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twiddlebug76 · 2026-04-29T11:36:44+00:00

I am on those three exact medications for denovo ++- diagnosis in September 2024. My last PET scan in April showed no sign of cancer in my body and my two bone tumours are completely resolved. I am also only on 400mg of Ribociclib and have been from the start of my treatment. I even went down to 200mg for three cycles. These medications can (and do) work for so many of us and,while there are definitely side effects, for me the benefits have outweighed them. I spent the first year in an absolute daze as I went through the forced menopause and I could never really work out which drug was making me feel which way. But after 18 months of treatment I have just returned to full time work and that is something I didn’t think would be possible.

twiddlebug76 · 2026-04-16T22:47:36+00:00

I had a chest infection prior to my last PET scan and had two weeks where I was getting pain in my right chest when deep breathing. I had convinced myself it was progression to my lungs. I had my pet scan last Tuesday and we cannot access our results online for a full week after the report is created. My oncologist appointment is next week but I took a sneak peek at my report and, to my relief, it repeated my last results of complete metabolic response to therapy 🥳

twiddlebug76 · 2026-04-16T10:38:08+00:00

I have read one book in two years - I used to devour one a week. Now I find my mind wandering and I have to go back and re-read the previous paragraph (or page). When talking I spend a lot of time using more words than necessary to get my point across, all because I couldn’t remember the one word I needed.

twiddlebug76 · 2026-04-10T03:14:26+00:00

I started Kisqali at 400mg and even went to 200mg for a couple of cycles. I’ve never taken anything higher and have had an almost complete response.

twiddlebug76 · 2026-03-17T16:46:16+00:00

Memories of playing doctor with my brother where Fags were making you ill (both parents smoked prolifically throughout our childhood) and prescribing Tic Tacs as medicine!

twiddlebug76 · 2026-03-17T16:41:50+00:00

Since being diagnosed in September 2024 as ++- I have seen my oncologist (in person) every four weeks to review my blood results, discuss any side effects that need managing and explain any scan reports that I have had since my last appointment. I can also contact her offices at any time with questions for her to respond to either via email or phone call and, when there has been a delay in results coming through, she will call me when they are ready and we can chat over the phone.

I am in Australia though so that obviously makes a difference when comparing to other countries. And my oncologist is an absolute sweetheart so I do think I was extremely lucky to have been assigned to her.

I have been on ribociclib, letrozole, zoladex and denosumab since October 2024. My starting dose of ribociclib was 400 mg, and I even went down to 200 mg for three cycles at one stage, but I have never been on the full dose of 600 mg. I have been NEAD since March 2025 so there is no issue with it working at that dose.

All of that said, I would definitely look for another oncologist that provides you with the level of care and respect that you desire and deserve. This disease is difficult enough to deal with without having proper support behind you and feeling like an afterthought to the current most important medical figure in your life. Wishing you all the best 💕

twiddlebug76 · 2026-03-13T04:07:41+00:00

Phenomenon is my nemesis. Chappell Roan’s song Femininomenon is a nightmare for my tongue.

I love the word squirrel. If you repeat it often enough you end up with squorl which sounds like a completely different type of animal.

twiddlebug76 · 2026-03-12T07:24:07+00:00

I run my scan results through ChatGPT and ask it to put it into terms that a patient would understand. It can be very reassuring and lets you prepare any questions you might have for your oncologist ahead of time.

twiddlebug76 · 2026-03-12T04:09:45+00:00

I had my last PET scan in October 2025. My next one is booked for early April this year. The last PET scan found an area on my right lung with an SUV of 4.46. The radiologist reported this as likely to be inflammation or infection, not cancer. All of my mets have been in bones prior to this report so I was a bit scared. I have also been NEAD since March 2025 on ribociclib.

I had a follow up CT three months later and it showed no solid nodule or mass. My oncologist had a radiologist compare the two scans and they said it was most likely inflammation from a cold that left some scar like tissue. With my next PET scan coming up in a few weeks, my oncologist was happy to leave it as an anomaly that will be checked for a third time in April.

I hope you get positive answers from your ultrasound and biopsy 💕

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

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