Ibrance (Palbociclib)
Comments
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Pat, That is an excellent scan!!! I would be very curious to know if bumping up the Ibrance helps, Luce used to do that to great effect with Verzenio, and she managed to stay on it a very long time. I had slight bone progression at one point and they radiated the two areas so those just died back in further scans and we went on another two years before more showed up.You could consult a radiologist about that- will have to claim some bone pain, but who doesn't have that? Regarding Lynparza, there will probably be more effective combos coming out for the PARPi in the future anyway, and in the meantime we do have other options in trials like the SERDs or ARV-471, or the androgen booster, or the MORPHEUS trial for immunotherapy with a few MBC drugs:https://clinicaltrials.gov/ct2/show/NCT03280563 Lotsa options, and most fortunately you don't have to move to any of them right now!!!
Lee, Congratulations to you too, and enjoy stable!!!
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Cure-ious, I'm so glad I popped back in here tonight to take your basket of hope and pour it over my head!
Thank you, my friend.
Lee, please send us pictures of your garden as it grows. I miss having the stamina to do that but love celebrating the flowers of others.
Love from PatGMcGrinning
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PatgMc - I think you have a great plan for the slight progression the scan may have picked up and I , too LOVE the excellent info that Cure-ious shared. I appreciate you taking the time to take this in and also that you took time off to make sure you had a great Christmas. We all have to hang in there while the scientists continue to work on the breast cancer breakthroughs coming our way.
Lee64 - congratulations on your scan results! I so know what you mean by receiving these results and then the hurry up and plan the next 3 months! It's so bizarre and I am not use to it but celebrate with you! Please post photos of your garden as it grows, for sure!
Candy - great question. It is slightly annoying that my onc wont consider the 5/2 protocol and I did point out to her that it was published in the SABCS. I am relieved that she will consider 3 weeks on 2 off and let me stay on Ibrance since it is working so far. ...So, I'm happy overall.
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Pat - sorry to read of your progression, but it sounds like you have a wonderful MO you can work with, who is willing to try things "off piste" to help you work towards your goal. And a really good family Christmas in the year of plague well, heck, the cancer could have still progressed even if you had been on the drugs so really, not too bad an outcome!
Aprilgirl - Ive had blood numbers all over the place the last few months after my week off and MO does not want to consider moving me down to 75 unless there is a clear pattern of below .8 - she had me hold a week at .8 but will start me with anything over .9. I've done so well at 100 (and frankly I really have "enjoyed" 100) that I would prefer to go to 3 on 2 off if necessary rather than go to 75, and I suspect she would too. Her reasoning was a less conclusive trial data at 75 (please no one panic reading that - its her interpretation and I may have misunderstood/translated that and lost some granularity as it relates to my situation!). Either way - what does it matter as long as the music keeps playing?
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PatgMc you are amazing - talented & fun.
Jack5ie thinking of you and hoping things work out ok. When I was on a trial my 3 monthly ct scans often showed progression. The trial Onc would have them read elsewhere and they always came back stable - just throwing in a bit of hope for the Pet result.
Lee so pleased that you had good results and that you and I have a 3 month break 🤣
Cure-ious as always thank you for being there and sharing useful and hopeful information. Good luck with your new regime
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Lee, congrats on stable! Enjoy it 😊
Pat, Yours sounds like a good report to me too, and hopefully your plan to up the Ibrance does the trick.
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Lee- Woohoo !!! on the stable scans. On to 3 more months!!!!
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Pat, My sisters visited last week and decided my back yard had truly gone downhill and sad, with empty pots everywhere, etc., so they fixed it all up for me!! And so now I do have some flowers to share with you!
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Plus they added a dwarf lime, planted succulents and put in these garden art poles from Studio M- I highly recommend that you get some sisters!!
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Beautiful plants! You have great sisters!
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Again, thank you everyone. My PET is scheduled for the morning of 3/18.
Lee...congratulations on your stable scan! That's wonderful news!
Pat...I'm sorry to hear about your slight progression. Interesting that the doctor agrees with bumping up your Ibrance. I'm on 100 mg so I'm wondering if going to 125 mg will be an option. How did you do with the Lynparza? Was it awful? I also have to say that you are an inspiration. You seem to take things in stride while I fall apart.
Cure-ious...beautiful flowers and plants!
Sorry if I missed anyone but as usual hugs to all!
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Gorgeous Cure-ious! When are you having us all over for the pool party?
Speaking of pools-I've mentioned this before but for those of you newer to this dance-if exercise is tough for you and you have access to a pool, try starting with water walking or other exercises in the pool. You can do pushups with your hands on the sides. It was a really good way for me to get back into exercising after being very weak and stiff from the cancer and treatments. I was able to do things in the water I couldn't do on "land" and then gradually built up the muscles, balance, and flexibility to resume my previous activities.
Also-I am working on some yoga videos for women living with MBC. I'll let you all know when I post them. My first one is to help us with aches and pains in the back and legs. I was a certified yoga teacher for 18 years so this feels like a nice way to resume that activity.
