Ibrance (Palbociclib)
Comments
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greetings from Milan!
Missing my MBC crew and also nice to have a little “cancer break" psychologically speaking. Although this disease is always with us no matter we go, mentally.
Jaycee sending you a hug (if you'd like one 😊) as you wade through the mishmash of this time period. I love the stalking, 😂 guilty over here too!
Jaycea so thrilled to hear your mets are responding to trx and you are able to orally take in food! Yippie!!
Denny - welcome! Really good to know about your experience with changing to Faslodex! I am on letrozole and finally succumbed to taking alleve in the morning and in the evening to help with the arthralgia aches and pains.
KelQ - I have heard people are very happy on Effexor. I am on a similar drug called Lexapro and not only has it cut my hot flashes down by like 75% but it has the added bonus of helping me with my depression and anxiety around all of this cancer business. I am soooo much happier on this medication and I take 10mg/day. I wish I had started it way sooner but glad I finally did. It brings me huge relief on many levels.
Trip has been incredible! A quick pic from Milan yesterday with some cool street art. Also a pic from the beautiful Mediterranean town called Portofino!
Love, Philly
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Hey all. Checking in on a rainy Sunday morning.
ichangedmyname-- Great pics!!!!! Glad you are having a good time.
Jaycee-- Thanks for "stalking" and keeping us up to date. We are all sisters here and it is nice to hear from all.
Jaylea-- Continued prayers for you. Glad you are eating some. And praying for more good news to come.
KelQ- Good to hear about Effexor. I heard it could help with hot flashes but I didn't know about helping with pain issues. I have not tried it yet.
So, I am starting my busy Sunday as I posted a couple of days back. Of course, as things go, I didn't sleep well last night. Horrid pain in back of neck, mid spine. Finally gave in and took a Flexeril pain pill I had around the house and got maybe 4 hours of sleep. DEFINATELY talking to doc this week. I am scheduled to see PCP on Tuesday for routine visit. Maybe Effexor? Maybe Lexapro? Something else for pain? The pain, emotions, fatigue all getting to me.
Well need to sign off for now to finish getting ready for church.
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changedname, your photos are beautiful & so are you!!!
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I changed the picture of you is gorgeous. I’m happy you got to travel to Milan!!!
Jaylee good to hear that your tx is making moves on that cancer. I use food for comfort at times so I can’t even imagine how... but I’m relieved to know that part is over.
KelQ I never heard about Effexor. It seems my onc is reluctant to give me anything else. I’m glad it’s helping you. I have similar symptoms that you and I changed describe. I’ll ask next time at the dr.
Everyone have a great Sunday.
Tanya
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Ichangedmyname , pleased to see you enjoying your 'little cancer break'. Portofino looks lovely and so do you.
candy-678 i hope you have a wonderful day, rest when you can
Can anyone help with advice about splitting flaking, nails. Mine now look as if I have been biting them for years and can be tender. I have tried OPI nail oil and other nail strengtheners, moisturisers/ hand creams. I have found a cream called POLYBALM ,that supposedly has had clinical trials, but I am reluctant to spend more money on something that does not work. Thanks.
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Denny...I'm assuming that you're already taking calcium citrate, magnesium citrate, vitamin d3 and vitamin K7. They work together to strengthen the bones...in addition I started taking Strontium which has to be taken at a different time from the calcium.
I had vertical ridges on my nails, that were so pronounced, I thought the nails would eventually crack....now all the ridges are gone and when I cut them they are not brittle and not soft....they're just as you would expect a healthy nail to be.
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Hey all,
I was wondering if a leveling off of the effects of ibrance/letrozole is common? Mom had her second set of scans and the oncologist said it looks good, but that things have stabilized. Her first scans were remarkable, and there wasn’t evidence of distant metastases anymore, but her primary tumor was still hanging around. It was large and she’s planning to have mastectomy surgery, but I was just troubled by the idea that the medicine has come to a standstill and that this might be a precursor to it losing efficacy.
