Ibrance (Palbociclib)
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Karen, Xeloda has been a fantastic drug for many of my friends so I'm expecting just that for you!
Go get 'em, Dancer!
Love from PatGMc
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Well ladies, I have been tossed out of the dance. Oncologist says Ibrance/Arimidex not working and I am to quit both. She is hoping CARIS will suggest a targeted therapy. If it does not, I guess I am just screwed. PET shows it has spread through lymph all over. It is the fibrosis in the neck and the "rash" on chest. Fortunately, nothing in organs etc. I feel a sense of outrage. CTs did not pick up anything and even suggested some shrinkage. I think at every visit I asked about monitoring and evaluating treatment, and seems as if the CTs are it. So, ask questions and keep asking. Be the squeaky wheel. Ask about changes in general health. For me, I did notice a decrease in range of motion in the arm where the tumor was found in the axilla, and attributed it many other things, including just getting older. I'm sure if I had brought it up (before the rash) I would have been referred to a PT. She said treating for lymphedema (pump, compression garments) did not cause the spread. She also commented that I might be too sick for the raft/hike trip through the Grand Canyon in April when I said that treatment could not interfere with it. I refuse to be a victim, and will go. I wondering if I should adopt more healthy lifestyle changes, and cut meat out altogether( I do not eat much), as well as dairy( I eat a lot), cut out the sugar ( just made a batch of cookies a week ago), and no more alcohol (just bought some wine – although I went for 8 months without any). Advocacy – I don't know if a "cure" is out there, but I think better treatment/monitoring is.
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BlueGirlRedState-Sorry to hear your news. Pretty scary that none of that was picked up by the CT's. Hope that your next treatment can still be a targeted therapy. What a relief that it is not in your organs. Good for you for sticking to your Grand Canyon trip in April. I was supposed to go last spring-got canceled due to Covid but I still want to get there too. Best wishes as you move forward.
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Chicago - thank you for the well wishes. I also had this trip planned for last year that got cancelled because of Covid. How to advocate for better detection/treatment/monitoring? Sometimes i feel as if we are still in the dark ages.
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BlueGirl, I responded on other thread, main thing is to see if there is ESR1 mutation because you'd probably want to treat that specifically. Here are the trials I mentioned for that. Because the treatments are oral, and we live in Covid times, my MO suggested its worth reaching out to places where the trial is run, like MD Anderson, to see if they would accomodate more televisits and letting the local MO do some of the bloodwork. Surely there are other non-chemo options as well for your secondline, just let everyone know your trip dates are completely blocked off and surely they can work around that!!
Two trials for the ESR1 mutation:
https://www.onclive.com/view/elaine-2-trial-could-...
https://clinicaltrials.gov/ct2/show/NCT04432454
https://www.globenewswire.com/news-release/2020/12...
https://clinicaltrials.gov/ct2/show/NCT04072952
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At my last MO appt a few weeks ago, MO commented that my numbers (blood counts) were “in the dirt” again but since I wasn’t getting sick or feeling poorly it was ok. Not sure if she actually said ok. She doesn’t hold for the extr week like my previous MO did. So yesterday I had my pretesting for upcoming liver ablation on 2/22. I warned the nurse that she might be shocked at my lab results since I was mid Ibrance cycle and I run low even after a week off. Apparently she did have concerns because I had a few calls when I got home from another nurse. I was told to hold Ibrance 2 weeks before and recheck labs a couple days before the procedure. It makes sense and I hope my values can recover enough. I’m not sure what numbers they’re looking at in particular. Anyone happen to know? I hope I can get out of the dirt 🤞.
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Rosie,
I'm just spitballing here, but probably your neutrophils and your white blood cell count numbers -- my MO did have me hold Ibrance for all three of my ablations for at least 10 days, even though I never had to hold Ibrance during my time on it. I also waited a bit (up to a week, in one instance) to restart. Messes with your drug schedule, but it works out.
If it were me, I might call back the nurse who gave you the info and ask what specifically they are looking at -- just for your own information.
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Thanks, Bev. I did ask the nurse who called me, but she said she didn’t know. White count and neutrophils sound right, as they’re the ones that are consistently low for me, maybe others too? I have an MO appt on 2/16 so I’ll ask then
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Good day everyone. Had progression on my December scans, so I am moving from I/F to a clinical trial using Verzenio/Fulvestrant with and an infusion drug-copanlisib. I had 1.5 years and although I always had some side effects, none of them were crushing. Hoping all of you continue to do well!
