Ibrance (Palbociclib)
Comments
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Joyner and Grannax, I love your beach stories. I live by the beach and love to feel the force of the waves. The roar and crashing waves of the Pacific Ocean drown out all the other voices inside my head. It is my go-to spot for stress relief. We sail in the bay near our house about once a month. We have had to scale the speed down because the heeling hurts my back, but sailing slowly is peaceful. My DH and I have our best conversations on the sailboat.
Have a blessed day everyone!
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My wife just got results from a recent MRI, and her liver mets are stable. Her tumors were both discrete and diffuse, so its hard for them to make out any further regression, as there is so much scar tissue present. It creates a pseudo cirrosis effect. In fact, the radiologist has asked if she actually has cancer, and not cirrosis, but as there is no other known cause, they attribute the appearance to the cancer. They could see if the large tumors grew, but they can't really discern any further recovery as the image is so messed up looking. Quite remarkably, and against the predictions of her oncologist for the last two years, both her tumor markers continue to fall. Especially the CEA now. She has been on ibrance for around 14 months now. Before that, it was xeloda.
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Hi Husband11, I'm so glad for you guys! That is great news. Your wife and I have communicated via messaging, she is a very sweet and kind person.. All the best!
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day 5 on ibrance and im not seeing any side effect yet,,maybe a little soreness in my scalp...seeing dr tomorrow for a review...
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Husband11, I'm down in Tennessee doing the Ibrance Dance for your wife and for you! My friend who had MBC liver mets (14 tumors) 20+ years ago still has those odd places showing up on scans. At one point (after 5 years) the radiologist expressed doubt that they ever were mets but they were. She has had periods where they grew again and she tried whatever new treatment had come on the scene. She was pregnant when the liver mets and bone mets first appeared and that baby is now a sophomore in college. God is good. I pray that your wife continues to do well.
Love from PatG
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Husband, I was just thinking about you and your wife yesterday and that we hadn’t heard from you in a while. So glad to hear the good news!
Buzzy, hang in there. Praying that the Ibrance dance will be good to you, as it is to so many!
Pat, my husband, Austin, has requested that you crochet “This side up” on the front of the Speedos, please
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Ha, Joyner! If I put "This Side Up/Handle With Care" it could so be misinterpreted!
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Joyner, which side does he want to be up?!
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Just checking in. I finally got my pulmonary function test results. In this day and age I communicate with my PCP by the patient portal. They messaged me the results, but of course I had already gotten the results myself. My PCP said they were normal. I read on the report "diffusion capacity reduced-mild" and from what I read with Mr. Google this could be an indicator of asthma, COPD, etc. Thank goodness it is "mild" but I didn't read "normal" on the test results. My PCP said in the message my shortness of breath could be from weight gain--10 lbs in 1 yr. To diet and exercise. I am 5'1 and 140 lbs. I messaged him back that I am not obese and would a 10 lb weight gain cause the shortness of breath with minor exertion-walking. I also told him that others with MBC and on Ibrance ( you all ) have reported shortness of breath also. I have been with my PCP for YEARS (20 +) and I like him, but I wonder do docs really know anything out of their comfort zone. Basic advise - diet and exercise. Think outside the box. Learn about new meds coming along. I do plan on walking more, I live a pretty sedentary lifestyle. We shall see.....
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Pat, front please, so that we float face-up, if at all possible. I saw what you wrote earlier, by the way, and I agree entirely!!
Candy, I'm virtually certain that my SOB is from either Ibrance or Faslodex. I just didn't have it before. However....I'm grateful....
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JoynerL.....that was a funny story about the white shorts. Made me laugh. Thank you. I am sure at one time or another we all do embarrassing things.
Just finished first 21 days on Ibrance. After 2 weeks, my ANC was .88 but was told to continue week 3. Had blood work today and WBC was 1.6 but did not get the ANC back. On my week off, so will wait until next Thursday to see if I am to start back up again.
Love all your stories, accomplishments, humor, and successes. Here's to you all!
