Ibrance (Palbociclib)
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Good Afternoon All,
Hobbes it's times like that sewing circle that I wish one of my foul mouthed friends were with me to curse the perpetrator out.
I received a similar comment from my cousin. He advised me not to use conventional medicine. Why would I allow a surgery (hysterectomy) after they already cut me before (13 years ago masectomy). Anyway because he is my cousin I politely explained all of my choices. I bit my tongue and held my sarcasm in check. His father called me and sort of apologized and said that if he was in my position he would do anything and everything.
People sit around and discuss this illness and they have no idea what we go through to live each day and continue to undergo treatment after treatment with hope, determination and fear. The treatments have improved over the years. Our courage allows future generations to possibly have a cure. I hope they find one in our lifetime.
JFV I think an eye needle poke is just about right! I'm originally from Long Island too.
Tanya
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Frenchhorn,
The entire thing is scary and additionally it sucks. The ibrance is not as bad as the initial chemotherapy that I had. The side effects are there, the word CHEMO, is there, but it has many positive outcomes for instance shrinking tumors and making them disappear. We're here for you.
Best results and Best outcomes
Tanya
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Joyner, thank you for the WSJ link. I saw it on Oncology Business Journal but couldn't open it. Your link let me in! For those of you who don't want to enter your email for access, here's the part most interesting for us. It's exciting that this has happened for someone and is not "pie in the sky" research! Here's Judy Perkins, healthy and free of MBC right here looking at us.....This could be me or you someday! Let's all meet up in Bethesda and get it at the same time!
From the WSJ: ...." In the lecture at a Boston meeting of the American Association of Cancer Research, Dr. Rosenberg reported on the first patient with metastatic breast cancer who is disease-free nearly two years after her first immunotherapy treatment. In the therapy, a person's own cells are multiplied billions of times and reinfused into the patient. Dr. Rosenberg's lab has already reported successes in treatment of melanoma, lymphoma, colorectal cancer and bile-duct cancer.
That patient is Judy Perkins, a 51-year-old structural engineer from Port St. Lucie, Fla. She was diagnosed with metastatic cancer—cancer that spread beyond the original location—in 2013. Then she underwent multiple regimens of chemotherapy and other standard treatment, to little avail. But she learned of the NCI research, and in August 2015, doctors in Bethesda harvested her immune cells. In December 2015, she got an infusion of her own, intensified immune cells. Driving home, she says she already could feel a tumor that had shrunk. "I thought this thing could be working," she says.
The National Cancer Institute recently disclosed that metastatic breast-cancer patient Judy Perkins is now cancer-free after undergoing immunotherapy treatments.PHOTO: CHARLES ANDERSON
By May 2016, her scans at the NCI came back clean—no detectable cancer. They have stayed clean, including during a visit to the NCI in Bethesda, Md., just last week.
Ms. Perkins is only one case. But the fact that she had metastatic breast cancer that is no longer detectable makes it very consequential. It follows reports from the Rosenberg lab about other internal-organ cancers, specifically colorectal and bile-duct.
"We now see this treatment as a blueprint. We've taken the first steps in treatment of these common solid-tumor cancers that don't respond to anything," he says. But he cautions, "Each patient is a puzzle."
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It is important to understand that CAR-T therapy is a low odds crap shoot because it depends on rolling three-eyed snake eyes ...
- your cancer has to express a unique protein on the surface they can target ... one expressed by the cancer and not by your normal cells
- they have to correctly identify that protein
- it has to be present in sufficient quantities on the cancer to be visible to the immune system
The odds of anyone one of these things being true are not high and combined ... I've heard it described that Judy won the lottery.That said, she's in remission and I'll take any odds at this point. Also, the NIH has many immunotherapy trials and they are rapidly improving and learning. When you approach them to enter any trial what they really do is screen you and match you with the best trial in their entire stable. I encourage people to get into their system. They will talk to you only after you have failed one line of standard treatment but I would not wait much longer than that to approach them. And I would not wait for crisis/progression. You want to be screened and ready to go when you progress as the intake process takes months. Don't hesitate to call if you are not actually in the middle of a treatment change.
