CA markers went down progression after 6 mo

[Praising]

I was on Ibrance and fluvesant for 6 mo. After exemestane stable bone Mets for 3 years. CA went up to 300 came down to 89 on this treatment. Scan just showed 6 new spots progression. Does this mean I’m resistant and need to switch? I’d like to try it again for 3 mo and rescan? Is that possible or new treatment? Which I fear.

[Aprilfoolz1]

I'm sorry you have progression. Have you met with your oncologist ? I think the oncologist should do a biopsy on the new spot(s) if possible or a guardant 360 blood test to see if you have acquired a new mutation that some of the new cancer meds target.

Also , it's possible the 6 new spots will be considered "slight " to an oncologist and they may recommend to stay on the same meds for a bit . Or the new spots could be radiated (if they are bone mets ) ?

I understand your worries - it may mean you need to change treatment . For sure you need more info .

Let us know what your oncologist recommends , we are here for you !

[Kerryd22]

I had progression into a mesenteric node last March. The oncologist was told by the radiologist to order a new scan in not more than 12 weeks. She did that and the scan showed regression and the following two scans showed that regression continued. I had a scan in June and there’s no sign of the cancer but there’s still a couple of active spots on a bone scan but no spread.

Based solely on my experience I’d say it’s worth waiting and rescanning to be sure. I have been on Exemestane for eight years now. I don’t know why Exemestane let a new node get infected with mets but all that matters is that it reasserted itself and brought it back under control.

According to a video that was posted here progression is a thirty percent increase or movement into a new organ. I know a lot of doctors, and patients too, change medication as soon as there’s progress but that’s not what’s recommended across the board.

All the best

Kerry

[Praising in reply to Kerryd22]

Wow. I feel I was changed off exemestane too quick with one lyctic lesion on iliac. Now on the new plan several sclerotic ones…. Thanks for your input.

[Aprilfoolz1 in reply to Praising]

I thought sclerotic lesions are healing lesions re bone Mets ? Just curious

[Praising in reply to Kerryd22]

Can you repost the video

[Kerryd22 in reply to Praising]

youtu.be/Hn3oB0P6Kpo?si=biz...(Not working as expected?)

It’s about 45 minutes long.

[Praising in reply to Kerryd22]

Wow you have helped me so much. Thanks for the article. Yes

[Kerryd22 in reply to Praising]

I copied this from another site. I don’t think I can post a link here but I’ll try separately to do that.

THE REALITY OF TIME TO RESPONSE (TTR): The situation is a lot more hopeful than might appear. Let me address the issue of what’s called Time to Response (TTR) in the real world (more about that shortly) and begin by saying that the response from InspireAI (AI-driven), although relatively compassionate and tempered, is nonetheless wholly in error when it states that “Two months is a reasonable timeframe to assess the effectiveness of a treatment.” The median Time to Response (TTR) for ANY of the approved CDK inhibitors, like palbociclib (Ibrance), abemaciclib (Verzenio), and ribociclib (Kisqali) is not ever less than at least about 3.x months, out to ~5.3 months for the fulvestrant (Faslodex) + palbociclib (Ibrance) you are/were on, as confirmed by the Waller et al. real-world IRIS study (in JCO Global Oncology), and Palumbo et al. (in Advances in Medical Oncology), among many others.

THE VALUE OF PATIENCE: What that means is that to be truly fair in judging whether your regimen is providing significant positive benefit, we would be reckless in not waiting to conclude on this issue for AT LEAST 3 complete cycles of treatment, BUT preferably 5 – 6 complete cycles, otherwise we may prematurely reject a highly effective treatment regimen.

THE ISSUE OF TUMOR MARKERS: Within this time frame – min (3 cycles) to outlier (5 -6 cycles) - tumor markers are known not to be sufficiently assured to be reliable indicators of potential benefit. Indeed as I have oft noted, transient increase in serum tumor marker values – aka, “TUMOR FLARES” (sometimes also known as “SPIKES” or METABOLIC FLARES) - on starting treatment has been well-documented in many malignancies including breast cancer, and in fact this may be accompanied even by some progression of the cancer on imaging.

BUT: that reflects only that we have not waited long enough for a real-world time-to-response (rwTTR) to set in.

LESSON: With the best of therapies, patience is critical BUT I acknowledge, easy to say, and by no means easy to conjure up when patients, quite understandably, believe they are seeing their tumor markers seemingly raising alarm bells. Those earlier months can be a “white-knuckle” source of anxiety so reach out as you did here to others on these forums who may provide some needed reassurance and broader clinical perspective.

BOTTOM LINE: During the time before reaching median time to response, therefore, tumor markers (and even imaging results) are unreliable, and should not be used to prematurely terminate a treatment regimen. These regimens are exceptionally effective, if allowed sufficient time to work, in the overwhelming majority of cases, extending both overall survival (OS) and the time before recurrence (if any; known as progression-free survival (PFS)).

Hope this helps clarify the issue.

Best fortune to you.

Constantine Kaniklidis

Director, Medical Research, No Surrender Breast Cancer Foundation (NSBCF)

Member, European Association for Cancer Research (EACR)

Society for Integrative Oncology (SIO)

International Society for Infectious Diseases (ISID)

Alzheimer’s Association International Society to Advance Alzheimer’s Research and Treatment (ISTAART)

International Cardio-Oncology Society (ICOS)

American Society for Bioethics and Humanities (ASBH)|

ORCID ID: orcid.org/0000-0002-7043-5937

[13plus in reply to Kerryd22]

This is really interesting. Makes sense and I’m glad my doc has not ever been one to rush me off a drug too soon . I love that you are now rocking 8 yrs on exemstane! Im in a somewhat new situation for myself at the moment. I started on xeloda back at the end of Jan/early Feb. My TM’a kept dropping by half every month, which was thrilling, then they plateaued, and now the last 2 months the CEA has continued a slower regression but the CA15 (? I’m blanking on the acronym, the more relevant one anyway) has slowly risen over the same 2 months. I’m dreading bad news because I wanted at least a year in this drug but trying to remain hopeful. Never had this happen before with my TM (that I recall)

[Kerryd22 in reply to Praising]

link inspire.com/groups/advanced...

[Sharon0122]

Good Morning! I was on Ibrance and anastrozole for 3 years, did very well. I called my dr one day as I was having extreme pain, in my arms and shoulders, and talked to a nurse. She called back the dr changed my medication to exemestane. The pain did not decrease at all. I went to my pain dr and seems I have a pinched nerve and most of the pain it seems after my scans, is from my spondylitis. I’m going today for scans and am scared I may have progression. Why do they it seems they just change meds at the drop of a hat, when one medication is doing so well. I did call back to see if I can get an appointment last week and they said none available in the near future other than my appointment in three weeks. No call back from the dr either! I hope you get better treatment than I am.? None of these drs talk to each other either. Best to you and hugs!

Sharon

[Beryl71]

Where do you live? Can you get a second opinion?

[13plus]

If the spots are small I would stay on it longer (I’ve done this myself before). It may end up you have more lesions, or they may disappear or stay stable anyway. The key is to get as much time as possible on each drug without compromising your health further (or suffering from painful areas). I had iBrance for 3 yrs but slowly progressed with bone lesions over the final 4/5 months as one example

[Praising in reply to 13plus]

I have neutropenic every month which is a concern but would like to stay on longer. What are you on now? I was wondering about Verzenio? Thanks

[13plus in reply to Praising]

I had to take a 10-14 day break each month for low neutrophils so you should be fine .

Since iBrance I’ve been on Lynparza, then Afinitor (worked for a blip) , and now Xeloda