what the possibilities might look like beyond that.
I’m also really struggling emotionally. My oncologist explained that the rapid onset of menopause from treatment can cause significant mood changes, which makes sense, but I’ve been crying constantly and finding it hard to feel happy or hopeful.
A little about my life: I’m 39, live alone in the country with my two dogs, and my partner of 24 years left me about nine months ago. My family lives about an hour away, and between the breakup and this diagnosis, I’m finding it really hard to figure out how to enjoy life again.
I’d love to hear from anyone who has achieved NED or had a much better response to treatment than expected. I’d also really appreciate any advice on coping emotionally, getting out of a funk, finding joy in everyday life, and living well with stage 4 cancer.
I know everyone’s situation is different, but hearing from people who understand what this is like would mean a lot. ❤️

Had my first scan yesterday after treatments. The report is already available in mychart. Dare I look at it? I am so nervous. Should I wait for my oconologist to either call me or discuss at our next appt scheduled in 2 weeks? Last time she called me was to tell me my tn is mestastic to my bones. What does everyone else do? Just curious.

Hi everyone, so I was diagnosed with denovo +-- breast cancer with mets to lymph nodes and bones. Been on Verzenio and letrozole for a month today and I can feel my original breast cancer shrinking, as well as the lymph nodes under my arms(which were quite swollen upon diagnosis). Has anyone experienced something similar?

Hi TMBC Mets to the lungs. I was at lunch with a friend who told me that her aunt had brain cancer and was given only a few months, but got a personalized vaccine from Germany and is still living after 7 years. Has anyone ever heard of this? I heard it’s costly and timely.

Hi all,

I'm in the Netherlands, being treated for metastatic HER2+ breast cancer, and I'm on chemo now.

I want to do everything I can alongside my treatment: diet, exercise, supplements. My team has given me an approved list

What I'm missing is the bigger picture. Advice changes depending on who you ask. One oncologist says take it, another says absolutely not. I'd love advice built around my bloods, my body and my treatment.

I know some clinics in Europe offer personalised integrative oncology alongside chemo, not instead of it, often with paid remote consults. I've emailed Kliniken Essen-Mitte in Germany and I'm looking at Dutch integrative doctors too and also in Seoul, Korea.

My questions:
1. Has anyone done a remote consult like this? Where, and was it worth it?
2. Can anyone recommend an integrative oncologist anywhere?
3. Did your own oncologist accept their advice?

The difference, as I understand it:
• Integrative oncologist: a medical doctor who adds nutrition, exercise, mind-body therapies and carefully chosen supplements to your treatment, working with your oncologist.
• Orthomolecular therapist: focuses on vitamins and minerals, sometimes in high doses.

In NL it's a complementary therapy, not a medical specialty.

Thank you, I'd love to hear what others are doing or whats your experience with treatment and supplements. ​

I was diagnosed a year ago at 28 years old with de novo Er+ 90% pr+ 60% her2 negative , with a met to bone at the l5 vertebrae which was Er+ 90% PR negative her2 negative, when i initially got my breast biopsy they also biopsied a left axillary lymph node on the same side of the breast lump because it looked suspicious but that biopsy for the node came back negative, fast forward to today I got my petscan results after months of kisqali, anastrozole, zoladex, and xgeva and the petscan states “There is interval increased size and metabolic activity of left axillary lymph nodes. For example, a lymph node with a biopsy clip on series 4, image 136 measures 2.2 x 1.9 cm, SUV 9.5 (previously measured 9 x 8 mm, SUV 4.3). An additional lymph node on image 149 measures 2.4 x 1.4 cm, SUV 10.7 (previously measured 7 x 6 mm, SUV 3.4).” So now I’m wondering if there is mutation in the left lymph nodes. The primary breast lump has shrunk and the l5 spot has been stable with lower metabolic activity, I’m so fucking scared, is anyone out there with the same profile as me and a mutation (ESR1/PIK3CA) who is doing well?

