Ibrance (Palbociclib)
Comments
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Asking for pocket duty as I have my very first PET scan tomorrow at noon (PDT). Insurance finally approved it. My follow up with MO is next week on Tuesday. I’ll have bloodwork and another Zometa infusion then. Last month’s bloodwork was something to cheer about because CEA markers went from 34.5 to 11. I haven’t been in “normal” CEA range (0-5) for more than two years, but decreasing that much in a month made me and hubby do a happy dance. I’m so glad I am getting a complete body scan. I’ve had a weird headache in the right rear of my scull for a few days. I will do another happy dance when the PET only has uptake in the original lesion area on my L1 vertebra. The RO warned me that not enough time had gone by since radiation, so uptake is likely in my original lesion.
Candy— hoping and praying you get the info you need sooner than later to make an informed decision.
Rabbit— I’m sorry you now have to deal with heart trouble on top of cancer. That sucks!
Cakes — sorry that the recent holiday was rough for you emotionally. We all grieve the “what could have been.” I am going to use the geese flying over my home excuse next time I rip a loud one!
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FGodmother, I'll be in your pocket for your scan! I'll bring a goose with me, sorry for the squawking...
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FGodmother, here for pocket duty for your first PET. With you during scanxiety and hopes for quick good results, stable mabel or regress regina!
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Fgodmother meant to let you know last night, I'm with you for your scans today. Noisy geese in here too.
Tanya
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Spookiesmom, hope you are okay with the hurricane so close to where you live. Hoping for no damage for you there.
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Been away working awhile....thanks KBL and Rabbit about the TM decline. Into my first cycle of 75 mg Ibrance....will check after two weeks to see where ANC is and if I have to stop to travel next week. Hoping effectiveness continues.
Sorry to hear about the heart problems, Rabbit, and the ongoing uncertainty about treatment, Candy. Wishing MBC could give you a rest from these concerns.
Thinking of you with your first PET Fgodmother.
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We slept through it. Dogs, cat, me. No damage to house, the leaky roof didn’t leak. Still a bit windy. Made landfall well north of me, I’m on the Gulf next to Clearwater. Thanks for thinking of me
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Dagnabbit rabbit. If it’s not one thing, it’s another. Hugs.
P.S. I totally get being tired of all the doctor visits. That is why I’m so lax seeing any other doctors beyond my cancer team. I just don’t have it in me.
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Cross posting with the Liver Met Thread------
Ok, my peeps, update coming on my situation.
I got a call from my MO just now. Posting while fresh in my mind. I was not put on the Liver Tumor Board agenda. But my MO called her colleagues that work with GI cancers and deal with liver cancers. There are 2 of these specialists in my cancer center---not at my satellite center, but the main campus.
SBRT is not an option for me. Y90 is. Or a liver resection. She did not mention the ablations--cryo, microwave, etc as being options.
We are going to set up a consult with an RO and I guess a surgeon to discuss--- risks/benefits, pros/cons. My MO really wants me to have a resection. I mentioned being on a blood thinner with the PE episode 2 months ago and my hesitancy of coming off thinners and having another clot. Also I mentioned living alone with no support system to take care of me after major surgery.
After I decide what, if any, local therapy I want, then we will discuss systemic treatments---maybe keeping me on I/L or changing it up some. Maybe Verzenio. Maybe an AI alone and off Ibrance---??!!. Maybe a PARP. We will decide later.
My MO said I have time to decide all this. I have to get on the RO schedule for a consult. Decide. Do the procedure, if I decide to do that. So, it sounds like my MO is not really in any hurry about all this. I wish I had her confidence that the small, steady increases the last 4 scans are really ok.
Thoughts??
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I just found out I have T12 metastasis, don’t know treatment plan yet. I do know getting IV fluids and slower infusion of Zometa won’t give you awful side effects. I had that the first time. I just joined, need to figure out how to navigate forum. Scared, but already feeling this will help (3rd time around)
Hugs and prayers Ann
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Candy, I’m so sorry everything is still so up in the air for you. I hope you can get whatever works and that somehow you can get some home health care if you need it after your surgery, should you choose to do it.
Annaanna01, I’m sorry you find yourself here, but I hope you find all the answers you need. Hugs.
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Candy, I think a resection sounds like a fine idea! Am I mistaken or doesn't liver tissue recreate itself? You seem to have lots of experts tuned into figuring out what will be best for you and you have lots of us praying for their wisdom. I'm also thinking you would get to stay in a hospital for a bit with the surgery as opposed to the Y90, no?
Annaanna(so tempted to add bo-banna), welcome to our little group! You'll find supportive folks here, many of us with a whole dance of metastasis up and down our bones for years! Our prayers will be with you as you battle that T12 with good medicines and good information.
Love to all of you as we capitalize on what's available to us and wait for the big cure that is surely coming!
PatGMc
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Candy, I wish I had some advice for you but all of this is over my head. Maybe after you meet with the surgeon and have all the pros and cons explained, you will be able to decide. When I was first diagnosed with spine mets the surgeon recommended surgery and I even had a date set. It apparently was shared with all the docs I had seen and everyone of them recommended against it as being too risky for my condition and age so it was easy for me to say no. I can send you thoughts and prayers that whatever your team decides is best for you.
