Ibrance (Palbociclib)
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Hi lovelies any tip or solution for dyspenea I. E shortness of breath... Mets with lungs/liver/bones.... My mom doc are switching to Kisqali(ribocyclib) due to intolerance of Xeloda.... GI increases to an extent... Want to remain hopeful:(
San
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Getting caught up on posts!!!
Way to go for all those with good scan results!!!
I had my CT yesterday. Waiting for results--middle of next week. I have to drink the stuff too. Lemonade flavored. Nothing to eat or drink before scan and scan scheduled for 8am. Then drinking "lemonade" on an empty stomach---Heartburn Central. Afterword I had biscuits and gravy and bacon for late breakfast. Usually do ok, but for some reason yesterday afternoon felt sickish and had one of those fatigue moments. Just felt blah rest of day. Better today.
Ibrance trial numbers for PFS are wonderful and I am thankful for this med, but also scary. I am now 1 year into this diagnosis and starting Cycle 11 next week. I know each of us are individuals and some will go longer, some shorter, on the PFS. As LaurenH said, I wish we could count years not months. Those months are going fast.
Can't wait to see pics of Grannax!!!!
Keep posting all !!!!
Hugs.
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Cure-ious, can you cross post the Paloma 2 trial info to the topic "Ibrance Users Greater than 24 months"? It will give us all new goals! I can try to cut and paste with your permission..
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JunieB, I am on Eliquis. My Onc (whose also a hemotologist) prefers this one because it affects fewer systems than the warfarin or lovenox. It’s also pill form which is nice.
They left the choice up to me so I went with the Eliquis. I admitted to them when the clots formed while on the blood thinner that a missed a few doses. I had also taken a long flight and stayed at high altitude about 2 weeks before the scan. The first time they found clots it was just after another long flight, so I’m making the connection (but they are not).
The first clots were found on my CT Chest with and without contrast. This time around they ordered an Angio CT which gives them a much more detailed view and is what they like at UCLA to follow clots.
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Thank you jensgotthis!
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congrats to everyone with the great scans! So good to hear. And keep your conviction Leapfrog - we are all behind you!
This seems a little minor in light of what we deal with day-to-day. But my two-week Viking river cruise from Prague to Berlin was just cancelled due to low river water levels. I was due to leave next Saturday, so it was pretty short notice. Will make lemonade out of it and re-book for next spring, but it is disappointing.
Grannax - waiting for the pictures
Kitty
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Sandibeach, I just finished cycle 41 of Ibrance/ Letrazole for my extensive widespread bone mets and had a stable scan last week.0
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Congratulations Lynnwood1960! That is a real achievement. May I ask, what dose of Ibrance you are on?
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Lynnwood, I had to go and share your good news on the Facebook Ibrance page. What an inspiration you are to all of us coming along behind you! Imagine how it feels for those who just started the Ibrance Dance.
Thank you for sharing.
Love from PatGMc (24 months, first on 100mg, then 75mg)
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Lynwood, awesome!!
Joyner, I don't know the details of the Faslodex-Ibrance trial, but numbers probably can't be compared directly to Paloma-2, because they would have taken a different group of patients, and I think the trial also included some people who had previously progressed on Faslodex alone?- whereas Paloma-2 was enriched for people taking the combo in first or secondline treatments? anyway the groups are so different you can;t compare them.
However, not only was the overall result the same (ie, the addition of Ibrance kicked butt over Faslodex alone), but in addition, there are new trials out comparing just Faslodex with Femara (no Ibrance tested) and faslodex came out the winner in that- so perhaps from that we can expect that Faslodex-Ibrance would give AT LEAST as good PFS numbers as they got on Paloma-2, and maybe even better.
Sandi- of course, feel free to post that link on your thread!!
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Amica, I have been on 100 mg for every month except my first month. PatMg I think I’m in that Facebook group, I’m in quite a few so not sure .0
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Lynnwood, wow!! What a torch for the rest of us!
Cure-ious, thanks for the clarification. That's all so encouraging, too!