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skyfly, she may still get some improvement with time, as oncologists have noticed evidence 2 or 3 years on that the scans can show incremental improvement, as the Ibrance helps the immune system to get rid of the cancer. It's more critical that she get the primary cancer out (a lumpectomy may be just as good if its possible, with less risk of lymphedema).
Only a very small fraction of the primary tumor consists of the dangerous cancer stem-like cells that are capable of seeding future metastases. So when treatment show the primary tumor has shrunk a lot, remember that most of those cells detected on the scans were not capable of forming mets anyway. The question is how many stem cells remain, especially because these can be much more resistant to killing by the drugs- we don't have a way to visualize them specifically, so its safer in the long run to get them out of there with surgery.
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The Metastatic Breast Cancer Access to Care Act was recently introduced in both the House (HR2178) and Senate (S. 1374). This legislation will waive the 24-month waiting period for Medicare benefits eligibility and the five-month waiting period for Social Security Disability Insurance (SSDI) benefits for individuals with MBC.
The current system is far too slow- watching and supporting these steps as they move through congress!
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Miaomix , thanks, i am not taking any of those supplements, despite asking all the experts. i think a shopping trip is required.
thanks, again for a fast response. this 'space' has the best people!
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thanks Cure-ious, your insights are deeply appreciated! So it seems that efficacy isn't like a seesaw? It’s not a matter of slowly going from strong response to weaker response and then progression but a complicated microenvironment with immune cells, malignant stem cells doing stuff I’m hoping she will have the surgery this summer—I forgot exactly why the surgeon suggested mastectomy after I asked but will double check with onco too, as lyphmedema seems difficult
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Intolight, I'm starting to slowly exhale. Tomorrow is so close yet so far. Hope you can sleep tonight. Do you have some pharmaceutical help with that? Thinking of you. As the mouths pass, it gets so much harder.
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Jaycee, no, I don't have anything extra for sleep although it is on my list of things to discuss with my MO. Usually a Benedryl helps but the last time I took one I didn't feel well that night so I am unsure if I should. Perhaps just some Tylenol. My appt is early tomorrow so at least I will be too busy in the morning to fret...
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Intolight, do you have any Phenergen? It's for nausea but it helps me to sleep. It also makes me feel blue so I don't take it often.
Jaycee and Jaylee, sending you each a hug.
Ichangedmyname, you look terrific. Traveling agrees with you!
To everyone having scans this week, may you have peace before and good results after.
Love from PatGMc
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Changedmyname, Those are fabulous pictures! I love them both, but especially you with the street art. You look very continental/stylish, as well as pretty, in the all black, and it’s great to have a face with a name. I hope you’re enjoying yourself there.
IntoLight, Adding best wishes for a great report tomorrow! I have scans later this week and appt. the following week so I’ll be playing the waiting game too.
To all, thanks for being here. I don’t usually have much to add because my knowledge is very basic, but I so appreciate the chance to learn. My first scans coming up have me trying to guess what I’ll hear. I have a lot of twinges (on my “good” side) that have me a bit paranoid.0 -
Rosie, anticipating that first scan will knock you to your knees! I feel for you. My best advice is to assume all will be good and that if anything is not, you and your doctors will find a new solution. Ibrance is not the only good thing going for MBC. I always think of all my friends who have lived long and well with MBC when Ibrance was just a gleam in a researcher's eye. Some of my friends have even lived well BEYOND MBC and are not on treatment of any kind. If it's possible for them, it's possible for any of us.
About the twinges: I've had twinges in the past that seemed to be getting worse as my scans approached. As soon as I got the scan results those twinges disappeared. They didn't feel like figments of my imagination but I suppose they were. I have one right now which I'm sure has NOTHING to do with my scans the first week in June....Ha! So I'm going to be praying for your "figments" and my "figments"....that they disappear into the air of the oncologist's office and we discover that we're not more sick, just more crazy!!
