Ibrance (Palbociclib)
Comments
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Hobbes, FABULOUS news! WOOHOO!
Hopeful, I wish that I had advice to provide, but I'm ignorant on that subject. Had a mastectomy 28 years ago, but that was before oncs were leaving some tumors in place.
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Thank you ladies for all your advise. I will be having a discussion with my new MO in July and will decide if I will go see MO in larger city at least part of the time. I have not progressed yet and am still on the first line treatment meds. I guess I just want to be in the front of the line for new treatments that come along that may help ( as I am sure we all do ). I fear that being in a small community there may be the mentality that Stage 4 is terminal and not be given priority because "she is dying anyway".
How do MBC patients get the chance for clinical trials, like Judy Perkins??
My MO that is leaving told me the office had a person that worked with clinical trials, but that position was eliminated. So I don't think there is anyone in the office now actively looking for advancements for the patients. So I feel I have to be my own advocate and find the info out myself. I think I am talking myself into going to the larger practice, even with the drive.
Do you all notice that just typing out your post makes you get your thoughts in line?
Thank you all for being there. I look forward to your posts and hearing more good news and funny stories ( PatgMc).
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I was so excited when I saw this about my local breast cancer support group meeting. I don't go very often because they never do anything about MBC. Plus, I'm actually seeing this guy on the 20th because my MO will be away. Candy, we all end up being our own advocates in this process. I think it was Z who said that no one will spend the amount time or energy we will spend ourselves on our care. Sad but true.
This month's meeting is Sat. June 23rd, 2018 from 10:00-11:45.
The speaker is Dr. Padhi, Mem. Med. Cancer Center
Hematology-Oncology Specialist.
The topic: "CDK4 Inhibitors
in Hormone Positive
HER2 Negative Metastatic
Breast Cancer".
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Candy: You can go the clinical trials.gov and set the parameters to metatastic breast cancer and then see if you qualify for any of the trials, and if there is trial site within a reasonable distance of where you live. Clinical trials tend to include women who are out of other options.
No one will advocate for you as much as you can advocate for yourself. Knowledge is power.
Hobbes/ Jo
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Steve Rosenberg's clinical trial, which is in the news for having cured Judy Perkins, is listed here:
https://clinicaltrials.gov/ct2/show/NCT01174121
Anyone interested should contact them directly:
NIH Clinical Center contact NCI/Surgery Branch Recruitment Center 866-820-4505; email: irc@nih.gov
It is an incredible resource, would be prohibitively expensive to try to get this personalized treatment outside of a clinical trial
You must have already had progression on two therapies for MBC, including at least one chemo, and not more than 3 brain mets
You will need to travel to the NIH campus to receive treatment.
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hi everyone!
I am wanting to share the good news that it appears my treatments are working (it’s been a little over a year now) and the primary tumor in my breast is pretty much gone (was 6cm!)!
I am feeling both a huge wave of relief and also disbelief that this is actually happening. I feel like it is officially moving me out of a “crisis” mode and more into believing that I can live for a long time with MBC.
I also want to say that I know that each of us is unique and our cancers are unique and that’s why this whole process is so dang freaky because we can’t really rely a whole lot of the statistics and on what is happening to anyone else. For those who aren’t responding to Ibrance/letrozole, you are still my mentors and inspiration because I feel like there’s always the chance that this will not last forever....with the darn knowledge that Ibrance seems to averagely work for about 2 years.
Lots of love to everyone!!!!!!! Thank you for letting me share!!!!
Brenda
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Hopeful77, the doctors don't yet have a consensus about the best way to proceed in a case like yours. There are some studies that show that a large proportion of long-term survivors (10+ years) have had surgery on their primary tumor, but that doesn't necessarily mean that they wouldn't be long-term survivors if they hadn't had surgery. In recent times, doctors have tended to offer surgery to patients that had good prognostic factors (low tumor burden, oligometastatic disease, NEAD except for the primary tumor, etc.). It would make sense that these patients would have survived longer regardless of surgery. There are now ongoing randomized clinical trials to answer this question, but no results yet (due to the long follow-up necessary).
On the other hand, there are studies (mostly animal, with some human anecdotal data that suggest that surgery can cause an "awakening" of mets, although there is promising data that use of NSAIDS pre-, peri- and post- surgery might be able to keep that under control (doctors don't generally like NSAIDS around surgery time as they can cause bleeding problems).
