Ibrance (Palbociclib)
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Thank you, Snow-Drop.
In any pockets where needed.
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WeninWI, I have been on Ibrance since August, and have noticed my hair is even thinner than before and my nails definitely are thin and brittle. I started at 125mg and after the first cycle was switched to 100 mg. I don't know whether the dosage makes a difference. But, my hair was thinning and my nails were brittle even before Ibrance. I think my age (73), heredity, letrozole and, now, Ibrance all contribute.
I used to hate wearing hats. But, now they are are my friends.0 -
WenwinWI, I’m on my 10th cycle of 125mg of Ibrance. My nails are shot - brittle, cracking, super short. I always had strong nails until Ibrance. A few months ago I noticed that my scalp was very tender, just like it felt when I lost my hair with chemo. It seemed to get thinner after that but I have a lot of hair so it’s just noticeable to me. I don’t have any eyebrows and very little lashes. I was thinking of trying the lash growth product but I think there’s a chance my blue eyes could change color so I won’t be doing that. I’ve changed enough! I can’t say if hair loss and nail changes are different on different dosages as I have only been on 125mg.
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WeninWI - I always ponder 🤔 if the hair thinning is from the hormone blockers or the cdk4/6 inhibitors. My hair definitely started falling out at a faster pace after I started Fulvestrant/Ibrance. Was it falling out at the roots or breaking because my hair is now dry and brittle rather then the soft silky texture I used to have. 🤷The hair loss tapered off after a few months. It didn't stop but it slowed down. Then I stopped I/F and started anastrozole. I started losing hair like gangbusters again. Just as the hair loss started to taper off I started Verzenio. So far Verzenio hasn't caused it to increase. Oh, my eyelashes are now sparse and short. Mascara actually makes them look at bit ridiculous. But my bikini line doesn’t seem to be thinning at all! 🥺
Nails…absolutely terrible since I've been on these drugs. I keep my fingernails cut short but they shred and inevitably I snag them on my bedspread as I'm making my bed. I'm actually ruining very expensive bedding. 😩 Since I'm terrible at painting my own nails and I won't go for regular manicures, I decided to try Color Street nails which are like little stickers of real nail polish. It's only been a few days but so far no shredding. I'm told Color Street lasts longer then a traditional manicure. We'll see.I also lost a toenail after being on Ibrance a short time and other toenails were in bad shape. I started wearing Kiss fake toenails which are super duper easy to apply and last me 3-4 weeks.
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There's so much I want to comment on, I know I'm going to miss something, but I'm reading along and relating to everything.
Patgmc, thank you for your update, I'm so sorry about the liver progression, and I hope the Y90 knocks those stooges out. I'd never heard of Talzenna, and it does help to hear what others are now taking, it is so good that there are options (and hopefully more and more options to come).
The hair thinning and nails ripping issue...sigh. I now have what I'm calling my Judi Dench haircut, since my hair is now fairly thin on top, and keeping it short hides most of that. I keep my nails quite short but they are very weak, and sometimes I can't even use them to do ordinary things like scrape underneath the corner of a label on a package. RK, I'm going to look into the Color Street nails you mentioned!
The Sahara Vajayjay... I'm surprisingly not bothered by this, since I have zero libido anymore. Zero! My husband is really ill himself, so sex is not something we would be able to do anymore anyway. But I do sometimes think back on being sexual in the past, and I'm glad I availed myself when I could, lol. I feel like telling my younger colleagues to have as much sex as possible because you never know when you're going to get breast cancer and take meds that can nearly eliminate that as an option. But I don't say this, as I'm professional at work. Mostly.
The weight gain, ah, yes. I try to remind myself that it is very possible I will be on a treatment in the future that causes nausea or diarrhea or loss of appetite (or all three at once), and I will be glad at that point that I've gained these 20 pounds. But of course the combination of weight gain, thinning hair, loss of libido, loss of one breast - ugh. This is what I can't talk to my non-cancer friends about - it's not any one thing, it's everything all together, and the fatigue that can feel like weights have been strapped to my body and I'm just carrying them around with me. Well, I mean, I guess I AM carrying around 20 pounds of weights, hahaha. Stupid cancer!
