Ibrance (Palbociclib)
Comments
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Wow curious I am glad that sfcake asked you and you shared your experience, I thought I misread your first post! what a story about that drug dealer guy! every piece of the story is shocking, and the worst part is that the board let him practice to pay his fines? I mean really??? and your almost current MO should at least inform you before she took study leave, it is minimum respect to let her patients know, how about dropping some lines I am going to study leave from- to- dr X will take care of you in case of ... we are not number.
Pat, thanks for sharing your stories with half-dose guy and the wonderful doctor who prefers to see those who are in need most, what a great doctor. I also wanted to thank you for inspiring words you posted on bone thread, I really needed it at a time I was reading. Your arts are fantastic, thank you so much for sharing with us.
I fired my first MO, his bedside manner was awful, he barely spending around 3 minutes in any sessions we had and in response to any of my questions he would say “why do you want to know you are already stage 4” then he’d report for insurance that he spent 45 minutes and answered all my questions! Once I accidentally saw a report I asked myself what other lies he is capable of? he put me in a study of his, on a new drug-which administered similar to xgeva that is why I didn’t understand at first- without my knowledge without my consent and wanted me to do pet scan every 2 months. Then he and his nurse started threatening me that my report (complaint) would have consequences and they can discharge me from the clinic and treatment I should get... I got inspiration from our Jaycee-wonderful woman- and so fired him.0 -
I’m reading these horrifying Mo stories as I sit in the waiting room of the infusion center. I feel like a burden to my current onc so I know I need to find another. But I’m frustrated to the point of tears trying to find an adequate replacement. I was assigned my current onc because I was in a town where I didn’t have any doctors when I got the ER diagnosis of mets to bones. When I called the cancer center, I got the first available doc. Although she isn’t unethical, she is definitely not the doc for me. I don’t want to switch docs only to find out that I didn’t improve my situation. I’m currently driving 2.5-3 hrs to my MO. I’m considering another NCI facility that’s 2 hrs away. My husband and I both feel like I should have a local oncologist in case the poop hits the fan and I need quick help and can’t make the long drive. But right now the idea of juggling two doctors after this past summer’s debacle is the last thing I want to think about. So what do I do? Part of me just wants to throw in the towel and pick a doc nearest to me (who won’t specialize in breast cancer).
Signed,
Frustrated in Florida
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This is interesting - my MO is also out on leave right now. They cancelled my appointment with her next Wednesday, but I'll still get my Zometa infusion that day. They expect her to be back in time for my mid-September appointment. Also her office was able to get my end-of-September scans ordered and I was able to get those scheduled today. I hope she comes back because I really like her (and I hope she's OK).
If I need a new MO I'm going to try for a young one who isn't going to retire any time soon. I really like the doc who treated me for polycythemia (he's in the same department of the same clinic), but he's older, too, and I think he'll be looking at retirement soon.
Anyway, happy Friday the 13th to everyone!
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RK2020 & Snow-drop- That physician board deciding the MO needed to keep his practice to be able to pay the fines shows how its all about the $ for many in the system, but truly wonderful people are out there, we should expect to put in work to find them. My current MO at one point commented that our treatments "are all palliative, anyway", to which I said "well, more like stepping stones to the better treatments that will make all this go away so I can die of something else", but still it told me how she thinks about it.
My husband was diagnosed last year with multiple myeloma, a disease is in the "almost-cured" category, with lots of treatments and hope. But the first MO he consulted told him he had "aged-out" of stem cell transplants (total BS) and started him on a chemo combo that totally kicked his butt and he ended up in the ER. Over the following five days that he was in the ER, his MO did not even bother to return their calls!!! So of course I insisted he change MOs, and he followed a newer procedure that gradually increased drug levels over a couple weeks, and he did fine. When I asked about a stem cell transplant, the new MO said "of course", and my husband went through that a year ago now- its scary to think what kind of shape he would be in if we had stayed with her. So yeah, some MOs can be shockingly bad
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Pat, I LOVE that piece!! What is falling out of her super-silvery bucket?! And the dots on the side of the lampshades? Fascinating... You must find new inspiration!!!!
