Ibrance (Palbociclib)
Comments
-
Jaylea thanks for thInking of me and my scan results. The good news is that my liver mets are still shrinking after 7 months. Unfortunately there as some kind of system glitch that prevented my MO from being able to open my chest CT. I haven’t had anything show up in the past other than discovering the liver mets on the scan I had last June. So she doesn’t expect any issues but it sure would be nice to know. I’m trying to maintain a state of calm while waiting rather than frustration with the delay.
Grannax my MO also brought up my F1 results with the ESR mutation. She said that result means my cancer had mutated and developed resistance to the anastrozole I was taking after my initial treatment but that mutation is not resistant to Faslodex which is what I am taking. That confirmed what I thought based on my reading the report and other info.
0 -
My wife takes dessicated liver tablets for iron. Beverley International Brand. They may be helping, or it could be something else improving as we did see her iron levels go up, haemoglobin increase, etc. Hard to say exactly what to attribute things to when you get an improvement, but its worth a try. She does not eat red meat, so animal sources of iron aren't typically in her diet.
0 -
liwi. That's what my report said. I should be on faslodex not letrozole. But she did not change me or even talk about it as a possibility. That's one of my questions, if she would ever answer me. Grrr.
0 -
Thanks husband11, I will look for that
0 -
Jaylea.... good luck with your scan results. I'll be thinking of you.
Netta....great news. What a good feeling it must be to watch your TMs going down
Gracie.....thinking of you as ever xx
Georgiabirdgirl....I'm sorry you're dealing with those horrible early days right now. I concur with Gumdoctor in saying take it one day at a time and focus only on what is right in front of you at the moment. Don't think about the future, the future is in our imagination. This is the way I get through it and have all along. It's the only way to stay sane and find some happiness in each day.
I'm still struggling with low haemoglobin in my first week's break from Ibrance so I think I'll see if I can find those liver tablets you talked about, Husband. Thanks for that info. I'm so dizzy and weak it's not funny so, even though I have an oncology appointment on Wednesday I can't imagine my levels will be high enough to start again without a second week's break as usual. But life is good apart from that. I've been posting my blog quite often lately and people seem to like it. I've just posted my twelfth blog post and in case anyone wants to have a look it's at www.positivetrials.blogspot.com.au
Good luck and love to everyone as we navigate our way along the best we can. I love this thread. There's always someone to talk to.
0 -
Hello everyone from lovely Pitztal in Austria. I actually managed to go skiing, but I am barely able to. I only realize how exhausted/weak I am in direct comparison between my skiing skills this and last year. Today, I do a few turns and I am out of breath and my legs are very sore. I quit after 3 runs, because I was afraid to fall being so exhausted and therefore unconcentrated. Yesterday, I had quit a fall in the afternoon also caused by bad weather and sight. I landed straight on my right breast with the tumor, ouch. We were joking that now Evil Frank (my kids' name for the tumor) knows that he should better leave, because I am determined not to have my life controlled by him. On the other hand, it gives me an arkward feeling to kind of smash right onto the tumor.
0 -
NettaGER, kuddos for trying and making 3 runs. I was actually wondering how you were going to do. Skiing exhausts me and I had to quit even before my dx for fear of being run over by snow boarders. (I ski slow.) It is sad though. I love your humor.
0 -
Hello! I wanted to say hello to the group as I am new here. This is my first post. I have just started taking Ibrance & Faslodex 2 weeks ago.
I was glad to find this community and look forward to talking to all the amazing ladies here.
0 -
Welcome Mountain Lady!!!!
I love that we get a bit of geography with everyone, I am stunned at the images online for Pitzal Austria, wow Netta, just gorgeous!!! And terrific you the one can still ski there in April!!!
And MtnLady, Wikipedia says you have a musical highway containing grooves positioned such that it plays America the Beautiful if you drive on it at 45mph?!!!
0 -
Welcome MountainLady. So glad you found us but so sorry you have to be here. Let us know how you get on.
0 -
Thank you for the warm welcome Cure-ious & IntoLight!
Cure-ious--yes we do have a musical highway! It's along I-40 on the frontage road. Not sure how exactly it works, but if you drive with your right wheels along the cut grooved stripe, it plays the song. Quite fun!
I look forward to sharing our journeys!
