Ibrance (Palbociclib)
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IntoLight- I agree that we need to continue to live our lives. And I applaud you for going on that cruise and having a fun experience.
I too do not shake hands at church---I elbow-bump my fellow worshipers and we joke about it. Everyone understands I am trying to stay healthy.
I too am retired and I pick and choose where I go and what situation I put myself in. Risks versus benefits. How bad do I want to go to ___? Is it worth it?
I don't "fear" germs. I have a healthy respect for them. I know that a cold could turn to pneumonia fast. Or an illness that otherwise would be mild could turn life-threatening for us.
My onc does seem to stress about my counts, esp in the winter months. She has held my next cycle before to let the counts rebound, and wants me to check with her before beginning each cycle with my latest blood counts.
But we should all be aware not only in winter months. Our bodies defense mechanisms are low during Ibrance use and we need to be aware of any illnesses that could get out of control. A urinary infection, for example. And germs are around all year long.
Just being safe while continuing to live. So can continue to fight the cancer.
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Candy, I agree with you and did not want to minimize the caution we should give to getting sick. My onc does check my counts and held me back once which was a good call. Sometimes I struggle to say things right anymore... I just don't want our newbies to panic and go into seclusion. We can work with our limits and still enjoy the life we have. Chris
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IntoLight- No worries on what or how you said it. I do not want to freak out the newbies either. I just think that sometimes we forget that we are being treated for cancer with some powerful meds. Ibrance seems so easy-- just a pill a day. Not chemo or cancer treatment in the normal sense. But it is so powerful. And, in my opinion, we have to change how we think about things anymore. Something as simple as the common cold may not be so simple anymore. Yes, live life. But be more cautious. Hugs.
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hey ladies! I must be living la vida loca because I’ve been hugging shaking hands etc whenever I’m out and about. We sacrifice so much with cancer, I guess I’m refusing to sacrifice being touched. Whenever someone wants to give me a hug I find myself being the first one to go in for the squeeze. Cancer is so lonely affection of any kind is welcome to me. Maybe I should be more careful, what we are taking is no joke, it’s not IV chemo but it puts us at risk for things while hopefully getting cancer to play nice for bit. I do use hand sanitizer when shopping and try to avoid people who look or sound sick, otherwise I’m out there baby. I can be a timid mouse sometimes when I’m going through things, always one to tough it alone and stay in my bubble but content to help others in their time of need. But I need love too, especially now, I’m walking a scary road, and I don’t like it one bit, kinda been in a funk too. Reading practically everyday helps me, I’m not cha cha dancing right now, more like a little hip wiggle hoping to feel less like funk and more like daft punk soon
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RadagastRabbit, I am with you on the hugs. I don't fear hugs at all, just handshakes. Is that strange? Maybe...but it works for me. I need the touch from others, and those who hug me truly care. That is worth it!
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Radagast and IntoLight- My pastor's wife is a hugger. She is in her 80's and kinda plump, not fat, just plump. I let her hug me. She gives bear hugs and kind of feels like a grandma. I need those hugs from her. I live alone and no significant other in my life so it does get lonely. I miss my own mom too.
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Hi all - I was held back another week from starting my second cycle of Ibrance as my neutrophils are .88. I will have another blood test on tuesday.
SondraF, I too was disappointed because i really really don't want anything to interfere with the protocal to kick the cancer back and shrink/ kill the cancer cells. My onc nurse practioner is very nice and upbeat and said it often takes them a couple of cycles to get the right dose and schedule for patients. I did get a mouth sore and have been diligently using the colgate mouth wash and salt water rinsing - the sore is almost gone which makes me think my neutrophils are up? Might be wishful thinking! I will keep up the rinsing from now on. I did CMF chemo in 2009 and didn't really have side effects so was a bit lax when starting fulvestrant and Ibrance.
I have been trying to use hand sanitizer and skipped communion at church due to my low neutrophils. I have been socializing as usual but more careful due to the holiday crowds.
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Hey Aprilgirl - thanks for the update - I was wondering if you had passed the 'test' or not! It's a bummer, isn't it? I have seen some really positive things happening with Frankenboob and to now have to take a week off when I didn't even have any sniffles or anything, ah well. Its ok. Better to get a comfortable dosage I can live with than a bad infection and feel terrible.
Im still somewhat housebound but I have been out on the bus, to the hospital, and to the local pub and, given how bad the cold and flu season has been this year, I may have picked up something small along the way.