Love from PatGMc and her Figments
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Good to hear from you Jaylea! Delighted you are doing a wee bit better.
Quite like the fact that folk just check in.... and are not in here every single day..... I am unfortunately still in here every day.... until I'm either not, or I'm calm enough to just live for a while! Karen
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Philly, loved the pics! You inspired me to go back and look over some of my past pics from Italy, Florence, etc. I am thankful I was still well for that trip but you look wonderful now!
Pat, many twinges and figments come and go during this dance, but how to we express them to our oncs? I have no idea... I am learning to sit and wait to see if they pass--usually they do.
Wishing you all a well and restful week ahead no matter the appts, scans, etc.
Love, Chris
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Intolight, I keep most of the twinges and figments to myself. My oncologist is also my dear friend and he knows I'm a little whacko. When I mentioned a few months ago that there is sometimes a connection between my indigestion and a specific spot in my brain, asking if he had ever heard of that phenomenon, he just smiled and said, "No." I'm pretty sure he's wrong but I'm noticing it more as my scans approach! We look at my brain each time so it's all good.
The good news is that God lets me remember the friends who have had brain mets and still live well after treatment. I also know some who have died and I'm sure they're perfectly comfortable in Heaven. All will be well.
So let's do the Ibrance Dance.....Everybody twinge!.......Everybody figment!.....Now do-si-do! Twirl your partner round and round....(No, don't do that!)
Love from PatGMc
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Candy-678: So sorry about the pain keeping you from sleeping well. Have you heard about Osteocool radiotherapy. We're looking into it at Mayo for helping my Dad with spine Mets from prostate cancer. It Sounds like it can relieve pain and improve quality of life.
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Cure-ious, thanks for the explanation and links. VERY heartening. Seems immunotherapy is still our only shot at a lasting response. And prostrate is similar to BC less visible to the immune system..Hoping CDk12 is the game changer.
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Ibrance on vacation
Hello all, I am on second cycle of Ibrance/letrozole and feel pretty good. Which led my husband and I to think about me retiring soon (I'm 71) and doing some world travel for a few months at a time, staying at airbnbs. I'd come back every few months for visiting children, doctor visits, blood tests, scans etc. but would like to not be tethered too close to home.
I've heard sometimes an insurance company will allow patient to get an extra month of Ibrance if they will be traveling. Has anyone heard of getting more than one extra month? Any ideas how to keep the Ibrance flowing?
Happy travels and enjoy Italy!
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kitkit, good for you! Ask your oncologist or his nurse if they have Ibrance that has been turned in by patients who have changed treatment. He/she may also be able to get some from the Pfizer rep who calls on the cancer center.
Or perhaps someone here will Private Message you with an offer of some. Which strength are you taking?
Another thought.....your specialty pharmacy can take your order and FedEx the bottle to you. You should be able to get it most anywhere.
