Ibrance (Palbociclib)
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Congratulations on getting Ibrance and welcome. $500K should go far as supplemental/extended insurance.
>Z<
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Great news on the Ibrance...and you WILL tolerate it well!
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Sadie~good news! Way to get what you need! I pray the ibrance will Be just what you and everyone else here needed. Had some dental work done today ! Yuck that drill sound. I am no wuss. But darn I hate the dentist!!
Sending prayers to all
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Sadie, happy to hear your news that you're getting the Ibrance. May it work wonders for you. It seems to be working great for me. I also have Mets to the lung and lymph nodes. Just got the results back from my PET scan last week and all is good, no progression! I guess you could say, I'm stable and stable is good. I finish rd. #16 tomorrow. Hope you tolerate it well. I had a lot of side effects in the beginning but they are mostly all gone now. No more mouth sores or nausea, hair stopped falling out and is getting thicker again. Nothing much to complain about except the ongoing fatigue which is helped by exercise. Muscle aches and pains that the onc. seems to think is from the letrozole. My blood work has always been ok so my onc does not want to reduce my dose from 125 to 100 mg. ofIBrance and since it's working, I guess I won't mess with success and just be a good patient.
May we all have long, long runs on this treatment.
Faith (in the future)
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How often do all of you get scans while on Ibrance? My MO does not use tumor markers.
Sadie, I'll be starting Friday so we can be newbies together.
Faith, How many cycles before the SE's got better?
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Hi Lindalou and Sadie. Welcome. I get Bone and CT scans every 3 months. My MO also checks monthly Ca 15-3, CBC and chemistry panel (includes liver enzymes). I had to reduce my Ibrance dose to 100 due to continual low platelets. Exercise helps greatly - I walk. This is cycle #4 of Ibrance/Letrozole for me and I feel fine. I pray it is a long ride for me. There are many long time Ibrance users on this thread. They give me (and other new users) constant encouragement.
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I have felt worse this week off Ibrance then when I was on it. Has this happened to anyone else
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Linda Lou, my side effects gradually got better. I felt lousy the first few months and then as time went on, things just improved a little at a time. It was just a couple of months ago that I realized that I didn't have mouth sores anymore. I still have the fatigue even though my platelets are ok. Everyone is different and I've read many women don't have any or very mild side effects.
I had my first scan three months after starting Ibrance which showed a reduction in tumor size and now they are six months apart.
Dianarose, I don't think it's uncommon to feel worse on your week off as I've seen others here say the same thing. I used to feel better in a day or two after in the week off, now, it's almost the end of the week before I start to feel better. I think we are all different and some months are different than others. There's still lots to learn about this drug.
Wishing all the newbies the best of luck in getting a quick reduction in your tumors and a long run for all of us with no or very little side effects.
Faith
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Dianarose-I also feel worse on my week off-more fatigued. I perk up when I restart the cycle.
Sadiesservant-Congratulations-really happy your coverage was approved. Hope Ibrance works well for you.
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Dianarose: While on the first 3 cycles of Ibrance125, I felt very tired by the 4th week (off week) and the first week of next cycle. I was much better on weeks 2 and 3. I just blamed it on my body recovering; especially the temporary decrease in red cell counts. My MO switched me to Ibrance100 when my platelets continued to fall with each cycle (under 70k). I feel much better now - so I am assuming the rbc and hemoglobin are not as low either! Hopefully, your body will adjust and maybe your next bloodwork will provide some answers.
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Dianarose, yes. I felt funky during the first several cycles during the week off the Ibrance. Best, MJH
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hi z
i live in aust at the the beach so have tried to always cover up with light weight longsleeve shirts to avoid using sunscreen.we have rash surf long sleeve tops for water sports even a small water visor cap swimm never swimm between 11 and 3 in summer due to high UV
have found that using a fragrance free liquid makeup is a good substitute..have used this in snow as well
I tried makeup with added sunscreen but face becomes hot .suncreen ok on my arms and neck .
Now i have to ensure i get vit D as levels were low when mets diagnosed so do 4 k walk in morning usually by 10 am when ulta violet rays are less damaging and dont cover up but wear a cap or hat.
Good luck Bright
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Thanks for all the responses ladies. I get so nervous when I am not on treatment.