Rabbit, I am thinking of you. I hate that you're in pain, and wish that can be relieved for you. Your "grounded hope" really resonates for me, as I do think we have to be realistic, and if I have to hear my one friend tell me how I'm going to "live to be an old lady" one more time... I love the sandals for your anniversary! I was kind of panicky a while back that I couldn't go do the things I love (especially go to London and see 8000 plays), but I also love just being here at my house, and try to do "smaller" things that still feel lovely. I know the meds I'm on aren't going to hold things at bay forever, and given how wonky my scans keep coming back with weird things in my lungs, I suspect a change in treatment may be coming soon. I hate saying that, but I also can't ignore reality. It feels like people in my life would like me to do just that, and I find myself pulling away from most everyone since A) I don't want to talk about cancer with them and
when I do, they minimize whatever I'm saying. It's sort of morbidly hilarious. Like my death is going to be a shocker! "Wait, was she that sick? She only had breast cancer!" (*eye roll*)There's a scary play coming to town, The Woman In Black, and I'm debating going. The covid protocols are pretty strict still, so I think I'd be okay on that front. I need to go with someone whom I can shriek with and grab a hold of, there are apparently several jump-scares! That sounds like a great way to not think about all this crap for a couple of hours, at least!
Candy, in your pocket for your scan tomorrow! I promise not to scare you.
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SF-Cakes -
1) I love Judi Dench’s cut. I bet you look great!
2) Libido? What’s that? I do feel bad for my husband though…
3) It’s so frustrating when people minimize what breast cancer puts us through - physically, emotionally and financially. 😞
Candy - I have a good feeling about tomorrow. In your pocket.
Hugs to all.
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Thanks snow-drop!
Today a colleague went on and on about their "terrible" side affects from the c-19 vaccine booster they recently had, joint pain, tiredness...but they are happy to suffer this to avoid death. All I could think about was: which of my aches and pains of the last 2-3 years are newly postmenopausal, which are due to my very physical job and over use injuries, which are ibrance or letrozole or xgeva related, which are covid shot or flu shot or other vaccine related, which are age related, which are related to exhaustion trying to re-enter the new covid world, which are stress related,...
Ever survey, questionnaire, doctor ...asks about side affects. I DONT KNOW. Yes? I'm reading all these different threads and see libido issues, joint pain, exhaustion, breathing, sadness.... how do we know what is treatment related and what is life related?! My hair definitely thinned when I fist started on these meds...but I started them all within a month of eachother, so which one? Or...I had covid just prior to that, so did my family. My husband's hair was falling out much more than mine as we recovered. We also have high stress family business stuff all pandemic...both of our hair loss stabilized after a couple months. Stress? Covid? Meds? Would I be close to this tired and unfocused reentering the world after so long remote if I weren't on Ibrance etc?
Its all too subjective for me to trust. I see my low anc each month and hope for the best. Maybe this should be on RANT thread, but it is really questioning what is normal on Ibrance.
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Hey ladies
My pain level hasn't decreased but it hasn't gone up again which I'll take. Its been resting at about a 7. I'm normally 5/6 all the time. I got myself up yesterday morning, took a really hot muscle relaxing shower, got myself dressed in layers and walked out the door mindful of the wet leaves before heading to church. Once feet of snow start hitting the ground I won't be able to get out much so I'm doing as much getting out now while I can even if it hurts. No worries. I didn't take anything with my mastectomy surgery even with access to a morphine drip. Took 1 Norco right after my oophorectomy, after that nada. This pain is much different. I'm not ready for opioids yet. Not yet. After church, a quick grocery trip for a couple extra supplies for Thanksgiving, I crashed for a long deep nap. Woke up warm and with a pair of cat eyes looking straight at me - Violet - my constant companion. Never leaves my side and cries if she doesn't know where I am. She even is nosey enough to observe my showers and yells and throws a fit til I get out so she can lay on me. I think she wants to be my protector. She does a good job She scouts noises for me and plops back on me when the coast is all clear. Company during the day is nice when I only get to see beloved an hr a night during the week - his hours are crazy - mostly because he's having to pick up slack of others not doing their job on site. Sucks. He carries a lot too. We both carry a lot. BAP- You have been through so much. I know that's probably been said so often to you, but you really have. You lady and several on the liver mets thread blow me away. You have made it through some really tough hurdles and here you are on the Ibrance thread dancing with us. I hope the ascites calms down for you - I hated my surgical drains from my mastectomy and tho not the same as what your dealing with can understand not liking dealing with tubes - So sorry you need to drain yourself for comfort from the ascites . I hear many in the liver thread talk about this, I need to look this up so I can better understand and perhaps be more helpful/thoughtful in my replies to you. I hear you on wanting to turn back time to pre-MBC. These months seem to absolutely be flying by, Christmas will be here very very soon. My MO told me she has 1 MBC patient who was in the trials for Ibrance and is still on it. I hope for you to have much much more time with your son
