Ibrance (Palbociclib)
Comments
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Hey, PatgMc. You used a PARP- Lynparza- right? My MO said that PARP's are hard on blood counts and, over time, can cause leukemia. Cannot use long term due to that. Were you told that?
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Hi Candy, Well, bummer, that one's on my list too. I see it was reported last Dec- double the rate of MDS leading to leukemia (AML) in those exposed to PARPi, showing up on average 17 months after starting the drug (quicker than chemo-induced leukemias), and can even be a short exposure (0.2 months), so taking the drug for a short time does not necessarily protect you. It's a rare but dangerous (fatal) SE, affecting less than one percent of the patients (0.73%).
https://www.medpagetoday.com/hematologyoncology/le...
OTOH, they reported a year overall survival advantage in the ovarian cancer trials, where they have the most data, so its a great drug if you are a responder (and don't end up with leukemia).
https://ascopost.com/issues/july-10-2020-supplemen...
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prairiesea, I'm sorry you're having so much trouble with Ibrance. I have started back on it, even as low as .90, but I've also had to stay off an extra week maybe around four times. I hope the 75mg does the trick. I went to 75 after the first round. If it's working, I would really hope they can keep you on it.
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Cure-ious--- My MO also said that ER-/PR+ is rare. But that they are looking at the role of progesterone and that it may be driving the hormone pathway still. That progesterone may play more of a role than they first thought. Does this make sense to you and your scientific mind? I don't know how to look up articles/ research about things as well as you do.
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Candy, sounds like you're MO has a good plan. It would be good if you can get more time out of I\L.
Aprilgirl, great news on your scan! It's time to relax until the next one.
Rabbit, hoping you get good news too.
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just read about some FDA news when it comes to Alpha Dart treatment which began in Israell and now are doing breast cancer trials in Japan and Russia. They are doing trials at Memorial Slian Kettering in NYC for skin cancers but including solid tumors like breast that have spread to the skin. Sounds like it attacks the primary tumor without the damage of other kinds of radiation but also has an immuno effect on metastasis.
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Thank you to everyone for the CT scan advance. I wore appropriate scan clothes - pull-on capris and a pull-over top. I meant to wear a sports bra, but I forgot (and I didn't really want to wear a sports bra all day) so that was the only thing I had to remove. So glad I was warned about the warm feeling - it was so strange. I was so relieved that the actual scan only took a few minutes. I had it confused with an MRI which takes much longer and is loud and awful so this was easier than that. I didn't sleep well last night because I worried that I wouldn't get out of bed when the alarm went off. And I worried I wouldn't remember about my special breakfast of Champions drink. The drink wasn't great, but it didn't make me feel ill or anything. Snow-drop, I ended up having to drink more just before the scan because of delays.
The good news is that I met with the doctor afterwards and he had the results of the scan and bloodwork. The scan shows that the lymph nodes in my chest are shrinking and the bone lesions are healing! No new bone lesions, either. The bloodwork shows my white blood cell count as adequate to start the next Ibrance (125 mg) cycle on time. The first 3 times I had to wait an extra week so that is encouraging. So I will start my 4th cycle tonight.
Candy - I don't know much about the plan your doctor is proposing, but I agree that it sounds good. Is the liver procedure like radiation?
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GoKale- Happy for ya that you are on your 4th cycle of Ibrance. And that your scans showed good news.
One option is radiation. Another is an ablation procedure. Another is resection surgery. You can read about them on the Liver Met Thread. Pros and cons about each treatment. Too much to go into here. Gotta research them.
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Snow-drop and Aprilgirl- Any news on you guys?
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Candy - I would think that given how much time has passed in the last few months since the liver mets were noted to be growing and its still very slow and no others have popped up, that the Ibrance is still holding the line and working on that PR+ pathway. If that is true, then potentially a local liver treatment could buy you even more time on this combo (provided its the right local treatment for your risk tolerance and care situation). I definitely think you need all the options on the table including a potential move to another CDK 4/6 (and I know what you've mentioned before about insurance and all that, but keep an open mind), Xeloda, local liver therapy and staying on Ibrance, or some other option.
GoKale - sounds like great scans and you are settling in on the Ibrance dance here!
