Ibrance (Palbociclib)
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Sondra, the j&j vaccine sounds good, so we’ll see how that goes....and Tom Petty is pretty cool...or does that just mean we are vintage!
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Candy...I travel every three months. I also have scans and MO appointment on the same day with the long wait in between. However, I get Zometa locally and see local MO monthly for appointments between 3 month scan days. I travel because I'm in a trial. Great news regarding your scans.
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April, thanks so much for sharing the pumpkin roll recipe. I don't think I'll have time to bake it before xmas but can't wait to try it in the new year. I make pumpkin bread bread and pumpkin bars, which are a big hit with the family, but had never heard of pumpkin roll. It looks delicious!
Candy, so glad to hear your appt. and scans went well. Congrats on stable.
Hope everyone has a great holiday. We are expecting snow tomorrow, from 4 to 8 inches. I would like a little less but it will be nice to have snow for Xmas.
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Candy - congratulations on stable mabel scan results, and staying on Ibrance.
Cure-ious - So sorry to hear you have family members with covid and hope they are doing ok and don't need to be intubated.
Sondra - the J and J vaccine does sound good. Indeed, Tom Petty was right - the waiting is the hardest part....
Lee64 - a white Christmas is always a bit magical, enjoy!
Wishing all of you a wonderful holiday, despite Covid and social restrictions.
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Any thoughts on CA27-29 tumor markers? It seems like some DRs use regularly, others do not find them helpful. Oncologist called, concerned that mine went up since Aug, but wants me to continue with Ibrance 100 mg and Arimidex pending next CT which is scheduled 1st week Jan 2021. Started Ibrance Sept 2019. At first it seemed like it was working, after each CT oncologist was very encouraging because tumor was shrinking, but last time her comments seemed murky. That overall, improvement was indicated, even though measurement suggest growth. She said that radiologist might measure different area etc. CA27-29 25.6 Sept 2019; 43.1 Aug 2020; 50.4 Dec 2020. "High" is anyting greater than 38.6. Is this a big increase? Do they fluctuate? Some have posted about MRIs, Ultrasounds, Petscans etc to help with detection and interpretation. Would these help? What kinds if questions should I be asking? Metastatsis has not been mentioned, but I worry about it and if CT would detect it early?
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RK2020- You had a MO appt before the Holidays, right? Everything ok?
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BlueGirlRedState, I'm sorry about your worry. My 27-29 has only come down around 140 points since I started. I was at 492 and am now at 359. You don't have your diagnosis and treatment listed. Is it possible you can do that so we see what it says.
My case is extremely rare, as no imaging shows my cancer except spinal MRIs. PET scans and CT scans don't pick up anything. I have lobular. It's in my bones and stomach
I still get a CT every three months. My mets were found because of biopsies, not scans.
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Re: Covid Vaccines. After receiving my Ibrance in the mail. I decided to contact the pharmacists at Accredo and my local facility. Both responses were similar with taking the vaccine during your off weak. However the Accredo pharmacist wanted to review my lab work, especially my ANC, but also my lymphocyte. My problem area is more with anemia, RBC. However the pharmacist didn't see this as being relevant, or didn't comment on it.. My local pharmacist was concerned on timing of the vaccine, and didn't go into my lab work. However the local pharmacist felt strongly if I can't schedule on my off week, don't take it at work.. She felt the vaccines will be arriving at the cancer facility in the next month or two, so don't panic and take it now. The cancer clinic will work @ your off week...
In case you may have reservation, the pharmacists are a great resource. Actually they did a lot better explaining then my MO re the vaccine and targeted therapy.
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Tinkerbell- I like asking pharmacists things too. They are really knowledgeable. And not just about Ibrance.
I am doing the on 5 days/ off 2 days of Ibrance so I do not have the week off, so I asked my MO last week about how I would do the vaccine (when ever I get the chance to get it). She suggested taking a week break and doing it then so my numbers would be up. So that is what I plan on doing. Who knows when my turn will come. My MO didn't know when they would have it for the patients. She said she had not even had hers and she is a doctor !!!!