I know some of the ladies here have had the surgery and are happy they did - there's something to be said about getting as much cancer out as possible. There are others that are grateful for not having gone through that major trauma. In both camps, there are people that are doing well years later, and obviously people that are not. I don't think there's an absolutely clear answer to suggest that you should get over your dread of an invasive surgery and go through with it because the benefit is clearly there.
I'm in a fairly similar situation - low FDG uptake, but not quite NEAD outside of the breast, no FDG uptake but still a palpable "thickening" in the breast (much smaller than the original tumor; could well be scar tissue). I've been on Ibrance for 4 months. I told myself that I won't be thinking about surgery until and unless there are no "hot-spots" anywhere else and surgery would bring me to NED. Even then, I'm not sure what I would do - I'm kind of hoping that if I do end up in that lucky category, I'll also have some more proof that the breast tumor is dead and it will be a moot point. I would probably take the same approach in your case and postpone the decision until no other evidence of cancer remains outside of the breast. It appears that it takes quite a long time (sometimes over a year) to get the maximum effect from I/L, and maybe, hopefully by then your breast tumor would be dead as well.
Tough question, for sure, giving up the Ibrance good times for a while without any kind of certitude that it will add some time to our lives...
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Jaycee-49---
You should definitely go to that meeting and bring us back a report. I would love to hear what is said.
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I am afraid that they will not give me more Ibrance due to too low white blod counts. For the last cycles I have been on a low dose, but even after a 14 days break from the medicine my neutrophile was 0,7 ... Anyone with experiences?
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Anna, ask your oncologist about the clinical trial where they give you ibrance for 5 days on and 2 days off. It is being tested as a way to both improve effectiveness of the drug and improve blood counts. University of Washington School of Medicine I believe is the sponsor of this trial. Maybe your Onc would permit you to try it that way, outside of the trial after your counts bounce back.
Also, ask your oncologist about trying a mushroom extract such as maitake D extract. It really worked on my wife after her chemotherapy, and over doubled her neutrophils in just 3 weeks.
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Oh, Brenda, what fabulous news! We are all thrilled with and for you! Thanks for sharing it!
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candy, I am definitely planning on going to this meeting if my health holds steady. I'm a little concerned about the CDK4 without the 6 in the announcement. I'm hoping it is a typo and not the guy not knowing anything. He is new to the practice (I could have switched to him when I dumped the old guy) so maybe he is required to do this kind of presentation, paying his dues to the community. I have lots of questions for him but should I ask at my regular MO appointment with him or wait until the meeting? Some of each, I guess.
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Each time one of you speaks about statistics and how they apply to you, I wish I could be sitting there with you to tell you they don't have anything to do with you. You are you and this cancer is going to be unique to you. I was going to sit down today and write something about that and what do you know, Coping Magazine came in the mail and 27 year survivor, Dr. Wendy Harpham has an article. Here's the quote I wish I had written but didn't have to because she did!
"Statistics about my disease sometimes make me feel hopeless. That's giving statistics too much power. I must always remember statistics are based on groups of past patients with similar cancers - and not on clones of "me" with my unique cancer."
I don't think I can add anything to that, sweet friends....except what she wrote about hope:
"Expectation is a state of mind that helps me prepare. Hope is a state of heart that helps me live."
And one more:
"Triumph over cancer is measured by how I live - not how long."
Amen?
[www.wendyharpham.com]
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Good and inspiring quotes PatgMc, thanks for sharing.
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Thanks vm Piggy99 for your insight, you are right that if surgery does not bring me to NED, I will probably not go for it too.. As I still have a low hot spot on my T12, my onc told me to do mastectomy then radiate this spot. It definitely sound good to the mind that I could be NED and continue life happily till things changes again..
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Ok, oldies I have to admit to joining the club. We've been married 45 years this June. I was 21 and he was 26. We look at each other and say, "How did we suddenly get old?" and shake our heads and laugh. I fully intend to be here for our Golden.
