Ibrance (Palbociclib)
Comments
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KarRGB- great news about being stable
April- good news about your bloodwork. I am so sorry to hear of your loss. I miss my furbaby like no tomorrow. They leave such big paw prints on our lives. ❤️❤️ On a different note, are you ready for the snow? Where I am in OR we are going to be under a blizzard warning (gorge).
Thank you ladies for being in my back pocket. I needed you all today. After the scan, I broke down on the bed from the anxiety of having it possibly be in my head. After not looking at my patient portal, my MO called and said there was nothing in my head (cancerwise). However on the neck scan, there is a small mass by my first rib. Since he was at home, he will investigate and report back to me tomorrow. He wants to call all the radiologists since my chest scan one week ago did not pick this up. But treatment will remain the same. I am so relieved! Thank you for allowing me to share my ups and downs and hanging out in my back pocket for the afternoon. Tomorrow I have my consult appt for radiation to the humerus and L5. No bone biopsy. My humerus bone is too strong and the biopsy team says they won’t get a good sample. So I am going to get a foundation one test. I think that is it. Phew! What a day! I am going to call my optometrist in the morning and see what’s up with the eye
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Holly, overall that is good news that your head scan is all clear! Good for you to get a foundation one test. I am close to Seattle and we are on a "winter weather watch" for the next few days. I am ready! I made carnitas tonight and have lots of leftovers! I love the Gorge and White Salmon. Plan on visiting friends in White Salmon as soon as Covid quiets down and my husband and I feel like it's time to take a short road trip!
Everyone, thanks for the condolences about my Bella. It is such a shock, I thought we had a bit more time! We are focusing on loving our 8 year old lab, Wilson who also is missing Bella.
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Tanya, spookiesmom - thanks for sharing what helps for you. I am signed up for a zoom mtg on medical marijuana tomorrow for cancer patients and hope they get to the best products. Trying to figure which is best, from THC amounts to CBD, to the terpines, to tincture or rso, or other avenues of using it, and when one product costs $50 To $100, it would be nice to get what really works.
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Holly, I'm so thankful nothing was in your head! Seems like it was this time last year I had that scare about my brain. You may remember my "French Foreign Lesion" which turned out to be a tiny place on my skull that radiation destroyed. I look forward to your radiation handling the other things and I'm glad you don't have to do that weird (though not terrible) mask!
Love from PatGMcGlad
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pat - YES! I remember your French Foreign lesion!
Spoke to the radiologist this morning. We are a go for L5 and humerus with 3-5 treatments of sbrt. We are also going to radiate the mass near my first rib. I have been diagnosed with Horner’s Syndrome. The radiologist was quick to diagnosis along with her resident when I told her why I went in for the head/neck CT. So that will be 10 low doses of radiation since I have been radiated there previously. Moving forward. Yay
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I have a lot of thread reading to catch up on-it’s been a while.
Always cheering you ladies on with good scans! Congrats to everyone with good news!!
I know JFL is not on this thread but hoping and praying Enhurtu continues to work and that insurance PAYS for it.
I’m sorry to those that have had progression, BevJen-I hope Keytruda does wonders and is a breeze. Cure-ious, I’m sorry you have had progression as well- I’m in the same boat.
My lungs are stable but I have some new spots in my bones. T8 is small-we will watch, L4 is already heavily treated just shows additional loss in vertebral height, sacrum is active but I’ve already had radiation there. L2 is new and this spot I will have cyberknife on at Hopkins at the end of this month.
My plan was to radiate and stay on ibrance just like you did Cure-ious. How many spots did you do?
My MO was on board but now thinks we should do Faslodex Verenzio or Faslodex Piqray. He’s leaning towards FV combo.
I couldn’t get in with my Hopkins 2nd opinion dr but she did email me and say she recommends Faslodex Piqray.
I should have my foundation 1 liquid biopsy back by 2/16. The lab made a mistake on 1/22 so I had to do it again last week.