>Z<
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Z, not too many years ago the researchers for Ibrance were not allowed to present their work at oncology meetings because it was considered (I'll use your words) low odds crap. The main doctor said attendees laughed out loud when he told informally what their lab results were indicating. I bet they all wish they had listened and hopped on board since it's making billions!
I just heard from a friend who is almost two decades out from a Stem Cell Transplant for MBC (bone mets). It was eventually determined that statistics didn't hold up for using transplants for MBC and I haven't heard about one for a long time. However, my friend has had no more evidence of disease (and no further treatment) since hers. All that to say, maybe immunotherapy will work for a limited number of people or maybe it will just lead to the next thing that works for large numbers (like Ibrance). Then again, maybe after the kinks are worked out, it will be huge. I'm always going to hang my hat on Hope!
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Amen PatgMc0
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Pat - I agree. It's just important to understand where things stand and that Julie's experience will be difficult to duplicate. That particular trial (the TIL trial) is very very tough, involving a month in the hospital with your immune system wiped out by chemo. You are highly susceptible to sepsis during this period and more than one person has died due to the trial rather than their cancer directly. So there are significant risks as well as low odds of success in the TIL approach. That said, the NIH and MSKCC both have many trials are worth looking at. The term immunotherapy refers to many very different approaches to immunomodulation.
A component of what I am getting in Japan is close to CAR-T without the part where they wipe out my immune system entirely ... they are throwing dendritic cell vaccine into the mix with some other higher odd plays. I am last person on the planet to dismiss CAR-T or low odd plays generally.
>Z<
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Z, I have hope for your new treatment too and I look forward to plastering your giant picture (in a kimono) all over the place when you get the fabulous results we expect!
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Jaycee I used a magnesium spray on my legs and feet at night last year. It helped. I got it on Amazon. Also I take a calcium supplement with magnesium.
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Thanks, Liwi. My vitamins and calcium both have magnesium. A topical approach like a spray would be good. I worry about GI side effects of the oral stuff. Amazon? My home away from home. Going there now.
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Pat, What a wonderful success story you posted about your friend. She was a true pioneer who took the ultimate leap of hope and was rewarded with the gift that we all yearn for. It takes real courage to take a chance with some of the trials. Without those pioneers, we would not have the advances we are seeing. I have read about other people like your friend, people who are outliers or exceptions and experience successful outcomes in clinical trials, even though the treatments in the trials have been classified as failures since they failed the vast majority of participants. It makes me wonder how many more of us might have benefited from stem cell transplants and other failed trials. I understand why researchers must focus on the biggest bang for the buck, of course, or what benefits the many rather than the few. My hat is right there with yours. Hope keeps me going.
Hugs and prayers, Lynne
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Lynne, exactly! I have several friends with leukemia who were on the Gleevec trial. They're still living well even all these years later. Now we're learning that lots of the people taking Gleevec have been able to stop the pills and remain cancer free. I have another "friend" (well, he's someone I don't like a lot but, whatever...good things happen to not very nice people too!) who did the second bone marrow transplant for acute lymphoma in Memphis 27+ years ago. Totally experimental but never a recurrence!
Many of my friends with various cancers were in trials or were among the first to get new drugs. One precious woman was at our support center the day we learned Herceptin was being made available for compassionate use because the trial was having such success with HER2+ MBC. She phoned her doctor and got on the drug right away. Here's the moment for the drum roll....Julie had been pregnant when her cancer recurred in her bones and liver. That baby....that sweet baby....just started her first year at the University of Texas!!! Throughout these 20+ years Julie has been in and out of treatment....Herceptin and the newer drugs developed because of the Herceptin breakthrough.
The reason I tell the Herceptin story is that Ibrance could follow that same path. Many of us are getting months and years of life from this fancy drug. Researchers all over the world are studying what comes next. It's in the financial interest of Big Pharma to keep us on multi-thousand dollar drugs for a long time, right? Money + the passion of cancer researchers can only be good for us!
Sorry for the long post but I would bet my pathetic bones (I take that back...they're much less pathetic than this time last year!) that we will see results from the "Ibrance-plus-whatever" trials, perhaps additions that will even let people revisit Ibrance down the road!
Tipping my hopeful hat to all you pioneers, especially you new folks who will be bringing us good news as the months pass. We can't get enough of it!
