Ibrance (Palbociclib)
Comments
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Do you think there would be a problem starting a thread to see how many on Ibrance are on the 5/2 schedule? I know there are a few here, including Candy, but I’d like to see how many more there are. I know it’s not an FDA approved protocol,but it would be good for me to tell my doc there are people trying this to help their ANC levels.
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I’m on my second month of the new tablet formulation and am developing an itchy rash on various part of my body. Is anyone else having this issue? No changes to soaps or detergents that could be causing this
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KBL,
I'm not so sure that that would do anything for you -- I would think that those who are on Ibrance pretty much are on this thread or on the 4 years+ Ibrance thread?
Just my opinion.
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KBL- You can try a new Thread and see how many respond. Like BevJen said, those that are on Ibrance post here. But, you could group together the 5/2 people and separate them from the rest.
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I won’t start a new one, but if there is anyone else who is onthis dosing, I’d love to know and how it’s working for them. I can keep an eye from here on out.
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I too hope those on the 5/2 schedule would chime in. If has been successful for their neutropenia, and when they have scans to see if any progression or how long PFS is for them on this dosing.
My sister commented about the good lab result I had this last week. I am happy for the ANC of 1300, but, remember, it is 1 lab. The time before was 900. I am doing much better than before-- ANC of 700 at its lowest. But I want to see how the numbers do in the next month. Will they continue to stay up, or was the 1300 a fluke.
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KBL - if you don't get the response on the 5/2 schedule from this thread that you desire, I would cite the clinical study when speaking with your doctor. Back in June I contacted the people running the trial and spoke to a very nice woman. Although she could not state any trial results yet, she did tell me that the trial hasn’t been canceled and implied that so far it has been successful enough to continue.
In my mind, there is no harm in trying 5/2if your ANC hasn’t been able to recover on the standard schedule. If you progress, then you can move on to the next drug. But that’s just my opinion and likely biased by the fact that I hate starting a new drug since my body doesn’t tolerate drugs well.0 -
Jen, I have itchy rash with capsule since first cycle, and never gets better, pharmacist suggested hydrocortisone cream.
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KBL, I went a couple of times onto the 5/2 schedule when I was taking the 125 mg dose, and definitely felt better, in terms of fatigue. However that was not enough to correct the low ANCs. I moved in March to 100mg and my ANCs have been no problem, so I only take 2-3 day breaks between pills, just a couple of days to get bloodwork tested and then back on it.
Jen- no rashes on the tablet.s The CVS specialty guy said that with the tablets it is now OK to take Prilosec, I did not realize ithat Prilosec was not OK to take it on capsules? Anyway, I wasn't taking it before but will start, because the GERDs is such a problem with this drug. Quite a few trials exclude anyone on Prilosec so I don't want to take it for a long time tho...
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Candy, I hope it’s no fluke. It would benefit me greatly if you were able to stay higher with your ANC and give me hope that we can change and be okay.
RK202, I’ll definitely print it out. If nothing else, we will have that in our pocket for next month. I go tomorrow to see if I’ve gone up enough to start. I suspect I have.
Curious, just to clarify, you’re still doing the 5/2 or you’ve switched back to the normal 21 on, 7 off schedule? I’m glad your ANC is doing well in 100 mg.
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Cure-ious,
I am also curious about your dosing -- did you say that you only take a couple day break between cycles? If so, I assume that's because you don't want the little buggers to propagate while you are off of Ibrance?
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Curie-ous,
I haven't returned to this thread since I asked my doctor to reduce my dose of Ibrance to 100 mg after five cycles of misery on the higher dose. One of the many problems I had with the 125 mg dose was something akin to GERD, which I had never experienced in my life. Coughing led to vomiting, which diminished my iffy appetite to zero. I still have it at the lower dose, but not enough to make me stop eating entirely.
Please tell me where you obtained this intelligence. You seem to to know more about the SEs of Ibrance than any resource I can find, .
Tina
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Jen...yes, I am getting rashes that I never got before since starting the new tablet. I've also noticed a few other more intense side effects like more hair loss, GERD symptoms, bouts of diarrhea. My Glucose on blood work seems to be going up too. I have a note to ask my doctor next time I see him if the new tablets could be causing all this.
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Re: Rashes. I didn’t put it together until now. It’s on both of my lower arms. It look like litte white circles or patches.
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I'm still on capsules. I did have rashes when I first started (on hand, arm, thighs, back of neck). They first appeared after I missed taking my daily antihistamine (desloratidine). I added Benadryl at night because they were so itchy. It took several cycles until the rashes healed. I've been prone to rashes on my neck when I eat too much gluten. Ibrance seems to make me even more sensitive. Lots of lotion and epsom salt baths helped.
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KBL, Its 21 days on, then 2-3 days off, depending on if its the weekend and I can get in and get my blood drawn- the MO wants blood draws every month, but she said so long as it is at or above 1, go back on the drug, no need to take longer time off. And yes, the concern is that a week off can give the cancer more time to "wake up" and get going again. Having said that, I haven't done blood draw since May since it felt like not worth the Covid risk- but I will go test this week, see where I'm at..
