CT scan

[mkrienke55]

I started on Ibrance and Anastrozole roughly in June 2023. Took it for 2 months and had to go off Ibrance for 5 weeks for surgery. Back on it for a month. Has a CT scan which showed more bone Mets and increased size. A node in lungs which was not seen on previous scan 6 months ago. Discouraged to think the treatment isn’t working and I just got started. Having a PET scan next week and my recent bone biopsy from April will be analyzed for DNA Possible mutations. Have no idea what is ahead Anyone experience this? And is it possible I need more time on my current treatment to be effective?

[kiwi67]

Your onc. is the best person to talk with about this. I think 2 months on then 5 weeks off is a significant break in treatment especially at the beginning so maybe its too early to tell if the drugs will hold it stable. I'm not going to say don't worry cos that's exactly what we do and its natural to do that in this situation. I just hope you can find moments of peace until you get more answers.

[HelenWi in reply to kiwi67]

I agree with Kiwi — that your onc’s perspective would be the valuable one and also that getting off Ibrance for 5 weeks after only two months makes it hard to tell whether it’s really not working. (And I’d make sure that onc explains his opinion — ask questions!😊) It’s good that you’re doing the biopsy; you might want to do the Guardant 360 genomic test — it provides valuable info.

But in any case , try not to worry, because there are many options. Ibrance didn’t work for me (and gave me lung inflammation) so my onc put me on Piqray and it got me more or less stable.

Try to keep busy and not think about this until you get more info.

Best wishes to you,

Helen

[Hazelgreen]

There are two other pills similar to Ibrance (palbociclib) to control metastatic breast cancer. They are Kisqali (ribociclib) and Verzenio (abemaciclib). Research studies currently seem to indicate that Kisqali leads to somewhat longer progression-free periods on average (about 5 years). However, it is important to keep in mind that we are all individuals who react to drugs in specific ways. Tolerance for the various side effects is important to consider as well as effectiveness.

[Kerryd22]

I started on Letrazole myself. The doctors were confident because my tumour is 100% fueled by oestrogen so they deemed it easy to treat. Soon after I started it the registrar asked me if I had anything to tell him and I hesitated. He said if you don’t tell me I can’t know. I’m not a mind reader. So I mentioned a very minute symptom which I actually experienced a couple of months before I was diagnosed de novo bc namely a few very small numb spots on my face. I’d originally experienced numbness on the nose in particular and the right side of my face but it appeared to be resolved by the treatment the GP gave me. The GP handed me a syringe and instructed me to poke it into the numb areas. He was astonished by the effect. The needle went all the way into my skin and I felt nothing. He decided that although it could be brain cancer it probably wasn’t so that was the third option. The first option because I also felt like I was walking around with a knife in my skull (but it wasn’t debilitating pain just odd) was a kind of migraine which can mimic a stroke. There’s a treatment for it which opens the veins in the head. But I still had a few residual numb spots. So I explained all that to the oncologist and he said ‘hmm’ and I left. The next thing was that I received a letter for an appointment for an MRI.

The MRI showed that since my first MRI in May when I had no skull Mets my skull was now riddled with Mets. One sinus cavity was covered with lesions and the second was in the process. Plus my spine and the clivus, which is at the base of the skull where it sits as a shield for the nerve bundles, between the skull and spine was covered in Mets. That was why I was experiencing the numbness apparently. My nerve bundles were being impacted. When the MRI report came back I was immediately prepared for IV chemotherapy andI had radiation to my skull. The radiologist was alarmed at the speed of progress and the every second day treatment plan was upped to every weekday for two weeks instead.

The scan will inform your doctors but it can go either way. I had a scan in March which showed a mesenteric nodule had been overcome by active lesions but rather than making a sudden change like they did in 2015 the radiologist said a follow up scan within 12 weeks was needed. That was done but this time the report said that the progression had reversed and the nodule was half the size it had been 12 weeks earlier. So I’m still on Exemestane and have been since 2016. My entire skeleton is involved in Mets whether healed or unhealed or active or not but the breast tumour is so small it’s no longer visible. When Letrazole failed it was noted that the breast tumour doubled in size. Now after a lot of Exemestane it’s not seen on scans anymore.

There’s no way of being certain of what is going on with the cancer and the Mets without a scan. But sometimes it needs a follow up scan to accurately assess whether a change is needed.

Whether you change or not there’s plenty of options left in the cabinet. There’s a lady on another site who’s been on Letrazole alone for ten years. I try not to be jealous 😉 because Letrazole didn’t work for me for a hot minute but for some people it is brilliant. Maybe it will be good for you in the end or maybe it won’t. Why one drug works well for some and not for others is one of life’s mysteries.

All the best

Kerry

[mkrienke55]

Thank you for the replies! Just have to wait and see. I will be getting a DNA test through a blood sample as they don’t have enough tissue from biopsy

[lovnmycat]

I was diagnosed in June of 2022 with lobular and bone Mets everywhere. When I started treatment my Onc told me at the beginning it can look like progression when the medication is starting to work because (if I’m remembering correctly) the Ibrance causes cells to surround the cancer in an effort to contain. After 6 months the cancer was def shrinking in the scans. There was a scan after 9 months that looked like there may be progression but we waited and scanned 3 months later and that spot was gone and now there is no evidence of disease. So sometimes things pop up and go away.

Stay strong!

[mariootsi]

Discuss this with your onc. Each of us have had many different experiences with the meds. Each of us is so different!