Ibrance (Palbociclib)
Comments
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@brutersmom , in my case I'm not doing extra exercise I'm just having the blood taken later in the day so I think it's accurate .
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Just to clarify my post … my thought was that afternoon blood counts might be higher because people are generally more active by that time of day. I should have been clearer — I wasn't suggesting extra activity but can see that it may have come across that way.
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@mc22 no worries about the confusion. I have been known to work out before labs but it doesn't seem to change much. I have noticed they are higher later in the afternoon.
@malleemiss251 I love chocolate but since starting on cancer meds I can take or leave it. As well as most foods. It gotten a little better on just letrozole.
So I am wondering if everyone is ready for the Christmas holiday if you celebrate Christmas. We always host Christmas eve for our local family. I am sitting here tonight wishing I had hired a cleaning lady. I have had 2 parties and 3 Dr. appointments this week. With 5 pets I wanted to clean closer to the weekend. Big mistake. I just don't seem to have the stamina that I did a year ago. I will keep push and it will be done. I still haven't done Christmas Cards, wrapped presents or decorated the tree. Honestly I am not sure I care about the tree. The lights are pretty in the evening without the ornaments.
How do you all manage?
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@brutersmom , I love the holidays but it is a lot of work ! What you described is a lot of appts on top of cancer meds and hosting 2 parties - wow! I understand your position as it's hard to keep the house picked up and get it ready for a party.
I've scaled back a lot on our holiday decor and activities since stage IV but still enjoy it all. You My husband and I used to host a party mid December . I was dx in November 2019 and that Xmas we canceled the party, 2020 with Covid we didn't host the party ....since then we haven't picked it back up but might next year.
We get a live tree so got it at the end of November but got a 10 ft tree instead of a 12-13 ft tree so it is easier to decorate . I almost didn't get a tree. I agree a home is still festive with lights and other Christmas decor or simply greenery and candles .
I just got my Christmas cards today from Shutterfly. You can send New Years cards or skip it , too.
I am sure your friends and family appreciate that you are hosting the parties . With candles lit , twinkle lights and some Christmas music no one will notice dog fur in the corner of the carpet .
When I get behind in cleaning and need to host a gathering I've been known to put piles of mail/ clutter in laundry baskets and put them in the garage ;) just don't forget about the baskets !
Hang in there !
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Hope Rugo commented on this in a video the other day- she said your neutrophils tend to stick to the walls of the blood vessels, so if you walk around a lot, or especially wait till later in the day to do the blood test, the blood moving around shakes more of them off and you get higher counts… Perhaps some of this is why you are not at risk of more infections also, tho that is mostly because the cells are growth-arrested, rather than killed as happens w/chemo
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Cure-ious - thanks for this info . I'll look for that video . My 2019 oncologist told me pretty much the same thing - that the cells are suspended but not killed off , like with chemo . However , I never knew that later in the day the wbc level could show up as higher . I tend to schedule my appts early to get it done so I can get going with my day but my next 3 month appts are at 2pm :)
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brutersmom, I’ve scaled back each Christmas and enjoy the holidays more. This year, due to surgery on my leg in October that’s still causing some issues, I placed an order for our Christmas ham dinner meal from Kroger’s. My husband says it may be the start of a new tradition! I enlist my husband to help out with gift wrapping, and there’s less of it to do these days because I started giving cash as a gift and recipients love it. I stopped sending Christmas cards awhile back. My husband helps out with the cleaning, too. So please don’t hesitate to ask for help to get ready for your parties.
We just put our Christmas tree up this week and I’m glad I made the effort. It’s a prelit, narrow, seven foot tree, snaps together quickly, tucks in the corner and we hang ornaments while listening to Christmas music. I put less ornaments on this year and it still looks pretty.
Aprilgirl, love your idea of tossing miscellaneous into laundry baskets and tucking them away. I used to stash all the clutter in one bedroom and kept the door closed while entertaining.One more thing. As women, we can challenge the idea that we must overwork ourselves, putting our needs last in order to make the holiday nice for everyone else. Society would have us believe that we must take on this roll to prove our womanly-ness. My motto is “work smarter, not harder”. Take shortcuts to get ready for Christmas and don’t feel guilt about it.
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Aprilgirl. Hiding stuff is one of my favorite tricks when we have a party. I am done with cleaning except the sofa and dusting wood furniture. Hope the cats don't barf any hair balls on the carpet in the next two days just cleaned the carpet. Would love to replace the family room carpet with a quality vinyl planking. It's time the carpet is only 28 years old.
My husband is in charge of food. I have to watch him more and more. He doesn't think ahead and now he has trouble staying focused. He was supposed to be home from helping a friend by 2 but it's after 3 now and he is still not home. He left late and went to the farm market before coming home. Probably for things we already have in the fridge and he forgot we have them.