Tina, I recently got rescheduled to CVS specialty pharmacy from Aetna Specialty pharmacy due to insurance, and the CVS people called to go over everything about Ibrance, be sure I knew the warnings about pneumonitis, etc. In that discussion, he asked about side effects, I said thinning hair and GERDs, and he mentioned that now with the tablets it is OK to take Prilosec for GERDs. I had not realized it was not advised with the capsules, but that was the clear implication of his comment, and I didn't ask him anything more about it. I told him to tell the company we'd like a lot more information about the biomarkers and supplement use of those who have done well, or have not responded, they must have a lot of data from their huge trials but we don't hear much about it...
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oh the GERD is also doing me in! I’m on my third night of waking up because I feel like I’m about to vomit. Some pepto seems to help. I’ve also been taking my Ibrance before bed this round (which is not my usual) and think I’m going to switch tomorrow to taking in the morning. Maybe laying down or not flushing it through with water throughout the day is working against me. So far I am not a fan of this new formulation
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Thank you for the clarification.
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There are so many threads on this forum and so much good information. I would not welcome more threads, unless it is really unique. Sometimes it is hard to find what you are looking for. A really good search engine would be nice, maybe even one that lets you click on narrowing search, but is not case sensitve, and maybe even takes common abbreviations. Organization is great, but how should it be organized? By Dx? Age? Specific drugs? Drug combinations? Drug doses? SEs? Addressing SEs? I guess some prefer vertical organization and others horizontal.
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What is the deal with that GERD anyway? And I'm still on capsules!
I already take mine in the morning, keep my water up through the day, and sleep somewhat sitting up (and have for a very long time), but I have had nights where its BAD and highly uncomfortable. I've got an arsenal of stuff to help, though I have found slowing down eating time (put the fork down, put the plate aside for a few minutes, chew every mouthful very well), some cat-cow yoga stretches, and, if its really bad, a pinch of baking soda in water do the most help. Oh, and no hot drinks/frozen food in the evenings.
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Cure-ious,
Exactly. We hear little about after-market data unless it's something like, "Avoid pomegranates as well as grapefruit," which I was told by the specialty pharmacist when I signed up for Ibrance. When I asked "Where did the pomegranates suddenly come in," he said, "After the drug was released the manufacturer learned that they increased absorption."
Why had I not learned this or a dozen other guidelines? Why had no one told you about not taking GERD meds? Why had no one warned me that 125 mg might make me feel half dead?
Why does Pfizer keeps such a tight lid on information that could actually be helpful to patients and their doctors? Instead, the company throws out distractions to keep them focused on the wrong things: a shiny new tablet of the old formulation, tucked into absurdly over-done packaging, sleek brochures that contain little, if any, helpful information, and TV ads breathtaking in their condescension.
Why?
Tina
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Tina, excellent point 👍🏻👍🏻👍🏻👍🏻👍🏻👍🏻👍🏻👍🏻
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Well group I had my MO visit yesterday--Monday. And my CT. This was the first actual visit with my new MO (traveling 2 hours one way) and the first CT at the new facility.
This is going to be a long post, so those that are not interested in my saga you may want to skim only.
Trip was long. I went alone. I was thinking "this is weird traveling all this way for a doctor visit". Had CT scheduled first and then a 1 1/2 hour lull till saw MO.
The CT was different. Usually I have to drink a contrast 1 hour before scan. Not this time. And it was the same type of CT-- chest, abdomen, pelvis. They have people that their only job is to start the IV-- the CT tech would start the IV at the old place. We did 1 pass thru the machine "Take a deep breath and hold it", then the dye went in IV, then 1 pass again "take a deep breath and hold it". All done. Maybe 2 minutes in machine. The old place did several swipes of the machine, then gave dye and then another 8 minutes of swipes. The machine would rev up, run, and wind down several times. Weird that the testing was so different. I hope it is due to more advanced equipment, but I worry that it is not as thorough.
Then the office visit. No gown. MO came in with the nurse. MO pulls up CT pics on computer and shifts computer screen so I can see. I do not know what I am looking at. She points out the original tumor and measures with the mouse. Around the same measurements as it has been--give or take a mm or so. It is just a shadow. I am thinking "this shadow is what is so deadly?". She said radiologist sees a new tumor measuring 7mm and recommends a MRI. We are going to do the MRI in a couple of weeks-- my first MRI of the liver. I had a list of questions on an index card. I ask about dental appt--no issues, just check up and cleaning. I told her I had been holding off due to lower ANC lately. She looked at me with a blank look. She said "well I can ask my colleague that works with leukemia patients. They have low counts all the time. See what he says". I ask about mammograms, how does she feel about them with MBC patients (I am due in Oct for mine). She said no need. Said CT would catch anything. I ask about Palliative Care. She said they do not have a program for that, just Hospice. She did not ask why I wanted Palliative Care, so I mentioned constipation and my pain issues. She did not say "What are you doing for the constipation?" or " What other issues are you having?". She doesn't seem to have much of a bedside manner. Or seem to want to deal with anything except the tumor. Her name badge said "Associate Professor". I think she had the head smarts and will be good for the academics of the cancer, but I don't think she will be the type of MO that handles all your issues--side effects of meds (constipation, AI pains, fatigue), or other issues with dealing with a cancer diagnosis. She then ended with listening to my lungs and lightly palpating my abdomen-- kind of a cursory exam.
