Ibrance (Palbociclib)
Comments
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hold tight jaycee.......and good luck
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Thanks for your good wishes, friends.
Faith, one of my counts was low (one of those sub-categories I can't remember!) and I was so much more fatigued that my oncologist suggested we delay starting for an extra week. I had already discussed that I wanted two weeks off in August as I have to make that speech. He says he's good with that. That week was an amazing gift!
Z, I wonder if one of those counts took a drop and left you feeling this way. I think our lady, Ibrance behaves erratically (is that a word?!) so we never quite know what to expect. I hope you feel better tomorrow.
masonsmawmaw, here's to a giant hit of someone else's blood! I'm really glad you're feeling so well.
Lillymillie, I love picturing your little whitewashed church and I thank you for those prayers. I'm so happy God has blessed you with those good scans. It sounds like what you have is even better than being stable since the fluid is reducing, right?
Lynnwood, I have days when I wish I could be too busy at work to worry about anything but I'm still glad I retired. I'm so amazed at the Julies of the world who can keep working (climbing back up those steps she comes down, walking that dog uphill!) and I'm very thankful to be 67 years old!
I have a ritual of praying for all of you as I lie in the bathtub each evening. I pray for healing and happiness and for the researchers hard at work. I'm sending love your way.
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Pat~ i always enjoy reading your posts. You're a lovely woman. Hope no one else is stuck with this awful stomach bug, I have seemed to aquire. How I have no idea I don't go anywhere to catch anything. Ugh! Just in time my XGeva shot next week. Then I'll be sleeping for four days and am not wanting to have monthly bloodwork done again. Boy those months go by fast! The longer I am on this ibrance the more fatigue I seem to feel every month. Is it just me?? Prayers for everyone. M~
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Janet - I was able to fight off a UTI while staying on Ibrance. If it makes you nervous to be off ibrance, you might consider that in the future.
Lynn - Thanks. I am doing okay. Recovering slowly from my falling off my bike at a high speed. But that feeling of not being superwoman, not being who I want to be for my husband and kids, is hard. In the past I would have worked through this. Tried to that yesterday and nearly collapsed.
Pat - thanks. I did get my bloodwork today. My counts are not high but not bad. Other things going on though could be the issue.
>Z<
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PatG, I'm doing 3 weeks on then 2 weeks on then 3 weeks on etc. When I do three weeks, my white count gets too low then I have to wait an extra week. After only 2 weeks on, my count is good enough that I do 3 weeks on again. I might ask for 100 dose but alternating 2 weeks with 3 weeks, gives me more medicine over time than just straight 3 weeks with 100 mg.
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Just found out results from my Thorensis...draining liquid from my lung. There were cancer cells in the liquid, but Onc is not too concerned because my tumor counts are still going down. She will schedule a Pet Scan in 3 mo and judge from there. As far as my bone mets they are so faded on the scan you can hardly see them. I guess that is a good thing. Right now we stay the course with Femara and Ibrance.0
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jaycee49, I understand your anxiety about being off the Ibrance but I've been on it straight through 10 cycles with no breaks and it was just time for one. My body knew it, my head knew it and my oncologist knew it.
After my first mets diagnosis in 2012, I did big chemo again.....Carboplatin/Taxol, then Femara (achieving NED from the chemo). The Femara made me more miserable each month until at 18 months, I told my onc I had to stop. I told him I accepted the fact that I was going against his wishes and that I was choosing quality of life over the length of it. (I was pretty close to needing a walker and was losing the use of my art-making hand. My brain was a muddled mess.). Completely off treatment, I had about two years before I had a scan that showed the bone mets and I've never been sorry.
All that to say, we are all at different places in this journey. At my initial diagnosis more than twenty-three years ago I thought I had one foot in the grave. My mother had died two months after diagnosis with malignant melanoma and that's how long I thought I might have. But God has given me more than two decades instead! I'm willing to work with my oncologist to get the best from Ibrance while also making the most of my days even if the number of days is shortened by my decisions. Does that make sense? May I add that I have confidence in this drug being a Magic Bullet for many, especially when added to others now in development?! Many of us may just live to die from nothing someday, right?!
Given that I'm 67 and have seen my daughter grow up and have a family, knowing that my husband is a man of faith who will be okay when I'm gone, and being very sure of the fact that I'll one day go to sleep with people I love here and wake up with others I love in Heaven, I'm just going to follow my heart on this. I do have some moments of fear but they pass fairly quickly. (Well, I know I feel better because I'm downright wordy tonight!!) I wish you peace.