And Time-for-a-Cure, what a disappointment about your wonderful cruise. Shoot. It's ironic, as when we were coming through the Erie Canal a week or so ago (and feeling rather trapped, as you can't get out of there unless those locks are functioning), they were worried about the likelihood of too much water from Hurricane Florence and shut down the locks for a few days in anticipation of having to manage excess water.
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I don't check in for half a day ... and come back to an overwhelming (in a good way!) amount of positive energy and loving support. I don't have the words. :-)
Anyway, to echo Cur-ious, the newbies on here should be encouraged as studies do keep pushing out the median PFS on this combo. And perhaps even more encouraged by so many positive scan reports this past week (GO AIRLINEGAL! -- glad you joined our party) and how many on this board are doing so well for so long. It's SO dark and terrifying at the beginning ... but life does fall back into place and can be lived in a truly and profoundly joyous way post diagnosis. None of us would have asked for this, but here are and we can make something out of it that's not so terrible after all.
Joyner, I did want to echo what Cur-ious said about Falsodex. I had also just seen some study results that were indicating it as a very strong if not even superior first-line choice. Recalling our discussion a few weeks ago, I wanted to make sure that info reached you.
Leapfrog, you rock girl -- we are all SO proud of you. Time for a Cure, sorry about your cruise, As we all try to squeeze as much joy as poissible of of this new life, that's more that a blip. :-(
Candy, we'll all be thinking of you.
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Getting ready to walk the catwalk A little bit of nerves but I did good it was fun too The walk wasn’t very long The models walked us down both time but My whole family was there to support me I’ll post more but there are some already on liver mets thread
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Grannax-
LOVELY !!!!
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My BFF came with me and stayed the whole time It was a 12 hour da
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Grannax you and your beautiful family look like you had a great time
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Grannax, you look beautiful...what a great outfit! Fun, fun fun!!!
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Grannax...gorgeous! And your strapless dress looks terrific! What a lovely family and BFF you have. Love the girl photo, especially. Well done!!
What a neat venue for the event. I see the airplane in the background. Can't see those shoes, though....
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Grannax had to go back and look at the airplanes
Tanya
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Grannax, I came here today hoping to see you in all your finery and here you are! Just lovely! And since you get to keep your dress we'll expect to see more photos of you out and about at fancy places with your cute family!
Your Fan Club here is so proud of your courage!
Love from PatG
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Grannax....beautiful photos and what wonderful memories you've created.
Time-for-a-cure....how absolutely awful to have that disappointment and especially at such short notice. That must be a real downer.
Have I mentioned that when I saw the oncologist last Wednesday my TM has dropped for a second consecutive month? As I said earlier, my memory is a sieve. This is the first time it's dropped twice consecutively; all other times it has bounced up after a drop. I know TMs are not overly significant but I had a bone scan about 6 weeks ago which was stable so a drop down to 560 was a good feeling. It had gone up to 710 two cycles ago, down to 600 last cycle and then this 560 came along. I told Andy, my oncologist I'd got it wrong. I always have a bet with myself and I'd bet it would be 550 and he told me in future we won't worry about CA15.3s, he'll just get me to guess and he'll write that up for the trial protocol. We laughed much more than the weak joke was worth but anything to laugh about is good!
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Granny- gorgeous! Hope you enjoyed it!
Leapfrog and others - yes it was a disappointment to have the trip cancelled last minute. But we are making the best of it and rebooking for April. We might try a quick getaway since i have the time off work, Who knows,maybe we will end up on Joyner’s porch.
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Grannax2 - Such a beautiful picture of you and your family.
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I just came across this article that I think may be interesting to you all. I am posting it solely for informational purposes, not to cause anyone any concern. It's titled:
What the tests don't show: Doctors are surprisingly bad at reading lab results. It's putting us all at risk.