Anna, welcome to our group and best wishes on finding a plan that works for you!
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Candy, I do think hearing the pros and cons from the surgeon and the RO is the best way forward, in order to help you decide - but can those consults happen soon? If you have Y90, does that rule out resection in the future? I like what Pat McG said staying in the hospital to recover and also what about home health to help you after you come home? If that's available to you through your health care plan. I just hope the doctors you'll be consulting with can give you some definitive reasons why they think one option is better than the other for YOU, and your specific needs.
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Thank you for your responses. I will have to meet with the docs and discuss all this (waiting to hear about consult appointments). And check with insurance on staying in the hospital longer, home care, etc. A lot to consider.
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Candy, I wish I was near you so I could help you... it is easy for someone who is not in your situation says do this or that. But I think it is good to start getting familiar yourself with terminology for both resection and y90, understanding procedures etc. so when you consult with your doctors have a good understanding of the whole process. When I discharged from hospital, a case manager from insurance let me know about some charities that send volunteers for help, like doing laundry, washing/ cleaning, grocery shopping, even reading books. Nowadays many people are out of jobs so finding helpers might be easier. I was thinking if your pastor can find some helpers for you. all the best for you always. (((Hugs)))
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Thanks Snow-drop. I will research, make a list of questions, and hear what the consults have to say for my case. But, they are going to have to do some pretty good convincing to get me to do local therapy, I am afraid. Right now, I am thinking tweak my meds.
And I may ask my MO for her first 3 choices in med options. She is throwing all options at me right now---- moving to a PARP, dropping the Ibrance and just using the AI, monotherapy of Verzenio, or not changing my meds at all. I need to pair down my choices, to, say, the top 3.
Seems Ibrance and an AI is easily the top choice for first line therapy. Going to second line is like a crap shoot. No one knows what comes next. Fun fun.
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Candy sorry you’re going through all of this. I don’t know what to say but I remember when you changed doctors so that you could get better care, options, treatment and it looks like that is working. There are so many experts on this site and others. I know they will share their knowledge, hope and encouragement. You are appreciated and valued here and I can just imagine that your congregation would love to support you through whatever treatment you choose.
Tany
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Candy – Which ever path you choose; I hope things work out for you. Cancer really sucks. Hugs
Rabbit – so sorry to hear about the heart issues. One day we will have drugs/treatment that only attacks the cancer, and not our bodies.
RK2020 – my oncologist has not mentioned verzenio or fulvestrant. She wants to see if Afinitor/Exemestane along with the recent radiation does the trick before moving on to something else. She has said that chemo would probably be her next choice if the cancer progresses. She said the AIs are basically the same, but some work better than others for some women and some cancers. This is the 3rd BC!! 2009 Left, lumpectomy/radiation/tamoxifen 5 years. 2016 Left again TC chemo (I rejected the "A"), bi-lateral (my choice), Anastrozole which I did not tolerate, switch to Arimidex. 2019 Right Axilla,Ibrance/Arimidex for 1 year. Late 2020 cancer becomes metastatic. 2021 Afinitor/Exemestane, radiation. All the cancers have been 80+ ER+, maybe 10% AR. No known mutations found in genetic testing, except PDL-1, I think. Keytruda mentioned for that, but it does not seem to have a good track record with BC, even though it works well for some other cancers.
Cure-ious - My oncologist has offered to refer me to any clinic for other opinions/testing. Maybe I should go for that. I did the CARIS test, which did not find anything, everything "indeterminant". But a footnote on the report stated that a "technical error" had occurred and that there wasn't enough sample for a second testing. I asked if they dropped the sample…… ,they said they did not drop it, and then basically refused to pay the bill.
Somebody posted about a clinical trial on a variation in the PET scan ( a different dye?) that was hoping to provide information on which (if any) of the hormonal drugs would be effective on ER+ cancers. Did I remember the post correctly? Any more information?
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Katrose- You posted you had a PET the end of June. What happened with that? I care.
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I see that I missed quite a few pages of this thread without knowing my “save as favorite” button for this thread was not on. Who knows why. Happy for those with good news, frustrated for those going through things. I have phantom sounds follow me around too. We actually have geese around us quite often but I think they’re the ones making outdoor sounds, lol. So do we think this issue comes from the Ibrance or the Letrozole? Not that I’m going to toss one out right now if they seem to be working.
Candy, I know you mentioned consult appointments on another thread and I’ll look back as to when. You sure know your systemic options. It makes a lot of sense to tinker with meds first the way you explain it.
I’m in a holding pattern for the summer with next scans in early September. I’ll be seeing endocrinologist in August who is watching me for parathyroid disease. High numbers but no real alarm from him at this point.
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rats, cats, bats right? Ah well, oddly enough I've been shrugging it off. Whatever I keep thinking. As long as limbs dont start popping off me I guess I'll be alright. Haven't mentioned anything to beloved, he doesn't need to know something else in me is going kaput or breaking down, he can't handle anything else.