You and I will celebrate birthdays around the same time it seems - your 34th, my 40th. Happy early birthday to us both! Crossing fingers with you that you stay infection free - the pressure for this to work has to be a lot since they aren't offering anything else - must be so frustrating the infection risk keeping you from wanting try things - would make me feel boxed in. Ibrance be kind and good to our newest dancer - give her a good 2nd cycle without issue. *Hugs*Sondra - pocket duty for surgery on the 28th - I'll be playing re-runs of supermarket sweep for you while in there! Here's to a successful shopping spree of all varieties across town with a red hot credit card
Looks like some magic will be happening in the kitchen as well - fancy schmancy! That cannoli pound cake will be christening plates over here for Christmas. Absolutely. Thank you for sharing! Kale - I apologize for broccoli escapage, lol
It sucks how many things we have to weigh making decisions. Sometimes it feels like either way we're giving up something when even the little somethings are big somethings to us. I think of you ladies a lot who weigh working/not working and when to stop. I'm hoping you can sneak some fun things in while you weigh options.I was going to say I'm glad I've put the speculum to the issue of ladybit issues but on second thought had an immediate recoil reaction "Oh hell no!". My goodness I feel so much better I'm not alone in desert. I've tried so many things- either it burns or feels so gloppy or messy with all the extra "intimacy enhancing" slop accompaniment that I just end up feeling so dirty when I'm supposed to be getting hot and bothered. They never told me ovary surgery would take sex away. I liked sex with my beloved - a lot. I miss it. I wish I had it back again. I may have not opted for the surgery had I known this BUT, I had no choice if I wanted to pursue further treatment. Add it to the pile of cancer 'gifts'. Historical fiction is right, Iwrite, lol!
KBL - I wish tumor markers didn't hippity hop so much, maybe that's why some don't use them? But I know TM's can for some be the only way to know whats going on. "I think we all need to give ourselves a break and understand every day will be different. Oh, how I wake up in the morning hoping I feel good and can take on the day. Those tough days, I'm just going to let them happen and hope the next day is better" <--- this is really good advise. Wish I would remember to take this to heart more often.
Katy - Told ya
You become on a one man band with Ibrance and you just never know the sounds you are capable of until you and Ibrance start dancin' the dance of the 7 farts - rather than the 7 veils Forced menopause plus the DX is not fun at all - I raise both my hands in agreement with that - am sorry this just fuels things you were already wrestling with. Yep, a wee bit younger than you. Started the IV journey at 37 but was Stage 2 almost a yr prior at 36. BAP is the youngest actively on the thread now. I didn't think I'd see 40 at all and I'm headin' there fast. Cannot wait to hit that benchmark - its been one of my goals since the start of all this. Which is I guess my way of saying - its okay to set goals, more than okay! You and I are in the same boat concerning loss of physical intimacy because of the effects of TX. I miss it too. The closeness. I think it would be comforting as well as pleasurable during all this, but alas, not possible, the vaginal atrophy says no way jose. Concerning weight, gonna have to raise my hand again. I had just came off heavy chemo with all the steroids, then the ovarian suppression started which furthered gain, then surgery when suppression failed, then came Stage IV and the hormone therapy. I've added about 45lbs to my frame and not only does it not want to move, it feels like it wants to add more. I asked my MO if this happens/is normal and she knodded her head. Oh great, I'm going to mutate into Violet freaking Beauregarde - just paint me blue! As a result I avoid mirrors. I don't recognize my bloated self. I have seen some ladies try something called Intermediate Fasting - where you wait 12 hrs from your last meal to eat again everyday - like say you last ate at 7pm, you eat breakfast at 7pm and don't eat anything/drink anything but water until then. 12 hour window to eat breakfast, lunch, dinner, 12 hours of no food/drink but water. Many I've seen were able to drop quite a bit without changing anything else. So I'm trying this out. Enjoying a good meal can make a real crappy day better. If this can help keep the lbs from treatment etc packing on so I can savor still I'm all for it. Kentucky Derby Pie is a bucket list item for me - always wanted to try it. Perhaps I'll try making it for bday Today is your first scan set since dx - crossing fingers, toes and heart for you - Come on Stable Mable or Regress Regina! 