I am in Thursday for my next round of tests - cannot wait for the holidays to be through so things can get back to normal!
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This article reminds me of wonderful Pat and how she handles treatment. It suggests a way to make cancer a chronic illness. I’m wondering if anyone is familiar with Dr. Robert Gatenby? This is a long but interesting read.
I’ve been very sick with some kind of flu and slowly recovering....very slowly. Big hugs and best wishes to everyone.
Cathy
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I had read this article (or a version of it) before and it's a very interesting concept. I do think there are other MDs who think that the "trick," if there is one, is to keep the cancer stable and basically to "live" with it.
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I have a dear friend living with MBC (bones and lung) for 17 years. She’s had 10+ lines of treatment and benefits from the miracle drugs developed for Hr2+, but the concept of “stable” and “living with it” perfectly describes her. She has always stretched every therapy as long as possible even if a little progression begins. I think of her as my unicorn to believe in but also acknowledge that being in constant treatment that long is really really hard
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Piggy, belatedly I wanted to say I how delighted I am to read your joyous pre-Christmas post! What wonderful news to hear right before the holidays! I'm also curious if you can share more about what your MO meant by "not-typical Stage 4" and the significance of that. It looks like our trajectories are quite similar (though my diagnosis was longer ago). My own MO has said some very upbeat things but never quite put it that way. Whenever I see that "Stage 4" diagnosis on my scan report I always get a bit of a jolt because so much of the time I don't think of it that way, But then there are the words in black and white. I know others on here have similarly commented.
And Cure-ious thanks to you for your for response to my post last week. And the study that you posted and comments about PR negative status. My de novo diagnosis in late 2016 had come as a shock. When my MO (who works at a breast cancer research center in NYC) said there was no significance to the PR- status I didn't really know what she was talking about and didn't give it another thought. Until friends and relatives shook their heads and murmered how sorry they were to hear that. I was pretty shaken up, but my DH then went online and ultimately found a study showing that indeed PR negative status was a negative prognostic factor -- when tamoxifen is the treatment -- but not when AIs are. Since tamoxifen was for gold standard for so long I wonder if that is at the root of a (mis)perception.
Thanks you you all for the support and great information.
Hugs,
Penny
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ts542001– just want to write to you to let you know how much hope I received from your post about cooking a family dinner.
Seems like an eternity since I could be in the kitchen long enough to cook a family dinner. Now, after reading your post, I have hope that between rads and Ibrance, maybe cooking will be doable.
Currently still in the stage where back hurts too much to do much of anything. Feel like I am living on ibuprofen and pain meds.
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Seaway-Thanks for posting that article. It was fascinating and more food for thought.
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My wife was suffering from extremely low hemoglobin level and received a blood transfusion a week ago. She had her HG level re-tested today, and its in the 90's, compared to in the low 70's that it was before. Hopefully her HG doesn't drop again and that it was a one off. Perhaps caused by the flu. She's been on Ibrance for over 2 years now, so I would have thought her HG would have stabilized after that length of time.
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Seaway, I'm so glad I stopped in and read your wonderful article....the best I've read in forever! I hung on every word.
There is much to be learned from this researcher and great reason to hope. So many here are taking Ibrance in unique ways....lowering doses and altering time off between cycles. Through it all you're learning what works to manage your particular "brands" of cancer cells.
I fully expect to one day return to Ibrance if and/or when Lynparza doesn't do the job for me. Had this drug not been newly available for my specific "brand" (a BRCA mutation) I would have continued the Ibrance Dance as long as they would let me.
I love knowing there are researchers like this one looking at unique ways to manage cancer instead of the slam-it-with-everything chemo most of us had. (I do have to say I'm thankful for those strong drugs which kept my cancer at bay for long periods of time.) I'm ashamed of the times I've said math served no real purpose...what did I know?!
I especially love the end of the article where the doctors agree that their goal is to let us live to die from something else! When I had pneumonia and felt I might die a few years ago I told my husband to make the point in my obituary that I had not died from breast cancer!
As this new year begins I'll be praying for all of you, my friends. I pray that you have increased energy and that your brand of cancer cells gets dumber and dumber and your healthy cells get smarter. I haven't given up on a cure because I've seen it happen over and over to friends with MBC. You might be next on my list!
