Ibrance (Palbociclib)
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Hello, my sweet friends, thank you for being concerned about me. I'm touched by your thoughtfulness.
I just got home from a Radiation Oncologist appointment after a bit of a scare. My PET/CT report showed a lesion on my brain adjoining one on the skull. (Like a dummy, I pulled the report up on the patient portal and was quite frightened.) Fortunately, my dear oncologist called me and said he really felt like this was just bone involvement but he did think it would be wise to have an MRI for a better look and probably radiate it (hence the RadOnc appointment).
My family and I were plenty nervous as we awaited the MRI results but, with lots of prayer and reminders that God would see us through, we survived! It can be so easy to let your mind scoot down the darkest roads when something new pops up, can't it? I decided to focus on the friends I have who have survived a long time after brain mets and then I did what I do and researched survivors on the Internet. Thank goodness they're out there telling their stories!
May I say here that I hope you guys are putting your encouraging stories out there for scared people to see? Please go to all those sites for MBC and write a few words that can change everything for someone new who's scared.
About my PET/CT scans after 3 months on Lynparza: I had progression and wasn't surprised. I only stayed on the full dose for half that time. I got a terrible case of "the crud" and quit for a week, then only took a partial dose. My side effects were so life-limiting I knew that wasn't the drug for me even if it stopped the MBC cold. I know that some others have had almost no side effects (Here's looking at you, Holly!) and I'm so happy for them.
Anyway, we did the blood work for what I think was the Foundation One testing. I'll get this CyberKnife radiation thing behind me (3 treatments) and see the oncologist in mid-March to get a plan. I asked to wait for the CyberKnife until March 2 so I can see my granddaughter do a solo in her HS choir's Spring concert. I'm told fatigue is the only real side effect but I'm not going to risk missing my girl's performance. So, friends, I'm detoxing until then and feeling better and better. I haven't been nausea-free for more than a few days in 3 and a third years! Life is good!
Even when I'm not checking in here, please know I'm praying for all of you during my "bathtub prayers". It's just old naked me and the God of Heaven focusing on you.
Love from PatMcGlowIntheDark
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Thanks PatgMac for the update. Enjoy your granddaughters solo, hopefully feeling fresh and free of nausea.
Lovely people, thank you for celebrating with me.
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Wow Pat- you have had some scary moments. So to clarify, the brain area is bone involvement to skull OR brain mets? You are doing rad to bone OR brain? And how did PET catch it? I thought PET didn't go up high enough to see brain/head. Keep us updated. I keep sticky notes of upcoming MO appts and scans so I can watch for updates. You are in my prayers.
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Pat I'm so glad you checked in. I have the same questions Candy does. You are in my thoughts and prayers.
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Sorry I did all that writing and failed to make it clear that I don't have brain mets. I had a spot on the skull that showed up on PET/CT when I had the first bone mets in 2016. (My onc had that scan include my brain because I had unexplained vomiting. That turned out to be from taking too much supplemental Magnesium and the vomiting stopped when I quit the Magnesium.)
Anyway, because that little spot showed up my scans have included the brain. There had been no change in it until my last scan. It grew just enough to poke slightly into the fatty lining of the brain if I understand correctly. None of it is in the brain tissue and it is only assumed to be MBC because I have that. In a normally healthy person they would have biopsied to see if it was benign.
Have I confused everyone even more?
Love from PatGMc
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Whew Pat... but we still worry about you!
Things may be harder for you what with all the new drugs/ treatments. Please do keep us all in the loop... if you feel like it. You’re a trail blazer and an inspiration, but you’re also human and we don’t want you to feel under any pressure from the rest of us!
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Hi Pat!! Lovely to hear from you!! sounds like it may be time for a clinical trial,no? Maybe some fancy new SERD? Or the Pfizer CDK2,4,6 triple-inhibitor?
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Curious - Right now I'm not taking iBrance, but I have asked my MO about CDK2. Waiting on the results for PI3K.
BevJen - Thank you all for the advise on the Faslodex injections. My clinic actually tag teams the shots, a nurse on each side and the shots are done at the same time. A little tender in the injection sites, but so far so good. I did go for a long walk before heading home, but will try the ice pack too.
Candy-678 - I basically stood for the injections. I just leaned on a bed table that was all the way up.
IntoLight - that is fabulous that you're on cycle 46!! You go girl!
Cisci - Because I was bone only, I've always had CT and bone scans. I have always been concerned about my arm, but the bone scans picked up the area. As you mentioned, the CT scan does not. With bone, there is a staining on the bone that can take years to disappear. As a result, I've always been 'stable' but still visible. Some of my bone areas have been uncomfortable, but my arm never bothered me until last summer. I suspected there was some activity, but the bone scan came back with no change. I never expected something in my lungs. I have a PET scan on Friday so it will be interesting to see how much progression I have.
