Ibrance (Palbociclib)
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Glad to see you are home. Rest!!!!
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Although I'm off Ibrance I hope you guys don't mind me posting here.
I have an unopened bottle of Ibrance and more then half of another. What a waste
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Dianarose, glad you told Ms Cancer who is really in charge. Welcome home.
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Thank you, Openmind!
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Dianarose, I'm so glad hear you are home and see your post. You have and will continue to be in my prayers. Even if you're not on Ibrance, please hang around and let us know how you are doing.
Nonahope, I'm glad to hear the wedding was beautiful, I've been wondering about it. I'm so sorry though to hear about your ongoing need for fluids. I will keep you in my prayers also and I will keep praying for a cure for this awful disease.
Linda, thanks for the sunflowers, they are beautiful and a reminder that God takes care of all.
Hugs and prayers for for everyone!
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Dianarose....So very happy you are home! Continued prayers that you will get stronger every day!
Linda....Those pictures are so uplifting...thanks for sharing.
Faith...It's really a nuisance getting fluids almost daily. I've felt pretty good the past couple of days. I hope that's a good sign. I even managed to go to the grocery today. My nausea has been practically nil, so I've been able to eat. I haven't been able to get the Zometa injection due to the high creatinine levels. I know that drug really is hard on the kidneys. I hope I know more tomorrow and hoping and praying all the water I've consumed will give me some good numbers tomorrow. I will be "floating" into that office. Maybe, there's another option for Zometa?
Hope
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I'm not on ibrance anymore either but needed to come here to see updates on how you were doing Dianarose. 😊
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Quick question that I should have asked my doctor, but didn't
-- tomorrow I'm having the first follow-up bloodwork, my 14th day on Ibrance. I'm also getting my first Xgeva shot. I completely forgot to ask if I was supposed to be fasting; since nobody else mentioned it, I'm assuming I don't have to fast, but I just thought of it now and it's Sunday night... can anyone tell me if I can have something to eat in the morning? My appointment is at 10:00, so I'll be on the road by 9:15.0 -
Ciaci~They will ask you if you have eaten. You don't have to fast. I actually don't like getting anything shot or blood related without eating. They usually just ask that for the gluecose portion of the blood work. If you haven't taken Claritin, I recommend taking it today, tomorrow and from now on. It helps tremendously with the aches and pains that go along with the XGeva shot. I take it everyday because it helps with any reactions or inflammation! Good luck!! Hugs ~M~Onc never had a problem with it.
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Welcome back DianaRose!!
For the rest, CAR-T has for sure worked on one metastatic breast cancer patient, she was in bad shape and one and a half years later she's still stable and on nothing- will look up her story to post. Your mileage may vary, as they say, and she ain't typical, but wow, when it works!!!
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Don't see the link just now, but as I recall her doctors did a Foundation One test which revealed that her tumor over-expressed CD19 on the cell surface, which is how the lymphomas are targeted by CAR-T, but is unusual for breast cancers.And, she responded great! But still, this is winning the lotto kind of stuff. There is skepticism that CAR-T will ever be that good for solid tumors, although with ongoing research, that could always change. Good immunotherapy options may come sooner.
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Dianarose, so glad you are home. Feel better.
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Dianarose - so happy you are home. I hope you are feeling better and getting some much needed rest. I am no longer on Ibrance either but I follow this thread because I want to keep up with what it happening everyone.
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Ciaci-
They have never asked me to fast for either bloodwork or for shots. Hope you're taking your Claritin!
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Thanks for the info on not fasting for Xgeva - and yes, absolutely taking the Claritin! Started Saturday, and was told to take it until "at least two days after".
Have a wonderful week, everyone!
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Dianarose, so glad that you are home! Home always makes us feel a little better
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Is Xgeva the same as Zometa? I had one injection of Zometa when I first started this regimine of Femara/Ibrance, but haven't had the second infusion due to my high creatine level. I go back today for more fluids and blood work, but supposed to be set up with a kidney doc soon. This is all so confusing.
Hope
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I don't know the scientific answer to your question, Nonahope, but I do find it all very confusing. I wish that there were a simple chart available (and perhaps there is) which has bullet points showing the various types of drugs and what they do (anti-estrogen, etc), so that we (or at least I) could visualize what we're taking and what the various drug classes are.
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Joyner and Nonahope, I agree that there is a lot to remember. A cheat sheet would be nice. Does anyone know why MO's choose Zometa versus Xgeva versus Prolia? And how do they determine the frequency? I see some women on this forum with monthly Zometa, most with quarterly, and a few with semiannual.
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Midwest_Laura, I don't know the answer to that question, either. However, my first MO wanted me to have Xgeva every month for 3 months and then every 3 months thereafter. My second MO wants me to have it every month for 6 mo and then every 3 months, since I have extensive small bone mets in my ribs and sternum, and some in my spine. Interesting the disparity in MO opinion,
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We were out sitting on the porch last night and our crazy boxer was inside. Well he jumped up on the door and managed to lock us out. DH had to climb through a window. Never a dull moment lo
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how are you feeling today Dianarose? I do hope you feel so much better.