Love to you from PatGMcHopeful
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Pat, as always, you are the wind beneath our wings. ❤️
Hugs,
Penny
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Dodgersgirl - hang in there. I know how you are feeling. FYI - I stood in our kitchen (on a stone floor nonetheless) for several hours on Christmas Eve and Christmas Day and helped cook dinner including mashing potatoes, kneading two yeast doughs and making salads. I am still on crutches from the pelvis/sacrum, but that was four weeks out from the rads hit. Every day from that procedure I've gotten stronger and the pain has diminished, though I am still taking Advil and take morphine when needed. There were plenty of days in those four weeks when I thought I was never going to cook again (or want to eat really!) and felt terrible heaping all the work on partner. But when you love to cook or cook as a hobby it can be tough to let go!
Are there small things you could stand long enough to put together that wouldn't require standing at a stove for too long? Or throw a roast in the crockpot or do an easy side to a bought main dish? We've been keeping food easy - pastas, storebought soup, rotisserie chicken, baked potatoes, smoothies. Hell there was one point before Xmas when we were surviving on storebought salads and quiche because partner was working late nights and I didn't want him to come home and feel guilty/deal with feeding me and the cats at 8. He bought the stuff and I was able to preheat the oven, dump the salads together, and put the quiche on a tray to bake (I still cant bend down to put things in the oven) while he took a minute to regroup. Its more food preparation than actual cooking but it got us through and I felt useful, which gave me a mental boost.
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good morning ladies, up early this morning so thought I’d check in. I relate to dodgergirl and sondra on the topic of the challenges of being comfortable in the kitchen enough to cook. I really like sondras solutions to this dilemma. I’ve been sticking with recipes I know that would be quick for me to make, even taken to bringing a chair in the kitchen with me. The discomfort and pain up and down my spine hasn’t been able to be managed yet, gabapentin did help at one point, not anymore so I’m living with it. Going to give Aleve another whirl tho. Pelvis Mets also giving me issues. Mobility is becoming more of an issue especially walking long distances just trying to be patient and give Ibrance more time. Feel like I drag my body across the room sometimes or when I’m out and about but still determined to do as best I can within the limits my body is giving me. See MO on Friday to go over things before starting next cycle. Think I can only manage disco finger moves today, but it’s still dancing nonetheless. Good things for all of us in the coming year!!
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I hear you all about the dinner making. My issue, besides low stamina, is nausea from the Verzenio. Prescription meds help only a little. It's hard to cook when I feel nauseated. I'm learning to adapt.
Our old routine had dh coming home from work around 3:30 and I would start dinner by 4:30 to eat around 5 pm. These days, I often cook a meal in the early afternoon between 1 and 2 and dh can reheat it whenever he wants to eat after work. I go slow and sit at the island while cutting veggies or waiting for pasta to boil. So, I cook when I feel like it rather than be tied to dh's schedule. He is fine with that.
I also supplement, like Sondra suggests. I microwaved a box of Stouffers frozen mac n cheese and had dh pick up bbq brisket sandwiches. We order take out once a week. Dh will put New Year's pork and sauerkraut in the crockpot. Sometimes dh will cook dinner on the outdoor grill. We have a day of leftovers where we don't need to cook. I try to keep snacks like pepperoni and cheese, mixed nuts, tangerines, etc. on hand.
When ds and his girlfriend visit, we have a go-to taco place nearby where we get lunch, and then have store bought snacks at home. They often will bring food in with them either prepared or to make while they're in which is helpful.
After 30 years of cooking, if I never had to make another meal, I would be just fine with that.
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I am in awe of all of you who regularly cook for your family, especially when fighting through cancer or treatment symptoms. I'm afraid I've never been much of a homemaker, even before cancer. Now I just have a better excuse
. I think I have about 5 dishes that I make on a repeated basis, and the family treats them as special events (not because they're good, but because they only happen every couple of months). The rest is either husband's cooking, things that need minimal work like pasta and meatballs, ham and buttery veggies, frozen meals or pre-made cooked food from the grocery store (we have a local farm store that does a lot of nice hearty soups, in addition to the usual grocery store hot bar stuff). My 8-year old jumps up and down at the sight of Trader Joe's chicken potstickers, but only ate the broth, meat and carrots out of my home-made beef and cabbage soup last night. She apologized for leaving the cabbage "but we are all different and like different things". Fewer hurt feelings with store-bought
.Penny, I'm not entirely sure what my MO meant by not treating me as a "typical stage IV" patient, but I think it was related to discussing what would happen upon progression, and he was thinking that if I were to have limited progression, for example in the breast (I was de-novo, so I still have the offending breast and whatever's left of the tumor) he would try a localized treatment, (surgery and/or radiation) rather than change the systemic drugs. The normal stage IV protocol would be to change the drugs and only do surgery and radiation for QoL issues.