Thanks Husband, that's interesting information. I'd like to see how that pans out. I'm on a trial so I follow trial protocol, low neutrophils, low Hb, et al but somehow I manage to scrape back up to 1.00 or 1.11 as I did last cycle, after a two week break. I find that at the 28 day blood test my level is usually around .67. One cycle it was suddenly .99 on day 27 and I was excited, thinking that meant it was on the way up and could get myself onto a one week off cycle but I went back the next day to have it checked again and it was .67 as usual. What I've learned is that, at the 28 day cycle, my levels are actually still dropping. They don't start to rise until well into the second week's break, which is why I'm lucky to ever get higher than 1.1 to 1.3. But as long as I can start after two weeks I'm happy. My onc says it makes very little difference whether it's one week or two weeks off.
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thank you @JoynerL!! It gives me so much more room to breathe!!!
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Pat - As always you have the 'right' stuff to quote - thank you!
Leapfrog - yayyy for longevity!! I am so hoping to get to Australia in October! I have scans July 17, so if all is clear I should get the go ahead -- here's hoping and praying
my neutrophils are always a 2 week minimum catch up before they go back to 1.0, I just keep on though, mid way through cycle 4!Happy saturday everyone (Sunday for some
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Got slammed at work with a "fire drill" from a client who needed a hundred page document put together in two days so I had to do a couple of 9am-8pm days. Exactly the kind I said I would try to avoid after my diagnosis. Somehow managed to sneak in my bloodwork (good enough to start cycle 5 I/L) and my Xgeva shot. The funny thing is, I've felt more like my old self and more filled with a positive outlook than I had in a while, having something that required my concentrated attention most of the day, plus the little shot of adrenaline of the tight deadline. There was very little time left to think about cancer, but I also got behind on your updates.
PatgMc - Although I didn't get a chance to post, I did a little dance in my office reading about your results and I got a bit teary eyed reading your account of the PET and MO visits. If there is any type of karma in life, you should get to NED just based on all the light and hope you bring to all of us with your posts.
Neogirl - I have had four cycles of Ibrance, and during the last one I can notice more hair coming off in the shower, but I wouldn't say it's a huge amount. I've switched to a biotin shampoo and will see if it helps slow it down.
Hobbes, that's great news on your scan. Sounds like I/L is still slowly at work on that liver met, shrinking it into oblivion.
Brenda, that is amazing that I/L melted away a 6cm tumor. And I know what you mean about breathing a sigh of relief when treatment is working. Especially with Ibrance being so new, and so little being known about the long term outcomes we can hope that maybe for some of us it can be the ticket to long term disease control, or maybe even long term remission. As of the last Pfizer update, about 30% of the patients were estimated to be progression free about 4 years out. I hope this is our version of Herceptin, the one that turns the tide ever in our favor. There's nothing to lose by hoping, and a lot of joy and peace of mind to gain.
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I lurk here more than post, but just wanted to let people know I am in the middle of cycle 40 (starting year 4!) and hoping for many more months of good response on Ibrance/letrozole. I credit my longevity with it mostly to the caution my onc has shown in the face of potential progression. Twice over the past three years there has been "something" inconclusive but concerning that showed up on scans, but since I wasn't having any new symptoms, my paraneoplastic neuromuscular symptoms were mostly quiet, and my labs were staying within their typical slightly-fluctuating range she would counsel me to stay on this regimen for another 3 months and re-scan. In both cases the "blip" either disappeared or got significantly smaller, and then was gone on the next scan months later. At 2 other times over the years my CA27-29 would take an abrupt rise (by 20-30%) for 2-3 months and then would fall back into my usual at normal to just above-normal range. She was not quick to suggest a change at those times, either....some of my cancer-friends would express concern that we were not being nimble enough in response to those things, that I was risking letting new metastases get out of control. But we always stayed the course and I shudder to think that I might have reacted from a place of fear in the absence of definitive signs that the treatment was not working any longer and pushed for a change and missed the chance to have 3+ good years from this combo. So I counsel restraint in the absence of definite progression or concerning symptoms.
Hopeful77- Regarding the need to remove the primary tumor-- there is conflicting evidence regarding the long-term efficacy of this. The 2 most recent large trials comparing removing the primary tumor vs leaving it in place did show a small survival benefit for getting the tumor removed. HOWEVER, those trials were done in countries with very limited availability-- or no use at all-- of medications that are standard of care here in the US and in western Europe, and so there may be less applicability to us in the US since we have many other treatment options that are effective (such as Ibrance and other targeted medications.) One has to consider the systemic effects of the stress of surgery and recovery, also. But if you feel strongly that you would like the primary tumor gone, then there is no evidence to suggest that you not do it. It really seems to be one of the great unanswered questions. (FYI, I never removed my 2 small primary tumors (5mm and 6mm) ...both of them were slightly smaller but still present 12 months after starting I/L, but when we looked again a few months ago (almost 3 years later) they were not detectable by US or MRI. Tumor regression on the anti-hormonal medications can take a long time.