I’m open to any suggestions. I don’t know if I should try to get on a clinical trial, try one of these combos or try to stay on ibrance longer
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Hi NovsGirl!! Well, I had slight progression in bones at 3.5 years, and we radiated a broad area of hip that was just getting darker with each scan, and a new spot in the spine..Now its different, the progression is more extensive, and there are more meds coming along for endocrine therapy, so I want to mix it up and radiating more is not a feasible or attractive option at this point.
So, what to do? Verzenio-Faslodex would be a good option. My Mo is suggesting keeping the Ibrance and switching to Faslodex. If that could work, it would save Verzenio for any future endocring therapy in a clinical trial.
But first I'm still waiting for Foundation One, how freaking long is this test? they could have sequenced the whole dang tumor genome by now, easily! The main reason is to learn if the cancer has developed an ESR1 mutation, where the estrogen receptor is active without estrogen, because those do not respond as well to Faslodex (depends on the specific mutation, as Y537S is not degraded by Faslodex, for example) and in that case I would try to get into a trial, either lasofoxifene-Verzenio or some kind of Verzenio- SERD trial. If that mutation gets cleared away, then it may be possible to go onto some kind of other endocrine therapy.
The thing with the ESR1 mutation is it can pop up at any point when you are on AI or Faslodex, and they have the blood test to monitor it, some are suggesting it should be followed periodically so we know when resistance is building up and cqn get it right away. Do you know if you have the PI3K mutation? or why would they suggest Piqray
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Hi Novagirl and Cure-ious, I was in a similar situation in October 2020, two new mets appeared on my T9 and T12 vertebra. Previously had one on T10 that was irradiated by cyber knife in 2019 and I was put on Kisqali and Faslodex. I also did Foundation One liquid biopsy and no meaningfull mutation came out. Probably not much cfDNA in my blood. I hope it will work for you Cure-ious and Novagirl. It took about three weeks for me to get results, but I am in Slovakia and the blood was sent to US. It found only germline mutations what I know I have. So I did SBRT to these new lesions. My MO put me on Verzenio and Femara after stereotaxy starting in December. It is very duable for me, and my neutrophils are much better than it was on Kisqali. I still dont know how the radiation worked, had mri last week and one lession in T9 seems little bigger but I had it also with previous cyber knife treatment of T10, so hopefully it is pseudoprogression. It is strange but after cyberknife radiation of T10 the SUV on Pet never went totaly down but was lower in more than half. They said it is healed though and it still goes little bit down with every PetCT. I hope it will be case again, will have PetCT in March. I also would like to know if I have ESR or Pik3 mutation but dont know how, if the liquid biopsy doesnt work, the bone lesion is not in good area for biopsy. There is trial of SAR (Sanofi SERD drug) with alpelisib or in monoterapy in Czech Republic I found
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Hey Cure-ious!! F1 is taking forever that’s for sure. They had a mistake at their lab that they never bothered to contact me about. I had to do it all over again. They say my final report will be ready 2/16.
When I was originally diagnosed with MBC 2 years ago they did a biopsy from my lumbar spine at L4. F1 indicated I had a PIK3CA
Biomarker Findings from F1 back then:
Microsatellite status - MS-Stable
Tumor Mutational Burden - TMB-Low (0 Muts/Mb)
Genomic Findings:
AKT3 amplification
PIK3CA H1047R
FGFR1 amplification
MDM2 amplification
MYC amplification
CDH1 splice site 2296-1G>A
MYCL1 amplification
NSD3 (WHSC1L1) amplification
RAD21 amplification
ZNF703 amplification
3 Disease relevant genes with no reportable alterations: ERBB2, BRCA1,BRCA2
I’m with you- if I have an ESR1 mutation I’d like to address that. I also wonder if F1 tests for Androgen receptors.He mentioned staying on ibrance but starting Faslodex. I like the idea of keeping Verenzio for further down the road.
