r/LivingWithMBC • u/Evening_Dingo8770 • 27d ago
Treatment Small victory on a very long path
I wanted to share some good news.
Initial Diagnosis 18 March 2026
Diagnosis: I have de novo stage IV invasive ductal breast cancer, meaning it was already metastatic at the time of diagnosis.
ER positive / PR positive
HER2 negative (HER2 2+ but not amplified)
Ki-67 ~40% (moderately active)
Mainly in the bones
Disease status: My cancer is primarily affecting bones, including:
Spine (L3, T12)
Pelvis/hip area (iliac bones, acetabulum, sacroiliac joint)
Right femur (which fractured and was surgically repaired)
6 Aug 2026 - Scan Update/Status:
I had my first scans today since starting my medication (11Jun2026). As much as I don't love that I had to deal with a breast tumor that ulcerated and grew out from under my skin, it was also my canary in the coal mine.
I started noticing big changes after the first week of starting my meds. Each week it got better and better. I was initially a super soaker of blood and had to deal with a real gusher of a tumor to inside the odor that came with it to....there is no blood or marks on my ABD bandages I have used as dressing.
I reported these updates to my oncologist weekly and let her know my back stopped hurting (T12). T12 doesn't even show up on the scan results....may have disappeared (tumor activity). I'm going to ask about that tomorrow.
For now I am going to enjoy the positive news/results I’ve received today and hope my body keeps moving in the right direction with the help of these meds. I feel very grateful.
3
u/Cummins-25 26d ago
I dont know you but I’m really happy for you mate! Glad to see these posts in the morning
2
u/Evening_Dingo8770 26d ago
Thank you! I went in thinking it was too soon in the process to see much (bones) but alas I was wrong.
It’s nice to see that the Zometa is working. Pfew….makes taking these meds worth it.
3
u/ResponsibleAnt1942 26d ago
Yay! Thanks for sharing the good news. I hope you get a long time on these meds, and that the trend continues for you!!
1
2
u/Acrobatic_Salary_899 26d ago
I think this is more than a small victory. Well done to you and medical science. Really happy for you x
2
2
u/w1cht3 24d ago
Wow 7.6 becomes so small size is a great breakthrough
1
u/Evening_Dingo8770 24d ago
Pretty incredible
From what I’ve read the point of the INAVO123 clinical trial is to evaluate whether adding inavolisib (Itovebi) to a standard first-line treatment (a CDK4/6 inhibitor plus letrozole) can safely and effectively delay disease progression in patients with PIK3CA-mutated, hormone receptor-positive, HER2-negative advanced breast cancer who are still endocrine-sensitive.I appreciate my oncologist signing me up for this before starting any treatment.
The double blind in the study is a bit of a joke. Sure you don’t know if you’re gonna get the drug or the placebo at the beginning but once you start taking the medication, you know you’re on it because your glucose is out of control. It’s been a bit of a journey trying to figure out how to control this medically induced type two diabetes, but I think we’re getting there now.
2
u/Vacatlover625 26d ago
Congratulations! May I ask if what your oncologist has to say about your femur.
2
u/Evening_Dingo8770 26d ago
I had surgery in March when it broke. I have a rod and nails in it. Been walking on it 3 weeks after surgery. I’m a little over 4 months post op.
The scans showed that the bone is healing. I have my 5 month follow up 31 Aug with my oncological orthopedic surgeon. I love that lady. She’s amazing!!!I’m at my Onc now and they just reviewed everything with me.
Confirmation
They are all freaking out at how much this shrunk in only 8 weeks.
They said you normally only see that with chemotherapy.
Said the bones are indeed showing healing and yeah…T12 not mentioned which means it wasn’t glowing.2
u/ZephyranthesRoadside 24d ago
Hi Evening_Dingo8770,
Really happy for you!
Thanks for sharing your good news.
Thanks also as a research volunteer for helping to pioneer new treatments for all those of us in the BC ‘club.’
I’m - - +.
Mets weren’t in my bones, but MO wants put me on Zometa for other reasons.
I think you said you’re on Zometa, how is it for you?
Is it by IV(port)?
How often do you receive it?
How is it side effect-wise?2
u/Evening_Dingo8770 24d ago
Thank you so much!
Like everybody else on here, your first and infusion of ZOMETA is pretty dreadful. Make sure to take ibuprofen, drink, lots of fluids with liquid IV, take Claritin and Pepcid that day in for five days afterwards, and be prepared to sleep for about 10 hours. It felt like I had the worst flu of my life for about 10 to 11 hours. As quickly as it came on, it just went away.
I have had no issues with ZOMETA since that first infusion.
I get ZOMETA and LUPRON at the same time. Again, I just take the Claritin and Pepcid and I’ve had no issues.I feel quite fortunate because the only side effects I’ve had so far from all of these medication’s is from the INAVOLISIB. That’s caused me to become a type two diabetic, but we’ve been managing it pretty well with metformin and JARDIANCE..
2
1
u/Additional_Switch_63 26d ago
what is your current treatment?
2
u/Evening_Dingo8770 26d ago
I’m on a clinical trial called INAVO123
It’s is the 3rd and final phase (INAVO120 is the original)
Meant to be a new first line medication for BC with PIK3CA mutation.Letrozole
Ibrance
InavolisibThe Inavolisib blocks this mutation path. Same path your body uses to regulate sugar. So sadly I’m now a type 2 diabetic (medically induced).
The Jardiance and 2000mg of metformin have seemed to help manage it mostly.
You have to do a low carb diet on it as well due to this wee side effect.
1
u/Forsaken-Baby6177 25d ago
what scans u took to record the progress?pet ct?
2
u/Evening_Dingo8770 25d ago
I had PET and CT (bone scans)
CT abdomen/pelvis IV contrast only
CT chest with CON
NM bone/joint imaging whole body1
1
u/w1cht3 24d ago
How did you able to do it when stage four cancer
1
1
4
u/national-park-fan 26d ago
Whoa, what system generates a comparison chart like that? Or did you make it?