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Dianarose ~ I always feel worse my week off, because unfortunately that is when I get my monthly XGeva shot which knocks me down a few days. But even before that I always felt Better on the Ibrance than my week off. I believe it's the fact the medicine maintains a certain level in my blood and when I don't take it, it dips and overall more symptoms from the cancer appear. Feel better honey. It takes some time for your body to adjust again tonew chemicals. Just keep drinking water to flush your system. And eat little meals all day long to keep your strength and prevent dizziness!
~M~
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LindaLu - I get scanned every 4 months. My tumor markers are not useful as they are very low and only go up or down a couple of points.
You asked Faith how long before the SE's get better. In my experience I dealt with a lot of different side effects that came and went in the first 6 months. It felt like every month I was dealing with something new. I'd get a rash one month and then it would be gone not return. I'd get watery eyes for 2 months and then that went away. The fatigue didn't really settle in until after 6 months but it's not bad. My hair started thinning around the 5th cycle and continues to shed and I'm in cycle 16 now. Although it appears to have slowed down a bit this past month. Everyone is so different in how they respond to treatments. Also I am on Letrozole with the Ibrance so it is hard to determine which med is causing which side effect. For the most part this protocol has been very tolerable for me. I hope it is for you as well and for a long long time!
Cathy
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Lindalou, I had scans 3 months after starting Ibrance and faslodex because my MO wanted to see if it was working. He is not big on doing scans without cause, but he wanted to make sure my newly-acquired liver mets were at least stabilized. I am now on a schedule of scans every six months. He will do scans earlier than that if I experience new or worse symptoms or my blood tests show anything suspicious. My tumor markers have only increased once, and that was when I had progression, so he does monitor CA 27.29 every month. If they show a significant increase, I will have scans.
Lynne
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Linda~ I scan once every six months unless I feel the need because of a new symptom or if my tumor markers are bad. Which hasn't happened and I am beginning my sixth month. I now have a thick head of hair longer that my DH now. I attribute most of the side effects to the anastrazole, because it specifically mentions back pain which is my main gripe. I am up for scanning in may. Early may and I am already having scanxiety!!! Ugh! But im holding to, my onc saying your tumor markersare plummeting! Thats My magic sentence! ~M~
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Bright - thanks for the tips on dealing with sun without sunscreen. We have lived for milennium without sunscreen so there there is a way to do it.
I've been doing scans every 4-5 months. The scan schedule is not so much a function of the treatment protocol but of individual factors ... how aggressive is the cancer, how reliable are your tumor markers (in your doctor's opinion), what were the results on your last scan. That kind of thing. My scan is next week, in the middle of cycle 17. Not too freaked out. Feeling like things are going well.
I am on my week off right now, after finishing cycle 16 on Saturday. I feel better than usual, but that is not always the case on my week off. One of my doctors does not believe, from what he sees in his patients, that the side effects from Ibrance are cyclical. Something to keep in mind. I've always assumed the side effects would get worse as the stuff builds up in my body over the 3 weeks and then improve on the week off. But 16 cycles into this, I have to admit that the side effect intensity has been independent of where I am in the cycle.
I've dropped to 100mg and overall I feel better. It's an option.
>Z<
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I am joining you girls on this journey. Mets to bones 7 years after first DX. Will be starting Ibrance soon. My onxologist called it Phenomenal. His word. Hope my side effects are minimals. You are all so inspiring and helping me.
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Welcoming all you new folks into our supportive circle today! We are all about hope and helping each other live well and I hope you picture yourselves in the middle of this circle with the rest of us cheering you on. Getting the diagnosis may have sent us to our knees and an approaching scan may rob us of some sleep but we put ourselves back together and rise to dance another day!
I started Cycle #8 of 100 mg this week and fatigue is my only side effect right now. I have Super-Fatigue on the few days after the XGeva shot. I was scanned at 3 months and had a "remarkable response" according to my oncologist. However, I have made up my mind to be happy with stable in the future. My motto has long been "if it doesn't grow, it can't kill you" so I'm sticking with that as my next scan approaches on May 30. That will be 5 months since the last one. If this one is good, I'll probably wait 6 months for the next one and keep pushing it out if nothing starts to hurt. (I've never been much on frequent scans.)
