Ibrance (Palbociclib)
Comments
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Hi Everyone, I started my first cycle of Ibrance 5 days ago. I’ve been one of the silent readers for the past couple of weeks and read a few peoples suggestion to take it with dinner, which is what I have been doing at 7:30 each night. I was very anxious about starting it and all the possible side effects. I don’t want to jinx myself, but so far, I’ve only noticed a bit of dry mouth and slight stomach cramping. I’ve also had some vivid dreams and also wake up at night around 3am. My MO had me start the Eligard and Letrozole two weeks before starting Ibrance so I could adjust to that first and we could see what SEs that might cause. I have bone mets and I would say back pain and joint stiffness definitely seemed to increase. I am intrigued by the thoughts on efficacy of capsules vs tablets. Does anyone know when they made the switch? Did they have to do clinical trials to confirm the tablets were as effective as the capsules? Thanks for all the helpful information.
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SF-Cakes, sorry to hear about the difficulty you’ve been through, how your MO understood you needed antibiotics, Based on blood test or symptoms?
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Snow-drop, the ER doc started me immediately on IV antibiotics because I had a fever of 101.9, which could indicate an infection that my body might not be able to fight off, given how low my WBC, neutrophils, and platelets were. The only symptom I had was a fever (and chills!) They ran a blood culture to see if I had an infection from some source other than my own body - when our ANC is seriously low, apparently our bodies can get an infection from our own bacteria, and this can become serious if sepsis develops.
I felt overall fine, and I didn't have any other infections, so was able to go home on oral antibiotics after two nights in the hospital. My body clearly was feeling the Ibrance! 125mg is just way too strong for me, so I'm now trying 75mg. MO wanted to try 100mg, I said nope, so she's fine with trying 75mg. Again, this is a RARE side effect (about 2% of patients get it, which I was like, "well, of COURSE I've got it"). I also had both of my covid vaccines around the timing of beginning and end of that first cycle, I think it's possible that played a role.
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Hi All
I would like to join you all on this thread as a lot of us are around the same time in our treatment
I have just finished the 3 rd cycle of 125 capsules and just had blood work which showed very low neutrophils and platelets I am supposed to start Ibrance today but as I have an appointment tomorrow I’m going to wait till I see the onc I am going to insist on getting my scans because I’m due for the covid jab on Friday and if that affects me they may not be able to evaluate them properly and I really can’t wait to see if this treatment is working I feel it’s not somehow as that tumour marker CEA is not shifting at all
Side effects have been mainly my eyes itching watering and generally making me look sick Not a huge amount of energy and a few minimal others like my sense of smell being weird
On the week off I just seem to crash and go into some sort of depression and that’s unusual for me-and the Faslodex jabs seem to knock me out as well for a few days
Hope you are all dancing along !
Warmly
Anna
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annadou, I just wanted to jump in and say that my CEA has been between 6.0 and 8.4 for my almost two years of treatment. Sometimes the tumor markers will go up in the beginning before they start to come down.
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Thought some of you might be interested in this:
The addition of SDX-7320, a novel inhibitor of methionine aminopeptidase 2 (MetAP2), to palbociclib (Ibrance) was found to inhibit MCF-7 tumor growth and reduce the expression of proteins associated with resistance to palbociclib, according to data from a study virtually presented during the AACR Annual Meeting 2021.
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SFcakes, thanks for the useful information, interesting to know our own bacteria can cause infection due to low counts. I hope dose reduction works for you.
I started breathing problem during night sleep once I started ibrance, it is like my breath getting stopped, feeling like drowning then waking up... long time ago I read somewhere that this related to low RBC, which affects oxygen circulation. Has anyone experienced this trouble breathing, any advice would be helpful.
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Snow-drop, I think I can relate. I didn't know it could be related to RBC, which mine is below normal. I will fall asleep and seem like I wake up quickly taking a deep breath. To me it almost feels like I stop breathing and that's what wakes me up. It doesn't happen every night, but it startles me when it does. Sometimes it happens two or three times in a row. I thought I was nuts. I've never mentioned it to my doc and probably won't.