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PatG, thanks for your response to why you're taking some extra time off Ibrance, it helps me to feel more comfortable taking time off also. My blood work today, came back ok with tumor markers still stable, bouncing around in a narrow range so all that is good for now. As you may remember I wanted him to switch me to arimidex from letrozole because of the foot pain and muscle aches. He didn't think switching would make any difference, however he did say it might be a good idea to take a break of a few weeks or a month when we take our trip to Italy in the fall. He said that way I would feel better and then we would know if it's Ibrance causing my problems. He also said the women who are able to take Ibrance for a long time ( more than 22-24 months) are the ones who take a break on occasion and since I'm starting rd.# 20 on Thursday, it's time to take a break and give my body a chance to recover a bit. He didn't get any arguments from me on taking the break, I can hardly wait. He also told me to try some Motrin for the foot pain and said it wouldn't hurt anything bc my platelets are still good. So, we'll see if I can get rid of the foot pain with that and massage and ice.
PatG, I can certainly understand where you're coming from in regards to being able to accept a shorter but better QOL now because of your age and stage of life and I feel that way too since I'm even older than you but unfortunately I doubt my DH would be ok if he had to watch me die. He watched his father die when he was only 17 and it really was awful for him and well as loosing his only brother to cancer when he was only 60. So, one day when I asked him what scares him the most, his answer was Cancer. I feel like I have to stay alive for him right now, but that's the only reason since my kids will be fine. I have a lot of faith in God and while he believes in God, I'm not sure he trusts Him enough yet to know that things will be ok.
Z, I'm so sorry for all the pain you are dealing with from your fall off the bike. I know it is so much harder to accept the crap that goes along with these drugs and not feel as young or as good as you're used to since you are so much younger than either PatG or I and in a totally different stage of life. As we grow old it's a little easier to accept some of this stuff as just part of the pains of old age but you're not there yet. You're certainly not as ready to slow down as those of us who are older. I know none of what I've said really helps you feel better but I know your fighting spirit and I believe you have an excellent chance of winning this fight and and feel good doing it. However, sometimes you need to be good to yourself and take it easy while you heal. Ok, I'll get off my soapbox now.
Have a goodnight' sleep everyone and PatG, I'm here praying right along with you for all of us and for a cure for this beast.
Faith ( in the future).
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Faith, for the longest time I thought I just couldn't leave my husband behind, that he wouldn't be okay. (We've been married almost 49 years and dated for 5!) Then I saw a speaker who was a BC survivor and a music therapist sharing about about her own fears. She spoke with her minister about it, saying she had peace about dying, knowing God would take care of her but she worried about her husband and her children and how they would cope. The preacher said, "So you think God would take care of you but just leave your husband and children hanging out to dry?" I've remembered that for years and it comforts me to realize God will hold my Mike through everything. When I got the new diagnosis in September, we started reading "Jesus Calling" together every night. I remind him that the night after I die, he'll pick up the book, read the day's passage and just face that day. I will add your husband to my prayers (right after I pray you live to be 100 and lead the games at "the home"!) Sleep tight, Faith.
(Correction: I just googled Deforia Lane's breast cancer story and realized I remembered the story wrong all these years! Ha! I got the gist of it right, just the wrong words and no minister!).
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God love you Patgmc..........I understand completely what you are saying........
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Patg....when I was diagnosed with MBC in April 2016....my neighbor bff gave me "Jesus Calling" and it saved my sanity with this diagnosis. Thank you for always sharing and being candid with your thoughts.
Z....feel better..you are always so upbeat...please stay positive
One day several months ago...can't remember if it was my off week or on Ibrance that week. Anyway, for some reason I had a day that was full of energy. I said to my husband this day feels like old times before MBC. It was surreal. May we all experience a day like that every so often to keep us sane and with hope.0 -
Faith -thanks. Your words help a lot. So does some rest and a good night sleep. I a bit of energy last night. Woke up with enough zip to do may walk in the morning. Mentally, there is a big difference whether you are getting worse or getting better. The absolute level of energy/health is sometimes not what matters, its the direction of the change.
>Z<
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Here's a clinical trial looking at a 5 day on, 2 day off schedule for ibrance.
https://clinicaltrials.gov/show/NCT03007979
>Z<
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Zar- very interesting study. Saved it to show my MO tomorrow. I always feel worse the week off so maybe this would be better. Thanks for sharing.
Has anyone ever had bad flank pain when laying down at night and goes away when you get up. All that keeps running through my crazy head is I'm going to end up with two naphostomy bags 😓
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Has to raise hand and question mental strength anymore. I feel like I am going crazy on some days.