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Worked with insurance today. They hung up on me yesterday, and I just didn’t have the energy for more runaround yesterday, so waited until today. I had a very helpful customer service person today who says that the oncology pharmacy will be filling Ibrance for July, but Accredo should be filling it. I hate the thought of my Ibrance on a hot FedEx truck for days, when it is supposed to be kept below 75 Degrees. She said she would work on getting me a special permission to use the oncology pharmacy because it is local. We shall see. The good news is that since I’ve reduced from 125 mg to 100 mg, I do not have the burning and nausea like i did before. My MO doesn’t worry about low blood counts. She says studies proved that Ibrance doesn’t cause dangerous neutropenia in most instances, but counts do get low. I got denied again for a PET scan, so I guess I’ll be getting CT and MRI again. Has anyone been able to have head to toe CT or MRI? I am concerned there may be lesions or tumors in my head that has never been scanned
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Candy, interesting that ER-/PR-is rare. It happened to us both.
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ER-neg/PR-pos = 1.6%, ER-pos/PR-neg = 12.2%. TNBC = 19%, ER+/PR+ = 67.7%
One idea is ER-neg/PR-pos cancers are a heterogeneous 20/80 mix of the major cancer subtypes (TNBC predominating), but retaining some hormone sensitivity
https://jamanetwork.com/journals/jamanetworkopen/f...
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Dang, Cure-ious, you are a wealth of information. I read the article and it is waayy above my mind. But, is the article talking about primary BC versus metastatic? I started out as ER+/PR+ with the estrogen receptor being very strong. Now I have morphed to ER- at the score of 0. Wonder if this article takes into account MBC and the receptor changing. Too much for my mind to take in.
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GoKale, Congrats on the good news!
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Thanks KBL. I also hope I'm able to stay on Ibrance. I got some good news today..... one of the tumor markersthey checked on Monday resulted, and has dropped over another 100 units. I take that as a good sign about the effectiveness of the treatment so far.
Candy..... glad to hear you might be able to continue on Ibrance, best wishes for the decisions ahead which sound like they will take some research.
And congrtulations on the good results, GoKale.
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Candy, because I'm BRCA+ I've been following the Parps from their early trials and planned to try Lynparza once it was approved for MBC. My Guardant360 (sp?) test recommended it so I went for it.
Unfortunately, my side effects were rough and I didn't finish the third month. Once all the news about Covid 19 broke I realized lots of my symptoms were from a case of that so I expect someday I may give Lynparza another try and hope I'm in the low leukemia percentage Cure-ious mentioned. I'm thinking Holly is still on it without bad side effects (or leukemia). Has she posted lately?
Anyway I went back to Ibrance (never dropping the monthly XGeva), added Faslodex and have been fine with minor progression on my last scan. I'm thinking I'll scan again at the end of August and go from there. One thing I do plan is to take a month or two off Ibrance whether I've progressed or not. I need a break after just short of five years on continuous treatment. I think my sweet husband deserves a break too!
I'm wishing you well and praying you'll get clarification on the next steps, Candy.
Love from PatGMc
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Candy- they don't specify, so perhaps the numbers are just too low to track in metastatic setting? Well anyway now we have all the genetic testing to get other information about the cancer, so it may be the prognostic value of PR is not worth focusing on, we have better targets..
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Pat, Hoping the slight progression goes away, but if it doesn't you might want to look around for a trial near you of the ARV-471 or CERAN-SERD? You've had a good response and they can get more mileage out the estrogen-dependence of the cancer... When push comes to shove I will also look for a PARPi trial, but maybe one that includes immunotherapy.
PS Can you believe five years already?!! Time flies..
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Cure-ious, it is hard to believe I took the first Ibrance pill on October 1, 2016! What was your date? That time flew by, didn't it?
I'll be taking your advice to the MO for sure!
I keep thinking immunotherapy will be available to us soon and marrying it to a Parp sounds good to me!
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Hey Pat, maybe we can take the same trial!! In March I moved over to Ibrance-Faslodex, but haven't been scanned yet so don't know if its working. My MO says she waits six months with Faslodex because it takes so long to get going. In the meantime, I am checking around on the ARV-471 (they are supposed to be opening up a trial soon that allows for combinations with CDK4,6 inhibitors or Affinitor) or now this promising CERAN-SERD trial. And then after that, maybe the PARPi with immunotherapy, or whatever looks good that includes immunotherapy, because they say not to wait too long on that...
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Candy - i think the discussion of liver resection is a good one, in your case. Direct attack as PatMcG stated on these few liver mets and you will be able to get more time out of Ibrance/letrozole. I also agree with Sondra F that although you had some growth in the liver mets, it's slow growing and since nothing else popped up, I/L must be working.
RRabbit - checking in on your scan results!
Snowdrop - checking in on your appt, too!
GoKale - great news on your scan results, lymph nodes shrinking and bone lesions healing plus no new bone mets. Also great that your blood work was good so you started cycle 4. So happy for this news:)
FGodmother - Accredo has been fedexing Ibrance to me for 18- 19 months. Since it arrives quickly, I don't worry too much about the temperature fluctuations but that is an interesting point. Re scans, I have been told that to check for brain mets you have to do a head MRI only, not sure on that. It's good to hear that you don't have the nausea and burning on 100mg.
