Ibrance (Palbociclib)
Comments
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rk2020,
I've never had a ca27.29 test, nor any tumor markers done. I just don't know what to think any more about the care that I've been getting. I will ask my MO about the ca27.29 test, in addition to a question about why liquid biopsy was never done.
Wendy
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weninwi- FYI not all oncologists run tumor markers. My early stage MO ran CEA, CA15-3 and CA27.29 every 6 months in the hopes that if the cancer returned, my tumor markers would catch it early. My MBC MO at Moffit ran CA27.29 only. Same with my small town Wisconsin MO. My current MO only runs them because I requested her to after telling her that in the past, results correlated with my scans. If you ask your MO to run tumor markers, you have to establish your own trend. It’s not the number that is as important as your personal trend and if your trend correlates to your scans.
In my opinion, you need to get a second opinion. Even if a second opinion doesn’t change your treatment, having less doubts makes it a wi. If you go for a second opinion, you need to go outside your current hospital system and if you can find an MO experienced in breast cancer, that’s optimal. Im not sure where you are going now or where you live but Madison may offer good options. https://www.cancer.gov/research/infrastructure/cancer-centers/find/uwcarbone Or Mayo in Rochester. The Milwaukee area might have options as well.0 -
rk202,
Thanks for your thoughts and explanations. Makes sense that tumor marker scores/trends would be more meaningful on an individual basis.
Wendy
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Regarding tumor markers, they've never meant anything for me, but my oncologist runs them, because she figures it can't hurt, and if they do ever change, we'll at least know something is up. For reference, my tumor marker CEA has always been between 2.8 and 4.2 - when I was first diagnosed, before treatment, and throughout the last five years. Same with CA 15-3, numbers have always been between 22 and 27, and in fact, the 22's were just before I started treatment, and last month, after 5+ years on Ibrance/Letrozole. My onc says some people just don't register tumor markers, for some reason.
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My tumor markers are also "unremarkable." My first MO ran them, but sort of shrugged when I asked her about them and said they didn't really mean anything. My current MO also runs them, but they've never changed much. They've always been in the acceptable range. The only thing that really jumped right before my Stave IV diagnosis was my blood calcium. It was elevated, but not by much. It's come back down to the acceptable range, but I've stopped all calcium supplements.
Carol
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My TMs are very predictive- hint at progression before the PET changes. they have often doubled in one month with progression. It is individual.
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My TMs have been really responsive. My MO checks the 15-3 and 27.29 every month and it seems like they have been right on so far. I think my 15-3 started out around 1600ish and is now around 115. And my 27.29 started around 8200 and is finally under 1000! So steady drops as my treatment has worked on my mets. I hope this continues!
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Katyblu -Bravo! Yippee! Hooray!
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rk2020, Katyblu, nkb, sunshine 99, ciaci......Thank you for your responses to my questions about tumor markers. I just found this information about tumor markers provided by the company Natera. They market their own unique circulating dna test. I've just started reading their site, but it looks to me their services are available directly to the patient?
https://www.natera.com/resource-library/signatera/...
Wendy
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weninwi- The Signatera test is extremely interesting. Although I didn’t find an exact FDA approval date, it seems that it’s been around for maybe a year. It looks like the initial focus was colon cancer but they are touting some pretty interesting sensitivity and specificity for breast cancer. Interesting indeed. I’d be curious to hear from anyone on BCO that has started taking this test and how often it is recommended to be given to MBC patients. Have you posted this on any other threafs
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rk2020,
No, I have not posted this on any other discussion boards. It's not a clinical study, but I'll post it on that Clinical Studies board since some of the women who follow that board are very well informed. Go ahead and post it anywhere else you'd like. I haven't finished looking around the site and it takes me awhile to absorb what I'm reading, but it certainly looks promising for making more informed treatment decisions. I'm not ready yet, but patients can schedule a session with a patient coordinator.
Wendy
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Is anyone familiar with any contraindications if I take Omega 3, glucosamine, and/or turmeric supplements while on Ibrance and letrozole? Curious if anyone has experienced this. Thank you!