So MRI on Oct 10. Will hear from office on results and will probably stay on Ibrance for now. See her in Dec again to recheck scans and status of the tumors. Oh, and to continue the Ibrance 5/2 schedule with checking ANC every 2 weeks for the next month, then go to monthly lab. Long day and exhausted when got home.
Thanks for listening to me. Any comments from group?
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Candy,
I hope it is not progression but I guess the MRI will provide more information.
Your CT experience sounded similar to mine except I drink contrast first. The actual CT takes almost no time-as your described it is just one swipe of the machine before the injection and one swipe afterwards. I actually kind of enjoy the "rush" I get from the injection.
It's disappointing that your MO was not more helpful with your other questions. I would think that constipation is pretty common with cancer drugs and she would have some suggestions. As far as the teeth cleaning-I get mine done every six months with my Grade 3 neutropenia and have never had a problem. It will be interesting to see what she advises. My MO theorizes that Ibrance neutropenia is different from chemo neutropenia based on what she has seen with patients. I find it very disappointing that she did not address your pain. I was hoping that there would be better coordination between your MO and an RA doctor at your new facility.
Anyway-glad you made the drive safely-after a few more times I imagine it will get easier as you spot familiar landmarks, etc.
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Candy thanks for sharing your experience with new clinic I was about to ask you about the scan.
Most teaching hospitals are the same, they are good at research and diagnostic but less care about patients feelings, what is called bedside manner. If SEs are minor specialty pharmacists can answer questions. Oncologists do care about cancer but do not bother about non cancer-related disease in patients (sometimes we as MBCs relate every symptom to cancer and got panicked) in best manner they refer to other specialists for example GI or orthopedic Basically, most researcher- oncologists look at tests reports and then make decisions to continue treatments or change, I do not want to say this but they less listen to patients, because they see what they see in reports. Plus they have many patients......0 -
Jensgothis and kbl
I had the itchy rash from the new ibrance for 4 months. I’ve been on the regular pills since 2017 and never had a rash this bad. I stopped meds for three days and took Benadryl. Now I just take the Benadryl no break in meds.
Tany
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I was just given my post op treatment plan and it will included Ibrance and Letrozole. Looking forward to getting to the next step after mastectomy recovery, but currious about the side effects and struggles with this drug combination. Hope to learn from you.
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Candy, I hope you don't have progression. I asked my MO if it was okay to get my teeth cleaned. She said it was okay and to just schedule the cleanings the first week of my cycle when my counts are the best. I have ONJ so I get my teeth cleaned every 3 months.
Kemiller, sorry to see you here, but welcome to the ibrance thread.
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Candy,
Just read your saga at your new center. I think you have the place pegged accurately -- welcome to an academic center. The pluses are that an academic center has lots of specialists, many of the docs are involved in research, and they can call upon one another if specific things come up about your cancer. The downside is that many of them don't have great bedside manner, although some of them do. It just depends, I think. For me, I'd still rather have the large center because I think it would be darn near impossible for a practitioner in a small practice separated from an academic center to keep up on everything BC.
As for your liver lesion, as I've posted, I am going to have my 1.1 cm liver lesion ablated on Oct. 19th. My interventional radiologist only goes by films from MRIs -- he says he can see things more clearly on the liver MRIs than on the CTs. So something to remember. You may want to do a little bit of reading on local liver treatment in anticipation of your next visit with your MO (I assume the same day at the MRI?) so that you can discuss those with her. Again, that's the benefit of a large academic center. They will have IRs who can treat you there. When my liver mets first showed up, my MO took my case to the liver tumor board to see what they recommended, and that's how I got hooked up with my current IR, who I absolutely love (he has wonderful bedside manner, so they're not all devoid of that!) He and I kicked around several local liver treatments before finally settling on the microwave ablation that I had last July (2019) and that I'm having in a few weeks. It's definitely something to think about.
Good luck as you move forward with this. On the plus side, hey, look, your doc already seems to have solved the ANC problem with the alternate dosing. So hopefully things will continue in a good vein.
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Thanks BevJen for your words. I have not talked to my MO yet about her views on local treatments and what could be offered at that location. I will not see her after the MRI (this time). This first one is a baseline one and to look at the area in question. But she already said we would not be changing treatment yet. We will wait for 2nd MRI in Dec to see if area still there and growing. I agree. I do not want to change treatment yet- too soon- and I want to get as much mileage out of this treatment as possible. It was weird to see that "shadow" on the computer pic of the scan. That "shadow" seems so insignificant to be the cause of such fear, sickness, and death. I asked to see the pic of the 8cm tumor that I was first diagnosed with but she had a hard time finding it as it was from 3 years ago and a different facility and computer system. I am happy with the ANC issue and her agreeing to try the alternate dosing. We will check ANC every 2 weeks for the next month to make sure number is staying up.
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