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RK2020,
In researching for a new MO, you should think in terms also of where you might be hospitalized should the need for that occur. My MO is in Baltimore, and we live almost an hour away. When I had to be hospitalized, it was in Baltimore. It was awful all the way around. Perhaps your idea about a local doc is a good one, just for that reason. Or find yourself a more local doc who might be linked into the same hospital system but at a closer hospital.
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Cure-ious - you drive home the point why it’s so important to get the right MO. Kudos to you for recognizing it was time for your hubby to change docs.
BevJen - all good points and that’s why I definitely need to get someone local. And maybe someone at a bigger facility too. But definitely someone local. I’m just worn out thinking about this today. Over five hours of driving and 3 hours at the cancer center to get a blood test and fulvestrant shot. I’m ready for a nap.
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Cure-ious, thank you! I'm so glad you like it as it's one of my favorites. The bucket is spilling "Happy Dust". (We've been sprinkling invisible Happy Dust on each other since our girl was born almost fifty years ago.) The red dots on the lamps are clown noses. Now it all makes perfect sense, right?!
Love from PatGMcLostHerMindLongAgo
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Anyone on Ibrance that has thought about a Covid vaccine 3rd booster shot?
I read the FDA approved the 3rd shot for the immunocompromised, but vague on who all those people are. I messaged my MO nurse and she said nothing has been said yet in their office for their patients.
Thoughts....
I had the first shot in January and the 2nd in February.
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Candy, I’m planning to ask my MO for an antibody test to see if the vaccine worked to build my response. im willing to get a third shot but if I have antibodies I may hold off a bit. I see MO in Sept and will also ask her opinion, of course. I don’t think it’s really known if the vaccine is as effective with our lowered blood counts.
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I’m planning on getting it, probably will ask afterwards. In FloriDuh I think it’s good to do.
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Hi Candy & ladies,
Here is the official CDC guideline regarding the 3rd shot, but do check with you MO about the timing of the shot. Also at yesterday's ACIP meeting, CDC still recommended against antibody test. I know at my local support group, a lady had to go through a lot of trouble to get the spike protein antibody test rather than the nucleocapsid antibody test. spike antibody test against antibody after vaccine, while nucleocapsid tests antibody after infection. I also attached the slides for yesterday's ACIP meeting.
https://www.cdc.gov/coronavirus/2019-ncov/vaccines...
https://www.cdc.gov/vaccines/acip/meetings/slides-...
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Curious - yeah, I got the "its all palliative anyway" line as well from someone (I dont know who, there were a lot of oncologists of various stripes involved before I got a permanent one, though I think it was the glioblastoma researcher which I guess makes sense in his world) and that was the most defeatest way of putting it ever. The way it was delivered too came off as "well, guess we are stuck with you since its not early stage, so accept it and don't complain". New (breast-specific) MO would never say something like that.
Candy - this question is on my list for MO chat next Monday. UK will be giving boosters from September to the clinically vulnerable groups, although MO noted Covid was not as critical an issue for MBC patients on immune-suppressing drugs compared to the blood cancer folks. UK is planning to mix doses and offer Pfizer exclusively as third dose, especially as most of us had AZ for the first two. Most recent plan is to offer it alongside flu shot (as everyone in these groups gets those offered free every year anyway) but I'm not sure I want both simultaneously. Similar to Rosie, I'd rather do flu first on time (likely to be a bad season this year) and hold off on third Covid for a few more months as my second was in April. There should be more information by the turn of the year on impact of the vaccine on specific vulnerable groups, and I don't intend to be putting myself in harms way before Christmas anyway. Obviously if numbers change or come out really favorably for that third dose then I will consider moving it up.
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RK, I would find a good MO specialist in BC in a larger/ teaching center no matter how far it is, and establish with a local internal medicine physician who affiliated with a good local clinic/ hospital, so you can do your monthly blood tests+ injections locally, leave scans and mri for the larger clinic, a long trip every 3-4 months is manageable. Most MO s offer telehealth as well, so seeing MO at the date of scans and a follow up via zoom would be appropriate.
Candy, I got my shots in April - it was the earliest time that available to my age group!- like yours I received instructions for being off ibrance one week before one week after each shots, so my first thought was I am good for a good while but considering delta and delta+ variants I will ask my MO how soon I can get a booster shot, I think I’ll send her a message next week.