Love and Bon Voyage from PatGMc
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- Here are the times for presentations at ASCO. Nothing earth-shattering from the abstracts, but maybe we'll be pleasantly surprised by something (eternal optimist):
- Phase III MONALEESA-7 trial of premenopausal patients with HR+/HER2- advanced breast cancer (ABC) treated with endocrine therapy ± ribociclib: Overall survival (OS) results [Abstract # LBA1008; Oral presentation: Tuesday, June 4, 11:57 AM CDT]
- Interim results in the full population from CompLEEment-1, a phase 3b study of ribociclib and letrozole as first-line therapy for advanced breast cancer in an expanded population [Abstract #1041; Sunday, June 2, 8:00 AM CDT]
- Alpelisib (ALP) + endocrine therapy (ET) in patients with PIK3CA-mutated hormone-receptor positive (HR+), human epidermal growth factor-2-negative (HER2-) advanced breast cancer (ABC): First interim BYLieve results [Abstract #1040; Sunday, June 2, 8:00 AM CDT]
- Patient-reported outcomes (PROs) in patients with PIK3CA-mutated hormone receptor-positive (HR+), human epidermal growth factor receptor-2-negative (HER2-) advanced breast cancer (ABC) from SOLAR-1 [Abstract #1039; Sunday, June 2, 8:00 AM CDT]
- Alpelisib (ALP) + fulvestrant (FUL) in patients with PIK3CA-mutated hormone receptor-positive (HR+), human epidermal growth factor receptor-2-negative (HER2-) advanced breast cancer (ABC): SOLAR-1 results by therapy line and endocrine therapy resistance (ETR) [Abstract #1038; Sunday, June 2, 8:00 AM CDT]
- NATALEE: Phase 3 study of ribociclib (RIBO) + endocrine therapy (ET) as adjuvant treatment in hormone receptor-positive (HR+), human epidermal growth factor receptor 2-negative (HER2-) early breast cancer (EBC) [Abstract #TPS597; Sunday, June 2, 8:00 AM CDT]
- First-line ribociclib plus letrozole for postmenopausal women with hormone receptor-positive (HR+), HER2-negative (HER2-) advanced breast cancer (ABC): MONALEESA-2 long-term safety results [Abstract #1078; Sunday, June 2, 8:00 AM CDT]
- Continuous dosing ribociclib, everolimus, exemestane in HR+ and HER2- advanced breast cancer post-progression on a CDK4/6 inhibitor [Abstract #1016; Sunday, June 2, 8:00 AM CDT, Poster discussion: 11:15 AM CDT]
- In-depth gene expression analysis of premenopausal patients with HR+/HER2- advanced breast cancer (ABC) treated with ribociclib containing therapy in the Phase III MONALEESA-7 trial [Abstract #1018; Sunday, June 2, 11:15 AM CDT, Poster discussion: 11:30 AM CDT]
0 - Here are the times for presentations at ASCO. Nothing earth-shattering from the abstracts, but maybe we'll be pleasantly surprised by something (eternal optimist):
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Just popping in. I got to see my nephew graduate from High School yesterday. Long day with some pain, but well worth the exhaustion. His sister, my niece, will be the Class of 2025. I am praying I will be around to see her graduate.
Cure-ious --- Thanks for keeping us in the loop with all your research. I especially was interested in the proposal moving through the House/Senate concerning Disability. There should be a change so we can receive benefits faster for MBC. Hope it passes. If you hear the results, let us know. I didn't even know of the pending legislation.
elenas- No I have not heard of Osteocool radiotherapy. I will have to look into it.
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kitkit, it only took Pat three tries but she hit on the approach that works for me on number three. You can have the stuff delivered to any address. Just let the specialty pharmacy know. Some planning ahead is required but using airbnb's requires that anyway. Happy trails.
PS sending prescription meds in the mail by individuals (not pharmacies) is illegal. You probably won't get caught but it still make me nervous.
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I receive Ibrance directly from Pfizer. When traveling for 3 months, Pfizer delivered to the address I gave them. The only problem was the CVS Pharmacy..something about the pharmacy could not receive meds unless prescribed from there.
So the pharmacist personally signed for it, not on behalf of CVS..just being a friend It was a nice gesture.
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Cure-ious,
Can you explain to me why so much of the focus at ASCO seems to be on different combinations of hormonal therapy? I get the sense I’m being naive about how clinical therapy works. It seems like all the most promising breakthroughs are in immunotherapy, but all the research is still focused on the current paradigm. Why isn’t there more research about pulling immune cells out of a person and training them, or finding the most effective ones and growing them? Does it just take years to change gears?0 -
I received good news from my onc this morning regarding my latest scan. There is no progression and the tiny spots we have been watching are getting smaller! So for me the tumors ebb and flow...Today is my 3-year cancerversary with all three on Ibrance and we are doing a happy dance praising God and thanking you all for your prayers.
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Into Light, Great news! Enjoy breathing easy again 😊
PatgMc, thanks for your response to my scans and twinges comment! I feel better already, and am trying to resist this worrying business. Easier said than done.
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