By Daniel Morgan
October 5, 2018
The man was 66 when he came to the hospital with a serious skin infection. He had a fever and low blood pressure, as well as a headache. His doctors gave him a brain scan just to be safe. They found a very small bulge in one of his cranial arteries, which probably had nothing to do with his headache or the infection. Nevertheless, doctors ordered an angiogram to get images of brain blood vessels. This test, in which doctors insert a plastic tube into a patient's arteries and inject dye, found no evidence of any blood vessel problems. But the dye injection caused multiple strokes, leading to permanent issues with the man's speech and memory.
Daniel Morgan is an associate professor of epidemiology, public health and infectious diseases at the University of Maryland School of Medicine and chief of hospital epidemiology at the Baltimore VA Medical Center. That case, recounted in JAMA Internal Medicine three years ago, is no surprise. As a doctor in a large urban hospital, I know how much modern medicine has come to rely on tests and scans. I review about 10 cases per day and order and interpret more than 150 tests for patients. Every year, doctors in this country order more than 4 billion tests. They've gotten more sophisticated and easier to execute as technology has advanced, and they're essential to helping doctors understand what might be wrong with their patients.
But my research has found that many physicians misunderstand test results or think tests are more accurate than they are. Doctors especially fail to grasp how false positives work, which means they make crucial medical decisions — sometimes life-or-death calls — based on incorrect assumptions that patients have ailments that they probably don't. When we do this without understanding the science of risk and probability, we unacceptably increase the chances of making the wrong choice. In the worst cases, as with the man whose angiogram caused otherwise avoidable strokes, we increase the odds of unnecessarily putting patients in danger.
The first problem that doctors (and thus, patients) face is a basic misunderstanding of probability. Say that Disease X has a prevalence of 1 in 1,000 (meaning that 1 out of every 1,000 people will have it), and the test to detect it has a false-positive rate of 5 percent (meaning 5 of every 100 subjects test positive for the ailment even though they don't really have it). If a patient's test result comes back positive, what are the chances that she actually has the disease? In a 2014 study, researchers found that almost half of doctors surveyed said patients who tested positive had a 95 percent chance of having Disease X.
This is radically, catastrophically wrong. In fact, it's not even close to right. Imagine 1,000 people, all with the same chance of having Disease X. We already know that just one of them has the disease. But a 5 percent false-positive rate means that 50 of the remaining 999 would test positive for it nonetheless. That means 51 people would have positive results, but only one of those would really have the illness. So if your test comes back positive, your true chance of having the disease is actually 1 out of 51, or 2 percent — a heck of a lot lower than 95 percent.
A 5 percent false-positive rate is typical of many common tests. The primary blood test to check for a heart attack, known as high-sensitivity troponin, has a 5 percent false-positive rate, for instance. U.S. emergency rooms often administer the test to people with a very low probability of a heart attack; as a result, 84 percent of positive results are false, according to a study published last year. These false-positive troponin tests often lead to stress tests, observation visits with expensive co-pays and sometimes invasive cardiac angiograms.
In one study, gynecologists estimated that a woman whose mammogram was positive had a higher than 80 percent chance of having breast cancer; the reality is that her chance is less than 10 percent. Of course, women who have a positive mammogram often undergo other tests, such as an MRI and a biopsy, which can offer more precision about the presence of cancer. But researchers have found that even after the battery of exams, about 5 of every 1,000 women will have a false-positive result and will be told they have breast cancer when they do not.
The confusion has serious consequences. These women are likely to receive unnecessary treatment — generally some combination of surgery, radiation or chemotherapy, all of which have serious side effects and are stressful and expensive. Switzerland and France, grasping this problem, are halting and reconsidering their mammogram programs. In Switzerland, they're not screening ahead of time, preferring to manage cases of breast cancer as they're diagnosed. In France, doctors are letting women decide for themselves whether to have the tests.
Studies have found that doctors make similar errors with other tests, including those for prostate and lung cancer, heart attack, asthma and Lyme disease. Of course, no test is perfect, and even very careful, statistically sophisticated doctors can sometimes make mistakes. That's not the problem.
