Ibrance (Palbociclib)
Comments
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Z- you remarked about anti-depressants being used off-label for hot flashes-
When I had my hyst/ooph (2010), Effexor use was prominent among hormone-suppressed women here on the boards. It was then the only non-HRT med known to be effective against hot flashes. It was offered to me after surgery, but I declined. I tend to take as few meds as possible in any case, but I was particularly put off by the infamous withdrawal challenges when I probably would not need it for long.
Well, so... I endured a year of hell. I had had ordinary premenopausal hot flashes before BC and those were no fun for sure, but these post-ooph, AI-fueled episodes were another beast entirely. They hit every half hour or so. There was an aura that preceded them, a specter of anxiety and dread. Then a ripple of tachycardia followed by 90 seconds of scorching, near-nauseating heat. Then a 10 minute slump of addled exhaustion, weakness, and low, sad mood. One after another, round the clock. I could not sustain focus on anything for more than a few minutes. My QOL was in the tank.
Googling for remedies, I came across a couple of women who noticed their heat waves stopped when they started Lexapro. It's a "cleaner" and more targeted AD than most, with a low withdrawal profile, so I convinced my onc to let me try it. Within a few days, all the hot flashes stopped and the sun came out again. I took it for about two years, and then easily titrated off of it. The hot flashes did not return.
The downside is that while an AD can lift your lows, they can also blunt the peaks of joy. Everything lands softer, both the bad and the good. I weaned off of it for the birth of my first grandchild because I wanted to feel every bit of the joy of her arrival.
What I've learned since then is that GABA helps a lot of women with hot flashes. So if it becomes an issue for me again, I will try GABA Calm before going back to an AD.
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Math problem: If the half-life of a drug called palbociclib is 29 hours plus or minus 5 hours, how many days would a patient need to be off of it to have it out of her system? Bonus question: If the half life of another drug, letrozole, is "terminal: about 2 days", does that mean it only stays in the system for 2 days? My onc wants me to have a washout period before we start something new, and I am wondering how long it really has to be. Thinking maybe I can at least continue the letrozole for a bit longer.
In the meantime I am working on moving my scan to a sooner day, and on getting two second opinion appointments. Also sent my onc a list of questions. So much for any plans I might have had today.
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Thank you, lulubee. I think I understand what you are saying. For you, the TMs told you that something might be going on, so then you scanned, and the scan did show progression. LMWL, thanks for your input. My TMs have been behaving like your wife's, with no drastic jumps, but a steady upward trend. How long did that go on before a scan showed progression? Obviously TMs can work differently for different people. I find it useful to learn about the variations.
Cure-ious, thank you for the info about RapaLink. I will definitely follow that.
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Unfortunately, my tumor markers have also related directly with my progression. When I saw the MD at Mayo for a second opinion before I decided on a study trial in 2014, he said that "little increases here and there don't bother me, but when they get close to doubling, then I suspect progression". I have the CA 27/29 test each month and scans every 3 months since I was diagnosed with MBC. I was good with normal markers for over 7 years, then they started to creep up. Like Z suggested, hoping that my body is adjusting and not more progression, but a flare reaction, but will see with the scans in Feb. I have high hopes for this combo.
dlb823 - I have extensive mets in many bony areas including, liver, lung and lymph node. This afternoon I actually felt good with doing the elliptical. Wonder if part of my problem over the weekend with severe sternum and back pain was from just laying around and not moving. Yesterday, was the first time I did weights in months though. I know that lifting weights improves bone density, but will increased blood flow increase activity? Humm...I wonder. Will have to check with my MD on whether I should be lifting or not. I haven't felt the urge to go to the gym for the last few months and now feel like I can do it. How would yoga be I wonder.
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My wife had a CT in October with nothing in the liver. However on the same day she did a TM test which shoed a 8% increase. That continued creeping up through November and December (each time around 10% jump) and CT in early Jan 2017 shows many spots on her liver. But again, everyone saw the TM rising for 3 months and still waited for the scans. So we decided we will do TM only when we do scans and have some peace of mind for the rest of the time.
