Hello Thrivers I hope you are all going well.I had a bone biopsy last week, I can honestly say it was a horrible experience. One I hope never to repeat.
I have now been diagnosed with triple negative breast cancer.
My first diagnoses was er+pr+ her 2 negative. Mets to bones and liver last September.
Then I was told I had the pik3ca mutation. So after 3 lines, including 2 clinical trials, nothing was working.
So I requested another biopsy. Which i got my results over the phone by my nurse.
I find it hard that my cancer has changed, I am not sure if it's common.
I don't see my oncologist till Thursday when I start IV chemotherapy.
I was wondering if anyone has experienced change in their diagnoses and has anyone been on doxorubicin pegylated liposomal and how did you fair with side effects.
Thank you 😊 🩷🩷
Written by
Cherry38
To view profiles and participate in discussions please or .
Hi Cherry38, Yes I did experience a change from Triple Negative to ER+, PR-, HR-. Researchers now understand that breast cancer receptors change. The change in receptors simply changed the course of my treatment plan. My oncologist told me at the time of my reoccurrence that there was a lot of research underway to treat Triple Negative. He was then and is now always positive while being factual. My second and third lines have both been trials. I believe strongly in doing trials while still relatively healthy. Right now I am in a trial using Trodelvy, one of the new Antibody Drug Conjugates. The ADCs are proving to be three times more effective than traditional systemic chemo with less side effects for many. My cancer has decreased 25% after 7 cycles. I have not personally been on Doxorubicin, however the time my cancer reoccurred and the two times it progressed there were always several treatment options available. I have a close friend on Doxorubican now to help knock the cancer back. The cancer had spread to her spine. She is a tough lady who wants to keep golfing 😄. Hopefully your oncologist will have a few options for you to choose when you meet.
Thankyou Best521.I believe in clinical trials. I was hoping I would get on another while I feel ok but my oncologist wants me on this chemo.
Which honestly is worrying me because of the effects on the heart. I do worry if I get sicker with treatments. I will go down hill. Hopefully not I have two amazing children I need to see grow up. I have to much living to do 😁
It's very interesting the cancer changing.
We are lucky in a way that it's now recognised.
I am so glad you have a positive oncologist.
I think it makes all the difference.
I had a lovely oncologist as I had to travel a 4 hour round trip for my 2nd clinical trial. ( I live in Australia). He was so supportive and optimistic. But now I am off that one I am back to my first oncologist in my home town.
She is lovely, but doesn't have a good bed side manner. I know they are for the cancer but she can be harsh and my appointments are rushed.
My GP is very good though he goes through everything with me and he has oncology in his back ground.
I hope you go well on the Trodelvy, it sounds very promising. I hope your friend goes well to. Putt putt golf is a far I go 😅.
I was on it, its commercial name here is Caelyx. I was on it 5 months (I’m HR+ PR+). At the beginning it worked amazingly, at the end I had a bad worsening on liver and breast and bones had tumors active after 3 years ned in the two places.
But I had no side effects and didn’t lose hair at all!
Thank you silver126 for your reply. I am sorry it made it worse for you. It's such a worry with all these treatments. You take it to kill the cancer but the longterm effects on your body isn't good.
I have two tumours in my liver, they are stable at the moment from the piqray and fulvestrant as well as my tumours in my spine and breast but they took me off that one because I got progression in my 3 and 4th rib.
They say this one is an all rounder. I hope it works but then resistance comes in.
I am glad you didn't have bad Side effects. My hair is already thinning since my other treatments, but been quite lucky really.
I haven't though been on any treatment long enough in 14 months. I am starting my 4th line. I hope something works 🙏.
Hi Cherry - I will have a bone biopsy tomorrow on my sacrum. I’ve been dreading it. My previous experience with bone biopsy was not the most pleasant that’s for sure but was hoping this will be better. What made your experience horrible? I’m nervous.
Hi Mary. I had a bone biopsy as well. Always insist on anesthesia. Conscious sedation to be exact. You are put to sleep and don’t feel a thing. No one should go through that procedure without anesthesia. You will wake up a little sleepy so someone will have to drive you. Good luck.
I had to have one on my back. They did do twilight anesthesia but couldn't put me all the way out as I couldn't be breathing while they drilled. (I had to be able to hold my breath. ) It was horrible.
Yes I am. The tumor was in the T8 vertebrae which is directly over the heart. (When you're on your stomach. ) Everytime you breathe, you move and a slip could be fatal. Sooooo, you have to hold your breath while they drill. I lived. Wouldn't want to do it again.
Oh. I guess I didn’t get all the details. So sorry about that. My biopsy was in my hip. Huge difference. Once again please forgive me. I just get so mad when I hear that our fellow mbc friends are in pain. We should always be comfortable no matter what!!
I live in Australia but I am from the UK. Treatments vary in different countries I suppose. We have a great medical system in Australia but sometimes we can behind in medicines as our FDA takes longer to approve certain drugs. I just been on a clinical trial with Roche in America. Unfortunately I did feel uncomfortable with my bone biopsy even though they injected me twice with anthesia . But going in through the back to the hip it was quite a long thin drill part. I am just glad I got answers why my 3 other lines of treatment didn't work as my cancer has changed to triple negative. I have mets to my bones mostly in my spine and right hip, ribs. Liver and a small spot in my left lung. Hopefully my treatment on Thursday will be more successful. I hope you are going well lovely 🩷🩷
Hi lovely.I was very nervous about my bone biopsy as I didn't know what to expect for this one.
They performed the procedure in the cat scan as they have to see where they were drilling from my lower back into my hip.
I was numbed up, but I had to lie so still and as I have tumours in the hip I was laying on it was very uncomfortable for me.
The nurses were fantastic though they held my hand in-between going in out of the scan.
I did feel some pain but the specialist was constantly talking ,asking me how I was
It was just uncomfortable for me to lay still for 20 minutes. I don't do pain so everything is horrific to me. But you aren't on your own the nurses are with you.
You will be ok lovely.
I told them I was nervous as I hadn't had a bone biopsy and they were very good. I was in recovery for an hour, laying on my back and they did my obs 3 times before I went home.
I had a dressing on for 3 days, my daughter changed it for me, I had no problems. A little itchy but that's because it's healing.
I will be thinking of you, let us know how you go on, it should be quite straightforward in to the sacrum as it will be direct. For the hips they have to go through the lower back. Bit odd but I suppose they know what they are doing.
hi - I was on Doxorubicin with Cyclophosphamide - AC. It was a long 11 months. I experienced the whole list of side effects I think. Total hair lose - total!, mouth sores, vision issues. The good news was my back was better than it had been in 6 years - extensive spinal Mets and other bones. It was my 6th or 8th line, I will have to go back and count again some time.
It was my first IV chemo.
I wish you the fewest side effects possible, but please reach out if you do have side effects I may have learnt a few tips from Social Oncology and the dietitian .
Thank you Tammie for your reply. I am sorry you went through all the side effects but if it worked that's a good thing. I will definitely let you know if I do, any guidance on side effects will be very appreciated.
It's so sad we go through dealing with this horrible disease growing in us and then we have to take toxic drugs to kill it off.
I just get used to one lot of side effects, then I am taken off my treatment because of progression I haven't been on anything longer than 3 cycles since I got diagnosed. I really hope this one works longer 🙏.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Metastatic Newbie…Not Where I Want to Be🙂
starting Xeloda (capecitabine)
Exemestane and Everolimus
First Trodelvy Infusion
