Recurrent Breast Cancer: Markers Increasing

Posted by ampeltekian @ampeltekian, Dec 17, 2022

I have been on a Ribociclib/ Letrozole treatment for three months now. My CA 15-3 marker was 142, 156 and now 190 u/ml (Oct/Nov/Dec).

I was feeling great in the first two months but I have developed some pain around the waste in an area I never had before.

Shouldn't markers start dropping after three months? Or is a pet scan the definitive detector?

Just a heads up: Initially I was diagnosed with RBC because of suspicions my Oncologist had with of these pains and not the pet scans (which were done 9 months earlier and I was clean) nor the markers (Which I had done a month earlier).

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@ampeltekian, when I first read your message, I thought you might be referring to red blood cells, but I think you're using RBC to mean recurrent breast cancer. Is that correct?

CA15-3 levels tend to be highest when breast cancer has spread to the bones, the liver or both. If levels increase over time, it may mean that the cancer is not responding well to treatment, is still growing or is coming back (recurring). Keep in mind that non-cancerous conditions can increase CA 15-3 levels like include endometriosis, pelvic inflammatory disease and liver disease.

I believe that you had a follow-up PET scan scheduled as well. Was metastasis confirmed beyond the results of the tumor marker?

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Sorry Colleen

I think I created unnecessary confusion. It was panic mode.

Yes it is recurring BC. I have been on ribociclib/letrozole for two months now. Not three.

My markers are climbing. The last Pre treate ca15-3 was 142 u/ml.

1st round of post treatment it was 156

2nd round of post treatment it is 190.

So the panic button

Any input would be super helpful. Early pet scan?

Also, what type inflamation could cause inaccurate readings? Muscular?

Thanks
And my appologies

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What kind of pains suggested recurrence and what diagnostic measures were taken? I am sorry for this stressful situation and hope the meds do turn the markers around.

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The Femara Kisqali blend did not work. After 3 cycles of treatment cancer shows progression in pet scan.

What's next?

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@ampeltekian

The Femara Kisqali blend did not work. After 3 cycles of treatment cancer shows progression in pet scan.

What's next?

Jump to this post

@ampeltekian, I've sorry to hear that Femara-Kisqali didn't work for you and that the scan showed the cancer is progressing. I think @pbnew and @meme5 can relate.

I know you asked the group "what next", but I'd like to ask back. What did your oncology team suggest is next?

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@colleenyoung

@ampeltekian, I've sorry to hear that Femara-Kisqali didn't work for you and that the scan showed the cancer is progressing. I think @pbnew and @meme5 can relate.

I know you asked the group "what next", but I'd like to ask back. What did your oncology team suggest is next?

Jump to this post

I can only tell you my experience.
I took Ribociclib for 19 days in April at 600mg and 9 days in May at 200mg. I took Letrozole from February 1-June 15. There was no progression. I had clear scans May 31 and Sept 19. I’m not taking any medications now. From mid January on I have been taking 8 mushroom supplements including a high dose of Turkey Tail.

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@colleenyoung

@ampeltekian, I've sorry to hear that Femara-Kisqali didn't work for you and that the scan showed the cancer is progressing. I think @pbnew and @meme5 can relate.

I know you asked the group "what next", but I'd like to ask back. What did your oncology team suggest is next?

Jump to this post

I do not have a clear cut answer.

My 3 cycles were as follows:
Cycle 1 & 2
600mg 3weeks/2 weeks off (to recover from low WBC)

Cycle 3
400mg 3 weeks/1 week off.

There are 3 opinions for the coming two cycles:
A)
Continue with 400mg + Femara
3weeks/1 off

B)
Continue with 600mg + Femara 3 weeks/1 off with close monitoring of WBC

C)
Continue with
400mg + replace Femara/letrozole with fulvestrant/faslodex

The subject of PIC3CA came up. As well as BRCA.

Here's the real problem.

I live in Beirut, Lebanon. Alot of those treatments are not available and when they are they would last for a couple of months and disappear again. They cost alot of money and Private insurance does not cover it and there seem to be no government subsidies.

There's another challenge too with the PIC3CA and BRCA. The sample biopsies have to be sent to the US for testing and analysis and the process would take 3 to 4 weeks and it would cost an arm and a leg.

So even if there is a consensus on which route to take, I am not sure if I will have acess to the treatments.

Looks bleak we try to move forward, be positive and try to keep my 3 kids out of the loop.

REPLY
@ampeltekian

I do not have a clear cut answer.

My 3 cycles were as follows:
Cycle 1 & 2
600mg 3weeks/2 weeks off (to recover from low WBC)

Cycle 3
400mg 3 weeks/1 week off.

There are 3 opinions for the coming two cycles:
A)
Continue with 400mg + Femara
3weeks/1 off

B)
Continue with 600mg + Femara 3 weeks/1 off with close monitoring of WBC

C)
Continue with
400mg + replace Femara/letrozole with fulvestrant/faslodex

The subject of PIC3CA came up. As well as BRCA.

Here's the real problem.

I live in Beirut, Lebanon. Alot of those treatments are not available and when they are they would last for a couple of months and disappear again. They cost alot of money and Private insurance does not cover it and there seem to be no government subsidies.

There's another challenge too with the PIC3CA and BRCA. The sample biopsies have to be sent to the US for testing and analysis and the process would take 3 to 4 weeks and it would cost an arm and a leg.

So even if there is a consensus on which route to take, I am not sure if I will have acess to the treatments.

Looks bleak we try to move forward, be positive and try to keep my 3 kids out of the loop.

Jump to this post

I’m so sorry for what you are having to go through. We in the USA don’t always realize how fortunate we are when it comes to medical care. This is a wonderful community of women (and some men) and I think I speak for all of us in wishing you well in your journey. Prayers for you and your family.

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@ampeltekian

Sorry Colleen

I think I created unnecessary confusion. It was panic mode.

Yes it is recurring BC. I have been on ribociclib/letrozole for two months now. Not three.

My markers are climbing. The last Pre treate ca15-3 was 142 u/ml.

1st round of post treatment it was 156

2nd round of post treatment it is 190.

So the panic button

Any input would be super helpful. Early pet scan?

Also, what type inflamation could cause inaccurate readings? Muscular?

Thanks
And my appologies

Jump to this post

I’m so sorry to hear. I’m reading a book “Radical Remission” by Kelly A. Turner. Those miracle cancer survivors dramatically changed their diet. Strongly recommend you this book. Lots of love and hugs to you!

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