Cheers, Moving
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Moving-Sorry to hear about your progression. Hope that the combo of Versenio/Fulvestrant and copanislib is very effective for you. I'll watch for your posts to see how the trial goes. Best wishes.
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Moving-
Great, a new trial!! Copanlisib is an alternative to Piqray, for PI3KCA mutant cancers, hope it works like a charm! Perhaps you could also post on Piqray thread so people can see there is an alternative- Best of Luck!!
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BlueRed - oh goodness! I am so sorry for your frustration. Good for you for speaking up. Cure-ious has a great suggestion for research trials. I hope you make it to the Grand Canyon and COVID does not mess it up again.
Moving - sorry for your progression. Great to hear that there is a new plan for you. Are the SE for the new drug about the same as Piqray?
Cure-ious - when do you start your new treatment?
I go in for my bone biopsy on 2/12. That should be a half day affair. Not looking forward to it. Doctor says if it comes back as ER+ again, he will add an AI or fulvestrant to my olaparib. So he is not following standard of care, but rather setting an individualized treatment plan for me. Should be interesting to see what my biopsy results come back as. Still waiting to hear back from IR. I want to get that scheduled ASAP.
Hope everyone has a good weekend.
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Hi SondraF,
So happy about your improvement! I think I had COVID-19 about a month ago, but the COVID-19 test came back negative. I told my MO about my symptoms and she thinks I had it too. I haven't had the vaccination yet, since I just started Piqray on Thursday and want to wait a month or so, so I know which symptoms are normal for Piqray and which are happening due to the vaccine. I wish you the best! Good luck on your upcoming GYN surgery. Be well.
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Yes Sondra... hope the gynae surgery goes smoothly!
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RK2020 checking in after a LONG hiatus. I read a few past posts - mostly good news but unfortunately some disappointing news too (most recently Moving and BlueGirl). Hang in there ladies. The road may be bumpy but you’ve got a support system via this forum that absolutely rocks. Together we can get through the thick and thin.
In January I had a PET that indicated T11 continues to progress. The next step was an MRI which showed a small area of concern on L1/2 as well. Since all other met locations are doing well, I’m going to treat my spine with radiation and continue on Fulvestrant/Ibrance/Zometa. Keep your fingers crossed that I get relief from my back pain. 🤞🏻
In January, the day before my monthly appointment at Moffitt, I got a call asking if I wanted the Covid vaccine. YES! Fist pump. I got tears in my eyes that I don’t have to wait. Feb 17 I’m scheduled for #2.
My life is guaranteed to be pretty hectic the next few months, so if you don’t hear from me, know that I think ofyou all often. HUGS. ❤️
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BluegirlRedstate- just wanted to comment on your Grand Canyon rafting trip. I went in 2013 after my year of treatment. We were mostly on a raft and there were some additional easy or hard hikes if you desired. The meals were all cooked by the staff. We did camp and there was a fireman type line up to load and unload the rafts every morning and evening. Some of the stuff was way too heavy for me to help much- but, there were plenty of others to do it. It was great and I hope you get to do it. There were mostly young people, but, a very elderly couple whose children did it with them to help them-mostly getting onto and off of the rafts and setting up their tent. At the end we helicoptered out and then flew a little prop plane back to the starting point
It was a great experience which we followed with a trip to the north rim. Amazing
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NKBlove your travel vacation story.
Take care all
Tany
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Need you ladies to put me in your back pocket. I am going in on Wed 2/10 for another CT scan. This time it is for my head and neck. Yesterday I noticed my eye lid was droopy as in ptosis and my pupils are different sizes. I sent a note to my MO along with pictures. He ordered CT scans. I know I am jumping to conclusions - but I am so scared right now. Thursday I have my first consult appt with the IR. Friday I have my bone biopsy. Ugh! My tummy is in knots.
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Holly, In your pocket for your scan Weds. It’s very nervewracking to wait to find out if something is going on. I hope the ct goes ok and that the report is all clear. Do you know when you’ll hear anything?
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Holly, I'll be praying and counting on this being nothing. Most of all I pray that you have peace knowing God has it in His hands.
