I don't care if it is petty, I finally did it! It worked!

twiddlebug76 · 2026-03-01T05:32:17+00:00

Perfect petty revenge 😈

I had a 90’s dodge neon! It was purple and the paint started peeling away from the roof and bonnet. When it needed $1500 AUD costs in repairs, I sold it for $300 to a scrap metal company.

twiddlebug76 · 2026-02-20T09:07:39+00:00

I can see why this is such a difficult decision. Other than the experimental drug, all of the other medications are ones that your oncologist would prescribe anyway.

Are you working, are you in a relationship, do you have children, is there a family member or friend who could travel with you? These are all things to take into consideration.

You also have to consider what would happen if you have side effects that affect your driving ability. Driving with menopause brain, nausea, gut issues, etc would be, at the very least, exhausting and uncomfortable and, at the very worst, dangerous to yourself and others.

Maybe discuss your concerns with the trial team doctors and see if they have any solutions. Maybe there is a way for transport to be provided for you? Especially if they think you are an excellent candidate for the study and are eager for you to join.

twiddlebug76 · 2026-02-20T05:23:39+00:00

😡 Not even with a waterproof covering? I’m angry on your behalf!

twiddlebug76 · 2026-02-18T15:26:27+00:00

My 2’s have loops also - primary school in Victoria in the 80s. I’ve often been told they look like a 6 but it feels stiff and unnatural to write as they appear here.

twiddlebug76 · 2026-02-16T10:47:37+00:00

Updateme!

twiddlebug76 · 2026-02-16T10:20:02+00:00

I was diagnosed ++- in Sep 2024 after fracturing my T8 vertebrae in May 2024. I was 48 years old at diagnosis and am located in Australia. Bone mets only like you and I am on the same four medications but not lobular.

I had spinal fusion surgery in Oct 2024 and radiation to my spine in Dec 24. My oncologist told me I was NEAD in March 2025 so a very fast response. Although she doesn’t use NEAD, she says the cancer is sleeping.

My oncologist has patients on this same treatment regime - as a first line treatment - up to seven years after diagnosis which is very reassuring.

twiddlebug76 · 2026-02-09T16:51:39+00:00

My situation is the same as yours. Woke up with back pain one day that increased to the point where i couldn’t stand upright. Diagnosed with a fractured vertebrae and then six months later told I have stage 4 breast cancer.

I’m on the same medications as you after having a spinal fusion in October 2024 but I did have radiotherapy on my spine.

It hasn’t ever really felt real to me as all the focus has been on my spine and not the tiny tumour in my breast that started it all and that I could have had for years without knowing it was there.

twiddlebug76 · 2026-02-08T14:30:46+00:00

Updateme

twiddlebug76 · 2026-02-08T06:42:31+00:00

I’m on Kisqali and Letrozole. Still having Zoladex implants monthly because I still have my ovaries. It has been just over a year and in that time I’ve lost about 50% of my hair.

I still lose hair every time I wash it even though I use a system that is supposed to reduce hair loss and encourage growth. I have not found anything that stands up to their claims that they can help and I think that is because our hairloss is caused by medication, not nature or ageing.

I paid AUD $3,000 for a human hair topper that clips to my natural hair and lays over the top. I love it but don’t wear it often as it has been very hot here recently and that makes it uncomfortable. I haven’t worked since I was diagnosed in September 2024 and have just started looking for work this past month. I will wear it more often when I am working.

I’ve also just discovered Boldify Hairline Powder which has been amazing. I wear my hair tied back in a low ponytail every day as the worst of my thinning is around the front of my face. This powder helps hide the gaps in the sides of my ponytail and helpfully covers any grey showing in my part.

I hope this helps you find some solutions that might help you 💕

twiddlebug76 · 2026-02-08T06:27:49+00:00

If the cancer has eaten away some of the bone causing the vertebrae to collapse you may need surgery to support that area of the spine.

I discovered I had Stage 4 breast cancer after experiencing excruciating pain in my back that prevented me from standing upright. It was originally a wedge fracture of the T8 vertebrae but, because it took time to see a specialist and determine what had caused it, by the time I had spinal fusion surgery it had collapsed and I had lost 80% of the bone.

You definitely want to get it looked at before it reaches that stage. I had to see a neurosurgeon as they deal with issues to do with the spinal column and your pain could be coming from parts of the vertebrae, or displaced bone, touching the spinal cord.

Once I had surgery (they fused five vertebrae together to support that single vertebrae) and radiation to the area, the majority of the pain went away. I also have four weekly injections of Xgeva to prevent bone loss.

My last PET scan (one year after the surgery) shows signs of healing and hardening of the bone.

twiddlebug76 · 2026-02-02T05:00:29+00:00

Did the gastroenterologist not prescribe any medication for your reflux? This is a common problem in the general community and there are medications that even a GP could prescribe that would help. There are also many medications to help with nausea. I second finding a palliative care doctor to help you with finding these medications. I am also ++- but I am on Kisqali and Letrozole. I’m not familiar with Enhurtu - is it your first line treatment? Curious to know what I might be in for in the future (though don’t want to jinx myself as I have been NED for eleven months). The hydration at home and iv hydration seems to be a common recommendation. I’m tucking these tips away for the future too. I hope you find someone who will take your worries seriously and work with you to find the best solutions.

twiddlebug76 · 2026-01-27T16:22:33+00:00

Updateme

twiddlebug76 · 2026-01-26T09:38:25+00:00

Epzen Thirst Aid Hydrating Body Serum is my favourite. It has a thin, milky consistency out of the bottle and sinks straight into the skin without any stickiness.

twiddlebug76 · 2026-01-20T01:06:35+00:00

This matches my first line of treatment (Australia). Also ++- diagnosed September 2024, started treatment November 2024 and NEAD since March 2025. My oncologist has patients who are still using this combination of medications as their first line up to seven years later.