Tanya - I may get up the courage to try the product you recommend. Everything else like you said burned - Nothing worse than feeling like a Flaming Hot Cheeto in the nether regions.Pat - I'm sorry to hear about liver progression but glad to know you have another plan in place. Y90 has done many very very well in this section. Hope it obliterates the stooges!
Snowdrop - I was on the capsules for awhile before I got moved to the tabs. I feel constipation is worse on the tablets as well as the hair thinning. Mouth sores are better on the tabs than the capsules. Fatigue is definitely. worse on the tabs. By worse I mean a notch or two worse not an extreme swing one way or the other.
Candy - pocket duty for you today too - you and Katyblu are in the machines together today!! Thank God the nausea isn't constant anymore. Lynparza bring back Stable Mable results!
Dancemom - Welcome to the thread! I'm glad your being offered the mastectomy. Amazon carries some post mastectomy gear to help hold the drains so you can shower. Practice arm stretches at 90 degrees until you can start stretching all the way up - will help get your range of motion back much quicker. Concerning side effects of Ibrance/hormone therapy. It seems to effect people differently BUT we do have some core things we all experience it just varies on degree we experience them. For Ibrance it is normal to experience fatigue, mouth sores, hair thinning, constipation/gastrointestinal issues but mostly constipation. Tho it can go both ways and even both ways the same day. It can go to "It won't stopppppp!!" to "Mt Everest is stuck in my colon, helpppppp". Low WBC (White blood cell) counts is also common. For the Hormone therapy part of the combo. Moodiness/Mood swings, bone loss, fatigue, hair thinning/loss, loss of libido, vaginal atrophy and joint pain are pretty common. With Ibrance we need to keep an eye on Shortness of Breath issues as Pneumonitis is possible with this medication. As you can see many side effects are common in both medications so it can be like a double whammy. Plus the DX itself can be stressful. Everything just seems to work in concert, isolating the culprit can be hard when the answer can just be "everything".
Wen - I'm going to have to write this one down too! Thank you, I'm glad I took the plunge and brought this up. I had hair and nail changes at 125mg and I still have them not lessened on 100mg. I had hoped thy would lessen with the drop down but nope. I know some women take Biotin to help with this, but I've been lazy in not doing it, trying to avoid swallowing another pill.
Moco- Hi! Another new face to the thread, welcome!
RK - I feel like the hair on my head and my eyelashes are traveling to my chin. Basically migrating from where I want hair to where I don't want hair. Color Street is nice stuff - I've used it a few times and have been pleased. I had gotten Fish scale ones for my Toes to cover up the ridgy look to the nails.
Cakes - "the combination of weight gain, thinning hair, loss of libido, loss of one breast - ugh. This is what I can't talk to my non-cancer friends about - it's not any one thing, it's everything all together" - I agree with this very much! I've had the same sentiments said to me "Your gonna live a long life and be a grandmother!" - The last statement tho gave me whiplash - but it was nothing compared to the wide eyes of "Oh boy have I royally stepped in it" when I quietly say back in reply "I don't have ovaries and I don't have children" - it immediately then feels like Porky Pig takes possession to the perpetrating persons lips afterwards as backtracking and loss of words fail to lift off. "I find myself pulling away from most everyone since A) I don't want to talk about cancer with them and
when I do, they minimize whatever I'm saying. It's sort of morbidly hilarious. Like my death is going to be a shocker! "Wait, was she that sick? She only had breast cancer!" (*eye roll*)" <----This. You and I are on the same page with regard to feelings/thoughts about many things. I'm ready for a nap after spending most of the morning writing this. Beforehand will make a sandwich, grab a glass of milk and dive into the tail end of ER - I'm on season 6 now. Thinking of you Katyblu and Candy - we're all there for pocket duty!