Denny10 - Great news!!
PatMG - WOW! You are in my thoughts and prayers.
One thing I noticed instantly after stopping I/L, was my joint pain has almost disappeared. Six years has taken it’s toll. I typically try to stand as much as possible because it was so painful to get up. I feel liberated even if for just a short period of time LOL. As PatMG commented, it’s nice to take a little break.
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Pat, you are in my prayers!!
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Pat, thank you for checking in and updating all of us. Enjoy your grand daughter's performance and I am so happy that you are feeling better with less nausea. I agree with you that it is so helpful to come on the Bc.org and see hopeful posts from those with similar situations. You will be in my prayers!
Denny - great news! Thanks for sharing.
RRabbit - still in your pocket, thinking of you. I think you had a scan yesterday? You are also in my prayers!
I have just completed cycle 3 of Ibrance - those of you that have been on Ibrance for years sure give me hope!
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Cure-ious,
Question about the CDK2/4/6 inhibitor -- is that a thing? Has it been approved? I just did a quick check and couldn't find much info on it. Thanks for any info you know.
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Pat,
So good to hear from you. As always, even with everything swirling around you, your message is uplifting for all. Your deep faith comes across so clearly.
I'm happy that you have a plan for the short term and then, in March you will move forward with your next treatment. In any event, good thoughts coming your way. And enjoy that concert!
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Just a quick checkin, all my scans are done. Bone was done Feb 14, my CT was on the 18th, they could only squeeze me in for a 3:15pm scan, so from bedtime til after 4pm all I had in me was a banana and a berry flavored barium "smoothie". I shuddered swallowing those things as bad as I would taking a dose of Robitussin cough syrup! Both scans went okay, have appt with MO today at 5pm to go over everything. Scared on multiple levels, and my gas gauge is always full lately, I sound like a yacht making its announcement that it's coming to port all the time, last thing I need to do is rattle the table with the paper on it while my MO is trying to explain to me my scans and why my tumor markers are up.
Thinking of all those waiting for scans/waiting for results and congrats for those still stable. I hope it is tumor flare causing the blip in tumor markers as poster suggested, MO hadn't mentioned it but we will see, Ibrance is tolerable for me, don't want to move on.
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I'm posting an update. It's impressive to read how so many women tolerate and do well on Ibrance. What a wonderful drug for so many and great to know it's extending progression free survival.
My experience shows the cdk 4/6 inhibitors don't seem to be for me. I progressed last year after four months of Ibrance/Aromasin. It was on to Verzenio and even tho I took a reduced dose of 100 mg twice a day, the side effects wiped me out. I tried to go six months with V but seeing the onc last week after at 5 1/2 months on V, she instructed me to stop taking it. I had lost weight, had severe nausea, shortness of breath, lightheadedness. I was anemic and dehydrated. Verzenio negatively affected my quality of life in many ways. My body could not adjust to the lowered red blood cells and I could barely leave the house, spending a lot of days on the sofa.
I get scans in two weeks and depending on results, will get a new treatment plan. It's been a week since I was off the Verzenio/Aromasin, and like you, Pat, and you, Lucky4Life, it's the first time in quite a few years my body is getting a break from the cancer meds. i thought I'd bounce back more quickly, but still have shortness of breath, no appetite, no stamina. I get bloodwork in a week and will be curious what it shows.
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RadagastRabbit -- Good luck on your scan result and best of luck to everyone currently experiencing scanxiety.
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Miss Rabbit...will be thinking of you at 5pm! Good luck!
Divine...I will be praying your new treatment plan is much better for you!
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congrats Denny and Candy!! Such wonderful news!! More breathing room!
Also missing Pat. Hoping she is okay!!! 💛💛💛
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Philly check above Pat wrote a few posts.
Divine thanks for the update sorry you’ve been having all those SE’s. Treatment takes its cumulative toll.
Rabbit a yacht coming in to shore is exactly the announcement. I tell DH it’s the medicine and he said he doesn’t believe it. Lol just old age or a combo I think.
lucky my Onc does the tag team faslodex shots when 2 nurses are available. I’m standing too. The main thing is that they warm them up and push slow.
Hopefully they’ll soon administer a pill or massage, date night dinner and bubble bath 🛀🏾 Or all of the above For the scanxiety.
Tanya
Take care all
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Pat...God bless and so glad that everything is ok in the brain area. Hopefully, you will get a plan soon. Rabbit...thinking of you and hope everything will be good. Lucky glad the shots were not too bad. Divine wishing you the best. Scans coming up for me in March...wishing everyone with scans the best results.0
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ooooh there you are Pat! Thank you Tanya!!
love and hugs to everyone
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Pat- Thanks for the clarification. Thank God not brain mets. You are in my prayers.