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Husband, great news on your wife’s scans!0
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Želim sve da Vas srdacno pozdravim iz drzave Bosne I Hercegovine Usamljena sam u terapiji Ibrance plus femara tako da samo vasa iskustva na forumu koristim i puno mi znace Zelim nam dugo druzenje
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Husband 11 I can't tell you happy your news makes me. I hope that you both are celebrating!
I know from my own case that it can be very difficult to assess what's happening in the liver. It sounds more likely than not that your wife is seeing a terrific response the regimen!
Also I hope that you both are also taking great consolation at the pace of the research. The Aurora A link that was discovered a few weeks ago has me really excited.
Love to you both!
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Husband, that is indeed great news. My onc told me after my liver mets healed that she should have biopsied them to make sure they were cancer. But if not, then what did happen to them? Why are they so reticent to believe the results?
Candy, hang in there. Go by how you feel. I wish I were in as good a shape as you! They continually tell us we are obese but when we do lose weight, they are anxious because it could mean we are progressing. Arghh!!! My DH doesn't want me to lose any weight for that reason. I gained 15 pounds in 2 years, but now have learned how to stay stable.
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Quick question about a weird new symptom I'm having... The second toe on my left foot feels like it's asleep - all the time. Not numb, exactly, as I can feel it, but sort of pins and needles-y. I also have water on the knee and sciatica, which are weight-related and not cancer-related, so it may be because of that, but since my onc decided I didn't need monthly blood tests, I've gotten paranoid about every little thing!
I did do a search on here about it, but almost everything I found was chemo-related...
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Joyner; What a beautiful trip you are on. I'm so happy for you as I can't imagine a more relaxing way to forget all about cancer. Watch out on Lake Ontario too as the waves can get really high and the weathers been weird this year. However, if you're wearing Pat's pants you'll be seen easily to track. I have so enjoyed all the humour on the site. I get quite concerned reading other sites and am so happy here because of the wonderful people. Husband I'm delighted to hear about your wifes good news. I don't have liver mets but I only have CT scans and am always nervous that other mets could be missed. I hear so much about PET scans but never have had one and likely won't.
Candy; I was told it could take 10 years from my first treatments (AC Taxol) to discover what heart effects they would have. Having also had carboplatin and taxol (again!!) I sort of blame these chemo's for my shortness of breath. Also, my father and brother both had/have heart valve issues so there's the hereditary issue as well. Perhaps this has more to do with these kinds of issues than Ibrance or Letrozole. I never really recovered my strength after the ovarian cancer treatment. All the best.
Cathy
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Cathy, about blaming chemo for your shortness of breath - I have never had chemo, but I have SOB, with exertion. I blame it on my lung mets, which have disappeared, but which may have caused some irreparable damage to my right lung. I don't know if everyone with SOB has lung mets, though. Would be interesting to find out.
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Hi Candy, I'm on Ibrance and Letrozole since mid May diagnosis. I'll be interested to hear if your SOB is caused by the meds since my journey to cancer started with shortness of breath, a large Pleural Effusion on one side. I thought the flu was just wearing me down all winter. NOT! It must be very difficult for the Onc teams to find the right mix of meds, therapy, etc for us given how we are all so different and the cancers show themselves differently in each of us. How do you really know what's causing what? I've had 5 Thoracentesis done since the diagnosis and each time I breathe better for a time. But on the whole my stamina has dropped a lot. I am obese though, have been all my life. Since I quit my part time job in May I also live a very sedentary lifestyle. It is hard to power walk when breathing is so difficult. And now I am also experiencing swelling in my legs due to circulatory issues and Lymphedema. Varicose veins have been one of my "best features" all my life. But this is different. What a mixed up mess my bod has become! And I'm just 3 months into this. Anyway, I appreciate all the information shared here and if there is anything I can do please let me know!
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Cathy, thanks for the heads up on Ontario! I do hope that Pat's shorts arrive in time. We want to be visible for sure. We just left the boat in Wisconsin for final tweaking on electronics. We'll head back on Tuesday and hope to depart on the great trip on Wednesday. Straight across Lake Michigan from Sturgeon Bay.