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Question - Have any of you on both Ibrance and Faslodex gotten Covid (pre or post vaccine)? If so, what was your experience (I hope you've recovered well)?
I have a child who is supposed to start kindergarten this fall, and I'm trying to assess my risk as the delta variant starts to spread in our area. Thanks!
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Jsniffs - I had the Pfizer vaccine during my first month of being on that combo. First dose did nothing to me, just a sore arm. 12 hours after the second shot, I had a slight fever and just felt out of it. Didn’t go to work that day, but was back in the office the next day.
Hope this helps.
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Thanks Rosie. I just realized that I wasn't clear. I'm wondering about people who tested positive for covid (especially after getting vaccinated aka "breakthrough cases"). I've been vaccinated myself. I'm trying to figure out if people have experienced more severe covid disease while on Ibrance/Faslodex. In addition to being nervous about my child getting covid, I'm nervous about the Ibrance/Faslodex combo leading to more severe breakthrough cases. I saw somewhere that Faslodex actually put unvaccinated people at a higher risk for more severe disease. I'm curious if anyone has any experience that might put my mind at ease. I realize that a lot of this stuff is still evolving.
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Hi Jsniffs, This won’t answer your question, but I was tested for COVID and the Flu 6 days ago and was positive for the Flu but luckily negative for COVID. The doctor put me on tamiflu and feeling so much better. I was suppose to start Ibrance and my oncologist doesn’t want me to start until the 20 th of this month , once I’m no longer taking the flu drug. Can you or anyone tell me the side effects of Ibrance?
Tks
Linda
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Hi Jsniffs, there were a couple of people on the board got Covid before the vaccine. I don't think they were on Ibrance and Fas, but if I remember correctly, one was on Xeloda. one of them recovered at home, and another got the monoclonal antibody. You should talk to your MO about getting that 3rd dose of covid vaccine if you can.
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Speaking of the third shot, Memorial Sloan Kettering put out their guidance that confirms what my oncologist told me weeks ago - Ibrance is not considered an immuno-compromising drug, and we are therefore NOT in the approved group for a third dose. Targeted and hormonal therapies are not in that category, so I'm really confused as to why other friends on facebook support boards are rushing out to get that third shot.
Does anyone else's Oncologist have a differing opinion? This is MSK's guidance:
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Ciaci, CDC official recommendation & ACIP meeting consider ppl with both solid tumor & blood cancer in active & recent treatment immunocompromised. They did not specify which medication you have to be on to be considered as the qualification for boosters. I would recommend talk to your MO about your specific situation. I know there r quite of few us on ibrance who struggle with low white blood cell counts. I am not sure why MSK put out that guideline. Here is a study from cell.co showed ppl on cdk4/6 developed lower antibody than those who are not on cdk4/6. Although this is a very small subset of the study participants.
https://www.cell.com/cancer-cell/fulltext/S1535-6108(21)00285-3
"Association with additional cancer therapies
We observed high rates of post-vaccination seroconversion in patients on hormonal therapy (100% seropositivity, p = 0.04) and ICI therapy (97%, p = 0.69, Fisher's exact test) when compared with the rest of the cohort. Interestingly, while all patients on CDK4/6 inhibitor treatment showed positive anti-spike IgG test results, notably antibody titers were very low in this small subset (n = 5, median 1,242 AU/mL SD 2,435 versus median 6,887 AU/mL, SD 17,843 for overall cohort) (Figure 5). Given the known involvement of the CDK4/6 pathway in immune activation (
Chen-Kiang, 2003; Cingöz and Goff, 2018; Laphanuwat and Jirawatnotai, 2019), this might be biologically plausible and warrants further studies into the impact of CDK4/6 inhibitor on vaccine efficacy. We also noted trends toward lower titers among other subgroups, such as patients having received BCL2-or BTK-targeted therapy, consistent with prior observations on their negative impact on vaccine efficacy (Pleyer et al., 2021) (Figure S3)."0 -
My MO told me that even on Ibrance with really low counts I'm not immunocompromised. When I'm off Ibrance for 2 weeks, my counts get into normal range. It doesn't wipe out my immune system like chemo did.
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This just came out of NYT, it looks like it's matter of when rather than if we need a booster.
https://www.nytimes.com/live/2021/08/16/world/covi...
