Ibrance (Palbociclib)
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Hi all -
RRabbit - 2 year cancerversary is something to celebrate, I am so very sorry about the pain you continue to have. I admire you and your wit SO MUCH! Happy to hear about your new wheels, too.
Candy and Jackie -you have both been in my thoughts and prayers - waiting for new orders is nerve wracking, especially when you are hospitalized unexpectedly like Candy and Jackie, when you have severe pain. This journey we are on is hateful.
Ruthie3 - your post of fantastic news came at a wonderful time. Big congratulations to you with the NED status, and 14 years at stage IV! Gives me much needed hope. I took letrozole for 6 years with my stage 1 dx and had joint pain (in my hands). More than with faslodex but the monthly shots are no picnic either.....
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Thank you so much April. I truly appreciate your concern. Been running occasional low grade temps too.
Ruthie...that's wonderful news!
Miss Rabbit...congratulations to you!
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Jackie and Candy, still in your pockets as you wait/figure out next steps. Hoping pain lessens for you Jackie, I'm dealing with pain issues too.
Aprilgirl- new wheels are pretty neat I have to say, I got one in black to go with any wardrobe...color coordinating wheels
Newbies, good advise above on tips etc with dealing with symptoms. If 125mg is too much, ask to go down. Many on here have gotten many cycles at 100 and 75mg. Marathon, not sprint, treatment is supposed to help you feel better for longer not the reverse.
RK, good to see you checkin! Pool party at your house! Swimming will feel wonderful on your body and your bones. Jealous!
MO appointment went ok. Disagreement about pain cause. Wants to send me to ortho. I've declined. Wouldn't be able to get an appt for 5 months anyways, pointless. MO wanted to send me for scans already for June. I asked to put off 1 more month. Need to think about some things. Ibrance got delivered to wrong house yesterday. Was in the middle of trying to retrieve/gather info when I had to leave for MO appt. I did end up getting my Ibrance after a lot of headache. This UPS driver truly went above and beyond to help after his rather big mistake but feel I shaved off a few months of life due to the stress in the process. 5th time in the 18 months I've been taking Ibrance they have delivered to wrong place, or in some cases, in winter refused to deliver. #stage4problems
Cure-ious, how are your plants looking outside, particularly the succulents? My beloved added another mini one to our window display a few weeks ago. I saw an ad for a dress with succulents on it recently. If they have my size, I'll have the ultimate in succulent flair. Tempting.
I feel like singing "Holiday....Celebrate.." in the style of The Wedding Singer in regards to my cancer anniversary....its such a bittersweet thing in a way. Happy for the extra time, but also dreading the future crap piles ahead. Kinda like screaming "Yay!!!" then letting your face fall to a flattened face of annoyance and utter lack of joy remembering all the appointments etc that are just down the pike...every time i go on the oncology floor I think "Boy am I glad to be back here, I couldn't go an entire month without thinking to myself, I'd love having a newly graduated tech butcher my arm today". Cheers all around ladies...things like this are what wine coolers are for...bottoms up!
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I’m so happy I can barely think straight. Got scan results today, ALL CLEAR. He thinks it was stress about DH going into hospice. Said my numbers were back to normal.
THEN
this little boy joined our family
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Rabbit, Happy Anniversary and in the interest of your quality of life, here are a few things I've done that have helped.
Upon learning of the bone mets I booked an appointment with an oncology orthopedist myself. I explained that I was anxious and needed to see him right away so he offered to stay late one evening. Knowing he's there if I need him (even though I don't see him regularly) makes me happy.
Regarding the lab techs, I don't leave that up to chance. Once I zeroed in on the most qualified and compassionate one, I started requesting her by name when checking in. Sometimes I slip her a little money gift so she knows I appreciate her making sure she isn't at lunch or on break when I come. (We all need to feel appreciated and those folks know that no one is glad to see them!)
Love from PatGMc
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Thanks for the advice Snow Drop, and Tanya, I will ask MO if ok to take Benadryl. The rash has become less itchy but still present.
Candy and Jackie - hoping for some relief and good news for you both soon.
Ruthie - congratulations, very happy for you and hoping to receive the same news one day for myself and everyone else on this ride!
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Congratulations on your anniversary,Rabbit.....and on the good news for Ruthie3 and Spookiesmom (and what an adorable kitten!).
Candy and Jackie, thinking of you as you await new orders, and hoping they work.
I'm apprehensive....got a call from Oral Chemo nurse (also handles any oral cancer drugs) that there will be an alteration in my treatment because of recent blood numbers. Did not manage to call back at a time she could talk and was very busy with work myself so will need to see what the plan is tomorrow. But I did get some of the blood test results and I can see why they are concerned, so am I. Neutrophil count went from .42 to .40 during my week off. I'm worried this is partly because they started me on Ibrance too soon after my radiation, from which my blood counts had already taken a hit. I gathered from others here that doctors thought it wise to wait longer in between....should I be questioning this?