NineTwelve, I have some shortness of breath, but I do not have lung mets. At least, not to my knowledge. Mine are all bone related.
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ninetwelve. I have SOB w exertion , mainly stairs. I do have mets in my lung. My MO had the audacity to tell me the SOB has absolutely nothing to do with my lung mets! She says that since I don't have a daily exercise plan that is the reason for SOB. I said that's odd because I never had SOB before my DX. OMG. I've decided to ignore her about that subject.
So, I'm sure she would tell me it has nothing to do with Ibrance either. I had about five sinus infections before she believed it was an SE of IL for me. Now she's a believer on that subject.
Joynert I notified my friend on the eastern shore of Maryland to watch out for you. Oh, and I sent her a pic of the shorts you'll be wearing. Ha. Your big adventure sounds exciting.
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Grannax2-
It just drives me crazy how doctors treat us sometimes. As I said in my previous post, just basic advise from MD. Diet and exercise. Think outside the box. Maybe he doesn't have a lot of experience with MBC and these meds, so do research like we have to do. If you now have a patient in your practice with these issues bone up on the subject. After all this, we all deserve OUR doctorate degrees !!!! And the pay !!!!
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Dear itdoesntfeelreal,
Welcome to the BCO community. We are sorry that your breast cancer and all of its complications have brought you here but glad that you reached out to our members to share your own story. We hope that you will continue to benefit from the shared experience of others here on the boards and make good use of the information offered. Please stay active here and let us know if there is anything we can do to help you to navigate your way around. The Mods
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I agree Candy. I think we all should be given an honorary doctorate. But, the pay! Most of all I want the pay! 😷💞
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I've just been googling shortness of breath. Apparently, buildup of lactic acid can be one cause of SOB. And it just so happens that cancer releases lactic acid. So does a sugary diet and a sedentary lifestyle. So theoretically, exercising more and staying hydrated might help with the SOB, if it's related to the lactic acid problem.
Also, avoiding desserts and alcohol. (If I ever decide to test that theory, I'll report back on my outcome!)
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Just dropping in from travels in Portland, OR to say hello to everyone.
I am on a 2.5 week Ibrance break due to travelling and feeling pretty "normal" whatever that means
Haven't had scans since last November and thinking that maybe I should at some point? My MO and I have an agreement that we will scan if any new "lumps or bumps" show up. In the meantime, it appears that the treatments are working as the breast tumor is no longer palpable and the bone tumors were sclerotic at timing of scans in November. It is a funny place to hang out!
I am so appreciative of you wonderful people and the humor and silliness and support. I have tried other sites but this one is the only one that I can look at each day and become uplifted rather than downtrodden.
Hugs to all!
Brenda
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Hi LovefromPhilly, I'm glad you're feeling well and getting a break from I/L.
I'm only a few months into this but I hope to join you someday in that funny place to hang out!
I'll bring the snacks 😀
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NineTwelve-
I didn't know that about the lactic acid. I never have had mine tested to see my level. As far as the sugar, I am not giving up my sweets. That is my vise. I don't smoke, drink, or party. Remember, I posted about the Amish Donut as big as your head. Yesterday I went out to eat with a friend and for desert I had Chocolate Coke Cola cake warm with a scoop of vanilla ice cream. YUM !!! Cancer is not taking the joy of eating deserts from me!!!! I am going to walk more. Maybe buy a treadmill for my house-- no excuse of weather or having to go out to the gym.
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MuddlingThrough - I also hope you get to this place too. It definitely provides some breathing room! Patience and compliance to what my MOs and ND recommend have been key for me. There have been ups and downs for sure and some SEs but I am SO grateful the treatments are working and hope that they continue to do so.
Hang in there! It takes time for the treatments to start working. I will definitely share snacks with you! I would like to request chocolate chip cookies!!! HUGS!!!!!!!!
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Ah, candy-678... warm chocolate cake. You're speaking my language!
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