My pain varies. And yes if I lay in bed too long I feel worse. Pain included. Hugs to all you lovely strong ladies. ~M~
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Pat and Faith - love reading your posts! I am going to get that book for dh and myself. I will be 60 next month, I make decisions based on quality not quantity. I honestly did not think I would still be here, so I'm extremely grateful for that, but not willing to do some treatments that really affect quality. I have always felt like i have made the best decisions I could with the information I had at the time.
Z - Glad you are feeling better today! Thanks for the study info. I am taking it to mo on Tuesday when I get my blood work and pet scan results. I feel in need of a break. I am 23 cycles in and nothing but tired.
M - I love music! When having a rough day, sometimes I turn on Phantom of the opera full blast and sing along. That almost always makes me feel better. Or Pink Floyd, Dark Side of the moon. I know. Totally different! If you listen to my playlist, you would see a wide range of music. Hope this helps!
Hugs and prayers everyone
Claudia
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bigbhome~ Love Pink Floyd and I was a 70s child so I can relate. Good music back then. Yes it was and I didn't have cancer!! Hugs to all ~M~
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I have no clue when my worst days will happen. It does not seem to have any logic, last week, my off week, was bad, yesterday was horrible. I was completely wasted after being at the grocery store for less than an hour.
As you know, I lost my husband to pancreatic cancer seven years ago. As I read your posts about how it feels as you wonder how your husbands will survive after you re gone, I can identify in a different way.
I wish he was here every day. Sometimes, I hate to admit, I get jealous of those who still have husbands. We were married forty years, I still feel "married" in that I don't want to marry again. When MBC was DX eight months ago, it became infinitely harder to be a widow. I still live in the home we built over thirty years ago. I realize now how much he did to keep up with house things, car things and earning money things. Not to mention, having a companion living and breathing every day with me. Some of what I've written here will probably describe how your husbands will feel after you're gone.
All that said, I have survived and have learned how to be a widow. I've even learned how to be happy and enjoy my life without regrets. One of the changes that has worked for me is that I've made my world smaller. I've focused on my children and their children the most because that's what I enjoy the most. Building into their lives enriches me. Also, my extended family is important to me. I've found that the friends I knew before I met Bob are even more meaningful to me than they were before. I have kept only a few of my local friends. I kept the ones who I love the most, the ones I talk to everyday. I know their loyalty and they know mine.
I'm not saying these changes will be the same ones your husbands will choose. But, they've been the healthiest choices for me. I haven't mentioned all the "God things" that are a huge part of my life because they are too numerous to count.
Since MBC, I am very dependant on all of you. Everyday I read your posts and draw strength from you.
Okay, that's enough serious stuff. Let's all pretend that we are Julies today! We do need to re-script that commercial ASAP.
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Grannax - the fact that i cannot predict my energy level is the hardest thing ... I scheduled a work day for Monday and it turned out to be a dip. I soldiered through and got half of what I needed done done. Today I am doing okay ... went for a walk. I can't make and keep commitments ... which makes rethink who I am and what kind of relationships I can have. I am (or a was) a person who you could depend on.
>Z<
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Grannax~ I am touched by your post. I am so emotionally distraught at the thought of leaving him. Some of the things you said, are exactly what he has said to me. It gave me goosebumps!
Z~ you're a fighter. Everyday there you are lending encouragement and talking us down. I hope you're on the mend. I feel the same thing about being someone my DH and kids could always count on. I grieve that loss as well. Keep feeling better ! ~M~
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Z - Thanks for the advice. I will definitely not go off Ibrance again for a UTI. This time, I didn't want to defy my MO because he thinks that's all I do. I didn't think it would hurt this one time and it probably didn't. I was just nervous the whole time.
Pat and Faith - We're at a similar place lifestage-wise. My 32 year old son just married this past Nov. He and my husband will be fine. I just posted my whole cancer story on the "tell us your stage IV story" thread. (It was wonderfully replied to by Claudia.) In that post, you can see that I stopped chemo after two rounds when I was supposed to have six. I also stopped taking Tamoxifen after six months. Both of those were for quality of life issues. It doesn't make sense to me to hang around if you don't feel well enough to enjoy anything. I'd like to do what Kandy suggests: "enjoy the moment," every single one of them.
I guess I don't understand why more people don't drop down to 100 or 75 mg if the SE are that bad. Do the trials show a big difference in efficacy between the dose levels? If they did, I didn't see that.
I had lunch with my 80-90 year old lady friends. (I met them volunteering at a retirement place.) They always cheer me up. Two of them are best friends. One can hardly see, the other can hardly hear. The two of them together are a force. So much fun.
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I always email the one lunch friend who does email after one of our lunches. She's 90. I told her I was worried about my med that is being delivered today because it is so hot here. UPS trucks get hot in the summer. She said, yeah, I know. I never order chocolate in the summer. She went from meds to chocolate in a heartbeat.