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SF cakes and Snow-drop--- My first MO said that when an ANC is 500 or under your own mouth bacteria can make you sick. So, evidently, our own bodies can cause illness with extremely low counts. We just do not have the capacity to fight anything off like normal.
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JACK5IE, thank you for the article. I read it and am not quite sure I understand, but anything that will help is great. I would assume you have to know about the gene that it inhibits.
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Rhogobel & Simone, thanks for that very useful info - I have discontinued my cbd oil & glad to hear taking cannabis is ok. I plan to try some gummies this week, just got my mm card.
Denise, glad things are going good. ( We just got rain, no snow
. I go to memorial hospital in n conway for treatment btw). Jacksie, thanks for posting that article, going to read it now.
I'm on day 5 & having no problems so far...moved my dose to dinner, still have some insomnia but a little less than when I took it at 10 pm. My sense of smell is off as well!
Best to all, & many thanks to those "old timers" who give us newbies advice, so helpful & reassuring!
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KBL, thanks for sharing your experience, I won’t mention it to my current mo as well, former mo’s response was ‘I don’t understand’ and he wrote down’depression’ on my chart instead!!!!!
Candy, good to know about low ANC’s potential problems. I will save it in my notes.
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Hi Ibrancers - sorry I have been a bit absent - was visiting my parents and sister/family in So. Cal now that we are all vaccinated (still wearing masks in public and being careful, of course!).
Dutchiris - I am sorry to hear about your progression - keep us posted on your next treatment and sending you tons of positive energy and prayers that this next treatment works well for you and kicks cancer to the curb!
Candy - how's it going and were you able to get more info on your shoulder pain/scan results?
SFCakes - hope you are doing well on 75mg!
Welcome to the new ibrancers (Prariesea.Amanda6 and Sunshinedaydream - and any others I might have missed. I started Ibrance end of November 2019 (on Thanksgiving). Like everyone, I was still in shock over my stage IV status, I was pretty much terrified about Ibrance - both if it would work and also if I would feel terrible with awful side effects. I started on 125 mg. I got a couple of mouth sores the first few cycles. After 5 months my dose was reduced to 100mg due to low white blood counts and the need to take an extra week off for my WBC to come up. Fatigue wasn't too bad and most importantly I started feeling better within the first 2 months as my cancer was shrinking (cancer in nodes put pressure on my wind pipe which went away and my voice came back - cancer had paralyzed my left vocal cord). I was dropped to 75 mg a few months ago for low WBC.
I work full time selling real estate. I was very concerned when I found out that I was stage IV about keeping up on work and if I would feel ok and really be able to service my clients. My oncologist asked me to give it a few months so I could settle in to the medication and this new reality. I feel lucky/blessed/elated to tell you that even with all the Covid restrictions and fear, 2020 was my best real estate year. I have some fatigue, but Ironically, the covid restrictions and social distancing really helped me stay home and not be "on the go" as much. This helped me focus on sleep and important things like walks with my husband and dogs. Everyone has different experiences on medication but I feel like my side effects are minimal. I have lost hair, probably 30% but my hair is normally really thick so it is not that noticeable.
My advice is to take it one cycle at a time and then one scan at a time. I had a canker sore the first Ibrance cycle, but not the second. Had one again the third cycle. That side effect has not returned and it seems like every cycle is a bit different? I will continue to work as long as I feel good. If I have to change treatment and I don't feel good, I will reconsider and might "retire". I also decided to not share my dx with work colleagues or everybody I know. Close friends and family know, of course and are wonderful. When I was stage 1 back in 2008/2009 the random comments from well meaning acquaintances really took a toll on me (such as cancer horror stories about their aunt that that breast cancer). I may change my mind and tell people if I change treatment and feel the need to retire, but for now, this is working for me!