Maaaki-that’s interesting your F1 showed nothing. I heard from someone else on this board the F1 didn’t show their Errb mutation. I’m glad femara and Verenzio are working for you. It seems like the bones are so hard to read after healing and treatment. My one radiologist said the bone scans were almost pointless unless there is a new spot that hasn’t been there before that pops up.
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Novagirl, no androgen receptor status is not on Foundation One, since it detects the mutations in genes. Androgen receptors similarly like estrogen receptors can be done by histological analysis of the original tumor or metastatis.
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Thanks Maaki. I don’t think I remember seeing this on my original tumor analysis. I’ll have to dig that up
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They may not do it for basic histology. I had this result from some additional molecular analyses done in one private lab-not generally used, told to my MO and she ordered it at pathology department in the hospital where I am treated, they confirmed high positivity 99%.
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KarRGB - browse the marijuana forums and threads and post questions. There are lots of brands, formulations, mix CBD/THC. I am getting ready to try it again for sleep/anxiety. Tried a few several years ago, nothing really helped, including one style of CBD/THC drop that a friend really liked. I have to make a 3 hour RT to get anything, iso need to do little research. Don't epect it to cure, but if I felt less stressed and slept the night through, I think it would help a lot. If I am feeling better, I think I have a better chance overall.
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KarRGB - I have a U shaped body pillow which does help with side sleeping, sometimes. Thinking it is time to replace it since filler is getting pinched in some places. It takes up a lot of room, especially when partner, dog, and cat are also on the bed. I recently purchased a bioposture matress which I really like. They have the option to get one without fire reatardant if you have a signed note from DR. I have seen several articles on pillows, what to get for back, side, stomach sleeper. https://blog.myfitnesspal.com/the-right-pillow-cou...
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On this snowy and extremely cold day I thought I'd take a minute to warm you up with lovely news.
I heard from my friend, Julie, today as she celebrates 23 years since her breast cancer metastasized!
Let's all plan on having Anniversary Twenty-three too.
If it can happen for Julie it can happen for you! (free Valentine poem)
Love and Happy After-Valentine's Day to all the Dancers of all the drugs,
PatGMc
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That kind of hope is the BEST!!!, Thanks, Pat!!
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BlueGirlRed -Thanks for links for pillows, still working on researching mattress or adjustable bed, but meantime ordered a full body pillow
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Pat,
Thanks for the very uplifting news. And Happy after Valentine's Day to you!
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Cure-ious -Did you get your F1 liquid results? I called as soon as they opened and had them email them to me. It seems like a bust. They found my PIK3CA again but nothing else was detected. They found much more on my original tumor biopsy in 2019.
Pat, that’s awesome news that you have a friend celebrating 23 years!! I pray we get a combination of meds that will keep us all on this earth for the long haul and that I will be here to raise my little boy.
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Pat
Thanks for sharing the great news and beautiful heart-warming wish/poem ❤️ really lifting up my day!0 -
Wow Pat...that's amazing! Thank you for sharing!
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Pat - do you or your long haul friends have any tips for managing the anxiety or anger that comes with MBC? Lately I keep feeling like another shoe is going to drop because everything has been so out of left field throughout all of this. Mindfullness and staying in the now was working and now... its just not. How do they keep going even though they've been hauling for so so long?
(BTW thank you for the last piece of art, I love love love the colors on it!)
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Sondra- I agree. I am over 3 years MBC, and on first line therapy. I feel like when is the other shoe dropping. When is progression. What will it look like with me. I want to live a long time, but how do you get past the what ifs when you are a long hauler??? This is torture-- the unknown.
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Hello Candy and Pat,
I have been on Ibrance 100mls for 4 years now in combination with Exemestane treatment for Stage IV Mets to the lungs. This morning I was exercising an experienced a horrid headache. I am not sure what the next line of treatment will be and have begun to search online. I do want to prolong my life as long as possible.
Juel
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My friends, I wish I had the gift of telling you how to let go of the fear that comes with this. I'm grateful for the 27 years I've had since I first thought I would die from BC. I remember sitting in the office of the radiologist who told me I most likely had breast cancer and these words formed in my head, "There's something for you to learn here that you can't learn any other way." That has proven to be true over and over.
