Ibrance (Palbociclib)
Comments
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Here's the problem I see with agonizing over scans. Once you get through a scan(s), there are just more right around the corner. Three months go by in the blink of an eye. As soon as a scan is over, you need to get ramped up for the next one. Doesn't work for me. Took me four years to learn that. Don't waste your time worrying about something you can't control. I wish I had all the time I spent worrying back.
Iris, a lot of people have said reducing the dose does improve things to a degree, some more than others. I had diarrhea on 125 mg for one month. Went right to 75 mg. Diarrhea gone.
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I took a 2 month break from both, then dropped to 100. Constipation gone, constant nausea gone so far. Sleeping a bit better, but that could be it’s “winter” here. Haven’t noticed less fatigue.
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I follow this Thread all the time, but I don't always jump into the conversation.
Aprilgirl- Pocket duty for your PET and MO appt. Since you are on the 75mg and cannot go lower, and you still have ANC issues, I think you should mention the on 5 days/ off 2 days to your MO. It was posted on this Thread a while back about the San Antonio Conference notes about this dosing (they are published so your MO should be able to access and read about it). I have been on this dosing for 4 months now. My ANC is checked monthly, at the beginning of the next cycle. My ANC runs 800-900 (0.8-0.9). Still low, they want it above 1000 (1.0). But my MO is ok with the 800-900 and wants me to continue the 5/2 dosing.
Dutchiris and Aprilgirl- Side effects with 5/2 dosing..... I have not really seen any difference. The fatigue is still there, and about the same. Hot flashes and joint pain (AI use probably) is the same. Constipation is the same. Occasional nausea the same.
Heartburn issues- I have horrid heartburn. I use famotidine and still have issues. From Ibrance? Other GI issues? I have not seen a GI doc, so who knows. But, yeah, GERD is horrid.
Planning--- I go from scan to scan. I do not have much of a social life--- no travel, etc-- but I feel I "live" from scan to scan. I was explaining my stable status to someone after this latest scan and they said "So you have a 90 day reprieve". Yep. That is it in a nutshell. When will the cancer change? When will I go to the next treatment? And what will that be like? " The devil I know"--- I read someone posted that. So true.
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Hi all - thanks for your input! It is reassuring that I am not alone in this scan/thoughts situation.
Shetland, I agree - chasing those thoughts away! I did sign up for a 6 month virtual fitness challenge with friends and family members. 3 days in and doing well! My husband and I are talking about a trip to Europe this September (depends on covid) and we have a group of friends that are planning to attend the 2023 Rugby World cup in France - 2023 kind of made me pause, but...it will be a fantastic trip with really fun people. We are in the early stages of planning this one.
Jaycee - I completely agree with you. I don't think it's on my mind and then, here I am a week (or 5 days) prior to scan and it is there, a little dark cloud or whisper, in the back of my mind. I am working on chasing those dark moments away because truly we can't control this, as you said.
Dutchiris - I reduced to 100mg probably 6 months in and I would say that fatigue is a bit less but, at the same time my cancer caused symptoms went away completely which gave me a lot more energy. Also, I love your Avatar photo!
Candy - thank you for the pocket duty as well as 5/2 info. This is top on my list of topics for my oncologist. I think I have said this before but since I feel really good on Ibrance and have minimal side effects (hair loss, constipation are the top for me) I would like to stay the course. The devil we know, right?
Ok - enjoy the day Ibrancers! Thanks again for being here and your thoughts on my scananxiety.
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Planning - while you may need to adjust and tweek plans, make them. Do not let cancer rule your life. Covid threw a wrench into the plans to raft the Colorado through the Grand Canyon last year. I signed up for this year's trip in April. Covid be damned. I did a lot of camping in 2017 and would love to do those kinds of trips again. So I need to plan now, Hard to know what might be open/closed/limited. A couple of years ago I told a neighbor to go ahead and go fishing because while he might feel guilty about not tending to the yard, he would regret not going fishing on such a beautiful day. He went fishing.
Fatigue - it was definitely worse during the first 5+ or so cycles on 125 mg than it is now, 100 mg. Fatigue was already not as bad when DR dropped dose, so I'm not sure if it is the lower dose or adjusting. Maybe both. Was on 125 mg for 11 cycles, and am on 6th cycle of 100 mg.