0 -
Hi MountainLady, welcome to the Ibrance thread. This is a great group of women so even though we all hate what brought us together, we all love each other. You'll find heaps of support and information here. Keep in touch, even just to say hi. We'll be watching over you.
Netta....you did so well! Just to get out there and do what you did, although I'm sorry for the fall on the tumour...ouch.
I decided on Saturday I was going to drive my car again. I haven't been able to drive for the last five years and it sends me crazy not to have that independence. Besides which, I love driving. Oh boy, I was so rusty and I was such a confident driver. I asked my husband to come with me and Easter was a good time because here in Australia it's Autumn and most people tend to go away for the long weekend before winter comes along so the roads were quiet. I need a lot of practice just to go to the local shops but that's my medium term goal. I really won't go driving in traffic though because of the pain meds...I know my reflexes wouldn't be fast enough if something happened suddenly. Can't wait for the tumours in my bones to get lost so I can come off the opioids and then get going but that's looking longer term. I did it just to prove to myself I'm still in here.
0 -
welcome mountainlady! Sorry you’re here but it a great place with great people and information- comforting as well!
0 -
Dear MountainLady, I'm over in flat Memphis, TN and I-40 runs right through here so I'm sending you a big encouraging hug along that long highway to New Mexico! You'll be surprised how fast the months will go and soon you'll be an old hand at this Ibrance Dance like so many of us. I've been on Ibrance/Arimidex/XGeva since Sept/October of 2016. I've had nothing but good PET/CT scans since the first at 3 months. I pray that you have an easy time of it. Many here have zero to mild side effects. I see that you've had AC & T and I guarantee it's going to be much easier than those stinkers! Just know that Ibrance has less consistent side effects than those with fatigue being the one that often hangs on. I will keep you in my prayers as I do all on this journey with us.
Yay, Leapfrog on driving again! And, Netta, I cannot imagine having the energy to ski...Good for you! I'm sitting here a lot but I'm making art, working on a show for August. The Arimidex is causing some discomfort in my hands and arm but not enough to stop the work and I'm ever so thankful. Our Christmas tree is still up and we're kind of good with that! We're shooting for a take down in May!
Love to all of you and prayers for healing. I keep seeing more articles about the hopeful trials at Stanford and look forward to a cure for us all!
0 -
It is great to hear that we are so many who do not let mbc drag us down and prevent us from doing what we love. It does not matter if it is artwork or car driving or skiing, everything is equally great. I believe that successfully fighting this disease is strongly connected with a good and strong attitute. There might be bad days now and then, but it is important to have the good and successful days outweigh them.
I had a nice day of skiing again today and already feel that I am somewhat improving.
0 -
Netta, I am so happy that you were able to ski a few times this year. Two months ago, I skied for the first time in almost four years. I decided to start on the easiest trail because I wasn't sure I would be successful. As the chair lift reached the top of the slopes that first time up, I looked at my DH and said, "If I fall getting off the lift, I give up." Luckily, I didn't fall. When I looked down from the top of the trail, I felt my body tense up. I wondered if I would remember how to turn and stop. After that first run I began to relax and enjoy it. I loved the feeling of the wind in my face and the skis under my feet gliding through the snow. I felt free and so alive. I am hoping to get in one more trip before the season ends. On another note, I raked out one of my perennial gardens today. The crocuses are in bloom, and the tulips, hyacinths, and daffodils have started poking through the soil. Many of my plants have little signs of green leaves coming up. Spring is coming to NH. I can't wait to start digging in.
I had CT and bone scans yesterday. The wait begins.
Hugs and prayers to everyone from, Lynne
0 -
You ladies amaze me with your skiing, and encourage me to do more. Thank you!
0 -
MountainLady, welcome in our club! It's sad, but it's great that you found us. You'll find here all information that you need and most important, tramendous support .
Leapfrog, it so good to be able to drive again! My Dh always wants to drive and the only time when I do ,it's when the weekend I go back home from Columbus . I feel independent and that I can do what I want. I read your blog and I can tell you are a wanderful writer. Try to write a book and publish it.