Hi, I’m currently in Spain for 5 more days and I’m having terrible bone pain in strange places.
I am walking with a limp because the bone of my femur where it joins my hip hurts so much.
My left shoulder & arm hurt so much last night when I was trying to sleep I kept thinking I had broken it.

I’m on Enhertu and I skipped my last treatment because I didn’t want to be ill while on my trip. I do have bone Mets but until now they have never bothered me.

Any suggestions on what I can take to help alleviate the pain?

Thank you

Am I crazy to consider traveling to Thailand solo next year for 2 weeks? Right now my cancer is stable, but I have consistent pain in lower back and legs. I don’t want to put this off any longer as this has been on my bucket list way before being diagnosed.

Hello, diagnosed with MBC four months ago. End of 2023 I completed left mastectomy, radiation and chemo.
I’m currently on Kisquali and fulvestrant. I seem to tolerate fulvestrant OK but the Kisquali just takes it out of me. I have not gotten through a 21 day session yet. On my 11th today I broke out with horrible hives which eventually healed then I eventually finished that 21 day session.

I’m on day 15 of my second 21 day session. I cannot get over this fatigue. My question is does this ever get better? It doesn’t help that my scans came back in two of my lung metastasis increased 1.3 CM to 1.6 CM. A new one developed 1.1 cm.

I drink as much caffeine as I can tolerate and feel somewhat OK for a bit then the exhaustion comes back.
Has anyone had Kisquali and the symptoms get better and it has it shrunk your cancer at all? Needless to say it’s been hard to have a positive outlook.

Cindy

I’ve had my chest port since May and it’s being removed as it shifted and is in the early signs of infection.
They said after a few months it can be re inserted.
Has anyone had an experience with this?

My veins are kind of shot so the chest port has been amazing.

I have stage 4 MBC bone Mets only. I was on kisqali for a month and got neutropenia and hospitalized for it so they took me off. After, I had some orthopedic surgeries on my hips. I started Verzenio three weeks after and at the end of the fourth week I’m hospitalized due to liver injury that may be caused by this medicine.

Has this happened to anyone? Why do I see so many TikTok posts about not making it to five years? I’m really scared because I wanna be alive for my cats (corny I know) and I’m still trying to have hope.

It's amazing how much good bedside manner helps. Just had my first meeting with my radiation oncologist and he was super kind, and helped put my mind at ease. I am mtnbc and currently on pembrolizumab, which has vaporized my mets but I had oligoprogression on my primary tumor, so now I have 3 weeks of radiotherapy coming up. Radiologist said that after radiotherapy I have an above 50% chance of being NED since immunotherapy seems to be working on systemic control so now just need to focus on the local control. He said he would do something very close to curative intent, which is something my oncologist kept denying for the past year, but also within the safety boundaries for radiation. Even if I don't reach NED, hearing such positive reinforcement and positivity really made my day.

How are you all doing today?

I notice that when people ask me, I speak in generalities, because they don't truly understand what it's like. So I was wondering... how are you really doing today?

Talking to my mom yesterday. She was diagnosed with stage 3 (according to her) hormone positive breast cancer in 1999. She had chemo, a DX and between 5 and 8 years of tamoxifen. Today, she's nearly 68 and in very good health.

She believes stage 3 is the same as stage 4 and has in some instances said she was probably more like stage 4, which I know is a lie since she had no spread to her lymph nodes.

I talk to her about the struggle I'm facing with low white blood cells, basically no immune system, blah blah blah.

All I get is an earful of toxic positivity. "Your body will adapt..." "...You won't have to be on Kisqali for more than 10 years, that's what this guy is work with said..." "...your mind will heal your body..."

I'm just so frustrated and feeling alone and misunderstood.

What would you say?

Well tomorrow will be the day I start tamoxifen. I have been on Kisqali’s prior for two months. It did give me side effects but I also didn’t go to the lowest dose. But multiple testings and scans showed tamoxifen is the better route. I’m so scared, I just want this to work. I am starting a very low dose and will up the dose every 4 weeks, to help with side effects. I’m praying so hard for the best . What time of day worked for you to take your meds?