Cure-ious,
Interesting data about RapaLink and the fact that UCSF is involved. We have an appointment tomorrow and we will ask. In the mean time I found this trial being done at UCSF.
http://clinicaltrials.ucsf.edu/trial/NCT02395627
Not sure if it is the same one (probably not) but looks like there is a lot of active research going on about overcoming drug resistance.
Hopefully your scans in feb will be fine. Don't stress out and enjoy some quality time today. TMs are numbers that most doctors do not take action on, so there is nothing you can do about it other than looking at it.
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I am a bit behind on these threads due to a spelling bee that has disrupted my week. Very interesting math problem Shetland. Three weeks seems a long time. Wish I could work that out ...
I am in the third week of my Ibrance cycle. I was diagnosed with strep last week, so I am on antibiotics for 10 days. I got my CBC panel today and my neutrophils are ... 1.4 !$! That is about as high as I ever got. In any case, I can finish the last week of Ibrance, stay on antibiotics and generally soldier on. Awesome.
Lisa - In principle, resistance training and weight training is a critical piece of cancer fitness.
The American Cancer Society/NCI consensus on exercise for cancer patients is strength training 2-3 time/week, 8-10 exercises of 10-15 repetitions/set in addition to 150 minutes of moderate aerobic exercise.
One of my favorite integrative resources is Dr. Lawanda's Integrative Oncology Essentials and he reviews the importance of resistance training in this article.
In reality, we dial these recommendations in to our circumstances. I do resistance exercise 3X per week. But often I do body weight exercises (squats, pushups) or I use therabands.
Join us on the Stage V Fitness thread where we figure out how to keep up a fitness routine despite the drugs and limitations of this disease.
>Z<
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LMWL- That is a promising trial you linked to, and I think Dr. Munster actually heads that one! Please let us know what she suggests for your wife, and any news she has on RapaLink (that came from Dr. Shokat's lab at UCSF, but the question is whether there is going to be any clinical trials for that anytime soon?!). Could you also please ask her how the trial she is doing with Wnt pathway inhibitors is progressing? That is a new type of drug that hits the Wnt pathway, which normally gets shut off in early in development, but becomes active again in many cancers- there are no good drugs for Wnt, and so I'm super-curious if the trial is looking hopeful- and, well- one more question, does she think any of the new generation PI3K/mTOR inhibitors have any better side effects than Afinitor, (tell her we all hate to think of having to take that drug!), and I'd tell her you want immunotherapy too. As you can tell, my MO just loves it when I come to visit!!
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lissalou
Interested in the use of Ritalin because when I ask my onc about it he said he doesn't like to use it as it causes anxiety. He wants to give me steroids which I am not happy about. Did you or anyone you know have a problem with anxiety?
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share- if not Ritalin then Prozac or other anti-depressants seem to work. This is the first time I've heard anyone mention Ritalin. The antidepressants come up more frequently. I've chosen to soldier through the hot flashes for the moment because they aren't too bad. I've noted the wide use of anti-depressants but haven't paid attention to the specifics. You might search the inspire advanced cancer forum or the Femara thread on bco. That's where I've seen this discussed.
>Z<
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share- if not Ritalin then Prozac or other anti-depressants seem to work. This is the first time I've heard anyone mention Ritalin. The antidepressants come up more frequently. I've chosen to soldier through the hot flashes for the moment because they aren't too bad so I don't have the specifics. You might search the inspire advanced cancer forum or the Femara thread on bco. That's where I've seen this discussed.
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I am on wellbutrin and have found it helpful for energy and it is also an antidepressant. My doc said this is what he prescribes to cancer patients to help with energy.
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Lulubee - Here is a summary of the research that suggest that cancer grows at night:
Cancer Spreads Through Our Bodies at Night. This could mean that therapies delivered after dark might be more effective.
It's hard to time your chemo IV's to work with cancer's schedule but palbociclib is pretty easy.
>Z<
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Shetland - just getting back to reading some old posts. A couple of comments ...
For every person like LMWL where the tumor markers are predictive, there is someone for whom they are wildly not predictive. That's why scans are the only thing MO's really use to make treatment decisions, as LMWL has pointed out. If you don't have the hidden kind of ILC, then definitely wait for something to clearly pop up in a scan.