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Candy: I'm glad to hear your MO has a plan for your 5 days/off 2 days schedule.
I failed to mention in my above post the Accredo pharmacist recommended to ask my MO to have lab work before my vaccine. Basically to look at my ANC, to see if we can get my number above 1.5, mainly to have the best chance of receiving maximum benefit from the vaccine.
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Tinkerbell- I overthink things. But if the vaccine doesn't really take hold for 2 weeks (they say that for the flu vaccine), then if we go get the shot when our ANC is at it's best, then restart Ibrance the next day then 2 weeks later when the vaccine is kicking in we will have low numbers again. Sigh..... I guess I should not overthink it. Get the vaccine when ANC is good and pray it works.
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Howdy all! Checking in. Well, our well pump died christmas eve morning. Still isn't fixed yet. My husband is very handy and knows electrical stuff and plumbing stuff really well. He learned from a POW sub vet who was the electrician on the sub so he is tackling this because it would be outrageous to have a company come out. It cost 1800 bucks to have our septic pump pulled and replaced 3 yrs ago professionally. The new pump alone on our 200ft+ well is going to cost that much just about. Eek, and while we are at it replacing our 9 yr water heater that is 12 years old. Its been interesting to have electricity but no water. Have gone a week or so without both when a big storm hits etc once a yr or so, but this is a coordinated dance trying to cook, clean...and flush, lol. Beloved has vacation all next week, so guess what our projects are? New well pump, new water heater. I guess the morbid bright side is I'll never have to deal with this inconvenience again. Was feeling particularly grouchy today, no hot shower, no shower period unless we trek to the truck stop for one on the weekends. Sponge bathing or wiping myself down with baby wipes. Beloved decided to warm a big pot of water from of our storage jugs and wash my hair over the kitchen sink to cheer me up since my shoulders ache from helping him pull well pipe up. I thought to myself am I becoming a real life version of the curious case of benjamin button or something? I feel like I've reversed the aging process wiping myself down with baby wipes and being washed in a sink in essence. Anywho, we'll have water again soon. MO visit on the 8th - blood, appt, zometa (was scheduled for it last month a month early so pushed to this visit. I still intend to decline the Covid vaccine. I've done my research and I feel comfortable with my choice.
Bluestate- regarding Ca 27 29. My MO always said we'd go by scans but watch the TM's. They can be very accurate for some and inaccurate for others. My MO considers a 10-15pt jump up or down "stable" - she said consecutive big jumps up over a couple months would have me scanning again early. They could signal something is going on or it could be a fluke. We kinda just never know.
serenity - seahorses are one of my favorites. I was recently introduced to the leafy sea dragon a few months ago on a facebook share, was in awe. Sea creatures, animals in general amaze me, the color palates are just breathtaking sometimes
april - i think we might need an extra coffee pot that pumpkin roll looks divine. I envy those who can bake, I'm a better cook than baker.
candy - yay for stable! I know that was a rough wait but good good news. Still dancing with us
KBL it's interesting how things show up or don't on certain scans. My bone scan doesn't pick up some mets that my CT scans do, and then for other mets only a spine mri saw them.
Can't believe it's almost January. Happy new year ladies and good things for all of us this new year
Hugs 
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Tinkerbell, That’s all very interesting from the pharmacists. Thanks for sharing.
I struggle with my counts and would definitely have to take more than one week off to get ANC of 1.5. I think it may be a while until I’m offered the vaccine so I’ll have some time to get more info from my MO. She mentioned possibly giving me an Ibrance break based on my recent MRI (no results yet).
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Rabbit - Leafy sea dragons are such beautiful creatures. I hope you get water very soon.
I'm low on the priority list for the vaccine. I noticed the flu shot was being offered at my hospital after I already had it. I'd love to get the vaccine there when it's available. Then it would be easier to schedule during my off week.