Love from PatGMc
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Holly - I’ll be thinking of you tomorrow and hoping for the best possible outcome. Hugs.
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Hollyli1202,
Praying for you and wishing you good scans!
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Curious - thank you for the links on mutations and potential drugs/clinical trials. Still waiting for results of genetic panel.
Moving – sorry to hear that you progressed on Ibrance, and hope the new treatment knocks that beast back down. I am in the same boat. No organs (so far, fingers crossed!). Oncologist hopes that genetic profile might point to targeted therapy.
NKB – thank you for the well wishes and thoughts on the Grand Canyon raft trip. It is a combination raft/hike. Feel like I have the energy now, and hoping to stay that way. Your trip sounds a lot like the one I signed up for, motorized with hiking emphasized, 12 days including put-in/take-out.
Holly – hoping clean scans for you and that droopy eyelid is not an indication of something serious.
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Hollyi thank god you noticed your eyes and had the presence of mind to take a picture and send it to medical team. In your pocket fir support tomorrow. Prayers and hugs
Tanya
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Holly, in your pocket and praying for your scans tomorrow! Please let us know how it goes. Scananxiety is just awful and on here, we get it!
Movingsoccermom - sorry to hear about your progression. The trail sounds like a good one and I know some women that have done well for a while on F and Verzanio . Please keep us posted!
RK2020 - your plan sounds great and I hope the radiation kills off that met and relieves your pain.
BlueRed - hope you get your genetics info back stat and really hoping you go on that vacation! I took a raft trip down the Grand Canyon that was exactly like NKB described. It was amazing. It was 40 years ago as i was 16 but it was a blast.
Good news, had my oncologist appt yesterday and my blood work was quite good. This is my first completed cycle of 75 mg and my neutrophils were 1.4 on day 29. Best ever for the end of the week off.
Sad news, my beloved 12.5 year old lab died. She became suddenly ill late Friday afternoon and we had to put her to sleep within an hour as she was dying rapidly. Both my kids and my husband and I were near by (had to get my son off his work shift early) so we were able to snuggle her and say goodbye before she was put down. It all happened so fast. Bella became glued to me when I was so sick fall of 2019 leading up to my stage IV diagnosis. She has been a huge source of comfort to me and I know she knew I was very sick. She had some arthritis but was still quite active. We walk our dogs 2-3 miles a day which they love. We have another lab, who is a bit mopey as we are but I will tell you that with covid and all of us working from home, the dogs have had a wonderful year with lots of attention. It was a blessing that she didn't suffer long but she will be missed.
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Had my pet scan today, that I had put off for a few months due to COVID. Originally diagnosed with mets all thru pelvis, spine and up to shoulders. My regime of ibrance / tamoxifen has given me a reprieve as it is stable. I have a few questions for our group.
I have been on MS Contin for the pain, been able to cut back dosage, but not go off completely as pain gets too bad. The issue is my stomach does not like this drug, or most others. I do use some medical marijuana tinctures and creams that help somewhat, but if anyone has figured out how to deal with this pain, would love to hear.
I was also wondering if the bone mets ever get better and stop hurting. One nurse said imagine a coke can getting crushed, you can straighten it out, but it will always be damaged.
Last question tonight, because of pain, I have put a bunch of memory foam and regular pillows on top of my mattress - which is relatively new, that I sleep on the pillows. But is there any mattress, pillow, or topper that helps you and relieves some of the pressure on our bones while trying to sleep.
Any suggestions would be must appreciated
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Awwwwww April💔💔💔
I use a body pillow, goes from my arm pit to knees. Really helps.
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KarRgb I use CBN for daytime pain and sometimes a CBD and THC mixture 1:1. I take it in pill form. RSO at night. I use as needed. I also get acupuncture once a week. One day without meds and pain after acupuncture treatment. Then back to meds it varies. Yesterday I didn't take any meds during the day, that's rare. Also I don't like the intoxicating effect that's why I use the MM combos above. Hope this helps.
Tanya
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april, I'm so sorry about the loss of your beloved pup. It's heartbreaking, even if it's a small comfort that they didn't suffer. I'm glad your family could be there.
(((hugs)))
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April - sorry to hear about the loss of your dog, they are such a faithful companion.
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