If I were to progress, I would do faslodex alone or something like the sandpiper trial. I see that the sandpiper trial says you must have that mutation but it is still worth contacting are reading the sandpiper trial folks if you are interested in the trial. I've read elsewhere that enrollment will be enriched for patients with PIK3CA mutant tumors via central testing. They are finding that the genetic testing is sometimes not predictive of whether people respond to these drugs, so they will generally include people without the mutation in the trials in part to test their assumptions.
Also, if you are looking at an F1 test of a 2014 biopsy, you may not be looking at the cancer you have now. If you can biopsy, biopsy again and do another genetic test. The mutation may come up now, even though it was absent 3 years ago.
If there is nothing to biopsy, the CTC tests are an interesting possibility to get more information. I have heard smart people people question whether circulating tumor cells are representative of the cancer that forms tumors. IOW the cancer that is really causing trouble. I am having the test done. It's covered by insurance. But I am approaching it as a learning experience so I can figure out if and how to incorporate these tests into managing this beast.
Judy - You just joined us but this thread is moving so fast, no one said hello! If the drug you are taking increases ibrance concentrations in your blood stream and increases side effects, then dropping down is wise. You'll end up with the dose the rest of us on 125mg are getting. That said, the data behind Ibrance drug interactions is highly theoretical. There are very few actual studies and the ones that I have seen show that individuals metabolize ibrance very differently, even before drug interactions. Watch the side effects you experience and adjust the ibrance dose down as needed. Many people do well on the lower doses, probably because they metabolize the stuff slowly and are getting the high dose.
Casun - Hello to you too! Welcome to this lovely group of people in a sh#$ty situation. Let us know how you are doing!
>Z<
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I went back and read the previous few pages, which I was too upset to focus on earlier this week. Hello and welcome to Casun19, Judy, time-for-a-cure and girlwithacurl. (I hope I didn't miss anybody!)
Seagan, it sounds like we are in a similar place, wondering what to do next. For me I think it's going to be Faslodex, but what to serve with it? Afinitor, a trial drug (or two), nothing? I just thought of an option we haven't yet mentioned here -- just adding faslodex to the Ibrance + letrozole. Cure-ious said, "As you can tell, my MO just loves it when I come to visit!!" Ha, that sounds like me. When I saw my onc in December she and her nurse looked expectantly at me then laughed when I said, "I don't have a long list of questions today!" Merry Christmas. But whoa, am I giving her a long list for New Years.
Yes, Z, my onc said that by now my 2014 biopsy is outdated. (That was a breast met biopsy, very convenient.) Hoping to get a PET/CT in the next three weeks. We'll see if it shows anything to biopsy. I'm also looking into Biocept. My onc said she thinks something is going on that we can't see yet, and she hopes it is still hormone-receptor positive. My intuition agrees with hers. For a year after getting to NEAD with Taxol, my TMs stayed in the teens. Then the very month I said I was suspicious, feeling a little bit of twinges, reflux, and bloating, the TMs moved into 20s. Coincidence? My onc and the nurse kept saying, "normal range", but there was a gradual climb over the second year from 20s to 60s. Sometimes it would dip a little, but if you graph it you see a general upward slope. (Normal is up to 38.5 for the CA 27.29 my lab uses.)
Waaaa! I wanted, oh I don't know, five years from Ibrance and letrozole. If things are happening slowly, maybe it is working partially? That's why I'm nervous about a three-week washout period. I disobeyed and took my letrozole yesterday. Emailed my onc a question about the number of days.
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Five days later, I still have shortness of breath, fever, and a smorgasbord of aches & pains. Really thought I would wake up better today. Got a chest X-ray this afternoon at a nearby urgent care clinic (we go to great lengths to avoid our big city ER's). Clinic doc pointed out an area of infiltrate behind my heart, and said probably pneumonia, and wrote me a script for Doxycycline-- but then he called me at home later to add that the clinic radiologist thought the X-rays looked normal. Oh really. Quickly added, "But please come back tomorrow or go see your PCP in the morning."
Whaddya bet the radiologist is young and spied my chest bling-- tons of old surgical clips and a power port-- and promptly decided to pass the leftovers?
My onc is out-of-town. Dang it.