For all of you about to be scanned, I pray for really good news. For those of you taking those first pills, I pray you'll feel confident that you're getting the best medicine available for what you have. (We know you're getting the most expensive...but you're worth it!) May I recommend Turmeric and Bragg's Apple Cider Vinegar with The Mother to help prevent joint pain from the AI? I'm 8 months on the AI and so far, so good.
Love to all of you!
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pat~ you're precious!!!! Such lovely thoughts that I second !! Just ran 41 mins and I didn't want to stop. Only reason I did was I saw a neighbors jaw drop as I ran by them. (They know I have stage four cancer and they can't even pick up the newspaper without grunting.) god bless them. They are good people. But feeling great today. Pat I'm so with you about extreme fatigue after xgevea. Yowie!! Hugs ~M~0
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Micmel, I'm so glad you're feeling great and wowing your neighbors! One of these days soon I'm going to get back out there with the fast walking. I often wonder what mine are thinking when I bring the garbage cans from the street. I know they thought I was on my last leg back in the Fall. (Hey, I kind of thought that too!) About the XGeva...I can't complain too much about it as AFLAC classifies it as chemotherapy and sends me $300 for each shot. What a shame they don't actually reimburse it as that sucker costs $5500.00! (Thank you, Medicare & Mutual of Omaha!)
If any of you have friends who have had no BC treatment in 5 years (not even an AI or Tamoxifen), they can qualify for an AFLAC Cancer Policy. I signed on just 18 months before my second bout with BC which has turned out to be a very good thing.
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I love these little hints of what might be coming for us in the future. Mice may be the only ones benefiting right now but that was also once true with Ibrance. Here's to the future!! (I love the little heart and the red polka dots in the cell close-up!)
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Jeanne - Ibrance is very new. We're in a big experiment here. I'll tell you in 3.75 years whether it is phenomenal. But it is worth shot. Welcome.
>Z<
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Jeanne, I'm with your oncologist on that "Phenomenal" bandwagon! There are people who have been on Ibrance since the early trials....living, breathing 7-8 year MBC survivors! My oncologist (who also sees this as the wave of the future) heard the oncologist of one of those survivors speak at a conference recently. My Dr. Smith is so thrilled about this and the other immunotherapies that have put various cancers in remission or stabilized the tumors while letting his patients maintain their quality of life.
My BC metastasized to the bones after 22+ years. I'm expecting to live a really long time because of Ibrance and whatever is in the researchers' labs for the future. Grab our hands and we'll do this together!!
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Jeanne, welcome to our wonderfully supportive group! I'm with Pat...Ibrance is going to be our (and your) miracle worker! My BC came back in the bone (only so far) after 26 years. Quite a shock. Started Ibrance in early March. Haven't had a scan yet. Assuming that I'll have one toward the end of May or so.
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the cortisone did not work for me. Doc put me on Prednisone 30 mg that worked.
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I've just come through a big adventure, although not one of my choice. But, none of us are on this MBC site by choice.
I had my first Y90 procedure on Monday and I am alive and a little cranky today. Ha. I wrote more details on Y90 post.
I've just finished my fourth month of Ibrance and femara. I get a PET scan every three months. My MO does not do tumor markers for me. She doesn't believe they are useful in my circumstances. They have been done in past (during my 25 years and four DX) and never elevated.
I'm so focused on SE for y90 right now, I don't know what's causing what. I certainly have fatigue today but I'm just two days out. So I think I'm coming down as I come off of all the drugs that were pumped into me.
My PET show modest improvement after 3 months on Ibrance except for my liver mets. That's why my MO suggested Y90. Won't it be wonderful if the two types of treatment work well for me (and maybe some of you) to give me more time? I was able to stay on Ibrance throughout the mapping and first y90. The second one will be in a month.
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Hugs Grannax. You have a promising strategy and I expect great news from you as you complete this treatment and the results come in. I am always preaching exercise to reduce fatigue. A short walk is probably a good idea, but after a procedure like that, rest is needed. There is a lot going on in your body right now that would explain the fatigue.
>Z<
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Grannax, you go, girl!! You are so wise to try whatever medical science gifts you with to live beyond breast cancer. I've known people through the years who have done a variety of local treatments on the liver with great success. Now you are teaching us "The Y90 Way" and we will pull for you as your liver heals. I would imagine your fatigue has lots to do with coming off the steroids they give to reduce swelling. Curl up with a good book and know we are excited about this next step in your recovery!
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