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new Petscan results show progression

jltorcz profile image
14 Replies

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?

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jltorcz
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14 Replies
Aprilfoolz1 profile image
Aprilfoolz1

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 !

jltorcz profile image
jltorcz in reply toAprilfoolz1

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.

jltorcz profile image
jltorcz in reply tojltorcz

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.

love2golfwell profile image
love2golfwell in reply tojltorcz

Sending you hugs and prayers and hoping that you and your doctor can find a good solution.

Hazelgreen profile image
Hazelgreen

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.

jltorcz profile image
jltorcz in reply toHazelgreen

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.

jltorcz profile image
jltorcz in reply toHazelgreen

Also I have that mutation that might be what is motivating the change.

Hazelgreen profile image
Hazelgreen in reply tojltorcz

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??

Mumberly profile image
Mumberly

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 💜

Beattheodds profile image
Beattheodds

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.

jltorcz profile image
jltorcz

maybe it is my Pik whatever mutation that is being considered.

AvidBooklover profile image
AvidBooklover

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.

utahsara profile image
utahsara

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

jltorcz profile image
jltorcz in reply toutahsara

Thanks. I will.

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