Ibrance (Palbociclib)
Comments
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Hi! Check out this news release from Friday (5/30/2015) from the ASCO conference:
http://www.pfizer.com/news/press-release/press-rel...
They are talking about Falsodex taken with Ibrance doubling progression-free survival. We need to investigate further. Like, what are the numbers - the actual statistics? and, Will this news expedite the switch from femara to faldodex for those of us that want/need to? Lots of questions. I remember my doc saying that the conference may facilitate changes... Guess she was right!
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JFL,
Just now saw your question asking where I find alkaline water. I get mine at the local health food store around the corner, called "Earth Orgins". They also sell it at Trader Joe's and Whole Foods. The brand I get is called Le Vai. Their tel # is right on the bottle, 407-944-1443. There are other names and brands but my mind is drawing a blank right no (one of it's favorite things to do these days!)
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wow Vivian thx for the great info on ibrance and fasolodex. Will discuss w/MO at next appt. Myra.
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I'd be interested to see if anyone can get insurance to cover Ibrance with Faslodex since it isn't FDA approved in that combo yet.
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Vivian thank you for posting that regarding the Faslodex. My onc had told me early on that if the Ibrance/Femara didn't work he would switch to Ibrance/Faslodex, rather than switch from Ibrance. Hoping that my insurance would approve. I think the good thing for me is that it was tested on Her2+ also, which I am. So far my markers are stable, but I was on Femara for almost 5 years and fear that although it worked previously, it may not work as well now since I've had it before.
Susan welcome. Other than the annoying monitoring of the blood counts, the drug has been fairly easy for me. I don't really have any side effects. I do get a little tired sometimes, but I think that has to do more with my not sleeping so well than the Ibrance. But all in all, I'm able to work full time and carry on my normal life. I have no pain with the Ibrance.
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Vivian, thanks so much for the faslodex/conf. info. I'll be watching closely!
Holly, "spot welding" is when your RO targets a few extremely small areas on your bones to give you pain relief. I'm not sure about the other ladies, but when I had the round of radiation on my breast after the initial diagnosis the field was pretty wide and included the lymph node area under my arm. This time the RO would hone in on a few spots to help with pain in my back/legs. It's amazing how small the field can be.
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Below is a link to the presentation discussed at ASCO this morning and simultaneously published in the New England Journal of Medicine (NEJM). It is the first article on the NEJM home page. Median progression-free survival was 5.4 month longer with Ibrance/Faslodex (9.2 months on Ibrance/Faslodex versus 3.8 months on Faslodex alone). This was a pretreated group so the overall numbers are different than the first line numbers from the Femara study.
Vivian, thanks for the info about the alkaline water!
Hope, Northtexas was able to get Ibrance with Faslodex covered by insurance. I am not aware of anyone else (yet). I am still trying and plan to succeed! I have updated my appeal letter with the stats in the article above.
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JFL,
I was just thinking about about you submitting your appeal! I think the Faslodex/Ibrance combo will take time for insurance companies to allow coverage - at least mine anyway. But, they do need to get your diagnosis and other information straight. That's for sure! If their codes and numbers don't match right they won't go any further. Keep us posted.
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3Holly's - I am at a trial at Dana Farber but , right now I am doing it through MGH. I don't have to be monitored as much anymore , so I moved it closer to home after the first four months of going into DF. It was my MO there that looked into lowering the dose and found that it was being done for fatigue issues. I am supposed to stay on this drug for two years so they want to make sure you can/will stay on it. I only have issues with fatigue the last few days so hoping this moves solves that problem.
Where in MA are you from? I live on the North Shore.
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Lenn, my brother lives in Manchester by the Sea. Myra
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Myra, I am right next door in Essex...
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Lenn13k, That's nice that you have MGH on the north shore since the drive into Dana Farber is not easy, especially with all the extra visits of a trial. I am on the south shore, but my husband grew up on the North Shore and the MGH satellite there has been great for his family. Thanks for that info on the Ibrance, good to know they can lower it if needed, and I hope you continue to do well with it.
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This is the third morning in a row with nausea. Didn't have it before. Something has changed. Ugh.
