Ibrance (Palbociclib)
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Wandering, My first oncologist died of pancreatic cancer, and he sent everyone a letter saying only that he needed to close shop right away for health reasons, and that if we wanted any of our files or anything from his office, we'd have to let them know, by a date that had already past... It became clear when his obituary was posted in the paper three months later. However, before then, I did a search to get his email, intending to send a short thank you note, and learned that he had been in a lawsuit the year before, because his office (not a group practice) had been caught buying chemo from Turkey that was not FDA-approved, and giving it to his lymphoma/leukemia patients.And was not the first infraction, he'd already been warned about FDA about other out of country purchases. Apparently in this case the drug came from a pharma in Canada that is the same origin as the FDA-approved product, but the Turkey drug did not get FDA-verified and so was much cheaper. I recall him complaining to me that reimbursements from medicare and insurance were so slow that it made it hard for him to pay his staff and keep everything going. I asked my primary doc about him, and he said he had actually sat on the medical board that reviewed the case and marveled that in cases with big huge graft there are no clear rules for what to do. In the end he said the board let him continue because operating his practice was the only way he could pay the fines involved, but he was lucky to avoid prison.
When my son was a baby, his pediatrician got kicked out of the practice for drug use, they were very clear something awful was happening but nobody would say what exactly, eventually a nurse clued me in. In your case of course it could have been anything, these doctors can be far from what they seem
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Wandering, is this the guy who put you on Xeloda, owing to the rising cancer blood markers and despite having a clear scan? I'd ask the new guy about maybe going back on the I/F, if you were developing some resistance that may now be gone now that you've had a break...
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Cure-ious: I was on faslodex and Ibrance - never on Xeloda. Well - need to make sure the glass is half full and not half empty - make the best of the situation since I have no control over that. It may be an opportunity to get a new perspective on what is going on with me. I don't have any idea who the new doctor is but I do know that he/she must be an import since my oncologist was the only one in Helena. I may get some insight tomorrow when I go in. I'll bet the staff is bummed - I never heard anyone in the clinic even hint about anything bad about him. My gut tells me it's about money. If the new doctor is an import, last week's weather would not be an inducement to move here - record low temperatures (-10) and at least a foot of snow.
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Wandering, hope your appt with the new oncologist went well. My first oncologist went on a medical leave of absence when i had been seeing her for 7 years - of course by that point I was going in once a year as I had been stage 1, node negative and completed treatment in 2009 plus 6 years of femara. I still miss her but have grown to really appreciate my new oncologist (randomly assigned to me last fall when I had my stage IV recurrence).
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aprilgirl1: Thanks for asking. I met with the new oncologist yesterday. 45 minutes late for my 1:45 appointment (she is a substitute and will only be there a week). I left the clinic at 5:00 pm after waiting another hour to get my taxotere from the pharmacy. Got the honor of driving home another hour in the twilight with the deer and fading sun. Obviously not too happy about the wait but I did like the oncologist. Anyway, my blood work has improved - my tumor marker was down 180 points from two weeks ago and my other numbers were pretty good. I am having another flare up from ONJ but I think I can get that under control with increased oral antibiotic. Snow is melting - it was 55* when I got up this morning so that's a relief. We did pick up dinner before returning home so that almost makes the 100 mile round trip worthwhile. Dear husband picked that up and got the studded snow tires put on the car while I spent the afternoon at the clinic.
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I had my first two Faslodex shots last Wed. The shots were fine. My nurse is very skilled. Then I started a new cycle of Ibrance on Thurs. I had some D and abdominal pain Fri, Sat, and Sun. I usually have that from Ibrance but I wonder if Fas added to it. Then yesterday, the D and pain ramped up quite a bit. I've read that the max level of Fas is achieved at seven days. My loading doses are next Wed. I'm really worried that things will get out of hand at that point. I've taken some Imodium for the D and upped my regular Pepcid for the pain. The D is under control right now but not the pain. I've spoken to my nurse this AM and have a message in to the PharmD to call me. Is there anything else you do for stomach pain? Do you even have stomach pain? My GI system has always reacted like this. I guess I will cross-post in Faslodex.