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Rabbit, yes, it is crazy how some scans pick things up better than others. I wish I could trust CT scans, but I can’t.
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Rabbit - I hope you get that well fixed soon and that it is not costly. I keep thinking I should put a water reserve in a couple of 5-gallon jugs, but seldom do. One friend mentioned putting in a hand pump for their well since they are subject to rolling blackouts, especially in fire season. Thank you for comment on CA 27-29. Hopefully January scan is good and CA27-29 stable. Lovely picture of sea dragon, good camouflage.
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Not something we like to see.
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Re Ibrance price increase -- I posted this a bit ago when I found this out from my Part D insurance plan. Ibrance was around 13k a month retail in 2020; they are raising it to 19k+ for 2021. These are retail prices, so with insurance, your cost will inevitably be less. Also, I think that Ibrance goes off patent in another two years or so, so they are trying the wring the last penny from all of us.
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I do remember when you said that.
My advantage plan covers almost all of the amount, the PAN foundation picks up the rest, I have no copay on it.
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Ladies - anyone else dealing with indigestion on Ibrance? I may have overdone it over the holidays, but last night I had just the worst, most painful indigestion I have ever had, and that was a few days after having a similar bout after eating pizza. To be fair my meat and cheese consumption has been up quite a bit in the last two weeks so I was assuming it was due to too much fat/spicy food in my system. Is this something to raise with the MO at my Monday appointment? I don't currently take omeprazole or anything like that, and have only had this happen once or twice in the last year in similar instances (too much meat/booze).
Back to plant-based eating and fish!
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I do not know if it is Ibrance, AIs, getting older, cancer......but I find I do feel better with less meat and alcohol. Cheese has not been a problem for me. Staying hydrated really helps as does staying active
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Sondra, I've been using Pepto Bismol (or Pepto Dismal, as my husband and I like to call it) with a little more frequency since I've started Ibrance. Not a super lot more, just more. It does help with the heartburn, especially at night. I've not thought to mention it to my MO.
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Hi Ibrancers - happy New Year!
SondraF - I have not had any notable indigestion, yet on Ibrance. However, I will say that I have been overindulging in holiday food and definitely have cut back starting this weekend:) I did enjoy baking this holiday. I did gift a lot of the cookies and sweets but also indulged!
RRabbit - hope your well pump is fixed soon. I sell residential real estate and live in a semi-rural area so have been through a lot of well and septic inspections/repairs/issues - never fun. Will be thinking of you on 1/8 for your appt!
Bluegirl/redstate - I can't add much about tumor markers because my onc doesn't usually order them and told me early on that they can fluctuate for reasons other than cancer. That being said, I do know of ILC women on here that tumor markers are an accurate measure in their cancer. Hope your next blood work and scans are fine!
Scans! I have my quarterly petscan upcoming on 1/8 and onc meeting on 1/11. My onc lowered my Ibrance dose to 75 mg as even on 100mg my white count was too low. I will be talking to her about Candy's 5/2 dosing schedule . I would like to stay on Ibrance and would like my onc to consider the 5/2 as a way to keep me on 100mg but we will see!
I think we all have a certain amount of trepidation with scans. So far (a bit over a year) all my scans have been good, showing ibrance/fulvestrant has been working to shrink or NED the cancer (understanding it's in my blood stream and could be there but too small to pick up by petscan). At some point this will change. I really do live scan to scan - I am curious if any of you have some of these feelings? I find myself holding off on making plans, telling my husband "let's get through my scan and results and decide after that". Add to this scan holding pattern Swedish Death Cleaning and this is what I am up to. We are hoping to downsize and need to purge so I am in a huge cleaning out the house mode. Part of my incentive is that I feel pretty good now. If treatment has to change, what if I have side effects and don't feel good? Part of it is motivated by my not wanting to leave so much "stuff" for my husband and kids to deal with if things go bad. Am I crazy? Overall, I have a good attitude, all things consider but I really do dislike that I have these thoughts that keep me grounded in a bit of fear. I guess this is just my new normal. sigh....so, Ibrancers - let me know if any of you relate to this or if I should seek a therapist!