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Hope, we are on the same path. Sunday severe, yesterday milder, today somewhat better. Waist pain waking me at night when I turn over. Ugh is right. Myr
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Crum, I don't like the sound of that, Romansma and Myra. Have you guys been eating normally? Myra, it sounds like yours is actually getting better. Might not even be related to the Ibrance.
Get better soon! Romansma- when is your next scheduled doc's visit? Does the nausea go away or does it linger all day?
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Sandilee, mine does seem to be better, but it is first thing in the morning. Sunday, it lasted all day in waves. I did not eat normally Saturday evening, went out with friends and they eat crap and sweets. Could be related, but the waist and hip pain has been there for the last week since I was on my off week. Hopefully it will go away as I go back to taking the Ibrance for the last few days. Oddly, 2 weeks ago I said to my DH, wow, I have forgotten to take my pain pills and then zap here is this weird pain. Myra
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Myra, your pain pattern seems in line with what I've experienced the last two cycles. It starts on week off and continues into the first week of the new cycle. Increased pain in hips, lower back, even down my legs.
The nausea, though. I ate pizza Saturday, which I hardly ever do because I don't eat dairy, typically. But, it's Tuesday! The nausea seems to taper as the day progresses, but it does come in waves here and there.
I have a dr appt next Wed with labs. Need to find my Ativan, always helps with Nausea. Shoot, I was feeling a little more energetic for a couple days and now this.
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OK this is funny, I had pizza too Saturday nite
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Hang on, you guys. I hope this is just a temporary bump in the road.
That is funny, Myra. Maybe pizza is contraindicated.
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Ok, that's funny! Cept, I can't find my Ativan! I'm chewing gum to help. Ate some dry toast. Still nauseated! I hate feeling nauseated. I deal with other SEs so much better.
K, everyone, no pizza and Ibrance!
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So funny about the pizza ladies. I am thankful this doesn't happen to me since I love thin crust pizza. Great pizza in NYC. Real ginger ale helps with nausea as does ginger tea or crystalized ginger.
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Sorry to hear about the nausea, ladies, I wonder if the tomato sauce (acid) on the pizza had anything to do with it (my nausea was also in the morning, about 4 a.m., but was definitely connected to the indigestion/acid reflux which may have gotten worse from the meds).
I agree that nausea is "the pitts" - will never forget having 9 mos of it during my 1st pregnancy (actually lost weight) - it was continuous, then, but on the Ibrance luckily the nausea is not continuous (not sure if just random or diet related - I'm trying to figure out what to avoid, trial and error, but maybe it's not even the diet at all, could just be the meds).
Hope you feel better soon!
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I will tolerate SEs, but I draw the line at pizza!!! Myra
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Do you drink coffee? One thing I've been doing is having toast or bread in the morning before my coffee (should give up the coffee but can't), and the acid seems much better lately, so maybe that's working. I have not given up pizza - still have it on fridays, but not a lot of it. I don't think it's the just the pizza, could be a combo of things with the pizza (did you have Coke or root beer or tea or anything citrus with it? I have to avoid those things). Nausea is listed as a side effect of the Ibrance, so maybe it's unrelated to what you are eating, but In my case I think there may be a link with the stomach acid being there when there's an empty stomach, in the morning.
I'm eating lighter at dinner, and having the bread before my coffee - don't want to jinx myself, but haven't had the morning nausea in almost a week (before that, I had it on 5-21 and 5-25, both times around 4 or 4:30 in the morning). Your nauseau may be unrelated to acid, but it's interesting that it is occurring in the morning also, so could be, with stomach acid in an empty stomach. I am going to ask about it at my next appointment, will let you know if I learn anything new. I know addivan helps with nausea, but it knocks me out (I used to take just 1/2 the pill for a very short time, just after my chemos - not taking it at all now since the nausea is not continuous, just sporadic).
I Hope your nausea disappears soon - Hope, did the toast help at all?
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Hello ladies, just checking in. I had my mid cycle blood work of my first round and numbers were within normal limits except WBC which was 2.6, but not too bad. I was wondering from those who have been on this a few months if these numbers tend to fluctuate a lot from cycle to cycle or if they tend to hover around the same, especially when they are at the low end. My Onc wants me to have another blood test the end of this week (3 week mark) to see if they have dropped any more to see how I'm doing.