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Chicagoan- Yes, let us know when you post the yoga videos. I would like to give them a try. And neat to "know" the yoga instructor and know that you are a MBC sister.
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Chicagoan, Me too, I want to see your videos, and yes getting into the pool and moving is my big goal, once it warms up a bit more.
Pat, Was just reading that you may want to wait for your PARPi to be combined with immunotherapy- wouldn't that be nice?!
Does the future of PARP inhibition lie in combinations? If so, with what agents?
We also have seen some really exciting new studies coming out, some of which are combination trials, especially with immunotherapy. We have known that PARP inhibitors and even DNA damage repair–based tumors may potentially be more sensitive to immunotherapies.
This is, I think, the natural next step. We've had some early reporting from these trials with combinations, showing similar efficacy in the tumor response, which for PARP inhibitors alone was 60%, which is high for trials. We're really going to see whether [the addition of an immunotherapy agent extends] the tail of response. That is one of the biggest questions as it's moving forward into further-line therapies that we're excited about.
Are there other alterations within the DNA damage repair pathway that could benefit from PARP inhibition?
The other question I get quite a bit is, beyond BRCA1/2, what about all of these other genes now on all these huge panels that we send? All DNA damage repair pathogenic variants are not the same. In some of these smaller studies, very consistently, [patients with] PALB2 mutations are having very similar responses to a lot of these therapies as [patients with] BRCA1/2 [mutations are]. It will be hard to do a PALB2-specific trial, but in my opinion, these patients should be allowed on these hereditary trials moving forward just as [if they had a] BRCA1/2 [mutation]. We're not seeing the same [responses] for genes such as ATM and CHEK2, which really haven't panned out to have specific predictive responses to some of these agents. PALB2 is the [only other biomarker] that's really coming forward as another identified mutation that we should start thinking about [as having] therapeutic implications.
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Oh, Cure-ious, the flowers are just wonderful as is the art! I love that you see those lovely flowers through at least one new eye and through a heart with love for your thoughtful sisters! I'm going to lie down for a nap and picture myself having tea with you on your beautiful patio! Get the scones in the oven!
Second vaccine done!
Thanks for the extra news about the PARPs. I'm glad my onc doesn't feel that I used up my chance at that earlier. I'm pretty sure my terrible side effects were actually a bout of Covid-19. That was before we knew about the virus symptoms and a miserable thing for me was being able to taste nothing which I, of coure, thought was from Lynparza..
Love from PatGMcVaccinated
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BevJen, thanks for your kindness, yes back pain is the worst, I really hope the mri results will be good I mean no more progression. I’m sorry you had bad back pain, just read your posts on bone met thread, I thought it was spasm. any kind of pain sucks. I hope pt exercise and medications work well for you.
I have a feeling this sudden and sever pain might be related to calcium level (?), when first I experienced this kind of pain it was right after first zometa infusion- that time I wasn’t recommended taking calcium- and this one happened few days after xgeva shot-I got this shot after a 6 months gap, and I might miss few calcium doses around the injection. both these drugs affect calcium level, I’ll talk about it with my MO.Jaycee, I am happy you got it, only super pods have drive through access. I am still patiently waiting for my turn.
Candy thanks 🙏
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Beautiful flowers Curious. That was so nice of your sisters.
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JayCee - sorry that getting the vax was a hassle. It is confusing and frustrating. My State finally set up a website to make it "easier" and to help providers with unused appts. But -it did not show "where" you were in the line. So I started calling some of the pharmacies. The 4 I called said they did not use the State's site and I needed to use their website to sign up. None of them were able/willing to use the thigh even with a DR note and PFeizer and Moderena guidelines that stated that the thigh was acceptable. So I finally grabbed the first appt I could. First Pfeizer dose yesterday. A little bruising at site, no swelling (yet). Fortunately no line, maybe because they are not a mass vaccination site. I sent a sort email to the District Health where I am and described my frustration with not having the thigh as an option, and let them know pharmacies may or may not be using the state site, and that people wanting a vaccine may have to find another way to schedule an appt.
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Weird about my counts re vaccine. Last Ibrance: March 3 (end of cycle), Covid vaccine: March 8, regular blood work yesterday at MO, March 10. ANC was 0.75 which is the lowest for me in over a year. Shouldn't my ANC be higher after getting the vaccine? The report of the blood work looked a little different than usual. They changed something. One value was LOWLOW instead of just LOW. One thing was NOT SEEN, whatever that means. Hope it is not something I need. My nurse told me about the low ANC but said my white count was ok. MO, my nurse, and I (we are a team) decided to take an extra week off Ibrance. I was going to do that anyway but I let them think it was their idea.
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Jaycee- My MO recommended I take 1 week off Ibrance before the vaccine AND 1 week after the vaccine. I then got a CBC before starting the Ibrance back. My ANC was just at 1.0. I thought being off for 2 weeks the numbers would be better. I wondered if the vaccine lowered the counts. I mentioned to MO nurse. She said she didn't know. Makes you wonder.
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I was confused because I thought a vaccine was supposed to ramp up the immune system. Not for us, I guess. Which may be good for the two of us because we would not want our autoimmune diseases to go crazy. I love using technical terms like "ramp up" and "crazy."