Too many of my colleagues do not understand that many of the tests they rely on are deeply fallible. In a study I published last year with several colleagues, we reviewed the treatment of 177 patients who were admitted to hospitals with a wide range of problems, from broken bones to severe intestinal pain, to see how necessary their tests were, as judged by the latest medical guidelines. We found that nearly 90 percent of the patients received at least one unnecessary test and that, overall, nearly one-third of all the tests were superfluous. When patients receive tests that aren't needed, there is a reasonable chance that doctors are using the results to make choices about treatment; by definition, these choices have a higher danger of being flawed.
In another paper, from 2016, my colleagues and I interviewed more than 100 doctors to gauge their understanding of the risks and benefits of 10 common medical tests or treatments. We found that nearly 80 percent of our subjects overestimated the benefits. Strangely, the doctors themselves acknowledged this, with two-thirds rating themselves as not confident in their understanding of tests and probability. Eight out of 10 said they rarely, if ever, talked to patients about the probability of test results being accurate.
I have to admit that I, too, sometimes fall prey to overvaluing test results regardless of their probability. Last year, I saw a patient who had problems breathing. His symptoms were typical of chronic obstructive pulmonary disease (COPD), but a test for a blood clot in the lung came back positive. This test has a relatively high false-positive rate, but we still started the patient on a blood thinner, which can treat clots but also has serious risks, such as internal bleeding. Within a few days, another test confirmed that he did not have a blood clot, so we discontinued the anticoagulant, which caused no permanent harm. But things could have gone much worse.
Basic misunderstandings about how tests work and how accurate they are contribute to a bigger problem. Although precise numbers are hard to come by, every year, many thousands of patients are diagnosed with diseases that they don't have. They receive treatments they don't need, treatments that may have harmful side effects. Perhaps just as important, they and those around them often experience enormous stress from these incorrect diagnoses. Treating nonexistent diseases is wasteful and often expensive, not only for patients but for hospitals, insurance companies and governments.
Doctors also tend to overuse some tests. In a paper last year, my colleagues and I highlighted some key examples: One was computed tomography (CT), a high-tech scanning technology that is increasingly used in patients with nonspecific respiratory symptoms. In cases with only mild respiratory problems, the test does not improve patient outcomes, and it can lead to false positives. Often, the test shows small lung nodules that can lead doctors to follow up with a high-risk surgical biopsy for cancer — which is very unlikely to be the cause of the symptoms. The scan also exposes patients to radiation, which is a risk in itself; studies have found that between 1.5 and 2 percent of all cancers in the United States are caused by radiation from CT scans.To be fair, it is not surprising that doctors tend to overestimate the precision and accuracy of medical tests. The companies that provide tests work hard to promote their products. Doctors often think that ordering more tests will protect against lawsuits. Moreover, medical schools offer limited instruction on how to understand test results, which means many doctors are not equipped to do this well. Even when medical students have short classroom instruction in test interpretation, it is rarely taught in a clinic with actual patients.
There is no simple solution. One key step is for doctors to acknowledge the gaps in our understanding and to improve our knowledge of what each test can accurately tell us. Medical schools and professional associations can also do a much better job of educating doctors to understand how risk and probability work. Patients must also play an important role. They should realize that doctors, even quite capable ones, may not fully understand the statistical underpinning of the tests they use. In essence, your doctor may have a blind spot, an unconscious tendency to have too much trust in a test. Being aware of this problem and asking your doctor about disease probability can reduce hassles and anxiety — and sometimes even save lives.
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Time-for-a-cure, I'm out sweeping. Junie, very thought-provoking article. Thanks for providing it.
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Can anyone tell me how to deal with loss of appetite??? How do you tackle this plz help...
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Love the photos Grannax....you look beautiful. Lynwood great news and an encouragement for all of us.0
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Lynwood - your post made my day!
Grannax - wow! You look wonderful and so happy to be honored with your family surrounding you! That dress is absolutely stunning on you! Thanks so much for sharing with us!
Thought prolong article, Julie B - thanks
SanSF - I’m sure someone will be along to help you with your loss of appitite. I don’t have any experience with that
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