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Welp, hubby/beloved and I pulled up the well pump ourselves it took us a week but we did it. 220ft of brittle schedule 40 that at one point broke in half in hubby's hands at the 180ft point, almost crashing our efforts back to the bottom of the well. It was interesting the two of us getting things attached to a pulley system to keep yanking stuff up. But we managed. We looked at each other and said I think we need to get help with putting stuff back in, no flexible pipe recommended below 100ft and sending sections of solid pipe down again, however much stronger sounds like too big a task. With stimulus funds in the bank it will make the 2700 quote ( quote incl. new pump, new piping, new wiring plus installation) a tad easier to swallow but not really. But we did save alot pulling up the old pipe ourselves, so at least we have that. 9am tomorrow the well company arrives. Hot shower, I can feel you coming. We've been without water since christmas eve morning, dragging 5 gallon water jugs to the loo to flush is something i can't wait to put behind me.Aprilgirl, you and I have a busy day awaiting the two of us on the 8th. You scans, me blood/appt/zometa. I'll be reporting for pocket duty that day. Hoping for Stable Mabel for you
dutch - never hesitate to drop by even if its just a question. Asking questions offers support because it may help someone who just reads and doesn't post. I dropped from 125mg to 100 about 4 cycles ago. I noticed a big change in the mouthsores, hardly there now. Fatigue, yes and no. I'd say it fluctuates each cycle, same with the gas. I'm on cycle 14 currently total, 4 on 100mg. 8 on capsules, 6 on tablets. I liked the capsules better. Tablets feel more potent to me. Constipation more of a problem on tablets and not much improved on 100mg.
Aprilgirl/Planning. I am a cautious, lets wait, lets carefully plan, dot every I, cross every T type person. My beloved is the spontaneous type. I ground him and he gets me to lighten up. I have adopted the attitude right now that I want to do as much as I can or as much as I'm allowed to while I feel "good". It sounds like your doing exactly what I have been doing - cleaning, purging, trying not to leave too much of a burden for my husband. I have a feeling you feel like me. A combination of fear of what life will look like when things change side effect/quality of life or otherwise and yet still inside wanting to dare to dream and plan some future to look forward to. I'm still sleeping on my own- almost a month now of no pills - part of what helped me was accepting I don't have a crystal ball and cannot plan really how this disease will effect me. It will just effect me how it chooses to, I have no say. I had to realize and accept this. This frankly pisses me off because the planner in me wants answers so I can predict what's going to happen and when. Just like we're all guilty of signature comparing. We want to know how to plan or if we should. Some nights it takes me a bit longer to drift and I feel that concern rise in me, I just scanned in Nov, but I'll be in the machine February or March again...already.... choking down that chalky barium garbage and cursing cancer making me have to do this over and over and over again. Dark thoughts just exist side by side with us now, it's now about learning to practice a teeny bit each time they crop up to tell them to hit the road jack and don't come back no more no more no more. Easier said then done, but A for effort always counts
I think we all can relate to what you said. Sometimes reading someone else write about how you feel helps, thank you for bringing this up again, i know this is a struggle for many of us. 0 -
Thanks Shetland Pony!
Your post hit home for me. I really need some positive thinking in my life right now,. Its been 7 months since I was dx'd w/MBC (June 5th,2020) and my tumor markers are still rising significantly and it appears that they do correlate with progression of disease as per my PET scan done 3 months ago. I was initial put on Ibrance & letrozole and when that didn't work, I started Ibrance and Fulvestrant (Faslodex). I been on that regimen for almost 13 weeks now, but my CA 27-29 tumor markers are still rising. I'm holding my breathe waiting for my most recent markers to come back and praying that they show some indication that the meds are working. In addition, I'm stressed out about my upcoming MRI brain and PET scan, which are scheduled for later this week. I'm going to try to take your advice and make plans, start projects, etc. so that I can get on with my life! Thanks for chiming in!
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Sondra, we must be living parallell lives! I've had THE a worst case of pain due to indigestion - or trapped gas in my upper back of all places- right over the New Year. Two days of no sleep and constant pain, to the point where I told DH that if this is what's in store, I'm not playing. Put it down to not eating during the day ( Faslodex makes me not hungry) and then having a biggish meal at night over a period of a week or so, plus wine, probably.
This is not a usual thing for me, and I had no meds in to treat it and no-one to call who wouldn't just tell me to go to A&E ( NHS111). ...Can you imagine rocking up at A&E with trapped wind in a pandemic? Anyhow, on the mend now, eating small, sensibly and regularly and we’re back to full lockdown tonight... yet again.
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Thank you for all your responses
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Candy - scans on 28th, will have results on Feb 1 at my monthly MO chat.
Karen - yeah, I think Ive come to the realization that I can't have close to any food after 8 pm anymore. Last night we got chinese takeaway but didnt eat until almost 8 and while I had small amounts (and didn't have indigestion) it wasn't really comfortable to sit waiting to digest! I almost called 111 as well because it all hurt so much, and then spent the next day eating plain rice and mashed potatoes in small amounts!