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Hi everyone
Has anyone seen or know about this?
https://rupress.org/jem/article/215/1/115/42503/Re.
Wishing you all a good day
Ann
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Hi everyone
https://rupress.org/jem/article/215/1/115/42503/Resolvins-suppress-tumor-growth-and-enhance-cancer
Does anyone know or heard about this?
Snowdrop and KBL could you have sleep apnea ? Sounds a bit similar
Wishing all a good day
Ann
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Going to my monthly MO appointment with blood draw, Zometa, and Faslodex today. Blah.
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Rosie Red I’m in for regular appt support for you. There’s nothing regular about that 3 inch faslodex. Reflecting. Awww the things we get used to. Hope all goes well today. I have my “regular” appt tomorrow.
Tany
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RosieRed - also in your pocket for your regular appt today!
Tanya - in your pocket for your regualar appt tomorrow!
Candy - I think you have an onc. appt as well, so in your pocket too!
Like Tanya said, it is surreal what we get used to - the "new normal" for us is a lot.
XXOO to all of you!0 -
annadou, maybe. I have had a thickness and hard time swallowing since about six months after diagnosis. Maybe that causes an issue.
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Thanks Tanya & April for being there for me. Cancer center was busy, so I was there for over 2 hours. Just snarfed down ravioli from a can since it's an hour past lunch time and I have a hard time eating before an appointment no matter how regular they are.
I'll be in your pocket tomorrow, Tanya. And for anyone else who needs me to be there.
Keep on dancing!
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Cross posting----
Well, I am home from my MO. Tired. Well I guess the liver tumor boards recommendation is to "watch and wait" per my MO. Guardant test was not helpful--- no mutations seen, not enough circulating tumor cells. So.... I asked about a tissue biopsy next. My MO said "Good idea". I feel I am having to suggest things to my MO--- I suggested the Guardant test last month and she said "Good idea" then too. She doesn't suggest this stuff, I do.
Then on the way home (the 2 hour drive by myself) I was mulling over the appointment and when I got home I messaged my MO nurse. I asked if I am I getting ahead with suggesting these biopsies-- liquid and now tissue. I was off Ibrance a lot for the Covid vaccines and then the scan showed increases in sizes of the liver mets. Could it have been being off the Ibrance so much? And not mutation progression? The nurse messaged back the MO wants the liver biopsy now because it takes 3-4 weeks to get the results-- they use Tempest--and she does not want the delay later if we need to change treatments.
IDK what to do. I hate to go thru a liver biopsy and get no information again like the Guardant test. Anyhow, I am tired and not thinking well tonight.
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Candy, I can sympathize with you. I feel I guide my MO as well. I almost feel like it’s a job. After my emergency room visit, which was over $2,000 with no answers, I now have an abdominal MRI and a brain MRI set, plus I’m having another endoscopy on Friday. I think the brain MRI will be negative because I have lobular and the chances are so rare, but I think, what if I don’t have it? It’s a mess because you think, am I testing too much?
I would have the biopsy because if you don’t and find out it was something, you won’t ever forgive yourself. That is just my opinion. I’m definitely not saying you have to listen. Hugs.
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Candy - I agree with KBL and would do the liver biopsy. You should get more info from a tissue biopsy vs. a liquid biopsy, from what I have read. I understand how much you are advocating for yourself and at a certain point, it feels like isn't it the oncologists job to tell US what to do, since they have the experience and training. It is exhausting.
KBL - you have had to advocate so much for yourself the entire time. It is so overwhelming and exhausting! I am glad you have an endoscopy this week along with the other tests and also hope you find some answers and can stop having so much pain.
I had to fight for two months to get doctors to take my symptoms seriously. I felt really defeated and beat down by the time that I finally got a CT scan that led to my dx. It was brutal.
I have learned so much from all of you on these boards, I am a much more aware cancer patient and I appreciate all of you.