Netta, you are such inspiration for us to live and enjoy our lives to the fullest. We use to live in Germany and I use to speak German fluently. I love your country and the people. Sadly I lost all my German friends, moving from place to place. Now I am full time babysitting for my precious grandson, but if we have a little bit time we want to visit Germany and bring all memories. Couple years ago we we went to Austria and enjoyed every single day there.
Good luck to everybody with the treatments and much love. Elen
0 -
MountainLady, welcome in our club! It's sad, but it's great that you found us. You'll find here all information that you need and most important, tramendous support .
Leapfrog, it so good to be able to drive again! My Dh always wants to drive and the only time when I do ,it's when the weekend I go back home from Columbus . I feel independent and that I can do what I want. I read your blog and I can tell you are a wanderful writer. Try to write a book and publish it.
Netta, you are such inspiration for us to live and enjoy our lives to the fullest. We use to live in Germany and I use to speak German fluently. I love your country and the people. Sadly I lost all my German friends, moving from place to place. Now I am full time babysitting for my precious grandson, but if we have a little bit time we want to visit Germany and bring all memories. Couple years ago we we went to Austria and enjoyed every single day there.
Good luck to everybody with the treatments and much love. Elen
0 -
50sgirl, I enjoy reading your post and watching you skiing, going on vacantions and getting the best of your days. When a few months ago I heard the horrible word cancer again, I thought my live is over. But you all gave me hope and courage to live my live in spite of hard reality. Me too can't wait for the spring. My Dh likes to grow vegetables and I like to eat them.
I am praying for you to get perfect results, nothing less ....!!
Hugs and love. Elen
0 -
Prayers Lynne, will be thinking of you!
I’ve never skiied. I’ve lived such a dull life out seems and now I kind of regret it! Oh well, it is what it is
0 -
Gracie, Your life has been anything but dull. My goodness, you have been through so much. My life is quite ordinary really. I find joy in simple things. I never tried skiing until I was 49. My children learned to ski when they were young. The schools here in town have after school ski programs, and my sons took advantage of those weekly trips to the slopes. When my DH and I started taking them skiing on weekends, I eventually decided to try it. I am not a risk taker by any stretch of the imagination. I never tried the expert trails that my kids ski and snowboard down with ease. Give me a well-groomed intermediate trail and I am happy. This year I asked my MO if it was okay for me to ski. He told me I could do it as long as it didn't hurt. I said it would only hurt if I fell, so he said not to fall!
Blueshine, My DH and I made a conscious decision to travel while we can. Time is precious. He was diagnosed with kidney cancer 5 months after my MBC dx, and he had terrible complications after surgery and was hospitalized off and on for 3 months. So far, he has had no recurrence. We call the last few years our bonus time. Things could change at any time, but we have been given this gift and try to enjoy as much as we can. It amazes me how much I appreciate little things now, how easy it is to remember to tell my family members how much I love them, how many of my grandchildren's plays, concerts, grandparents' days, games, art shows, etc I can attend, how often I can just listen when my friends and family need to talk. I really love life in spite of all the bumps in the road. Don't get me started on gardening. It has become my therapy and perhaps my passion. Oh, my next trip will be to Louisville, KY later this month. My 9 year old grandson will be there for a robotics world championship. Robotics is new to me, so on to a new adventure.
Hugs and prayers from, Lynne
0 -
I love hearing the stories of you traveling, skiing and enjoying life despite the challenges in our lives. Well, my suitcase is open, I am starting to back...all is pending on my first scan on April 23rd (my dear daughter's 9th birthday). I see the tears coming down already on that day...of joy or sadness I don't know. But if it's all good, we will be hopping on the plane to our long-waited holiday! We are thinking about Hawaii, but that may be too adventurous as I still have this fear about living....Hopefully, time and some positive scan results will give me the confidence again.
Today I felt the courage to meet clients and work as normal, only to feel dizzy, tired and headachy
Hopefully tomorrow will be a better day 
50sgirl -- best of luck to your grandson on his competition. Must be a joy to spend time with your grandchildren and family....
Mountain lady -- Welcome! I thought my life was over when I was diagnosed Dec 2017. But, by reading everyone's posts here, I am learning to live again!
Thereishope4us
0 -
Gracie: I am sure that you are also having a passion that amazes other people. When others are writing about artwork or gardening, I am the one to sigh knowing that these are skills I do not possess.