It doesn't help that my drier quit working on Monday and it will be 2 weeks for a new one to arrive. Cost to fix is ½ the price of a new dryer. It comes the Friday before my surgery unless they have a cancelation on the day they deliver in my area.
Next year I am hiring a cleaning lady.
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Hello everyone!
It’s been a long time since I’ve logged in and even longer since I’ve last posted. Wanted to say hello and wish everyone happy holidays and a very healthy and prosperous new year!
I have not been able to catch up and read all the posts but see some recent posts about ANC numbers. I started cycle 32 last week and have been on the 5 days on 2 days off cycle for about 5 or 6 months now. I am already on the lowest dose and was really struggling with having ANC over 1000 at start of new cycle. My MO initially did not agree to the 5/2 cycle when I first suggested it (after reading about it here from Cureious) but when I had to take 1-2 weeks off and constant jabs for CBCs, she finally agreed. We don’t test regularly and definitely not before the start of a new cycle, only randomly when I happen to be coming in for my 2 month visits. My recent visit was 2 days ago and ANC was 1400 on Week 2, Day 3. She was happy with that.
If you struggle with low ANC and taking extended breaks, I would suggest asking your MO about the 5/2 cycle.
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sunshinedaydream welcome back. Hope you have a wonderful Holiday. I talk to my oncologist about 5/2 and he said he never heard of it. He wants to do 2 weeks om one week off after knee surgery. When I went for my blood test after 3 weeks off my neutrophils were still low. I have a test again in another week and ½. I am doing them later In the day in hopes they will be higher. I have to be at 2 in order to have surgery. The palative care Dr. was going to touch base with the oncologist to see what he found out. She said that sound like it might be a better option for patients struggling with low neutrophils.
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Hi Brutersmom, I hope you get to 2!
My MO also had not heard of the 5/2 cycle when I initially asked about it. And she wouldn’t agree to letting me try it but she came around after two cycles of having to take 1.5-2 weeks off between cycles and still barely getting to 1.0 or 1.1.
I can’t remember the last time I was anywhere near 2 while on Ibrance. I have a BSO scheduled for Feb 5th and my MO said I would need to stop both Ibrance and Letrozole for 11 days before and 11 days after the surgery. But she never mentioned needing to be above a specific threshold. I hope 11 days off would be enough for me… will check in with her to see if I need to be at that level as well and possibly consider taking more time off to get levels up.
Merry Christmas to all who celebrate. I need to finish wrapping gifts for my 2 little girls. Christmas is so magical to them and I cannot wait for tomorrow.
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@sunshinedaydream I hope you have a wonderful Christmas and enjoyed yor Chrismas Eve. As for the surgery, knee surgery has a high risk for infection. I know I need to take antibiotics a for a while after surgery every time I go to the dentist and I need to use mouth was for a week before surgery to lower mouth infection. Letrozole I can continue but not any meds that effect neutrophils and white count.
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@sunshinedaydream and @brutersmom are you both kn 5/2 Ibrance cycle? If so how long has it been and what's the impact on your Neutrophils? I ask because I've read about it but most studies don't indicate its benefits on the Neutrophils, which I'm assuming is the reason that cycle is sometimes recommended for patients experiencing our challenges of Neutropenia. I want to suggest it to my Oncologist as an alternative to changing the line of treatment because we don't get the Ibrance 75mg here in Kenya, which would have been my automatic next step.
Other than than, I appreciate your sharing this coz your experiences are a source of new knowledge on management of Ibrance side effects. Thanks girls, you are awesome inspirations 🤗💕
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@sunshinedaydream I'm curious why you'd need to stop the Letrozol in preparation for and during recovery from surgery? I though you'd only need to take an ibrance break as it affects the WBC and Neutrophils.
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@sunshinedaydream I've just seen your update on the 5/2 Ibrance cycle. It seems to have helped manage the Neutropenia. I shall definitely suggest it to my Oncologist. Like you, the 21/7 cycle has led to increasingly low Neutrophils and frequent 2/3 week breaks, sometimes even after the Neupogen injections plus antibiotics. Thanks for sharing your experience. I've learned something new today. Have a blessed Christmas 🎄 🙏
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Rosebessie. When I go back on Ibrance in January. The plan is to start back on 2 weeks on 1 or 2 weeks off. My Dr. never heard of 5 days on 2 off. Pfizer is currently studying this as an alternative for people who struggle with low neutrophils on 3 weeks on 1 or more weeks off. I brought it up to my MO and he never heard of it. I want him to look at the study because in another group I am in, people are having really good results with this dosing.
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Merry Christmas and happy holidays to all Ibrancers , current and former ! You have all helped me navigate this surreal dx with great info , humor and compassion . Sending you all love and prayers for a stable and peaceful 2024 !
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Aprilgirl1. Your tree looks pretty. We did Christmas Eve. Dinner and presents. My step daughter is Flamingo crazy and my daughter bought her a Flamingo wearable blanket. Things went down hill from there. Just a fee select pictures.🦩🦩🦩🦩🦩
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Love it ! We all need a flamingo in our lives !