Hope and Myra - feel better. Nausea sucks. It could just be a simple virus that may just take longer to kick because of our compromised immune systems.
For those moving on to other treatments, good look and I hope the next one is THE one.
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JJski62, The counts tend to get low toward the end of the cycle, and some have to take a break to wait for the counts to come up, but I've heard that whatever happens in the 1st few months (whichever counts are affected) is usually the way it will generally go for the duration (for each person the pattern may be different though). Good Luck!
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Hello ladies. I am based in uk where I branch is not yet available . I understand it is likely to be so next year. I have just come off letrozole as it stopped working after 10 months. I am now on weekly taxol. I was wondering if you can still have access to ibrance and letrozole after having chemo and letrozole on its own failing or if it is just a first line treatment which would rule me out . Thank you x
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Torridon, I think you could get Ibrance if your doctor recommends it for you - many of us failed the letrozole alone and have also had the chemo previously. I hope it becomes available for you soon.
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First Time for a quick question-- Myra, you said you taught spinning 2x week. What is spinning? Is it like making your own yarn or something?
About pain and other SEs: Okay, when I was on my study that just recently got stopped (Veliparib with the oral chemo, Temodar) my tumor spots would ache and burn terribly while I was taking the capsules - I took them 7 days a week, and the pain started around day 3 and lasted until about 2-3 days after that week. Those pains were not the "zingers" you guys are talking about, see my *foot note below. but not a "poor man's zinger" either - Loved that Kaydee! Just had to add that in there, Lol! -- Anyway, after that, I would go back to the constant dull relentless ache that I'm sure we all can relate too.
With the Ibrance I am also having pelvic, low back,and top part of thigh pain (not waist, and not my other tumor areas like sternum and ribs) and I'm trying to figure out if it my tumors getting attacked or is it something else (I have lots of tumors in the regions listed above) Since so many people complain of pain there, too, I thought maybe it is related to our bone marrow with all the activity going on in the bone marrow right now where white cells are made or repressed from making. That theory has holes and does not address the waist pain that Myra and Kaydee voiced, What else could it be? Maybe something hormonal? I don't know. I had forgotten (probably subconsciously on purpose!) that Femera caused god awful hotflashes and they're baaasack......!
Other side effects I am having. Anything you want to ad?
- Tired, run down feeling
- Just mild nausea with light heartburn (twice only) so far. - Hooray!
- Giant poops that border on diarrhea, smelly gas - Weird as I have been dealing with constipation for so long. Aren't you glad this is not a face-to-face discussion, haha!
- Flushed face (Its got to be the Femara)
- A big wart on the end of my nose........only kidding
*On zingers: I think the zingers are coming from big nerves maybe branching from the spine. This is what Wikipedia (the most trusted news source on plant earth! haha...!) had to say: "Bone tissue is innervated by both myelinated ... and unmyelinated ...sensory neurons. In combination, they can provide an initial burst of pain, (zingers?) initiated by the faster myelinated fibers, followed by a slower and longer lasting dull pain initiated by unmyelinated fibers. Nociceptors responsible for bone pain can be activated via several mechanisms including deterioration of surrounding tissue, bone destruction and physical stress which shears the bone, vascular, muscle, and nervous tissue."
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Interesting about the zingers, Vivian, I wish I knew what it meant here! I'm just in the middle of cycle 2 so no scans yet--the wait is terrible, isn't it?
Has anyone who failed Letrozole alone had scans yet and has the Letrozole/Ibrance combo worked anyway? The news about Faslodex with Ibrance is exciting, but I'm wondering if it would be an option for those of us who already failed Faslodex once.
So sorry about the nausea some of you are having. Hope it goes away quickly, that is one of those "lifestyle" changers and it really stinks.
Also, especially for those of you moving on, have any of you seen this study opening in July: http://www.nytimes.com/aponline/2015/06/01/health/... ? Sounds so interesting and so much potential for opening up new treatment options!
I'm doing pretty well, less of that pain right now but I've caught another cold, ugh! But at least this one, unlike the last, seems to be moving on a bit faster--fingers crossed!
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