Blueshine: Gut zu wissen, dass hier jemand deutsch spricht. (Translation: Good to know, that someone here is speaking German). Maybe you will be the one who better understands some of my weird English sentences, because you recognize the German grammar underneath. I have the same feeling like you about refreshing memories. It has been a long time since I travelled to the US, hopefully I will manage to go there some time again.
0 -
Hi GracieM2007,
I do take an iron supplement and it has helped with RBC. I also take a Flintstones chewable vitamin which also has 100% of recommended iron. Any excess is excreted in the urine. I have trouble swallowing pills of any size so Flintstones chewable vitamins work good for me. Hope this helps.
Melissa
0 -
50sgirl, you brought back such a funny memory for me when you spoke of cleaning out your perennial garden. Back in 1994, when I was taking FAC for my first breast cancer diagnosis, I went out to clean the perennial garden I had spent years cultivating (even down to making my own compost). As I barely got started pulling the weeds, fatigue swept over me and I sat down on a rock to cry. My sweet husband came out and sent me inside, saying he was happy to finish for me. Hours later he, proud as punch, led me out to see the work he had done. Well, bless his heart, he had pulled up all the weeds for sure...and along with them every single perennial!! All I could do was brag on him and I've never told him what he did in all these 24 years! I have no perennials, life is still good and he's such a sweetheart.
Thanks for the memory!
0 -
OH Pat, I am laughing so hard. That was such a sweet thing for your husband to do for you, and a such a challenging task, too. I don't know how you managed to keep a shocked expression from your face. Wow! You have kept that to yourself all these years? I am pretty sure that I would have spilled the beans to my husband by now. Well, I will be chuckling about this all evening. Thank you for the story.
Hugs and prayers from, Lynne
0 -
And I fear that I would have suffered a heart attack on the spot. Pat, you're a good woman....and he's a precious man. My perennial garden means so much to me, and it's about to burst into bloom! Peonies are up to about 8 inches and leaping along every day! Can't wait!
0 -
Netta, leapfrog, Pat and 50s girl, thanks for sharing your stories. I love reading about other met sisters who go about living their lives as the same, or even better, beautiful selves that they were before the cancer came knocking.
I never learned to ski (it just wasn't much of a thing in my home country back in the 80's, or maybe it wasn't a thing with my family). But I did go ice skating with my daughter last weekend. Before cancer, I would have asked my husband to take her and I would have spent the time lounging on the couch with my laptop, trying to reach the proverbial end of the internet. But now I said "let's all go" and it was so much fun, and she was so happy to be with both of us.
The week before that, we went furniture shopping at Jordan's - if you're in Massachusetts and you haven't checked out their store in Reading, you should. They have this massive, elaborate tightrope/swinging bridge course (with secure harnesses) and I did that with her as well.
Going from 125mg to 100mg Ibrance made a huge difference in fatigue, which has been my only non-hematological side effect so far. I pray that it works, and works for a long time, because I want this life to last.....
MountainLady, welcome to the group - long may you stay with good results.
Lynne, good luck with your scan results. Fingers crossed that they look amazing!
0 -
Great news from my MO today. She greeted us personally at the reception desk, and I thought, oh crap, this is bad. Usually a nurse takes vitals and ushers me into a room. She must have seen my face because as I passed her, she said, don't worry, it's all good news. Lymph and lung mets are stable, and bone mets have actually improved, which she was most impressed with. When I told her that I had seen a suspicious mass on the screen as I was getting the bone scan, she said dryly, "that mass was your kidney." Dear friends, I felt you all behind me as I went into that appointment. I can't tell you how much your support means. And for you newbies, know that Ibrance can take a while, even months, to really kick in. (I'm on cycle 9.)
Elle, I hope you get relief from you swallowing issues. Pre-dx, I had similar trouble that resolved after I started treatment, which made me think it was the lymph nodes causing the trouble.
Netta, 3 runs is about all I can do too. Leapfrog, congrats on getting back out there. I love hearing you take back your life in so many ways. PatgMc, you can do what my mom did one year (single mom, 5 kids) and hang Easter eggs on the Xmas tree!
Lynne and Thereishope4us, sending scan prayers your way. Thereishope, you're still processing. Go easy on yourself, and with time and some good news under your belt you will be posting pictures of Mai Tai's from Maui.
0