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Jaycee,
I'm sorry that you are having this issue with faslodex (since your body "knows" Ibrance, that's got to be it.)
I haven't really experienced what you are saying with respect to faslodex, although I would note that maybe I've attributed gastrointestinal distress to Ibrance and it more properly should be attributed to fas? I will say, though, that after a year and a few months on it, I have developed some more tiredness that I'm pretty sure is the faslodex and not the Ibrance. Hard to tell.
I hope things settle down for you. I also have major reactions to drug changes usually, and it's not fun.
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Hi Jaycee49,
I've been on Ibrance & letrozole for three cycles, but since my tumor markers were still rising and after a PET scan showing progression of bone mets, I was switched to Ibrance & Faslodex. I had my first Falsodex injections (half dose in each butt cheek) on 10/7/20 and did pretty well with that, some bruising at the injection sites, but otherwise relatively asymptomatic (tired of course, but I had that on Ibrance). My second Faslodex injection was given on Wednesday,10/21/20, and on Saturday I had flu-like symptoms (clammy feeling, my stomach kept feeling like I was on a carnival ride, tired, and head congestion); however, by Sunday, I was feeling much better with the exception of the occasional stomach issue mentioned above. On Tuesday & Wednesday, I suffered from extreme tiredness, had to take a 2-3 hour nap both days after finishing work at 4 pm, but felt much better when I woke up. After that, I felt pretty good with the exception of some head congestion and nasal issues which I feel are sinus-related due to a change in the weather here in NJ. Anyway, I have not had diarrhea, if anything I've had mild constipation from the Ibrance for the last 3 months and no stomach pain to speak of. After researching the side effects of both meds on the Internet, it appears that diarrhea is a common side effect of both Ibrance & Falsodex, so its difficult to tell which one is causing it. I hope your diarrhea and abdominal pain subside and you feel better soon!
Take care,
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So much to say.... my cancer is growing in my lower spine. Scares me. 11 years in Stage IV I went from chemo, radiation added with a couple antihormonals including Femara that literally brought me to my knees. Then hoorah for Faslodex!!! Then i missed a few doses 2016-2017. Then more bone mets and my onc tried femara again and nope! We tried Aromasin.......same time i had a knee replacement....healing did not work with Aromasin. I am starting with Ibrance and i promised i will try it with Aromasin. I am praying since the pharmacist had a long meeting with me since i will be using it in brand name. No copay when i picked it up yesterday ..... any warnings?
I read your notes. At least some of you. Love you al
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activerm....praying Ibrance will be successful for you. I have a lot of low back issues and so far nothing shows up on Pet Scans....makes me wonder. Wishing you the bes
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A few of you have posted about changes in tumor HR status. Is this something that should be checked periodically and is a new biopsy needed? My oncologist has never mentioned this as a possibility. She has talked about how cancer mutates, making it sometimes difficult to know if a cancer is a "new" cancer or recurrence. Is this maybe why some drugs seem to become ineffective?
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BlueGirlRedState,
Changes in both hormone status and HER2 status can affect whether or not drugs will work.
I attended a zoom lecture on this a month or two ago, and the oncologist who was speaking said that if there was any progression at all, it's best to re-biopsy to make sure that there have not been changes in your cancer. A sample of the biopsy would then go to one of the testing companies -- Foundation, Tempus, etc. -- and they would generate a report regarding the current status of your cancer, including any actionable mutations. Another way to do this is through a blood biopsy -- I don't know where you are treated, but the larger centers seem to use these more than smaller cancer centers.
I would ask your MO about this.
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BlueGirlRedState - I go to a large cancer center and asked about this, too. Last fall my MO had my biopsy analyzed for some mutations using UWOncoplex which she thinks is commprehensive , mainly to look for the Pik3ca mutation once it was established that my cancer was still er/pr + and her2- . She told me that if and when I have a progression, they will run it again. As of now, there is nothing that shows up on petscan to biopsy. I didn't know about the Foundation One test or would have asked for that in advance . I would love to know if the UWOncoplex is as comprehensive as FoundationOne . My biopsy from last fall does not include a grade but when I asked her she said it was more aggressive, most likely a grade 3 (original was grade 2). I go to Seattle Cancer Care Alliance which is part of Univ of Washington and Fred Hutch. They seem to think their protocol is always the best (seems a bit arrogant at times!).