Love to all you ladies!! I've got my cocktail beverage in the fridge chilling waiting to toast you all this thanksgiving 
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Thanks Rabbit.
sorry you’re in pain. It’s the worst. It’s just a constant reminder of what we’ve been through and what we go through everyday. My struggle is thet for most of my mbc journey I have been able to live relatively normally which I feel fortunate for. But since August when all the shit hit the fan, I haven’t been the same. And as my previous posts have mentioned , the ascites is the biggest hurdle I face everyday because its what causes the most discomfort. My activities are limited and so I just don’t feel like myself.I started my second cycle Friday and have a little GI upset and fatigue. I walked through the mall yesterday for some Christmas gifts and was huffing and puffing which is not something I’m used to.
Anywau im wondering if my MO is going to do bloodwork mid cycle like last time. She never mentioned it. But did say I’ll have a pet scan in 8 weeks in hopes that I’ve made it through 3 whole cycles of ibrance. Here’s to hoping. they couldn’t guarantee I wouldn’t get another infection but said we could try the 75 or do nothing which was so triggering because it’s a reminder that they don’t feel like I can handle anything else. But everyone handles various treatments differently. So I don’t know what’s up with that.
But yes, lots of pressure for this to work and work for a long period. I really do want to live. Sometimes it’s so hard to see that things can get better because we just feel like garbage a lot. SighAs per intimacy, I feel for my husband. I have no interest. Especially with the asicites. Bumps in the road hurt my belly so I can only imagine what sex would feel like. Being almost 34 this sucks. I miss being close to him that way. As much as this affects us, it affects them so greatly too. I can tell my husband is struggling. And not necessarily with the sex stuff but just with his wife being sick and none of us knowing what is next. All we can do is wait and hope. I’ve come through a lot. You’re right. So I should take it as a sign that I can get through this too as long as I can stay patient. I can’t expect things to change quickly.
i see the hematologist at the Thrombsis clinic next week and hopefully we can come up with a safe plan for this clot in my portal vein. So far it’s been a bit touch and go with blood thinners and ibrance.I wish I could reply to everyone. But pocket duty for everyone who has upcoming scans. Sending good vibes your way.
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oh and almost happy birthday to you too Rabbi
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Was at dermatologist today, took ANOTHER squamous of me. Asked him about my practically non existent hair, cause of chemo. He says cold cap. No, I’m on oral med. He says Rogaine. Has anyone tried it?
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Rabbit, thank you. You are so sweet to reply to everyone. I will be talking to onc about the markers at the next meeting. I’ll keep you posted
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So yesterday was a long day with scans, bloods, and MO. Pretty good news. I cannot see my scan results yet in the portal (checked again this morning) but MO said there was a decrease in the size of the liver mets. She said "small decreases" but decreases all the same. When I can see the report myself I can compare the sizes from last time to this time and see just how much the decreases were. She asked again if I thought about the Y90 procedure. I said if the Lynparza was working then I want to continue that for now.
There was an interesting finding. Multiple lung nodules in the right lung. MO not convinced it is cancer. Doing another CT in 8 weeks to monitor. I am trying not to get anxious. Could be something other than cancer. But I have not been sick-- no fever, no cough, no illness of any kind. So.... who knows.
My WBC were at the best in 4 years !!!! WBC 3.1-- still low, but much better than usual. ANC was 2200 (2.2) !!!! Wow !!! So the Lynparza is not hitting the white counts as bad as the Ibrance did. Hemoglobin was stable at 9.6--- low but stable.
So overall a good report.
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Rabbit - I wish I could wave a wand and make all your pains go away. Make all our aches go away. Sort of like Regress Regina but for pain. Did you know my name is Regina? So yes, Regress Regina is going to be my new mantra.
Great news Candy! Any decrease in size is a WIN! Heck I’d be happy with stable so I find a decrease news I can dance to.
KBL - keep us posted. You are in my thoughts and I’m praying this is just blip.
