this is my 4th Petscan and today received results before my doctor’s appointment. I have the MBC in my lungs. Everything seemed stable but a new area developed and the impression stated it suggested new disease spread.
I know I should just wait until 3pm when I speak to my oncologist. But does this mean I will need to change from Kisqali?
Hi , I'm sorry you have a new area of cancer and possible progression . I say "possible " because it depends on how large and what it looks like to the oncologist .
- is it also in your lungs ?
-how do the others areas look? Are they smaller or have shrunk and considered "no evidence " or "resolved"?
-is a biopsy possible of the new area ?
Oncologists are careful to change treatments right away without more info . If it's a small new area (under 1 cm) and doesn't have really high fdg levels the doctor may take a "let's keep an eye on it " and wait until your next scan to compare.
I have had this happen and after 3 scans with a new spot my onc decided to switch me from Ibrance to Kisqali (original areas did not regrow) . My new spot is not in area that can be biopsied but it grew in size and fdg which is why I changed meds. I scan at the end of March.
Let us know what the oncologist has to say- we are here for you !
It is also in my lungs. It seems the report says other areas are stable. New .6cm upper lobe lung nodule and Spicuated left lower lobe lung nodus is larger in size and more hypermetabolic.
This will be a long day until 3pm when I talk to my doctor.
Just spoke to my oncologist. He wants me to stop kisqali and looking into trials. Otherwise he said that I would start capervasitib and fulvestrent.
Sending you hugs and prayers and hoping that you and your doctor can find a good solution.
Sending you prayers for your oncologist to find the right combination for you. 🙏🏻
Can I ask how your scan was
If I were you (we are the same age), I would insist on trying an increase in Kisqali first. It seems to me that the combination meds would be harder to take.
You mean go back up to the 600 mg. dosage? My feet really swelled with that dosage nd my neutrophils were difficult to manage. I know you have another regime the 5 days on and 2 days off. I will check in with him but I do trust him, although there seems to be lots of different standards.
Also I have that mutation that might be what is motivating the change.
Maybe I'm too much of a fan of Kisqali since it seems to keep my neutrophils under control even at my current regime of 4 days (M,T, Th, F) at 400 mg . Perhaps, given my age, my cancer has stopping growing on its own??
Do you have that pik3 mutation?
Yes, I have the PIK3 mutation. I have regular bloodwork and keep track of my cancer antigens (CAs) which now seem to stay in the middle of the normal range. I have metastases in many parts of the body (spine, ribs, skull, spleen, lungs, lymph nodes, liver) but none have grown much the last four years since I started taking Kisqali (even after I reduced the usual prescription to 400 mg four times a week).
I know doctors don’t know everything, but I do have confidence in him and the team at Stanford. He seems pretty emphatic that the Kisqali isn’t doing the job it should. So after looking for appropriate trials I will switch to Truqap and fulvestrant and hope for the best.
I’m sorry to hear about your progression, and suggested change of medication. It’s very stressful and I hope you and your oncologist come together on a plan that works.
I don’t have related experience of having progression, so I’m not helpful, I just wanted to reach out in support 💜
I had same progression a few years ago and my onc changed my estrogen blocker to Faslodex but kept me on same dosage of Ibrance. So far so good with no further changes.
maybe it is my Pik whatever mutation that is being considered.
Have they biopsied it to see what it is? I have something we are watching in my lung...for me I am 6 years NED and the Dr said...definitely a biopsy first.
Ask your oncologist about Xeloda.......My wife, who has Met Breast Cancer that spread to her bones, stage 4 terminal, had mets in her liver and the Xeloda in 2 cycles ( 2 weeks on 1 week off ) completely made all the pet scan markers disappear. It's been this way for the last 2 scans which are performed every 3 months. She also has the Pik3 mutation. Hope this info helps
my husband says I am getting a PHD in this field, ha, ha. I joined the Facebook Trukapsite and I now know two things. There is a trial going on that adds either kisqali or Ibrancd to the Trukap and fulvestrnt regimen. There is also a very recently approved drug called itovebi that adds ibrnce to this protocol.
Perhaps my oncologist wants to start with the standard for Pik3A mutation and then move on if needed. Meeting on Tuesday.
Add all this to a yer long scheduled trip to
Scotland with my husband and daughter which may have to be cancelled as we leave on May 4.
Dear Jitorcz, if you are feeling ok and just changing drugs, don’t cancel your trip. You have time before May to deal with any side effects. Truqap is supposed to be better than Piqray. I was on Piqray for 18 months. The initial rash only lasted a few days. Best to you,
Helen
New primary plus first progression 
Possible Progression 
PET/MRI scans show new activity
progression on xeloda:(
Progression of my MBC 