"The Biden administration has decided that most Americans should get a coronavirus booster shot eight months after they completed their initial vaccination, and could begin offering the extra shots as early as mid-September, according to two administration officials familiar with the discussions.
Officials are planning to announce the administration's decision as early as this week. Their goal is to let Americans know now that they will need additional protection against the Delta variant that is causing surging caseloads across the nation.
The first boosters are likely to go to nursing home residents and health care workers, followed by other older people who were near the front of the line when vaccinations began late last year. Officials envision giving people the same vaccine they originally received.
Among other worrisome signals, Biden administration officials are particularly concerned about data from Israel suggesting that the Pfizer-BioNTech's protection against severe disease has fallen significantly for elderly people who were vaccinated in January or February — Sharon LaFraniere"
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Ciaci and all - my oncologist has told me in the past I am not "immunocompromised " by Ibrance as it suspends white blood cells, doesn't kill them like with certain chemo (or something like that?). However, as I have been bumped down to 75 mg for low WBC over the past 18 months, I kind of feel like I am borderline immune compromised! I go in on Monday and will ask - I might even ask via mychart messaging . Seattle Cancer Care/Fred Hutch sent out an email this afternoon which sounds like the same info about patients with solid tumors, blood tumors, organ transplant patients etc qualifying.
Cureious - I sure hope your MO comes back. It really is hard when our MO's have mysterious absences - that happened to me a few years ago. I was 6 years out from stage 1 so it wasn't tragic, but I was bounced around a bit. I still miss my first oncologist. She went on a leave of absence, which was extended to medical leave and then retired.
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April- Obviously I'm curious what is going on, it would be surprising if she left as she is probably not quite mid-career yet, but for sure its very hard in oncology, let alone what else may be going on in ones own life.
For vaccines, I read that neutrophils are a critical component of a proper response, so took the vaccine after my week off of Ibrance, and held off for four more days after the shot. But even with lower ANCs we probably have plenty active neutrophils to get a great response, it would be clearer if they tested us directly for antibodies against the viral spike protein.
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Jsniffs - I had both Pfizer vaccines in February and ended up in the hospital for 4 days with covid dx and severe neutropenia 2 weeks ago. WBC was 1.0; ANC was 0.5. Had severe cough, high fevers, chills, fatigue and loss of taste and smell. Was treated with antibiotics due to low blood counts. hubs also tested positive although his symptoms were mild -just a cough that was more like a tickle. Just followed up with primary care doc yesterday and blood counts have improved although still have fatigue. I have to wait for 90 days after onset of symptoms b4 I can get booster vaccine.
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a-friend - So sorry you are dealing with the flu. As for symptoms, I've only been on Ibrance (125 mg) for a little less than 2 weeks. I have yet to get my blood/neutrophil counts checked. The main thing that I can say for me is that everything has dried out...way more than just being on Faslodex or Letrozole alone (and I already thought those were pretty drying). Drink lots of water and lubricate/oil any sensitive skin.
GoldensRBest - So sorry to hear about your Covid experience and hospitalization! I'm happy to hear that you are out of the hospital. I can't even imagine what you might have experienced if you hadn't been vaccinated. Thank you for sharing, and I hope you continue to feel better.
Thank you everyone else for the extra info.
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Cure-ious - I hope your MO returns back to practicing soon. Personally, I’m tired of playing oncologist roulette.
GoldensRBest - I’m sorry to hear about your Covid experience. When you received your vaccinations, did you have a reaction at all? Jab two knocked me on my butt so I’m hoping that means I had a robust immune response. 🤷♀️🤞🏻
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I had 3rd shot today. Nausea wooziness and fatigue. Took Tylenol and felt better after waking. Sore arm of course. I’m on my off week of ibrance and will take a few more extra days to make sure I give my immune system a chance to recover.
Tany
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RK - my vaccinations, which were in February and 3 weeks apart, did not cause any major side effects. 1st one caused a sore arm, 2nd one made me achy for 24 hours, basically chilled on the couch and watched tv. Was grateful for the minimal disruption in daily living. This damn virus is so sneaky. Never expected to get Covid. But then I never expected MBC after all these years. Need to keep our eyes open
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