I've probably met thousands of survivors over the years through running the support center, leading support groups and workshops. I've tried to listen carefully to what carried people through and the main thing seemed to be looking for the laughter. It seems that flipping the experience over and finding the funny side makes it easier not to leap into future potential horrors!
Today is so much better when I don't do what my mother called "borrowing trouble". I've never cared for someone telling me I'll be okay if I just "maintain a positive attitude" because that lays a heaping helping of responsibility on a person's shoulders. Refusing to borrow trouble from tomorrow seems more do-able.
Since I know laughter not only is a diversion, taking me out of the pain of the moment, but also has the power to change me chemically, I try to do it even if it's the fake laughter of Laughter Yoga. (Google it and you'll find lots of trainers on Youtube.)
I also have found it helpful to give my friends and family permission to laugh about my circumstances. It helps them to behave the way they always have, not worrying that they'll say the wrong thing.
One friend in support group made a comment I love, "One day you're going to die from something but that day is not today. Don't start dying off schedule!"
I have friends who thought they would have been gone long ago. Some have taken various kinds of treatment off and on for decades. Others have been what we would call "cured" for those same decades. People who have had everything from MBC in the bones to the brain, liver and lungs are still with us after many years.
What seemed to cause people I met to struggle the most was the prospect of leaving their children, whatever their ages. I love that Julie not only survived harsh chemo in her third trimester of pregnancy but has lived to see her daughter about to graduate from the University of Texas, preparing for medical school. Judy's son, who was two when her MBC showed up, graduated and became a video game designer. Luane, who adopted Rachel a couple of years after the bone mets showed up has seen her graduate HS and start college.
I'm rambling here but I've found a prayerful life calms me and a life of laughter sustains me. Seeking out stories about people who have survived this disease fills me with hope. Your stories do that for me!
So I'll be down here in Memphis where it's (wonder of wonders) 14 degrees praying for all of you, hoping you'll find something that helps you make it joyfully through this next day.
Love from PatGMcWordy
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Pat,
I just love your posts. You are so inspirational. Thank you for starting my day on a positive note.
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PatGMcWordy 😊, I love your posts too. Just calmly telling us the things that helped you and those you know. Wonderful
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Thank you PatgMc for your lovely words. You are so uplifting. And you have such a good attitude. Keep giving us your good thoughts.
I too try to find the good in every day. The sunshine. The pretty snow-- even though too much of it. A good movie. A good phone conversation with a friend. But the thoughts of progression, the future, are always there. I have had MBC for 3 years and I have had some good moments, good days, but MBC is part of my everyday. The meds--and the side effects of those meds, the scan and bloodwork schedule, the insurance issues. It is a full time job. No truly getting away from it. And even though I want to live a long time, be a long hauler, it is so tiring to keep up that full time schedule. The stress-- and as Sondra said the anxiety and anger-- works on you over time. And Yes the fear of the future.
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Patgmc,,, wow. These are true words of hope and inspiration. It truly gives me hope. I’m no longer part of the Ibrance family. I was only on it for about 3 weeks and moved on to Verzenio,, but this thread is still on my favorites and I just had to comment.
Novagirl,,, I read your signature line. You will see your baby grow up. I feel the same way. My kids are 17 & 6. I want to see my son grow n do the college thing and I want to see my daughter grow up too. Back in November i was very sick. Getting blood transfusions i didn’t think I was gonna make it. I broke down with my MO and told him I’m scared I won’t see my son graduate high school, he graduates this year, my MO said don’t worry your definitely going to see him graduate. It gave me hope. Now I’m feeling so much better and can’t wait to see him graduate. hugs e
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Thank you PatGMc for your fantastic post. I love laughter, and I remember how terrified I was at first but now I'm surprised and delighted to still be able to laugh freely! Thank you for the inspiration.
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