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Friends, I am so on top of things today. I'm Julie! A new support group for BC Mets survivors announced it was starting Thursday at 2:00 PM. I leaped (?) out of bed with half an hour to spare, put on make-up, got myself out of the PJs and am ready to go.........except today is WEDNESDAY! Pitiful!
Z, I'm glad you're better and so hope that continues. Thanks for the link to the different Ibrance dosing trial. I sent it to my oncologist's nurse for a look. It makes perfect sense to my not-terribly-scientific mind that it would work.
jaycee49, I will go and look for your story. I agreed to write a brief one for our Komen affiliate to publish this week-end and I'll try to link it here. I'd love to read more about all of you as I feel we are so much more than the facts about our illnesses.
Grannax2, I know your Bob is proud to see how well you've soldiered on. It has to be hard when you have loved someone for so long. One of my prayers is that my Michael will find a companion who will take care of him as he ages but he's very close to my daughter and granddaughter and I know they will always be there. I'm sure God must laugh at me as I try to manage things even after I'm gone! I've got to teach this man how to do laundry or buy him disposable clothes!
For you Pink Floyd fans, one thing Mike is going to love is being able to turn those songs up loud when I'm gone. I like some of them but am not a huge fan. I did surprise him and take him to the PF documentary a few years ago (which he loved). We've stopped going to live concerts and he has never been able to see them in person. I did hear that the Eagles are doing a tour so I might just summon my inner "Julie" and go one more time!
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I finally googled the commercial with Julie. My mornings are not like hers lol. When I get up I have to hold on to my leg bag because it's full then take some Med's for my stomach. She obviously has never lost her hair because it's long and not once did she even yawn never mind take a nap .
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Great conversation, ladies!
DH and I have been married for 25 years. The kids are grown and out of the house. I haven't worried too much about them regarding the "after I'm gone" time. I've been consumed with the "now". I'm a better wife now than I used to be. I take every opportunity to tell my DH how much I love him, to thank him for his help around the house, and to appreciate all of the hard work that he does. We both travel a lot for work, but when we're not traveling, we both work from home. I often run down to his office for a little squeeze and a kiss. (Even if he's in the middle of a conference call.) I look for opportunities to cuddle on the couch (regardless of the show that he's watching), and make a run to the hardware store with him, just so we can be together. I feel like I need to get a lifetime's worth of love in to the time we have left. Retirement is still 15-20 years away for us. I'm angry that I may not get my time to relax in the rocking chairs on the front porch, watching sunrises and sunsets with him. So I have to get those moments in now. If all goes well, we will have to buy new rocking chairs in 20 years because I'm still here and we've worn out the old ones. If things don't go well, at least I'll use my time to wear down the wood a bit on those chairs with DH and enjoy long talks about how the grass is growing.
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I am going to compile these on my thread!i am making a collection of our love stories! ~M~.
My husband, My life, My Love My family, My Cancer is the stage four thread. I want those love stories to be a place of something happy gathered to show the other side of the love we share with those closest to us. Tears!
~M~
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Z - I think that has been the hardest part of Ibrance for me. I make plans and have had to cancel a lot of times. I believe it cost me a couple of friends, which dh says is ridiculous, that if they were true friends, they would still be here. Sometimes I agree, but mostly I grieve the loss. I have come to rely on everyone here as family and feel safe here talking about anything. You are definitely a big inspiration for me. Stay strong!
Grannax - Your story is very beautiful. I'm sorry he's gone, but it sounds like his spirit is still there in your heart.
Pat - I hear you! Trying to teach dh so many things before I go. He is completely computer illiterate... Sigh. Its not going well. Yes, I will bee up there with you trying to run things.
We all need to take a page from midwest Laura. Hug more often, say I love you more, go on those home depot runs just for company. I like to think I do a good job with those things. I am also in the process of putting together a support group for caregivers so he can meet others in the same situation. Hopefully it will be up and running by the end of August. Our friends are great but sometimes you just have to vent to someone who understands.
Love, love, love the Eagles but don't feel it will be the same without Glen Frye. Just saying...
Hugs and prayers everyone
Claudia
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Claudia (bigbhome), we thought that too until we discovered Glenn's son will be taking his place! Can you imagine how well he knows those songs? I would bet the other guys agreed to the tour to give him his big shot.
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Pat - I didn't know that! That's awesome! So glad he will have a shot!
Hugs and prayers
Claudia
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Thanks for sharing. I've been on 75 mg of Ibrance 7 days on/7 days off for mets to my bone marrow and have had very positive results.
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