Just wondering how often everyone has blood tests with ibrance / letrozole? My regular onc is on holiday just now, but the first stand in I saw said every 2 weeks, then another said on days 8, 15 and 22 or something like that, with doctors discussion on day 28 - so that means a hospital visit every week. I hope this is wrong, I was so looking forward to only having to go every 2 weeks. I'm waiting to check with my regular onc, but notice the Ibrance website says every 2 weeks for the first 2 months then only every 4 weeks. Just curious what others do?
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My first MO only did monthly, even when I was starting Ibrance/Faslodex. I now have a NEW MO. My current one (and I am about to begin month #7 of Ibrance/Faslodex) tests every 28 days when I go in for my shots.
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My MO makes me get a cbc weekly, cmp and ca27.29 monthly.
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Hi everyone. I have been lurking here for months but this is my first post. This forum has been very informative and sometimes, has highlighted how little I know about this dreaded disease. Hopefully, I will be able to contribute, in a small way, by sharing some of my experiences.
I am about to start my eighth cycle of Ibrance and surprisingly enough, my MO has put me on a 3 month blood work and scan cycle. I am thrilled!! Getting stuck is one of my least favorite things!!
Like most everyone here, my biggest SE has been fatigue. Unfortunately, I have not had a loss of appetite but have gained weight on this combination.
I am being treated at Emory Midtown in Atlanta which is where I was treated 8 years ago when I was initially diagnosed.
This forum has become a daily lifeline for me...so keep up the great work!!! Hopefully, I will be able to contribute in a some small way.
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Hi Marsh, Welcome!
Is Marsh short for Marsha, or (I hope) Marshmellow?
The thinking on XGEVA has evolved rapidly- as women have stayed longer on Ibrance/Femara, there have been more osteonecrosis problems popping up, and MOs have been moving from monthly to every three months- initially after 1-2 years, now after 3-6 months, or whenever they feel that you are stable on the drug- I am 2 years in, and just now moving to every three months, but had extensive bone mets to get under control
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My MO does blood work every month when I see him. I think the first month, I was checked at two weeks. Xgeva started every month but went to every three months and last month, he said I could go to every six months if I wanted.
Marsha, I know what you mean about trying to contribute some small amount here. These ladies know so much and share it willingly with me and everyone here. I appreciate them so much. I read everything almost immediately but find so little I can add. I do have questions, though. With so many smart people here I'd like to bring up an issue I have and have not been able to solve. I got rid of the UTI I had a few months ago but the yeast, which was already there, just went crazy from the antibiotics. This happened to me a few years ago (2011-2012 way before cancer) where I had a recurrent vagina yeast infection that just kept coming back. I did two months of attempting to get rid of it with repeated doses of Diflucan and Monistat. Nothing worked. Then I went completely off sugar and simple carbohydrates for about four months. That seemed to do it. I stayed off sugar and carbs for another two months because I was just afraid to let the cycle start up again. Now, the cycle has started again. It's getting really annoying. I've been doing a week of Monistat alternating with a week of boric acid vaginal suppositories. I normally use those to prevent attacks. I don't think the cancer drugs are involved because this is exactly like the cycle in 2011. I hope it's ok to ask non-cancer questions but with such a smart group available, I just can't resist. Anyone know how to get rid of persistent vaginal yeast?
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Hi Blume. I have been on Ibrance/Letrozole and Zometa from the start. Initially I had blood work every 2 weeks, but when it showed I was fairly stable I was moved to once a month prior to starting my new cycle to make sure my counts are high enough. I have stayed on that regimen now for a year. I have never had any radiation or surgery as I was dxd stage IV from the start with only minor pain. I get a Zometa infusion every 3 months because of extensive mets to my bones, which have now resolved, but I continue the Zometa. So I go to the hospital once a month for labs and every 12 weeks to see my onc and for an infusion. I would ask your onc for the reason for your labs so you know. My onc tries to help me so my hospital visits are minimal.
Dianarose, I am so glad you are home and enjoying the more simple joys of spending time outdoors with your DH and your dog.
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Just left the cancer center. Blood work is holding out so far so no transfusion today which makes me happy. Will check again on Wednesday and then If good on Thursday I will get more A/C. A lot of time on the road as it's an hour and 15 minutes one way. Thank God hubby likes to drive.
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Hi All,
In terms of bloodwork, for the first cycle I think I had blood draws every two weeks. My neutrophils tanked so I had to have a dose reduction to 100 mg. He then had me do weekly blood tests for about 8 weeks (typically only a hemo profile but typically a full blood chemistry just before I saw him). Today I started my 4th round of Ibrance. I had about a month break due to issues with a lung infection. Currently he has ordered a full blood panel (profile and chemistry) every two weeks.
In my case it's a bit all over the map but initially he wanted to see how my blood behaved on the Ibrance and now I think he is trying to get a handle on how well I am responding to the Anastrozole. It's a bit tricky to judge response in my case as most of my tumor load is in the pleural lining of my lung. I do have a few bone mets that have appeared on my spine and ribs but it's unclear when that progression took place as initially when I was diagnosed I was on Taxol for a couple of months - colossal fail!
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