In the chair on the 15th for Zometa, blood draw, appointment. Zometa goes to every 6 months now after this infusion at my request. MO is ok with my choice since I've had a bunch of Zometa over 2 yrs. Based on studies shes ok with me spacing out more. My goal is to avoid ONJ like the plague but avoid humpty dumpty ville.
Pocket duty for those who need it. Candy hope your out of limbo soon. Thinking of Jaycee and Jackie. Anyone seen BevJen around? Hoping shes doing well after all that surgery, tough cookie.
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Consult with RO on July 20---liver radiation or local treatments. Not heard from liver surgeon for consult with them--liver resection my MO wants me to have.
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Hi to all you Ibrance dancers! I'm still hanging in there and saw that Rabbit called me out.
I wish I could say that all was well, but my situation seems to get more complicated every day -- or maybe it's just that it's getting more complicated pharmacologically. Since my two surgeries in April (R hip complete replacement, L hip with rod inserted) I've had intermittent (and sometimes more) nausea, originally brought on, I think, by oxy-based painkillers. Got off those and went to three weeks of rehab. Got home but no systemic treatment.
Finally, I started radiation to both hips/femurs (2 weeks) and went on xeloda. Nausea again from the combo. So far I have basically tried almost every nausea class of drugs known to man. We think we have a winner now (actually 2) in combination with one in reserve. I am currently on my week off from xeloda and am starting neratinib later this week. If that works, then by next week I'll be on both xeloda and neratinib. We literally have to have a chart for meds, and it changes daily depending upon how I do on certain meds.
Anyway, it's been a lot. On the other hand, I'm still here. Right now my numbers, though elevated, are stable.
I wish all of you Ibrance dancers well, and I still check in here from time to time.
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I certainly did call you out BevJen!
So glad to see you pop in but good grief what you've been through, my goodness. I'm so glad the nausea is under much better control now. Life is just so much better when you don't feel like you have to hurl, ugh, I know. I'm hoping the new med combo gives you a nice long run and treats you well. Will you be doing hula hoop demonstrations for us with your new hips? 
Here's to less complication and more simplicity in cancerland. Good to see you 0 -
4 years. August would have been 4 years on IBrance and Faslodex. Then this happened.
You have to understand it's a little jarring because my last PET one year ago was this...
So how do you go from basically nothing to looking like a salvation on a scan in just one year? Honestly, I have so many questions and with my doc out of town til next Wed, I could really use yalls thoughts.
First, the whole part about marrow infiltrating. Would that be considered Mets, or leukemia? I get different answers on Dr Google. Secondly, anyone else have experience with this level of progression so quickly with docs having no idea? I have had pain for a while and the insurance company said no more pets only CT and bone scan. I had one in may that was just fine but insurance relented because of weight loss and pain and there we have the crazy PET.
Any thoughts are appreciated.
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Txgatata, I have it all over in my bone marrow, and it’s considered breast cancer. I’m sorry for the sudden change in just a year.
BevJen, I’m sorry you’re having a tough go with the nausea. It’s awful. A question on hip radiation. I have lots of pain in my hips and have been told I could get radiation. I have never had radiation, and I am hesitating because I don’t know what other issues it can cause. Can you let me know if it has caused any other issues to pop up for you. I hope you feel better soon.
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KBL - I had terrible pain in my hips before I had radiation - particularly in the sacrum and iliac bones. I am so thankful that I was given the opportunity for radiation (and I think it was just standard rads, nothing special because the mets are in such a large area). It was only 5 days of rads. After that, it took about 6 weeks and then I felt so much better. I still take daily pain meds, but I can do so many normal activities that I had previously had to stop. As for long-term effects or side effects down the road, I can't really say yet since I just had rads a little more than 3 months ago.
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KBL,
I don't know if it makes a difference, but my radiation was not for pain -- it was because they found cancer in each of my femurs. My understanding was that the radiation was to try to eliminate any remaining cancer cells after the two surgeries. On my R side, when the doc went in, he could actually look at the hip connection and he said he saw severe, extensive arthritis along with cancer cells (which had shown up on a CT). So that's why he pulled and replaced the whole hip. On the L side, there was a lesion with similar characteristics, but it wasn't as close to breaking, so he drove a "pin" (no relationship to what I'd call a pin -- it runs from hip to knee) right through the lesion, so he knew for sure there were cancer cells left behind.
My radiation was for 11 sessions, 10 on each side. It didn't hurt. It was uncomfortable because I had to lay still in a cast-like thing that they made so they would always hit me in the same place. I had no pain, no skin burning, nothing -- just the anxiety of doing it.
If you are doing it for pain, I hope others will weigh in on that point.
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BevJen, thank you for the info. If it won’t help my pain, I definitely won’t do it. I have no clue about radiation. I have it in my femurs as well, and my thighs have been bothering me lately too. I feel like I have growing pains, if you know what I mean. I can’t keep my legs still when I’m laying in bed before sleep. I’m glad you had no ill effects after.
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