Activern - welcome to the Ibrance group - wishing you long success on Ibrance!
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Aprilgirl1
Yes, I think that Memorial Sloan Kettering also has their own testing system. I'm sure they are all comparable. As far as Fred Hutch being arrogant, they are a great cancer center, so maybe they've earned that right just a little bit!
I recently found this article about the different next generation sequencing tests out on the market which talks about some of the available testing. It's pretty good, I think, if anyone is interested in reading about these tests:
https://www.hematologyandoncology.net/files/2019/0...
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BevJen, I understand that Fred Hutch does great work but at the same time, SCCA did not take me seriously when i had valid concerns about a recurrence last September. Took 2 months and an appt with an ENT (not at SCCA) to take me seriously and order a CT scan. I am happy with my current MO and know that they have a lot of research behind them. They are the best in my area, so I will stick with them.
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Lynn,
Interesting find. So -- I had a PIK3 mutation found in my tissue biopsy. However, when we did a liquid biopsy, a few months ago (over a year into treatment) it didn't show up at all. So weird. And as of this moment, I'm still on Ibrance.
I'm sure this is just as confusing to our docs as it is to us. I guess it's not just the science -- it's the application of the science to the clinic?
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That’s interesting BevJen and good info to have.
As I read the article I was thinking that my tissue sample did NOT have the PIK3 mutation BUT I was wondering, since I know cancer can mutate, if my PIK3 status can change over time. 🤷♂️ I’m not sure if PIK3 is known to change or not.0 -
What happens to your drug schedule when you switch MOs?
I finally moved hospitals/MOs and the new BCN called today with all my appointments (bloods, MO, injections, pharmacy) lined up for next week on Monday (ladies, you have no idea how thrilled I am to go to the hospital once a month for an hour and a half and not two or three separate trips!). Currently I end my cycle on Thursdays. I am willing to bet my blood numbers will come back ok, despite only having a 3 day recovery. Can you just plow back on to a new cycle with a shorter recovery if blood is ok?
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Sondra,
I still have my blood pulled pretty close to when I've just finished up a cycle on Ibrance. But, I have not had any issues with numbers preventing me from going on the next cycle.
I would keep your appointments and then ask your new docs what their preference is as to how you should proceed. They will probably have a solution.
In other news, I had my monthly appointment today and met with the NP at my cancer center. She agreed to reduce me down to 100 -- I've been on 125 since August 2019 -- after I told her that this is just beating me up too much. Of course, then she also admitted that they don't have very many people who are still on 125 -- most people have to dose reduce so that the drug is more tolerable. Whatever the reason is, I'm glad to try this bc the last couple of months have been tough cycles.
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BevJen...this is going to be so much better for you. I think I was on 125 for 3 mo and the Onc moved me to 75 right after that. Have been on 75 for over 4 yrs. Some cycles are better than others but at least it is tolerable.0
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Airlinegal,
Yes, I am excited to try out the lower dose for sure. The NP told me to wait just a bit to start the cycle bc I had a microwave ablation to a lesion in my liver on Oct. 19th, and I am just starting to get my energy back from that. The NP said wait a few more days to make sure my energy level is good and then we can see if the 100 mg dose is actually better. I'm all over that!
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Thank you for the answers on the ER+ change question, I had not heard of it. I asked my oncologist today, and she said it can happen, and if progression is seen, then a biopsy is done to see if the tumor has changed. My next CT is end of November. Her concern now is the WBC, it has not rebounded as she expected after lowering the dose in September this year. I was on 125 mg starting Sept 2019, dropped to 100 mg starting Sept of this year, and now she is talking of lowering it to 75 mg. She said studies have shown it to be just as effective. So why the higher dose? For those whose dose was decreased, did the WBC get better? How long did it take. It seems like it has gone up/down during 2020. Before Ibrance, WBC 7.1, RBC 4.7. Today WBC 1.8, RBC 3.6 . Lowest WBC 1.7 in June. Highest while on 125 mg 3.6 in February.