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re GI symptoms. After tracking this for a few months, I found out that nightshade vegetables are the culprit. Once I reduced and then cut them out my GI symptoms improved.In addition I changed my eating habits. Intermittent fasting, I eat daily from 12pm-6pm. Probably the best is to track dietary and lifestyle habits.
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Aprilgirl - I feel exactly the same way about scans. My next one is in March and I sort have put any plans beyond that on hold. It's an awful way to live but I just feel anxious about making plans and then ruining them. Caught myself the other day thinking of something I would do differently next Christmas and then immediately had to remind myself that I might not have another one. I also have been going through closets, drawers and boxes getting rid of stuff. It's a good idea, no matter what, but in the back of my mind I am doing it so there's less stuff for my kids to deal with.
Good luck everyone and keep on dancing!!
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aprilgirl, you hit it right on the head regarding scans. I just had mine, but before that I told my husband the same thing: "Can we just hold off on making plans until I know the results of my scans?" He was agreeable to that, and my scans were stable. I do have to have a brain MRI on the 20 to see if we can figure out why I'm having dizzy spells. Hopefully it's nothing, but I appreciate my MO being proactive.
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Sondra,
I don't really notice indigestion with Ibrance, but I already take omeprazole 40 mg per day because I have a hiatal hernia and reflux. I do notice some nausea, and to this point, I can't figure out what triggers that -- whether it's based on when I take my pill or what.
Aprilgirl,
More and more, I find myself pulling back from making plans for the future. I don't know if it's based on scans, because mine are not necessarily on a set schedule. My MO doesn't seem to work that way. But when we talk about plans in the future, unfortunately my mind goes to that dark place -- will I be able? will I even be around? And I, too, worry, about side effects, how I'll be feeling in the future, etc. It's scary stuff. So I'm right there with you.
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Sometimes I read this thread just to follow people, even though I am no longer on Ibrance. May I chime in on making plans? Cancer bully and his sidekick Fear had really been taunting me, and I wrote an answer to them. Part of what I said was this: If I do not make plans for things I would like to have happen, then those things will not happen. If I do make plans for things I would like to have happen, then those things may indeed happen. The risk is disappointment, but how is that worse than living without things to look forward to? So I will look for a new dance group, I will continue planting my garden, and I will plan to see family and friends. If I have to adapt, change, cancel, or miss it, well at least I tried.
That's where my head is now. So shut up, bullies. (Saying this to cancer and fear.)
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Re: indigestion - I had been doing intermittent fasting (12-7 ish) for four weeks prior and was really getting in the swing of things before Christmas, then all of a sudden I am having a cookie with morning coffee or brunch at 1030 and then cocktail hour nibbles and then meat-heavy meal. And I did have tomatoes on top of something before the other night. Man.. don't take away my tomatoes and peppers!
Pepto is available here, and I need to stop by the pharmacy tomorrow or Tuesday anyway to pick up my next round of letrozole so I can ask the pharmacist as its kept behind the counter. I've got a few other stomach options at home, but I absolutely hate the taste of them and they didn't seem to be doing anything anyway.
About planning - I don't really want to make plans too far in advance anymore (12 months+), but I try not to let the scan schedule dictate, since cancer already does enough dictating in my life. I like to remember how nbnotes was still planning on going to Fiji I think, up until a few weeks before she passed and how much traveling and other activities she was doing within the last six months. In then meantime there is stuff to tidy like cleaning, purging, financial stuff that will free up the mind and time for later. I try to do a little here, a little there so the task is less overwhelming.
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I am sometimes a little hesitant to drop in and ask a question of you all and not offer more support to you all. However, I do have a question to ask if you all don't mind.
After over a year on Ibrance my dose is being reduced to 100 mg. Low ANC and other blood counts have caused a delay in starting my last three cycles. Has anyone noticed less fatigue with a dose reduction? Improvement in anything else?
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