Anyway, looks like I am in for a dosage reduction at the very least, so I'm glad to hear many have done ok on .75 or 100. I feel ok but do worry about catching something. Also....while I'm whining, sorry....had a discouraging talk with RO as a month follow up from rads. Asked him about kyphoplasty that spine doctor suggested to address most recent vertebral fracture. He said check it out but don't expect too much, may or may not help pain and "your back will gradually deteriorate because of the disease." Sigh. I was hoping treatment would at least give me a year or two of still walking and hiking.
But, there are good things too, have gotten some recognition at work for projects I've taken on that have not been so respected in the past. So, look on the bright side, I guess.
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Prairiesea - with those numbers you should absolutely be taking a extra week off and definitely be talking dose reduction. If the nurse also brings up the possibility of the MO switching you to a different CDK 4/6 do not be alarmed by that either as those (Kisqali mainly) have the same cancer management impact as Ibrance but with less of the neutrophil impact.
And definitely be speaking to the spine surgeon. The ROs don't know what the surgeons can do down there and he may have other suggestions. I know we have a few ladies who had complete vertebrae removed and titanium cages put in (super drastic but needed at the time), but I would share with him your lifestyle desires and what you want to achieve and ask how to best do that with how your spine is presenting and in the future.
(and I hear you about the work recognition. Like oh NOW you notice? I think its my "ive got bigger crap to worry about than you will likely ever have to deal with" face lately)
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Spookies - looks like what our 12 lb heifer when she was a baby! She was so small you could fit her in the palm of your hand and she needed a step stool to get on the bed. Now she rules the house,garden (and most of the neighborhood, lets be frank) with an iron paw, but is always by my side when I am not well - how she knows I don't know.
What a cuddly bundle of fur though - I hope she/he brings you so much kitten joy!
(and congrats on those clear scans!)
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Spookiesmom I am so glad that you have had some good news you deserve a break after all that you have been through. What a sweet kitten - he will bring you great joy.
Prairiesea definitely request a lower dose although it can take a cycle or two for ones body to get used to these meds. I started out, over 4.5 years ago, on 125mg and did ok. However when I requested a lower dose (just because I could) the Onc agreed immediately and said that everyone should be on100mg. I have scans on 24th and I really hope that I remain stable and can continue on I/L.0 -
prairiesea - I wanted to let you know that I’m finishing up cycle 15 on Sunday and 11 of those cycles have been on 75. 😁 At the higher doses, after only taking 14 pills, I had to take a 14 day break for my first 4 cycles and yes, my numbers went lower after 7 days rest. It was unnerving but trust that your body will adjust and they will find the right dose for you. And I agree with Sondra - see a spine doctor. Good luck to you!
Spookie - stress can do strange things to our bodies. I’m thrilled for you! You too Ruthie!
I’m on my 2.5 hour journey to Moffitt - my last Florida visit before I head north for 3 months. Gosh, I wish I could find a good MO closer.
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Spookiesmom- Woohoo on the clear scans!!!! And I LOVE your new baby!!! I am a cat person. My "boy" is 10 years old. Kind of wish I could have a baby again, but he would not stand for it. This is HIS house.
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Great news Ruthie! Have been on Letrozole for 3 months. Until last week really no SE. Am now much more fatigued. But it does seem do be working since one of my markers has gone down drastically and is now in the standard range
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Hello everyone, I've been reading along and thinking of you all. Rabbit, I sang along in my mind "holiday....celebrate...." a la sad Adam Sandler when I read your post. And congrats on the scan, Spookiesmom (and the kitty)!
Refresh my memory, are most people's ANC around 1.0 when starting their next cycle? Mine is ever so slightly above that this morning, I think I was expecting it to be higher after a week off Ibrance. Starting my third cycle at 75mg tonight, my MO still wants me to have weekly blood draws so we can keep an eye on things - at least the phlebotomists have been lovely and kind lately!
Thank you SondraF for the reminder that there are other CPK meds to try if it turns out my body just can't tolerate this one. I think I put all my hopes into this Ibrance basket...
It's my day off work, am going outside to check on my seven new english lavender plants, and fantasize about sitting in the adirondack in the sun with a great book this summer, with bees drunk on lavender flowers bumping into me.
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SF Cakes - your fantasy sounds lovely. But since I’m allergic to bees, my fantasy will include drunk hummingbirds.
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Cross posting---
Change of plans for now--- I was to see my MO Monday to discuss the liver biopsy/ Tempus results. I called Tempus this morning--- report not done and will not be done until mid week next week. So I messaged MO nurse. Cancelled Monday's MO appt and will do a televisit when Tempus results released.
Next scans due in June anyway--- no date set yet. But just feeling anxious-- if things are changing and we are slow to respond and change treatments and allowing the cancer to possibly grow.
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Thanks so much for your responses and wisdom SondraF, Chico, and RK2020. This is all helpful. Finally heard from the nurse today....another week off Ibrance and then more blood work and an Ibrance dose reduction to 100. Seems reasonable and worth a try.
And yes, Sondra, the work distinction felt pretty much like you say. I did craft a gracious acceptance, showed it to DH to make sure it sounded ok, and he said, sure, unless you just want to say, "it's about time."