Sondra, Rabbit, DodgersGirl and others struggling with pain and physical limitations, I hope you get relief soon, and may 2020 be kinder to you than 2019.
PatMcG, thanks for dropping by - best of luck on Lynparza in the coming year!
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I read another article which I can’t seem to find but will continue looking for. It said that scientists have discovered that AI’s continue to work for 7 years after treatment ends. This really hit me as i took arimidex for 6 years (At that time 5 years was standard) from 2004 to 2010. I was diagnosed with mbc in early 2018. This was following treatment with chemo for ovarian cancer but my understanding is that although chemo it does not effect breast cancer. So keeping the above article on spacing treatment in mind I can’t help but wonder if I had been given arimidex in 2016 or 2017 as a preventative would it have affected my mbc. This seems to me to be a pretty straightforward action for early survivors to help avoid mbc. Thoughts?
Happy New Years everyone. I’m praying for good scans for all of us. God bless
Cathy
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Hi, there, Seaway,
Well, that may be true (long acting His), but it wasn't for me, so I guess the jury is still out. I had a single site metastasis in 2006 and took letrozole from then until May of 2019 at which time I was diagnosed with more widespread mets (liver and probably bone as well). Of course, I was originally put on tamoxifen after my original diagnosis in 2003, and that clearly did zippo for me because I had the single site metastasis. I guess that mine could be viewed more as a treatment failure, and perhaps AIs can have a long term effect?
I guess the bottom line is that we don't know what we don't know (and that goes for the docs as well).
Happy New Year to all.
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hi husband! About low HG levels...mine have never been stable since I started Ibrance. Ibrance suppresses the formation of RBCs in the bone marrow so I don’t think it ever goes to a normal range (at least for me).
I haven’t posted in a while. Been caught up and busy with the holiday madness. Really having fun but my digestion feels wonky cause I’m eating pecan coffee cake for breakfast and then weird holiday foods the rest of the days it seems like. I’m “off” my routine and my GI is telling me so.
Hope everyone is feeling as well as can be. Anyone heard from Pat? I miss her!!
Love hugs and HNY!
Phill
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Philly,
Scroll up a bit -- Pat popped in yesterday with another wonderful message for all.
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Hi all.
Philly- Good to hear from ya. PatgMc posted yesterday (this page, scroll up). Have you heard from insurance yet concerning PET? Just wondering.
All is quiet here. Nothing going on, so staying in today and tomorrow (New Years). I guess I lead a pretty boring life. Always have, but now not working so... I am not doing the volunteer church secretary thing today or tomorrow for the Holidays.
Happy New Year to all.
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Hi All. I still do the bulk of the cooking for the family although what I cook has drastically changed since I can't stand long anymore. Since I feel best late morning I do a lot of crockpot meals. I agree with the others on pastas and soups though we don't do a lot of pre-prepared meals. I would rather make tacos or a quick omelet instead. I can steam tamales and open a can of chili too! ha My DH is retired but will eat anything since he doesn't cook at all although he will do whatever I need him to do. I tend to make meals that my four year-old granddaughter will eat or make double meals so we can just reheat something. I use a scooter for long walking events so I am not too tired. I am all about easy now like heating a fully cooked turkey breast instead of cooking a whole turkey, etc. We are all different and I love that.
Hi Pat. Thanks for checking in.
New Years is quiet for us. We watch the ball drop in NYC at 9:00 on TV, say Happy New Years and go to bed.
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Hi everyone,
I do all of the cooking too. I normally make extra and freeze it when possible. That way I can just pull it out of the freezer. I use the crockpot a lot anymore. The meals are very simple.
I've been really down lately. I had a root canal done about three weeks ago. The dentist drilled through one of the porcelain teeth on my bridge. The tooth broke because of that and now I get to go through fitting another bridge.
I asked the dentist how I could get a infection under the bridge, he said he didn't know. I got a second opinion today and the dentist told me the bridge was not fitted correctly. The tooth he did a root canal on is not happy, some bone around it is gone. I sure hope it's not ONJ.
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And yet another article. I was told long ago by my original oncologist not to take any supplements that he didn’t prescribe. But I always wondered and see a lot of discussion on the topic. What do you think of this?
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I'm not sure what to think anymore when it comes to taking vitamin supplements. I saw that article in another thread and was going to ask my NP his opinion.
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