Anna- Are you taking 75 mg of Ibrance? If not, have your doc lower your dose to 75 mg. (I have been on 75 mg for the last 37 cycles-- my WBCs/ANC could never tolerate the higher doses)...also, a few months ago my onc and I were talking about Ibrance dosing regimens, and in particular we were talking about the Washington University trial using Ibrance 5 days on/2 days off continuously...she said that she had a patient who couldn't tolerate even 75mg on the usual 21/7 regimen but after reading about that trial she switched that patient to 6 days on/3 days off (continuously, no week break anywhere) and that patient is doing well side-effect wise and having good results. There are lots of possibilities for adjusting your dose--the key is you have to figure out a way to actually get the medication into you and not have to take prolonged breaks from it.
To everyone else, I hope that you get many many months of good response from Ibrance!
Be wall and be happy.
Elizabeth
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Mica1. Thank you for posting this info. You uplifted my spirits just when I needed it. I am on cycle 19 Ibrance 100/ Letrozole. The liver mets are always frightening, but I am NEAD for now.
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Mica1.....I know it took courage to stay the course...thanks for sharing0
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Mica thank you for sharing. That is very uplifting. 😊
Hobbes the one thing I'll add is that some MOs feel a reason to leave the primary in bone only cases is because response to treatment can much more easily be determined. As you know it's very hard to assess the status of bone lesions as sometimes positiveresponses can appear negative.
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Mica - thank you so much for sharing, it gives hope to everyone, especially knowing you have been on the 75 mg Ibrance for so long and with those results!! please continue to 'lurk' and come out when you have something to say
. Hugs janky 0 -
mica, thank you so much for taking the time to share your very hopeful story! If you can have success for so long on 75mg, that gives everyone so much hope. I'm 20 months in with 3 of those on 75mg (100mg before that) and my recent scan was good. I believe there will come a time when everyone is offered our dose and probably something even lower! And I'll bet we'll end up with less time on and more time off! My best to you and all the other Ibrance Dancers reading and posting here!
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P.S. Mica1, didn’t you post a few months ago when you thought you had progression? Was that you? I remember being very moved and extremely sad when you talked about your daughter and your dimming hopes and dreams of being with her in the future. Mine is 15 and I recall deeeply empathizing with your fears ... just as I am now sharing even more profoundly in your joy. :-)
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Happy Alert!!:
A friend of mine just posted on Facebook about her 16 year old daughter winning a speech contest. My friend adopted this precious girl as a newborn two years after she finished treatment for MBC. Add that up and you'll see that she's about 18 years from treatment for bone mets! She has had nothing show up on a scan in all that time. Is she cured? In remission? NEAD? I don't know but she sure is a beacon of hope for me that I and you could one day stop treatment and be well.
One other Happy Ending note to this story. The baby was born in a prison and her mother chose my friend and her husband from a portfolio of eager couples. She got a call that her baby girl had just been born and she needed to get to Texas ASAP to pick her up. I had the absolute privilege of giving the baby shower and can still cry just thinking about it! (My friend's oncologist would not sign a letter for the application verifying that she was well enough to adopt a baby. He didn't think she would live to raise her. He now speaks about her at conferences.)
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Ooh, I love "happy alerts"!! thanks, Pat!!!
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After 33 months on ibrance and letrozole I have a new spot on my left femur head and spots on t12 and l2 that were gone have come back. My next treatment will be aromasin and afinitor, I am hoping that I tolrate it as well as I have the ibrance. Good luck and many months without progression to all of you. Marilyn
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513mgv, I don't mean to be remotely presumptuous, but I'm still re-reading Mica's wonderful and very encouraging post of June 9th about her several "false alarms" during her ongoing Ibrance treatment and about her doctor's choosing to stay the course and keep her on Ibrance..... and then having the areas of concerns clear up ultimately. Is that even a possibility for you? I'm guessing not, but I did want to point out Mica's post to you, just in case.
Sending huge hugs and love for great success in the future!
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