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Hi, everyone, sorry I've been gone for so long. I see a lot of you are still here supporting each other , great ! I missed someone asking about my Ferritin and what was going on with it. Well, it continues to rise and it's now at 843, even afterI was dropped to 75mg. Onc said if it reaches 1000 than we'd need to look at other possibilities and now I see that my iron is going up too.I did test negative for hemochromatosis, so that's been ruled out. One other strange thing was that my ANC went from 1.2 on 100mg to .78 after one cycle of 75mg.
I took a month off after the .78 but once I got through the next round it started dropping again. 🙄
I will let you know what happens next. Weird thing is that my scans were clear! Doing a recheck on 11/12.
Ok, I'm going to go back to read up some more......I want to see where everyone is at in their journey.Prayer and blessings over all of you!
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Hey ladies
Welp, had MO appt today. She said it's time to look again as my last set was in July. So I have Bone Scan and CT Scan on 12th and 18th of this month. Each scan forward seems to be a bit more anxiety inducing even tho I should be a pro at this by now. Deep breaths Ginny, glad to see you checkin and congratulations on clear scans! Hope answers come for you soon and you can continue to dance with us
Sunshine, you made ME giggle with your response
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Hi all - had my onc. appt today (day 28 of Ibrance cycle 11) and my WBC was 2.74, neutrophils .95 so I am starting cycle 12 tonight! 100 mg.
Airlinegal - I love to hear that you have been on this for 4 years!
BevJen - hope your energy is better on 100mg. I was also dropped down to 100 and it took a couple of cycles but my blood work has been fairly consistently like it was today. On 125 I was down to .6 for neutrophils and needed a second week off.
BlueGirlRedState - It took 2-3 cycles for my blood work to rebound enough that I didnt need a second week off of Ibrance.
Ginny - good to see you! Great news on the clear scans! I just checked my blood tests and they aren't checking my iron - I dont know why....keep us posted!
RRabbit - In your pocket for the scans! 12th and 18th. Sending you good energy/vibes/prayers for clear scans.
I am just about at my 1 year anniversary for Stage IV. It is still surreal, but I am thankful that I feel pretty good and have tolerated the fulvestrant/Ibrance and all of this fairly well (so far, so good). Thankful for all of you - my friends "in real life" and family truly can't relate and I know I can't expect them to understand but you all sure do and I appreciate your insights and support.
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Aprilgirl, congratulations on coming up on 1 year living with MBC, isn't it amazing and scary to say all at the same time? I'm on my 2nd week of cycle 12, my 2nd cycle on 100mg. Thank you for the upcoming pocket duty
I can relate to those outside the diagnosis not understanding the sometimes hard dance we dance day in and day out. Sometimes it can feel very isolating and lonely, especially when you have people asking all the time "When will treatment end" and telling you to "Get well". Ugh, I'm getting better at letting that roll off. I should utilize the support here more often, I just feel like such a negative nancy when I "go there" and I don't feel like that's very helpful. Kinda feels like putting a tuba in front of someone's face when they ask "How you feeling" and You retort back, "Well, since you asked...Blahhhhhhhhh" and then just go off. The combination of Stage 4, Covid/lockdowns and political unrest is not a good recipe at all. I think of all you ladies dealing with the same things and it just makes me more upset. Hugs to you all
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RRabbit- Pocket duty on the 12th and 18th.
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Miss Rabbit...praying for great results on your upcoming scans!
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WANDERINGMONTANA
The oncologist in Helena is gone? The one we were talking about? So that sounds troubling.
Perhaps we'll have a chance to meet, I'll be in Helena on Nov. 18
I'm pretty flabbergasted that the doc has left.
Also I have a first bone scan scheduled for Thursday at Harborview, which entails an all day juggernaut of public transportation and misery, probably in the rain.
I don't want to go.
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