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sf-cakes,
I asked the oncology pharmacist at my cancer center about tumeric and she recommended avoiding it with letrozole and Ibrance with the explanation that it can make these medications less effective. I've never asked about glucosamine nor omega 3.
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sf-cakes - when i was dx with stage IV, my oncologist told me to stop the tumeric supplements immediately (I had been taking them for a couple of years). She said the supplements have some estrogen or increase estrogen or something. HOWEVER, the actual spice added to foods does not. She happens to be from India and really loves tumeric as a spice. I don't really have any studies to share on this but followed her advice! I don't know about the other supplements.
Hope all of you are doing ok as we head in to Thanksgiving in the US.
I just had my 3 year MBC cancerversary on 11/14./22. Sigh . Started cycle 36 of Ibrance which I am very happy about. Blood work, white count etc all looked good. Scans on December 8th.
I keep getting reminders on my phone or fb about "memory from 4 years ago" or whatever with photos and it still makes me sad. 2016-2018 I looked so much younger (to me) and "carefree".....onward.
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aprilgirl1,
Are you taking Ibrance with a second drug like an AI or Fulvestrant?
During your 3 years on Ibrance, were you ever switched from an AI drug to Fulvestrant based on liquid biopsy findings?
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Thank you weninwi and Aprilgirl! The pharmacist emailed me and let me know the turmeric was a no-go, but said I could try the Omega 3 but if my blood work looks wonky, she'll have me stop. She used a more professional term than 'wonky', naturally.
Aprilgirl, I'm glad you had a three year cancerversary, because of course you're still here! Hurrah! And also, ugh, cancerversaries, what a whammy of conflicting emotions. I've got the same feeling about old photos, like how come I didn't know how fantastic I looked then?!? 36 cycles of Ibrance, isn't it amazing how our bodies can tolerate these harsh meds for years. And hopefully many more years. In your pocket for your December scans.
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Weninwi-
I am on Ibrance and Fulvestrant. I had node negative stage 1 IDC in 2008. My oncotype score was 23 which was considered "middle area/unknown if chemo was needed" and it was recommended that I have a lumpectomy plus radiation and it was up to me if I "WANTED" to do chemo - which I did. Followed by 7 years of femara. The oncologist took me off of femara at 7 years because my risk of issues from bone loss from the femara was much greater than my risk of a cancer recurrence. Ha. I have moments of wondering if I had stayed on Femara I would be in this situation but who knows.
I have not had a liquid biopsy. My oncologist said that as my scans have been "no evidence of active disease" for 2 years a liquid biopsy would not show anything.
Edited to add: Weninwi - I am assuming you mean a liquid biopsy to look for mutations? My oncologist told me my "tumor burden" is too low for a liquid biopsy to show anything. If and when I have a progression, she will order biopsies of the new areas of concern if they are accessible and maybe a liquid biopsy.
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sf-cakes - I take glucosamine sulfate. My MO doesn't like me to take vitamins and supplements other than the calcium and vitamin D that I have to take because of being on XGEVA but was okay with me taking glucosamine. I rearched glucosamine myself and found that the glucosamine sulfate is supposed to be better for arthritic problems than other forms of it. I also found that chondroitin and MSM are a no-no as far as breast cancer patients.
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aprilgirl1,
Thank you for the information re your history and liquid biopsies. Very helpful to learn your MO's reasoning re liquid biopsy.
At stage 1 you took every treatment recommended, plus the extra measure of chemo and still 11 years later you developed MBC. It's hard to understand even for the breast cancer specialists.
I was stage 1A ILD and node negative, had lumpectomy and radiation, with an oncotype score of 18, so I was not offered chemo. I saw chemo as a double edged sword so accepted this. My MBC risk was 9% if I took the recommended AI drug like Letrozole or Arimidex or 11% if I took Tamoxifen. Because I was osteopenic, my plan was to take Tamoxifen for 2.5 years (to increase bone density) and then switch to the AI drug for 2.5 years or longer. I made it out to only 3 years before progression to MBC.