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Thank you, aprilgirl1. It does get so exhausting, and each time I have one more test, I think this is the last one I’m going to do for a while. Right now I’m set for this endoscopy, an abdominal MRI, and brain MRI. I swear, after these three, I want to be done and just do monthly visits for as long as I can. It is so exhausting.
I’m so glad you feel this site has helped you along your journey. I feel the same way. I sit here some days and feel the ladies on here are the only ones I can be totally honest with. No one wants to tell their family how crappy they feel and especially what they’re thinking.
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Ok here is a question for you all----
My MO said that if we move to another hormone therapy, say fulvestrant, then I cannot continue a CDK. Because the paperwork to the insurance company would say "progression" on the AI and they would no longer pay for Ibrance due to progression while on the med. If she writes "unable to tolerate AI due to joint pain" (which I have) and that is why the hormone therapy switch, then the insurance company could review my records/scans and see the progression and deny the Ibrance. And call us liars and she would be in trouble, as insurance fraud, I guess. So if we change the hormone therapy, we have to move from Ibrance too.
I know there are trials with a CDK as 2nd line, but I am not enrolled in the trials. And I read/hear about continuing to use a CDK 2nd line.
Do you all know if this is right? Can I still do Ibrance, or Verzenio, as 2nd line with another hormone treatment????? I have an individual insurance plan, not Medicare. Wonder how I can find out.
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Candy, thanks for update. Think that your knowledge is way more than your MO’s patients, so she relied on you. and that her response is too academic, they would never say no directly! I personally would wait and watch for a month and take another scan then make a decision. But I am sure you evaluate pros and cons of each ways perfectly. There is an active thread about post vaccine, ladies share their experience, it is documented that vaccine causes lymph nodes swallowing, then why not affecting other tumors? Still many things about this stupid virus and the vaccine that scientists don’t know yet. About the insurance, I think you can reach them out directly, there should be a case manager that can answer your questions.
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As you probably know, I am no longer on Ibrance and letrozole. Fulvestrant will likely be my next treatment. I go to an NCI accredited facility. I asked my MO about continuing Ibrance if I switch to fulvestrant. She said honestly, we don't have enough information. There are studies going on but are not complete yet.
I'm thinking insurance would not want to pay for Ibrance on top of fulvestrant without significant evidence. I also thinking a call to you insurance company would not be unreasonable. Are you still on COBRA or now private insurance?
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Candy, I don't know how but I was moved from Ibrance-Femara to Ibrance-Faslodex, and my MO is not particularly savvy about negotiating with insurance. Plus, Verzenio is so different from Ibrance, and even works on its own without Faslodex, so how could they deny that? I think MOs who maybe don't see a lot of MBC patients don't really know what insurance will balk at and may be too cautious at times. For Faslodex alone, the PFS was not very long in the trials, I forget the number but not more than 4-6 months?- there is no guarantee CDK4,6 inhibitor will help, but nothing that says it won't since they don't have a biomarker to use for that
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dutchiris- I have COBRA (continuation of my employers health insurance plan) until June 30, then I will go to an individual health plan within the Marketplace "Obamacare" until I can get Medicare-- Jan.
Cure-ious--- I will ask about changing to Verzenio from Ibrance, and also change from Letrozole to Faslodex. See what she says. I don't know how many MBC patients my MO sees, but I am at a NCI center now. What would be the reasoning we would give for changing from Ibrance to Verzenio--- "progression"???? So insurance would pay for Verzenio.
Don't we have a biomarker for CDK's??? I was thinking they can check for the mutation that shows CDK's will not work anymore. Like ESR for hormone therapy. I cannot think of the one for CDK's--- I read it somewhere, but I read so much I cannot remember where. Maybe Rb mutation????
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Cure-ius...I was told approx six months for fulvestrant. Six month is six months I guess. She did say Verzenio could be tried somewhere down the line. No details on that however.
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