PrairieSea - that is great news that your tumor markers went down 100 pts.
PatMcG - first Ibrance in 2016, that is amazing! Sending prayers and good vibes that your August scans are good and no progression.
Cure-ious - I will be reading up on the ARV-471 and other news you posted, so thankful to have you in our corner!
My onc appt was pretty "unremarkable" as I already shared my scans were all clear. I was happy that my neutrophils were 1.09 yesterday - technically day 27 of my Ibrance cycle. Oncologist was pleased with that and I started cycle 20 tonight. I also scored a
medical ferry boarding pass (cancer swag ) which saved me a lot of time after my appts. Summer ferries are really busy, it was 104 degrees and my faslodex shots.... I am very thankful for that pass and feel like I earned it.Oh, the petscan clothing. I searched for and bought a pair of "sweat" pants that don't have any metal - all my yoga pants have a zipper somewhere which makes them not petscan candidates. I don't love going braless but have a cami that I wear and a light sweater or blouse over the cami.
Still praying and thinking about Jackie and Jaycee.
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I'd follow you anywhere, Cure-ious!
Be sure to use a rolling pin or an exercise roller on your Faslodex shot sites. That has worked well for me and others here. I also make sure we don't repeat the same spots and I get the shots while lying on my side in a recliner.
Every month when I go for the shots I run into my friend who has survived MBC with only Faslodex for more than ten years!
Love to you from PatGMc
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prairiesea, that is amazing to have dropped 100 points. Can I ask what they were to start and now? Mine have dropped a little over 100 points total the whole two years I’ve been on Ibrance and are still high. I hope you can stay on Ibrance.
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FGodmother - my doctor said that if my insurance won’t pay for alternating PET and CT scans every 3 months, he will order a CT scan and a Bone scan to replace the PET.
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I asked my MO about tumor markers and he said he usually doesn’t order those tests because he relies on the scans. But this time he ordered the CA-15-3. My result was 20 on a scale of 0-35.
The weird thing is that on 6/24 (for my xgeva shot) the result was 13.3, Status: Final. And the bloodwork yesterday (for my scan and regular appointment) shows CA-15-3 at 20. He didn’t comment on this. So it increased over 5 days that I was on my week off from Ibrance.Should I fret? LOL I know that doesn’t help.
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KBL. This is the CA 15-3 test I just got results on, this was the third time they've run this test. It was at 355 when first tested 3/20 of this year. (3 days after the bone biopsy that generated my diagnoses). After my first Ibrance 125 cycle it went down to 222 about two months later. Then this last one, about a month after the second test, and a week and a half into an extended break after second cycle, was down to 109. So a total drop of 246 points over three months, first on Ibrance 125 and then 100, with many weeks of between cycles because of low ANC. Kind of hoping if 75 works that things will continue in this direction even with lower dose if it allows me to take the drug on a more regular schedule. I'm waiting on the third results for the CA 27.29 test; it went down from 444 to 287 in the first two months, so hoping for another drop on that one also. After the second tests I mentioned this to Onc as a positive thing, his reply was "Well, we'd like to see them at zero." Seems a bit overly optimistic on his part....but,then I think at that appointment he kept forgetting I was only on my first cycle. Again, I find the range of perspectives, from wildly optimistic to hopelessly grim, between doctors or even from the same doctor at different times to be very disorienting. And I'm very unsure of how to interpret the TM numbers myself, as I really don't know what to expect.
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GoKale....just saw your latest after posting mine. I do hope the rise in your TM is not meaningul....my understanding is that between TM numbers and a scan, the scan results are more reliable, as the TM numbers aren't reliable for everyone. As noted above, I'm in the dark myself about what they actually mean. Just hoping mine aren't a fluke. My onc doesn't want to scan again until after 3 or 4 cycles of Ibrance which is taking awhile because I keep having to take longish breaks in between.....so for now, TM tests are all I have to go on for any sense of how effective treatment is.
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PatgMc- regarding using a rolling pin on injection sites- is that to break up scar tissue? The nurse I saw yesterday commented on scar tissue on my arm where I’ve had blood drawn. I wonder if I can improve my veins with some foam rolling or rolling pin?
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I'm on my second cycle of Ibrance (125 mg) and Faslodex injections. I have hardly any side effects except for mild fatigue. My white blood cell count went from 6.5 to 3.2 after the first round but my doctor has not decreased my dose. I take it within 30 minutes of my dinner each night as the pharmacist suggested.
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