Based on my blood labs, I was able to bump my dose of Verzenio up from 50 mg in am/100 pm to 100 mg x 2 last week. My labs weren’t great but they were good enough to try this small increase. If I can tolerate 100 (the medium dose), I’ll be happy. I don’t see my blood being able to tolerate the max dose. No infamous stomach issues so far on this dose although I am starting to get very fatigued. If my body is ok with 100 mg, the next hurdle is scans but that won’t be until January. 🤞🏻
I’m wishing everyone a wonderful and memory filled Thanksgiving doing whatever and eating whatever makes you happy. I’m so grateful to be able to spend this week with my two favorite guys - my husband and my son. Oh, and my loyal and cuddly dog Toby! I’m a lucky girl.
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Candy, Your results sound really positive to me! Enjoy the feeling and the relief.
Hello to everyone here. I hope even with all our various medical things going on that Thursday/Thanksgiving lands gently.
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RK2020, thank you. I'm actually feeling pretty good and have been able to eat more. To my surprise, I've gained four pounds back. This is my cue that I think the meds are working. I'm kind of excited I gained four pounds.
I'll definitely keep you posted. I'm glad you were able to up your Verzenio. I've had two dachshunds at separate times in our marriage named Toby. It's the cutest name. Have a great Thanksgiving.
Candy, I am so happy it seems you've had some shrinkage. I hope the other stuff is just nodules and nothing to do with cancer.
My WBCs and ANC are up on Xeloda as well. I was below normal this last time but still much higher than when on Ibrance. It feels good to have them a little higher
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Hey everyone! Well I had my PET/CT scan yesterday. I don’t see my MO until 2 Dec but I’m hoping to be able to see my results on Monday. I’m hoping for stable, especially after what the radiologist said after my chest CT 2 weeks ago. I didn’t really have any scanxiety preceding the scans, but now I have results-anxiety. I just want to know if this is working. On my third cycle and I think my SEs are increasing a bit. Still constipated but when I go it’s an immediate need with lots of gas pain and cramps, so a great mixture of constipation/diarrhea. Sigh…. My hot flashes and night sweats suck, my hair is thinning, wounds aren’t healing as fast, and I’m still tired all the time. I try to look on the bright side, that I’m alive and still mostly living a normal life, but sometimes i am a negative Nancy.
Rabbit, as always I appreciate your kind words and deep thoughts. I am so sorry you are in pain. I can’t make decisions for you but for me, just in the beginning of my journey, I am already on opioids. I didn’t want to be but after sitting and talking with 3 doctors in different specialties and a nurse in the ER, I’ve come to realize it’s not the mountain or pit I thought it was. It has helped immensely with my pain and I am on the most minimal dose. I don’t feel drugged or anything. Im not saying it’s right for you, but it may be time to have a conversation with your palliative care team. I hate to think of you in pain. I am so glad you are meeting one of your goals by turning 40 though! That is so wonderful! I hope that it brings you joy and a renewed sense of hope and peace 😊
So I have visitors at my house for the first time since diagnosis. My DB, my SIL, and my 4 yr old nephew. Whew, I do not have 4 yr old boy energy! They’ve only been here a day and I'm exhausted haha! I love seeing them but it is hard to be present the whole time and even-keeled… They’re here for a week. And then the Saturday after they leave, my parents and grandma are coming to stay with me. It might end up being a little overwhelming.
Ladies, I hope you’re all doing well. And I hope that Thanksgiving is a day for happiness and distraction from what we all normally deal with.
You all are in my thoughts
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Katy, your SEs sound very similar to mine. Gas , mix of constipation and loose. I still go everyday but the gas is such a pain. Now that I’m on 75 I find it a little less than the 100s but I’m only a few days into my second cycle so that could change yet. And the Fatigue is ..ugh. Tiring.
Sending positive vibes for a good scan result and hopefully you won’t have to wait long.Where I live we don’t have an online system for our charts so we are at the mercy of waiting for our appointments :
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Well, just as I was learning how to deal with the SE's of Ibrance, my MO is switching me to a cocktail of Xeloda, Tukysa (tucatinib)and Kanjinti (biosimilar of Herceptin) along with a monthly infusion of Zometa. I'm kind of bummed by the switch in meds and slightly terrified of the possible side effects of Xeloda.
KBL, I see that you recently switched to Xeloda and seem to be doing well. Have you been bothered with side effects?
My DH and I will be spending Thanksgiving with our daughter, SIL, and two grandkids on Maryland's beautiful Eastern shore. I wish everyone here a peaceful, relaxing holiday.