Meanwhile I feel like roadkill and the fever just now hit 100.9 (with vicoprofen), after four days of peaking around 99-something (my normal is 97.6). Started the antibiotics and will camp out in my new PCP's waiting room in the morning. Having my buff son take me as that seems to motivate nurses.
Please send healing thoughts and prayers and any spare fairy godmothers you happen to see flying around.
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Oh, lulubee, sending good thoughts that you will feel better quickly! Glad you have your buff son to help get the nurses motivated. Maybe you can email your onc who is out of town? You might like to know there is a paper suggesting that certain antibiotics might fight cancer, and doxycycline is on the list. The title is "Antibiotics that target mitochondra effectively eradicate cancer stem cells..."
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Z, Cure-ious, ShetlandPony and others following my posts here -
Met with Dr. Munster today at UCSF today. We did not discuss a ton regarding clinical trial options because she wanted to have the biopsy results first before discussing treatment. She looked through the scan results carefully though and mentioned that there is always a chance that the cancer has mutated and any treatment plans including trials depend on what we are dealing with here. That will meant that my wife will hold off from taking Xeloda for another week to have Pathology report in hand. Also she said that starting Xeloda now may disqualify her for some promising trial. So lets wait for the the report.
lulu bee - hoping that you feel better soon.
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Shetland - I don't understand why there is a washout period if you are not on a trial. I have never switched drugs, of course. Is this standard? Anyways, I agree that 3 weeks is too long to be off drugs. You sound well, like you have moved from the shock to fighting and strategy.
I am hopeful that your second opinion combined with a good scan will lead you to stay on letrozol and ibrance for a while, but I am glad you are thinking about a change if it is needed.
Lulubee - Sending an army of fairies and the pfizer dose adjustment protocol for ibrance.
Basically, if you have a fever of over 101F AND an absolute neutrophil count of less than 1000, then you should stop taking ibrance, according to pfizer. Tomorrow will only be day 5 so it is unlikely that ibrance has slammed your neutrophils. I don't think neutrophils are an issue yet, but it is something you need to be aware of. If you have any doubts, get the PCP to do a CBC panel to measure your absolute neutrophils. This becomes the routine when you have an infection.
Hang in there. So sorry you feel like crap.
>Z<
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Lulubee - terrible symptoms. Sending lots of prayers your way. I wish I could send you some good old fashioned chicken soup with dumplings.
I switched to taking my combo at night after reading some threads. For the last two days, I have been very nauseated. Anybody else experience this? Zofran isn't cutting it. I didn't have the nausea when I took the combo with breakfast. Maybe again, my body adjusting.
Welcome to this thread and I'm sorry you are here. You will find a lot of good information here! I learn something new all the time with regards to treatments, help for side effects and of course life!
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LMWL, I like that the UCSF onc is being careful to get all the information, and protecting your wife's eligibility for a possible trial. I am quite concerned about that myself, and hope I can get my scan and both my second opinions done before the planned Faslodex appointment.
Z, I think the washout is just so we can distinguish side effects. Though I wonder if being off possibly does something for the scan results or the response to the new drug. I am going to try phoning my onc. Maybe she is sick or busy, but I like to think she is looking into my questions and discussing with colleagues. In the meantime, I'm still taking the letrozole. Have I moved from shock to fighting and strategy? I think you are picking up something there. I feel like I am trying to figure out how to live with this. I go back and forth from strategizing to escaping into a TV drama. By evening my brain is mush. I don't feel up to all the research, so I need to get some doctors on it, and keep collecting thoughts here. I keep telling myself I am ok right now, and that it appears that nothing fast or imminently dangerous is happening. I tell myself that if I have to change treatment I will pick up my Hobbit sword and march bravely on. Then I get very scared of the future and sorry I ever complained about Ibrance fatigue. This is the awful waiting time we all know about, waiting for tests and results, waiting for a plan. I should be doubling my healthy lifestyle efforts right now, but it's hard to just maintain some normalcy.
What's up, mediclisa?
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Yes, Shetland Pony.....so reviewing some posts. So I switched taking my meds at night and have been experiencing nausea during the day. Wondering if anybody else is have this issue?