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WeninWi - it is truly unreal how much is unknown, it would seem in the world of breast cancer and probably all cancers. If I had an oncotype of 18 I would have not had chemo either as I think that score means the patient would not benefit from chemo. I was 44 in 2008, pre-menopause so the chemo put me into chemopause and then menopause which was probably the best benefit of the chemo. Who knows...... Another interesting fact that made me feel like I would not have had a distant recurrence is that I had a bilateral breast reduction after chemo and before radiation (lumpectomy was done first in my case). I chose to have this as I was really "top heavy" and had planned on having a reduction in 2006 but postponed it as we moved and I had to get my kids settled. Silver lining of cancer was that it was covered by insurance. The bilateral reduction took an additional 30% of tissue of the bad side and "healthy" size and was done by my breast surgeon and a plastic surgeon and was a 6 hour surgery as they had to color code the tumor bed margins of the lumpectomy in case the pathology came back finding any hidden cancer cells. It was all clear. I was naive in that I understood the risk of recurrence but as I was node negative and then had this addl tissue sent through pathology I thought a recurrence would be in my breast, not distant. Add to that my top rated cancer center never did more than breast MRI/mammogram/chest x-ray for surveillance after treatment as SOC for stage 1 does not include any petscans or "full body" scans. All breast mri's and mammograms were clear. When I started having weird symptoms it was a real PITA and the cancer center would take 3 months and an ENT's ordered scan showing enlarged lymph nodes to take me seriously.
Enough about me:) So many of us are caught in these very small statistical groups - 8% risk or whatever, but here we are. Sometimes I want to push to change SOC to allow any early stage patients to have a full body scan every two years to catch cases like ours. But, then you have so many of our mBC'ers that are de novo......sigh....
This new liquid biopsy might be a different or more sensitive test so I will ask my oncologist about it when I see her on December 14th.
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Cowgal, thank you, glucosamine sounds like maybe the best option to start with, I apparently have some arthritis in my spine that fortunately advil has been working well for, but I definitely want to try to bring down the inflammation overall.
I was told I had a 40%+ chance of recurrence, and lo and behold, six months later that little tiny thing in my spine, yep, that's breast cancer. I think technically I am de novo but no one thought it was cancer when we first saw it on the CT scan, it didn't look like cancer and it was too small to biopsy. Stupid cancer!!!
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aprilgirl1,
I'm going to attend an on-line program on Liquid biopsy tomorrow. It starts early, morning only, and one session is focused on breast cancer.
https://event.gotoper.com/event/33c0af94-c22e-4695...
Like you I wonder about SOC. My MO allowed a very early indiscrete spot on my liver progress for 8 months, with no treatment change, and only scans to follow until it was 1.0 cm and big enough for a solid tumor biopsy, which clearly was her clinical goal.
My limited understanding is that a liquid biopsy could have been done much sooner, even before clinical signs of progression, and it would have revealed the same mutations that the solid tumor revealed. I can't go back, but I'd like to better understand the usefulness of liquid biospy for the future...whatever future I may have.
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I'm just catching up ladies.
Sfcakes - before I was dx MBC I was having bad leg pain I attributed to either old age or a sports injury so I started taking tumeric while I waited for my leg to get better. Oops. I'll never know what extra damage I caused by taking it. I was probably onit for 5 or 6 weeks until I was diagnosed. 🤦🤦🤦🤦
Aprilgirl - I know we all age but this is ridiculous! My face melted during early stage chemo. I think it sucked all the collagen out of my body. I tried a collagen supplement prior to MBC but didn't see any improvement. Now that I'm on all these other lovely drugs, it's only getting worse. Oh well. I'm alive. I saw your link to the liquid biopsy session too late. If you could share what you learned, I'd be grateful.