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Sondra- Got it. You are on my list by my computer. I try to keep up with all the scans on here. I know I miss some.
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Candy,
Quick question for you. Now that you are on your 5/2 cycle, when do you do your labs in that cycle? How does that work out?
I have an MO appointment today, plus bloods, plus my faslodex shots. Dec. 23 CT scan report looks stable to me -- unless she sees something that I don't. Did you say that you are not seeing any difference in fatigue on your new dosing schedule? I'd love to talk with her about it and see what she thinks. In my mind, your schedule keeps more medicine going into the body over a prolonged time period (one of the benefits, I think, of Verzenio) but I'm just wondering if there are other advantages. My neutrophil numbers have been over 1.0 all but one time in my year and a half on Ibrance.
Thanks much.
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BevJen- I do monthly labs of CBC, CMP, and CA 15.3. I do them locally with an order from my MO so I do not have to travel. I keep track of my "weeks" of Ibrance--- on 5 days/ off 2 days-- and go to the lab the day before starting my next cycle of Ibrance (end of week 4, beginning of week 1 next cycle). My ANC stays 800-900 (0.8-0.9). Still below 1000 (1.0), but my MO messages me that it is ok to resume Ibrance and she says she is ok with me being 800-900.
No I do not see a change in my side effects--- fatigue, mild nausea, heartburn, constipation.
Hope you see this in time for your MO appt.
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Candy,
thanks so much for this info. As it turns out, this was NOT the topic of our discussion. I don't want to hog the thread, but I had an AWFUL appointment today. First, I went for labs and my faslodex shots. The nurse who does this is usually great. She did the labs first, and then went on to the shots. While I was standing there during shots, my hand felt wet -- I looked down, and I guess I had had a gusher from the blood pull. Blood was running down my arm, and they had to retype me. Apparently they've moved away from the compression tape around the arm because a lot of their elderly patients were not removing it and cutting off their circulation. Well, my shirt is in the washer right now -- I hope the blood all comes out!
Then my conversation with my MO did not go well. I had a CT on 12/23. My bone mets were stable, according to that report. There were some comments in the report about my liver, because I had had the two liver ablations on 10/19 and 12/11. The language tracked the MRI reports that I've had on the liver since July 2019 after my first ablation. All of a sudden, though, she focused on it and thought that the wording sounded "a little bit cloudy." Add to this that I had a huge increase in my TMs last month (today's not available yet) and she said we need to think about changing treatments.
So I was absolutely gobsmacked by this visit. I have an MRI followup on my Dec. 11th ablation scheduled for Jan. 14th. We are to talk after that (so mid month). I am shocked and confused, when the CT report sounded quite stable.
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If the blood doesn’t come out of your shirt, DONT put in dryer. Heat will set blood. Pour hydrogen peroxide on, then rewash.
Sorry you had lousy appt.
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Spookiesmom,
Thanks for the tip. I appreciate it. It's a brand new shirt -- this is only the second time I've worn it!!!!
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BevJen--- Oh my. So, wait, you had the ablations on 10/19 and 12/11. Won't that look "different" on the scans? And maybe alter the TM's? Plus the MRI will see the liver tumors better than the CT. So... maybe the MRI on Jan 14 will shed more light, more info, on the situation and there may be no progression or need for a treatment change. What does your IR say? Have they seen the CT and have an opinion? Breathe. We need more info, I think, before changing treatments.
But good the bones look stable.
Last blood draw I had the compression bandage slipped with my long sleeved shirt and I got blood on my clothes too. I soaked it in cold water as soon as I got home and all came out.
My thoughts are with you.
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Hi, Candy,
When the prelim CT report came out (just the "impressions" section) I sent it to my IR in a panic. He said that it sounded normal to him, and that he didn't see any surprises in it, but to hold tight until the Jan. 14th MRI. I had sent his response to my MO. But today she was completely focused on the small lesions that have been there and done nothing since they first showed up in May 2019. We discussed the TM situation, and she said that yes, maybe the liver procedures were causing the increase, but she still seemed convinced that we would have to change treatments, pending the results of today's blood work and the Jan. 14th MRI one month post ablation re-do.
Just a really upsetting visit today all the way around. And this after I went through the rigamarole to get assistance through Pfizer for Ibrance, too.
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BevJen, Sorry to hear about your bad day! It sounds pretty unscientific to think about treatment change based on “cloudy" wording. I'm not so familiar with the weight that rising tumor markers carry, but I know I've read that for some they don't reflect what scans are showing. I'm glad you have another MRI scheduled soon to get more info. I can see that you were expecting a fairly smooth appointment if your recent ct showed stable! Ugh, always something to rock the boat.