In reading your last post, contemplating my last scans where my mets are everywhere and switching to this new combo, I also try to put on a brave front. I haven't even told my kids yet about my Nov. scans. I figure I will tell them if Feb scans aren't any better. Wanted to have a good holiday with them. I too will march bravely on without falling on the Hobbit sword. What else can we do? I have to believe there is always hope, something around that corner. Probably unrealistic with this disease, but still 10 years strong, I think.
I have one sister who is totally holistic/alternative and wants me to go to Mexico and one sister who is a MD - all about modern medicine. She talked to the MD at UAB about my numbers going up and he said they go up and down, which I know from other oncologists.He also said that he has had patients that have died going to the alternative clinics and reiterates that we don't have all the answers. Science, data and studies are the only way to progress in a rational manner, so let the MD's earn their keep for awhile. Give yourself a break, easy to say hard to do.
So in reading other posts, absorbing your post, I am going stop crying, get a cup of hot chocolate, read a couple of chapters in a good murder book (thinking about my ex husband hehe)and then go to bed! It's going to be a beautiful day today, almost 40 and I have the day off. Going to my cabin in Wisconsin and do some ice fishing with my kids this weekend and try to forget about the damn cancer for awhile. Have a good weekend!
Lulubee I pray the antibiotics work for you and you feel better soon! It sucks to be sick and am very glad your buff son is helping you.
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Shetland -
I had three days over xmas where I thought I had progressed. It turned out to be a clerical error with the scan results (argh!?), but that feeling ... of brain mush. It's hard to put one foot in front of the other.
But one foot in front of the other is the cure for the shock. Let's see if I can make dinner... yes I can. Let's see if I can call the onc ... yes I can. Let's see if I can go for a short walk, yes I can. It will all become easy again but for the moment I know that everything is hard. Between accomplishing your little mini goals get a lot of rest. Schedule some TLC ... energy work, massage, hot tub and, of course, bing watching TV dramas.
Don't stop strategizing. You have quite a head on your shoulders. Lining up the right MD team and the right scan/diagnostic schedule and strategy is all you. You are doing GREAT on that front ... totally there for yourself. Amazing to me as I know hard it is.
I am praying that your progression turns out to be a false alarm, but even if it is I can tell you the shock takes a long time to work through.
Thinking of you.
Lisa - Ice fishing is The Cure. Get out there.
>Z<
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Hi all, 2 weeks ago I was taken off Faslodex, and my MO ordered Palbociclib and Femara. She said it takes the insurance company awhile to approve it. Any idea how long ? I'm so nervous to be off all meds. Pet scan revealed increasing nodules in my lungs. Thanks for any advice.
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Ninalee - I think it took about a week following my appointment to approve and then a few days to get it shipped to me since it has to come from a "specialty" pharmacy. The waiting is hard, but you'll be back on an excellent treatment soon. Good luck!
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Hello, I was just checking to see if anyone here has studied anything with viral immunotherapy? Where they alter a virus and inject it into the tumor. I know there are clinical trials, but not sure about it with breast cancer. I know there is an fda approved viral immunotherapy (oncolytic) for melanoma. Just was interested about it because I have a friend that keeps talking to me about it
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Hi Shetland,
Like penguins marching off towards the cliff, we feel we follow the same path as everyone who came before. But your Hobbit sword may yet cut a path to a much better outcome.
I guessed we have discussed this already, but there is a trial for those with progression where they move you on to Ibrance/Femara or Ibrance/Faslodex, together with gedatolisb (mTOR inhibitor). When I progress from Femara/Ibrance, I guess I would try to go onto a Faslodex/Ibrance/PI3K combination. But I wish they would hurry up with some immunotherapy combination therapy advances for breast cancer, it feels like a long time coming already...
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MedicLisa, Any suggestions on good murder mysteries?! It's on my to-do list, and I haven't read any in years..
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Plus, an exciting paper out in Cell today, Stanford researchers show that successful immunotherapy requires activating CD4-positive memory T cells, which work throughout the body, rather than just send T cells to the tumor. They have a new way to visualize this activation, which will allow them to screen for treatments that turn on the memory T cells and work better, a nice advance..
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here's the link: http://www.ucsf.edu/news/2017/01/405581/successful...
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Thanks Cure-ious for sharing your wealth of knowledge with us, it gives us such insight into what's happening out there (and with that insight, hope)
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