Cure-ious- As BevJen asked, has the triple inhibitor been approved yet? Name? Have not heard about this. How does one get on it? Test for mutation?
Rabbit- How did your MO appointment go?
Divine- In your pocket for your scans. March what?
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No FDA approval, and have not heard anything about how the trial is going. Drug name right now is just PF-06873600 (PF stands for Pfizer, who also make Ibrance). The drug blocks CDK2,4, and 6, and is designed to hit cells that have become resistant to Ibrance (which usually involves activating CDK2). The chemists have been working hard because the CDK4,6 inhibitor part is 100x and 10x stronger than Ibrance or Verzenio, respectively. The CDK2 inhibitor part is very strong also. Frisky was on this trial but had awful side effects, and dropped out- Pfizer subsequently significantly lowered the dosage.
Here is the trial:https://clinicaltrials.gov/ct2/show/NCT03519178
This "Super-Ibrance" drug is being tested alone and with Faslodex or Femara. It is also being tested alone for triple-negative breast cancers. Trial requires prior I/F plus 1 or 2 chemos in the metastatic setting.
It is offered at UCSF, UCLA, MD Anderson, Memorial Sloan Kettering and Sarah Cannon in Nashville.
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I am wondering if anyone has had this experience, I have only been on Ibrance for 2 cycles and My Ca 15-3 originally when DX was 63.5 in October, started Ibrance on Jan 2, 2020 and tested Jan 14th and it was 56.9, then had tested a couple days ago and it is 59.8. Do they markers go down after 2 cycles or does it take a longer time. My MO doesn’t think much of the small changes, Maybe my expectations were that it would go down and I am overthinking and worrying too much. I just want this Medicine to work as I have had no real SE. Any imput would be great!
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Well ladies, I’m here to report that my bone Mets show decreased focal uptake (less bright) and no further metastasis. I’ve been told to stay the course! MO said we will continue to watch TMs to see if they go down but she does not want to change treatment based on TMs but on my scans and how I feel. A small new ground glass nodule was noted in the right lung that’s just about half a centimeter but she looked at the imaging itself outside the reportand it looks like I didn’t get a good breathe in on the scan ( which is true, I was scared) and that might be why that showed up. Well, I’m still dancing ladies! Let the gas continue, bottoms up!!
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Imagine -- Probably too early to draw any definitive conclusions. My wife's MO is much more focused on scan results than TMs, and she also tends to ignore small changes. Good luck on future scans but recognize that even that might take a couple of scans to actually see results.
RadagastRabbit -- WooHoo! That's great news. Keep dancing!
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Rabbit, so happy to hear your good news. Keep dancing!
Pat, thank you for checking in. I am praying that the knife takes care of things and you find a more tolerable treatment. I have always appreciated your attitude and humor. Know you are on my daily prayer list.
Had onc appt today, and discussed that yes, I am still stable. That doesn't mean NEAD, just no growth fast enough to warrant a change. My bone mets show no activity but my liver shows possible node activity. She is very thorough with the other symptoms but nothing worth noting here other than I am having increased cramping in side muscles. She said it is noted in some Ibrance literature (muscle cramping.) Anyone else have this? And onward we dance!
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Congrats RadagastRabbit!
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IntoLight, re Side cramping....Yes, that’s me... no reason apart from possibly twisting or turning the wrong way. Very painful cramps and then they go and I’m fine. Was very worried about them but seems it’s just part of the thing. Good to hear it’s not just me
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Thanks Cure-ious for clarifying and for all the research you do. You are a wealth of information for us. I wish I had a mind like yours. I was wondering if this new triple-inhibitor may work for me, but I have not had any chemo in the metastatic setting, so I guess I would not qualify. Just find all the new research so exciting. If I can stay stable on I/L for longer maybe more new drugs will come and be the next game changer.
Imagine- My TM's - CA 27.29 and CA 15.3 have fluctuated 8-25 points over the last 2 1/2 years on Ibrance. They go up and down. My MO says they are not accurate for me since I had increase of TM's steadily over several months and PET showed no uptake. My last CA 15.3 was 43. CA 27.29 was 53.3.
Rabbit- Woohoo !!!!!!!!! Congrats.
IntoLight- Woohoo to you too !!!!!!
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Thank you!! Thank you!! While I’m relieved, you ladies know complete relief never comes, always on edge. My scans noted my Mets are mostly sclerotic osseous (sp). Is that healing? Can healing bone Mets hurt? Cuz I do hurt, all the time but no progression, does makes me wonder why I hurt so much. MM appt/pain specialist appt coming up in a few days. Thinking of you ladies waiting for scans/results.
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