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BevJen- So, let me understand. Your MO is worried about the lesions first seen May 2019 even though there is no change in them?? And that there was some "cloudy" wording? I still do not see the evidence for a treatment change. I will pray the Jan 14 MRI will clear up the confusion and will look good. I hope you get some rest tonight after a bad day.
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I know it’s basic but a cold water and salt shortsoak will always get blood out of your stuff ladies!
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BevJen, I’m so sorry for your crappy day. I’m thinking of you. I don’t have anything to add. Just wanted you to know. Hugs.
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Thanks, ladies, for your support!
And the blood did come out -- thankfully.
I am taking a deep breath and hoping that the Jan. 14th MRI reassures my MO that things are stable. If not, I guess it will be on to another treatment. Big sigh.
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BevJen
I had gone in for a port flush. Heard the nurse say “oh shit”. Opened my eyes, looked down, blood was squirting all over my new shirt, and white shorts. And his scrubs, the chair and floor.
Another nurse brought a stack of 4x4s and a bottle of hydrogen peroxide. They dabbed it all over my clothes. It was gone!! I was damp when I left, but not bloody. Learned something that day.
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Spookiesmom,
Yeah, I would have thought that anything with peroxide in the name would bleach stuff out -- but now I have a new cleaning tip! This has never happened to me before, so each day a new adventure!
Thanks.
Bev
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BevJen, i have no words of wisdom or much i feel like I can add but I am here to give a big hug and say I'm reporting for pocket duty on the 14th, will you hear from MO shortly after so you dont have to wait too long? Crappy day indeed, but hoping mri coming up brings clarity and hopefully allows you to keep dancing with us. *hugs*
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Rabbit,
The MRI has been ordered by my IR, since it's really to look at the most recent ablation (Dec. 11th) to see if he killed off the tumor and to make sure there is no residual anything there. He is really good about releasing the reports on the patient portal -- usually the same day that he receives them. So I would expect that to be Jan. 14-15 in time. Then I will talk with both him and with my MO -- and then I need to get them to talk to each other. I know that my cancer center is a large one, but I find it amazing that they haven't talked to each other at all about my situation.
I hope to keep dancing.
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BevJen - so sorry to hear that you had such a day. Ugh - sending you a big hug and will be in your pocket for the 14th.
RRabbit - I agree, that I think you and I share some traits like being planners married to spontaneous people:) I am so impressed that you and your husband did that well work yourselves - awesome teamwork and definitely a good amount of $ saved. Hope the rest of the work was done and you are enjoying hot baths/showers.
Katrose - In your pocket as well for your scans at the end of the week!
SondraF - in your pocket for 1/28 scans
If I missed anyone and their upcoming scans, let me know! I so appreciate Candy and her thoughtful checking in and will try to do the same.
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BevJen,
Hopefully you don't have to change treatments, but I have been following up a suggestion that Dee got for a new estrogen degrader called ARV-417 (not a SERD but a PROTAC). It is being tested in phase 1b now in combination with Ibrance, and in addition a new trial will start in the second quarter of this year that tests ARV-471 in combination with physician's choice (which I assume would include Ibrance, Verzenio, Everolimus, Piqray?), specifically as a second or thirdline treatment for ER-positive cancers. When scans are crazy and you can't get clear answers, it helps to think that maybe an even better treatment is waiting for you; or anyway maybe we would be wise to just mix up the meds after awhile, I wonder about that.
Here is a presentation of their early results, and evidence that the treatment can work even for cancers that have already become resistant to other endocrine therapies. The current trial does not exclude prior Faslodex treatment.
https://ir.arvinas.com/static-files/14289268-ed3e-...
Here is a link to the current trial
https://clinicaltrials.gov/ct2/show/NCT04072952
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Cure-ious,
Thanks for the further info on the trial. In our discussions today, I pushed hard for keytruda if we have to change treatments. I have tumor mutation burden high and even though I have ER/PR+ HEr2- cancer, this would make me eligible for keytruda use, without any chemo, outside of a trial.
I realize it's rare that someone with my profile (hormone positive) would be eligible for immunotherapy outside of a trial, and so if I have to change treatment, I think I'm going to go for it. From all of the research that I've done on immunotherapy, most researchers recommend going tor it earlier rather than later in the treatment sequence. My MO tells me that if it doesn't work, we can still go with Verzenio, or neratinib, or piqray, before we even get near chemotherapy or talk about trials. The other positive about keytruda is that it's been approved by the FDA for every six week treatment, and that sounds pretty good to me. It's a 30 minute infusion. So we'll see what happens.
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