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prairiesea, sorry you've hit a bump in the road. We started about the same time, so I'm following your progress. I do plan to talk to my onc about a possible lower dose after reading many of the threads here. I have so much to learn about treatment!
Spookiesmom, congrats on your good news & the sweet little tuxedo kitten. I have the large version of him - 22 years old!
Candy & Jacksie, hope you get some good news soon
Rabbit -"a marathon, not a sprint" - I like that
Ruthie, wonderful news, congrats
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Spookie - congrats lady on the clear scans! Woo hoo! Give that precious little one smooches from all of us!
Pat- thank you for your suggestions. Unfortunately pulling the cancer card, even pulling the Stage IV card doesn't help in bumping up appointments. First come, first serve and its worse because of covid protocols now. Every tech or nurse pretty much that had seniority was fired and a fresh crop of cheap labor was brought in during and post covid where I am treated- I live in a severe lockdown state. My tech is different every time now when pre covid i knew everyone. Now the only people i recognize are the oncologists. I have heard from a few others spread throughout the country the almighty dollar and convenience for the medical centers is raining supreme over care and convenience of cancer patients. One lady in Florida had to book 2 appointments to get a Zometa infusion that takes 15-30 mins depending on how fast/slow the infusion rate is standard for the center. 2 appointments, one for the bloodwork needed to get and the other the next day for the infusion. Can bill more that way. Unbelievable.
Prairie- I second the other ladies. If this procedure could give you that time you want to walk and hike, definitely enlist the help of that spine surgeon! Let us know how dose reduction goes, Kisqali and Verzenio are other cdk 4/6 you can try if Ibrance just doesn't agree with your counts and they work well too. Keep us posted
Cakes - hoping 75mg hangs in there for you. Maybe a 2 week break instead of 1 week between each cycle? Some ladies on here have had success with that.
Candy - still in your pocket. The Green Mile is one of my favorites too. Count of Monte Cristo with Jim Cavizel is another top 5 of mine. Such a sleeper, but really good.
pattay64- please excuse me for the late welcome. Nice to meet a fellow overachiever
Welcome to the thread Ladies, might be slow to come around and report/checkin for awhile. Beloved and I got a call this afternoon that his father is rapidly declining from the lewy body dementia he was diagnosed not long ago. Doctors say weeks now if not days. Beloved will take this hard for many reasons. I hope i can help him through this.
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Rabbit, it breaks my heart that you are receiving that kind of care. I'm even more grateful now for the kind and compassionate healthcare workers I see. I receive an email and a mail-in survey every month asking for specifics on care I received and from whom. I assumed this happened everywhere.
Have you written your thoughts down and sent them to the top administrators? You might change things in a big way if you do.
Love and a hug from PatGMcSqueakyWheel
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Rabbit, in cancer clinic I go, all lab technicians are freshmen, they are sent to cancer lab for their very first time, anytime Someone new draws my blood or injections, this time the tech told me I am her first patient ever, so ended up she couldn’t find a good vein, almost wrestled my R arm for blood for more than 10 minutes, I saw the blood in tube turned to jam-ish, still my arm is painful and bruised, then she tried L arm several times, and this is story of my 1/5 year/ 4-week visit. I do have 2 appointments for lab and injections, with couple of hours apart! The clinic says injections perform by specialist nurses (which means actual RN).
I missed some good news here, congratulations spooky and Ruthie.
Candy, telehealth is more convenient when you don’t have scans. less stress of long drive. Best wishes for upcoming results.
Jackie thinking of you hopefully you will get good plan very soon.
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Sad to hear that some are getting down graded care during these times. Cancer/cancer treatment can compromise veins, a problems made worse with inexperience in doing blood draws. Hope things start getting better.
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I’m not sure if you’ve already heard the news but I was dancing when I read this. I hope they can fast track this!
https://medicalxpress.com/news/2021-05-lasofoxifene-treatment-resistant-breast-cancer.html
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RK2020-Thanks for posting that article-very encouraging!
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RK, such an awesome news to read, I hope all goes well as the researchers explained. Thanks for sharing.
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I took 3 weeks off after my last 2 cycles of Ibrance (125 mg). The first time was suggested by my MO. The second time I delayed starting Ibrance to give myself time to recover from my Moderna rash (it's still not completely healed). My usually low blood counts are normal at day 7. My CA 15-3 still dropped from 80 to 58. Getting closer to normal!
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RK, that's pretty exciting!
Cure-ious, what do you think?
Yay for you, Serenity!
Love from PatGMc
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My liquid biopsy came back today indicating I have the PIK3CA gene so I will be starting Piqray once the insurance is sorted out. I will also be on Faslodex and Xgeva again. I will miss all of you here in this thread and I wish I could have stayed longer. Stay well my friends.
Love,
Jackie
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JACK5IE, don't be going anywhere! We're all in this together and we'll enjoy watching your success.
I'm praying that your side effects are few and that Piqray scares those cancer cells to death!
Love from PatGMc
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RK - thanks for posting.
Jackie - wishing you success with the new treatment. Kick the Big C's butt
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