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Jaycee- Good point about the autoimmune issues. So confusing the different ways the body can respond.
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Cureious - Thanks for the PARP & Immunotherapy information. That's what I am on now.. olaparib and Keytruda. I love your flowers and your pool. I now have flower and pool envy. Pools are rare in the NW and I think April can attest to that.
Pat - I know you had a hard time on olaparib, but when it comes down to moving on to a different therapy, could you do a different parp inhibitor? Maybe that won't give you the awful SE you had before.
Chicago - Yes! Please share your yoga videos. I need to get moving.
Jackie - I'll be with you on 3/18.
Lee - Yay for stable!
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Well, no side effects beyond a sore and heavy arm for the second Covid shot! I think the bone pain I had on first shot was because I was still on femara and already had so much arthritis pain that the shot just exacerbated it. Skeletal and joint pain is so much less on Faslodex, that its not even funny, as they say...Just starting back on Ibrance after taking a month off during this transition- Stopped taking Celebrex and also stopped Priolsec for GERDs and so much better energy!! ANCs did make it to 1.5 on last bloodwork, but geez that took a whole month!!! Previous blood draw they were at 0.53
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I had low counts also after the vaccine - under 1 with two weeks off (and I had a sinus infection in there as well). Counts also struggled in February, but I am feeling much better this month. Suspect in Feb I may have really overdone it on the exercise, so am taking it easy this month. I've found a seniors beginner barre routine on Youtube that I am enjoying very much and try to do two or three times a week, along with walking.
Met with gyn surgeon today for the pre-surgery clinical and due to the low Feb counts, Easter, and another national holiday in there, I have a surgical reschedule for 30 April. 14 days isolation in advance, 72 hour pre-surgery covid test, etc. Im supposed to have my second shot on 12 April - I may raise it with my MO end of the month if they can shoot me up there and then so I can get ahead of it. You almost need a computer program to determine the optimal date based on the Ibrance cycle, Covid requirements, operating room bookings, and blood results!
A little disappointed as I want to get this done, but I was also jamming in surgery around a really hectic two weeks at work with late nights. Then I can take the first week of May as medical leave and enjoy better weather.
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Hi Cure-ious,
Love the beautiful pics you posted! What a great sister! I only have brothers, so I can't expect them to do that for me...LOL. Its so nice to see your beautiful SUNNY backyard! I live in NJ and we're seen snow/rain for the last month, can't wait for summer. We do have a sunny day today, so I'm going to head out and enjoy it!
Wishing you sunny, healthy days ahead!
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Here is a Nature paper from 2019: https://www.nature.com/articles/s41586-019-1007-8 showing that just four of the 11 IntClust breast cancer subtypes are most likely to lead to a late (greater than five years) recurrence for ER-positive tumors. So perhaps most of us will sort in one of these four categories:
"Among ER-positive patients, those with IntClust3, IntClust7, IntClust8 and IntClust4ER+ subtypes exhibited a better prognosis, whereas patients with IntClust1, IntClust2, IntClust6 and IntClust9 subtypes exhibited late-recurring cancer with distant relapse up to 20 years after diagnosis. The IntClus1,2,6, and 9 subtypes together account for around one quarter of all ER-positive tumours and the vast majority of late recurrences. Importantly, the four 'high risk of relapse' subgroups were enriched in characteristic genomic-copy-number alterations, which represent the likely drivers of each subgroup."
IntClust2 tumours (4.5% of ER-positive cases) are defined by amplification and concomitant overexpression of multiple oncogenes on chromosome 11q13, including CCND1, FGF3, EMSY, PAK1 and RSF1. Approximately 96% of IntClust2 have the RSF1 amplification, compared with 0–22% in other subgroups.
IntClust6 (5.5% of ER-positive tumours) is characterized by focal amplification of ZNF703 and FGFR1 on chromosome 8p12 (100% of IntClust6 cases, versus 2–21% of others).
IntClust1 (8% of ER-positive tumours) exhibited amplification of chromosome 17q23 in a region spanning the mTOR effector RPS6KB1 (also known as S6K1), which was gained or amplified in 96% and 70% of cases, respectively (versus amplification in 0–25% of other subtypes).
IntClust9 (8% of ER-positive cases) was characterized by amplification of the MYC oncogene at chromosome 8q24, with amplification in 89% of these tumours (versus 3–42% of other groups).
"Thus the late-recurring ER-positive subgroups are defined by genomic drivers, several of which are viable therapeutic targets."
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One of these four groups, IntClust1, has a genomic amplification that includes the TRIM37 gene, which makes this subtype uniquely sensitive to PLK4 kinase inhibitors, in development for clinical trials.
https://www.nature.com/articles/s41586-020-2690-10 -
Katrose...I am in New Jersey as well. I don't know if you're a religious person, but this past Thursday when it was a beautiful day we went to the Saint Padre Pio Shrine in Landisville, NJ. It's so peaceful there and a nice drive to take on a beautiful day. Here are a few pictures.
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Just LOVE the blue blue sky Jackie!
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