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Haha, love that flamingo blanket, @brutersmom!!
Gorgeous tree, @aprilgirl1! Hope you had some mead or hot toddies tonight. 😉
Sincerely,
I-Bet-You-Can't-Guess-Which-Mod-I-Am 😂2 -
I only had a nice glass of white wine with dinner , hot toddy day is Tuesday ;)
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Hahaha, yes. You must need it when I'm facilitating group, @aprilgirl1. 🤣
See you tomorrow night!
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Aprilgirl, what a gorgeous tree! Ah, I remember hot toddies... hope you and your family are warm and cozy.
Brutersmom, that flamingo blanket is awesome! Great photos.
Warm wishes to us all for a good new year. ❤️
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@brutersmom hallo there. I do hope your holiday week is good so far. You're going to do 2weeks on, 1or 2 weeks off ? Hope you don't mind me asking but is it tried and tested? And you say the 5days on 2 days off option has yielded good outcomes for people in your other group? I've come to appreciate that I pick up very good tips from our shared experiences plus their outcomes. The shared experiences are incredibly helpful. I have to change my dosage because in Kenya we don't have Ibrance 75mg, and alternative treatments lines are not really that accessible. Alternative dosing is really my only immediate option right now. So thanks so much for sharing this useful information
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@brutersmom I love the flamingo blanket. Looks warm and cuddly.
@aprilgirl1 your tree is pretty👌 . Niiiice.
As we march on together into 2024, I send you both some warm sunshine from Nairobi, Kenya 🇰🇪 with love ❤
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@Rosebessie yes please send over some bright sunshine. We have had rain and fog for the last 3 days. It has been in the 50's for a while now here in southern PA. Temps are supposed to drop for the New Year. The only studies I have found were on the 5 days on 2 days off. There is one phase II study being done by Pfizer and there are some other ones. I search alternative dosing for ibrance. I have had other people suggest 2 weeks on 1 week off. That is also my hospital protocol for people who struggle with low neutrophils. I asked my MO about 5/2 and he said that he never heard of it. I would prefer trying that. I could be wrong but I feel like it would be easier on my body. He is supposed to be researching alternatives so I guess my dosing could change when I start back on after my knee surgery January 8th.
Have a great New Year. I am looking forward to a new knee and less pain in 2024.
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Hi @Rosebessie - yes, I am on the 5 days on / 2 days off cycle. My MO had not heard of it initially and did not agree to the switch from 3 weeks on / 1 week off until I had to take multiple extended weeks off. It’s been great for me.
and she also said I should go off the letrozole before and after surgery because of the risk of blood clots. She said studies don’t show letrozole can cause them, but because studies have shown tamoxifen can cause blood clots, they do it as a precaution.
hope this info is helpful for you.
happy new year everyone!
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@Rosebessie I will be starting back on 2 weeks on one off but I feel like I will still have issues. I could be wrong. I really want to try 5/2. I am worried about what that will cause with my risk for infection after knee surgery. Apparently I can't go to the dentist for 3 months and I need to take antibiotics the first time I go back maybe longer. How long have you been doing 5/2 and how has it improved your neutrophils? I am tired of hitting grade 4 and I feel like after 2 weeks I will be grade 3 and still need 2 weeks off.
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@brutersmom hallo, hallo, hallo.....we are getting to a New Year... how awesome 🤗. I've had a busy Christmas week with people I love so I'm all smiles. I hope you are enjoying it too. I'm still tickled by the flamingo blanket, ideal for that cooold weather. Incidentally, I've just sent the sunshine I promised. It's coming, but sadly I'm told it won't get there today. But let's keep a lookout and a smile eh 🤗💕🤣. I love the beautiful white winter snow, but not the cold temperatures that come with it.
Thank you for always answering my sometimes probing questions in such helpful detail. I really appreciate. It is by sharing that we learn. I've never done 5/2 or any protocol other than 21/7 but I'm looking for an alternative coz like you, I'm tired of hitting grade 4 Neutropenia after every treatment cycle. So, going by both yours and @sunshinedaydream 's experience, your hospital practices the 2 weeks off 1 week on; and hers does the 5 days on 2 days off; for low Neutrophils. That gives me options I can try before giving up on IBRANCE. I shall call my Oncologist on Tuesday and discuss both with him. I'm due to restart my next cycle this comingcwerk and I want to consider one or the other. Its going to be tough deciding although I'm encouraged by @sunshinedaydream 's successful 5/2 experience.
I pray your knee surgery goes well. I'm considering that sometime in the future for my torturous right knee. But you have to avoid dental appointments?? I guess that's to avoid risk of infection 🙃. Our issues just don't end eh. But at least you're informed and cautious. Big hugs 🫂
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@Sunshine99. Hope you are doing well we haven't heard from you in a while. Have they changed your treatment with your new mets?
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