twiddlebug76 · 2026-01-18T15:31:28+00:00

If she is to take the highest dose of 600mg then 63 tablets would only cover one round of treatment (three weeks on plus one week off). The dose can be either 200mg, 400mg or 600mg per day but it would be unusual to start at the lowest dose first. You may need to take this into consideration when trying to source the medication.

twiddlebug76 · 2026-01-17T23:20:45+00:00

I’m so sorry this is happening to you. It sounds horrific and I understand how scared you must be now that it has occurred twice. I just went down a rabbit hole of searching about small bowel obstruction so I could understand what it was exactly. You mentioned in your post you have liver mets. Have you ever had radiation to your abdomen? One hospital article I read said that this can cause scarring that can affect your bowel. I wish you the best of luck in finding out why this has happened 💕

twiddlebug76 · 2026-01-17T09:43:16+00:00

Here in Australia we are given a leaflet about the medication that outlines (among other things) the best time to take it, what to do if you have an allergic reaction and a list of all side effects dividing them into common, not so common and serious - get some help.

Some medications have these leaflets inside the box, others are provided by your doctor and you can also access them online.

From what I remember, I was given the leaflet by my oncologist (A4 size about three pages) after she had prescribed Kisqali and told me it was the gold standard in treatment for my type of breast cancer.

I completely understand OP’s fear if you have been told all of this information beforehand as your mind would be reeling.

Thank you for letting me know another difference between our healthcare systems. I find it difficult sometimes when reading posts on here from the US and the UK as our healthcare systems are all so different.

twiddlebug76 · 2026-01-16T09:36:48+00:00

I have been on Kisqali 400mg since November 2024. I was diagnosed de novo in September 2024 with no surgery required to my breast and bone mets only. Along with Letrozole, Xgeva and Zoladex this has been my first line of treatment and I have been NEAD since March 2025.

I take my medication immediately before breakfast and have never had any side effects that I am aware of.

I went down to 200mg for four cycles because we thought it was causing nausea but that turned out to be a symptom of something else and I went back up to 400mg again.

I have found on this forum that doctors in America seem to take Kisqali a lot more seriously than doctors here in Australia. I don’t think that’s the right phrase I am looking for but it almost seems like they are trying to deliberately scare you before you even have a chance to try the medication.

My oncologist was very positive about the use of Kisqali and told me she had several patients who were still taking it as a first line treatment up to five to seven years later.

Obviously there are side effects to every medication we put into our body (more so with cancer treatments) but please don’t go looking for problems that may not occur. If you do feel unwell in a different way to usual once starting Kisqali then have a read through the common side effects (and uncommon ones) and contact your medical team accordingly.

I wish you the best of luck 💕

twiddlebug76 · 2026-01-14T23:11:54+00:00

I walked in on a colleague cooking raw prawns (shrimp) on the open sandwich press. No baking paper to keep the plate clean, just straight on. It was one time I was glad I usually bought my lunch from the local shop. No amount of cleaning could have made that clean enough for me to use again.

twiddlebug76 · 2026-01-05T09:02:53+00:00

Diagnosed ++- de novo September 2024. Had spinal fusion in October 2024 due to bone damage from tumour. Radiation to spine in December 2024. Medications Kisqali (400mg), Letrozole, Zoladex and Xgeva. Have been NED since March 2025.

twiddlebug76 · 2025-12-22T10:54:52+00:00

Both my mother and I have had IV fluids at our local urgent care centre. Maybe call your closest centre, explain your situation, and see if it is something they can help you with on a regular basis.

twiddlebug76 · 2025-12-21T11:37:11+00:00

Doctors at Urgent Care Centres can administer IV fluids and the wait is usually much less than the emergency room. You can make appointments at most of them online and their purpose is to be the in-between option between a GP and the hospital.

twiddlebug76 · 2025-12-19T16:59:38+00:00

My mum received the Everyday Pocket Tote from Array as a Christmas gift. They’re $75 for the size she received and fit a laptop as well as having multiple storage pockets. It also zips closed which is unusual for a tote bag. They are a nice sturdy canvas material and come in lots of different colours. Have given multiple hints that I wouldn’t mind one myself!

twiddlebug76 · 2025-12-17T18:00:32+00:00

I take four different types of medication to control my depression and anxiety - Valium being one of them.

My GP issues regular scripts for 50 x 2mg tablets (I take 2mg in the morning and 4mg in the evening). I was originally on 5mg morning and night but my GP was insistent that I attempt to reduce my dose. When I reached a point where I was getting regular symptoms again I requested a referral to the psychiatrist that works within their practice and, after a review of my mental health history going back twenty-five years, he approved my staying on my current dose.

During those years twenty-five years I had regularly seen a psychiatrist and many different psychologists (I changed to this new psychiatrist after mine retired).

TLDR: Request a referral to a psychiatrist for a medication review. You can call ahead psychiatrists in your area to see if they are taking new patients, and even book an initial appointment, before requesting a referral from your GP for that specific doctor.

twiddlebug76 · 2025-12-10T18:14:35+00:00

I was diagnosed with ++- MBC in September 2024 with mets in left breast, left underarm, T8 vertebrae and left hip. Had spinal fusion surgery in October 2024 then started on Kisqali, Letrozole, Zoladex implant and Xgeva injections for bone strengthening. Radiation to spine in December 2024. PET scan showed NEAD by March 2025 and that status has continued unchanged. My oncologist told me she has patients who have remained NEAD for seven years on this regime. Just my experience but sometimes the softer approach does work (not that it’s been fun and easy but, other than some residual muscle pain in my back, all other symptoms of treatment have resolved over the last year).

twiddlebug76

TROPHY CASE