Pat (1)
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that interesting New Yorker article I think talked about how easy it is to study the people who get cancer vs the people who don’t get it- why don’t they get it? Or study why someone is an outlier in their response. There are fewer numbers of them and harder to study. And what do you study in the person who didn’t get the cancer?
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I am on both Ibrance and letrozole. I know that progression will eventually be in my future and I know to monitor my CT/bone scans, my TMs, liver enzymes and how I feel. Do we ever know which of the two drugs failed, ie, the targeted or the hormonal or just assume they failed together? It is a question I will ask my MO next visit as I guess it decides the next line of tx.
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Thank you lilliemillie, liwi and Tanya, The ibrance cycle was at 100 and I asked to have it dropped to 75 when I started radiation for skull mets. Even with the reduced dosage my neutrophils, wbc and rbc continue to drop. I was a little surprised about the one month break and the mention of a change in treatment. I do have an immune deficiency that effects my gamma globulin. It makes me prone to sinus infections. Fighting the sinus infections probably makes my reaction to ibrance worse.
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Frenchhorn, I got the call from Pfizer the day after the big call~~that was Wed. afternoon and I picked up the Ibrance Sat. late afternoon. I stared at the bottle for an hour and my daughter just happened to text me then. I told her I was having a hard time taking the first pill and she asked why. I told her that if I took it, it meant I agreed that I was starting a drug to give me more time~~in other words I had ended my life of NED and entered MBC. In for a penny in for a pound. She said she understood and I took my first Ibrance capsule. I took the last one of cycle 2 and so far so good. Where do you live Fenchhorn?
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Sandibeach - very good question. When ibrance and letrozol fails, we don't know if it was ibrance or letrozol. ibrance did not work in small trials as a single agent which means it requires a working hormonal treatment to be effective. one could argue that if the hormonal fails the treatment will fail. if that is what happened it makes sense to switch to another hormonal and continue with ibrance. not all doctors assume that ibrance should be continued in the second line with the second hormonal. Many women may need to press this point with their doctor.
a biopsy with genetic testing and immunohistochemistry may help figure out what happened. ibrance/letrozol failed me over the summer and just got my genetic testing back. i have a mutation that indicates that cdk 4/6 inhibitors will be effective on this new growth even though ibrance "failed" me. I also need to get immunohistochemistry to see what is going on with my ERPR status and my HER2 status but perhaps the hormone status has changed or I am HER2+ now. that would explain why Ibrance "failed"... it did not fail, I became hormone therapy resistant. Abemaciclib would be the way to go in that case as it works as a single agent.
>Z<
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Z. Nice response. Thank you. My MO said when I progress, I would probably go to Afinitor/Aromasin next. So need to start educating myself to see if I could switch to a hormomal down regulator and stay on Ibrance.
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I'm feeling incredibly lucky. My latest set of scans are better than I had hoped. Now if I can just keep the blood clots in check and ride this Ibrance/Letrozole train as long as possible
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Good Saturday morning all,
All this talk about new treatments, studies, and trials boosts my spirits and makes me hopeful. Thank you all for that this precious morning. I love the stories of resilience and mettle in these pioneers.
Tanya
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That is SOOOOO fantastic, Jen.
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Yay Jen!
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Jen, WOOHOO, WOOHOO! Your scan results look great. I am dancing for joy.What are you taking for blood clots? I think you already told us, but my brain is not what it once was.
Hugs and prayers from, Lynne
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Jennifer....Fantastic news!!!!
Yes...these trials are very encouraging. I only hope that if I get to that point there would be a trial in my area. I could not afford to travel elsewhere.
Hope
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Great News Jen!
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Jennifer, you have totally got this!! Congratulations on that wonderful report!
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Jen, congratulations! That is AWESOME!!!
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Congratulations, Jen!! Great news, heading into the holidays, now take a deep breath and dive into something fun!!
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Z- The ERBB2 in your report, that is same thing as HER2.
CycD means you should do well with CDK4/6 inhibitor, so probably was not the Ibrance that failed.
So Abemaciclib with Faslodex sounds good, assuming you are still ER+? want to add immunotherapy? or (probably) wait and see how the immuno you are taking now might synergize with those drugs?
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Great news Jen....
Has anyone heard from Diannarose....just wondering how her new treatment is going0