On a personal note, I just had extensive blood labs, an EKG (AC did no permanent harm) and a liver biopsy yesterday and will top it off Monday with a scan so that I can start my clinical trial drug on December 1. This will be my 4th line of treatment. It is a CDK2 inhibitor. 🤞🏻🤞🏻🤞🏻
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rk2020-I don't think turmeric did you any harm. It's not recommended for people taking Ibrance b/c it can use the same path as Ibrance but it was actually probably a good idea to try it pre-Ibrance as an anti-inflammatory. Best wishes with your clinical trial. I hope that this new drug will knock out all the cancer cells.
I am scheduled to get genetic testing at the end of the month. It is such a hassle at my cancer center. I have to see a genetic counselor, even though I have no blood relatives. All I want is for them to take some blood and find out if I have a BRCA gene or anything else relevant to breast cancer but I have to jump through these hoops. It has been a several month wait to see a genetic counselor and even so it will just be a brief phone call for her to "counsel" me and put in an order for a blood test. Arrgh.
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Chicagoan- Huh…when I was early stage in 2016, I had to see a genetic counselor before they would do genetic testing. That was at a facility in Park Ridge IL. That testing was before genomic tests like Foundation One or Guardant 360 etc were approved. To get a liquid biopsy (genomic testing), I did not have to see a genetic counselor and the liquid biopsy included the known BC genes such as BRCA. I’ve also had genomic testing on bone biopsy material that also included the known BC. But I guess you just have to jump the hoops they require.
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rk2020,
I attended the on-line liquid biopsy program this morning: "Precision Medicine Through Plasma Using Liquid Biopsies in Contemporary Oncology". It was way over my head, so I don't have details to share. I tried to pay attention to terms, general concepts, and the broad picture. The use of liquid biopsy in lung cancer is the most well developed. The presenter on it's use in Breast Cancer was Heather A. Parsons MD from Dana Farber. She said it's use and development in breast cancer is behind the other solid tumor cancers. She said she does not use it in her clinical practice in part because of the high volume of women under care....i.e. breast cancer affects such a large number of women. I thought her presentation was the weakest. One presenter talked about approaches to overcome Inertia Bias on the part of clinicians.
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Weninwi - thank you for bringing up the topic of recurrence risk and the percentages we are presented with. I was stage 1a, HR+, HER2-, in august 2020. Had a double masectomy and then oncotype came back at 34. Did the highly recommended AC+T and faithfully took my AI, which oncotype said would bring my 10 year recurrence risk to 12/13%. I knew this wasn’t super low, but certainly thought I’d make it more than 18 months on anAI before any recurrence. As fairly recently diagnosed MBR, I still occasionally struggle with a what the hell just happened thought process. Reading the posts from all of you helps me a lot. I tolerated my first cycle of ibrance and fulvestrant injections very well, so I am thankful for that.
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believe60,
I remember well having to make the decision between lumpectomy or mastectomy and thinking I had made the wrong decision after I progressed to MBC. But then I started to learn about women, who like yourself, had mastectomies and still progressed. In addition you had chemo and took the recommended AI. You took every treatment measure available...and still. Like you I've benefited so much from the women who share on BCO - their experiences, knowledge, tips, and courage. I hope you get a good long run on Ibrance and Fulvestrant.
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I am glad that rk2020 brought up collagen supplements. I too feel like all of this cancer treatment just aged me quickly and I don't mean just on the surface but also may contribute to some of my inner problems as well. Does anyone know if collagen supplements are safe for breast cancer patients? I wouldn't be able to do the marine collagen supplements as I have a shellfish/iodine allergy but have been contemplating starting some sort of collagen if I knew it was safe.
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believe, I want to chime in with my story. I had Stage II cancer in 2007. Onco type score was marginal. I was part of the TayloRx study and was randomized to get chemo. Now the research shows that chemo doesn't necessarily benefit those with a lower onco score. I had the mastectomy, chemo and AIs for five years. When the cancer came back 12 years later, I was so thankful that I had thrown "everything" at this beast when I first had the chance. No guilt that I hadn't done enough the first time. Cancer's return IS NOT OUR FAULT! It happens.
(((hugs))) to you,
Carol
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