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I guess my Ibrance dance has ended. Had a PET scan on Mon. and I have a nodule in my left lung that lit up as well as a right rib lesion and right iliac bone lesions. I was shocked and disappointed because I thought all of this would be seen on a CAT scan. I see a pulmonologist next Monday and don't know what to expect next. Had labs and Fasoldex shots today and talked to my ONC via phone call. He told me to stop Ibrance today and he is ordering Verzenio for me to start taking on Monday. I wonder what dosage; I was taking 75mg on Ibrance. He also mentioned diarrhea as a SE. I am totally bummed.
Candy, great news on your scan and labs.
I hope everyone has a great Thanksgiving!
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MoCoGram, I am on. 1500 mg in the morning and 1500 in the evening, 7 days on and 7 days off. My doc said there are less SEs on the 7/7 schedule. I am doing well on it. My hands are just getting done peeling for the first time, but it was just surface peeling, no layers. I make sure I use the Udderly moisturizer with 20% urea on my feet every night and then put cotton socks on. I had one episode where I had about a layer of skin on one foot off. It was a really tiny spot and healed quickly. I do take a Pepcid AC maximum strength once every morning before I eat so that I don't have any stomach issues. It's been working well. I'm able to eat better.
Lee64, I’m sorry you’re having to switch meds. Just know there a lot of us who still comment on posts even though we’ve switched, so don’t leave the group. I hope the Verzenio works well
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Hi all - I was out of town last week. I was flying home on Monday and did have Candy and Katyblu on my mind for scan pocket duty. I always do a general prayer for all having scans so feel like I covered Lee64 as well. I had a good visit with family and a little vacation. I helped my parents (in Palm Desert) and it's always good to see them but it is hard as my dad is having a lot of health issues. That has been going on for years but it's not easy. I then flew to the Bay Area and my husband met me there so we had fun with my sister and her family, watched Cal beat Stanford in football. Watched my nephew play D1 waterpolo for Stanford, saw high school and college friends of mine and my husband. The last 3 days were jam packed full of fun and didn't feel long enough, but it was great. Was hoping to meet our SF-Cakes but there wasn't time so next visit I look forward to that!
Candy - your results sound great and I am happy for you!
Katyblu - hope you get results soon and they are stable or show regression.
Lee64 - I am sorry about your scan with some progression but our RK2020 is doing well on Verzenio - that thread has some good advice on how to avoid the D that is common.
KBL - good news that you have more of an appetite, especially in time for Thanksgiving!
PatMcG - great to see you posting. Also sorry to hear that you have progression but your plan in place sounds excellent! You continue to be an inspiration!
RRabbit - I am sorry that you pain is still present. It's a lot to tolerate. Pain aside, you keep us on our toes:)
SFCakes - I hear you, too about how clueless some well meaning friends are. Not all of mine know of my dx but all the friends I saw last week in California are aware. One of them asked me what our plans are for retirement and if I plan on working for 8 more years.(I am 57)....um......ok......I just answered " that is a long and complicated answer for another time!".
MoCoGram - feels like you just started Ibrance and yet you are moving on! Keep in touch, ok?
B-A-P, Spookiesmom, Rosie24, SondraF, Tanya, RK2020 and anyone else on Ibrance - hope you are all doing well.
US Thanksgiving is tomorrow. We will spend it with friends. I am thankful for all of you and how we all support each other. It has been a true blessing in these past 2 years.
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Aprilgirl1, thank you. Yes, I’m ready for a delicious dinner. I can definitely tell a difference. What’s funny is I don’t actually get hungry at all. I know I have to eat, so I make myself a plate and finish it almost every time. It’s weird. Have a great Thanksgiving.
I’m sorry your dad is in poor health. I hope you had a great mini vacation alongside helping your parents
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Candy great news, such a relief just before thanksgiving!
Rabbit, thanks for sharing your experience. I am sorry you are in pain, and thankful for all your kind words and encouragement to all.
a bit late to post, got cold but I feel much better, good excuse to not go to in-laws gathering! :pp
Happy thanksgiving, Hugs to all
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Happy thanksgiving everyone .
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Happy Thanksgiving to US friends and Happy Thursday to everyone else! Honestly, just the smell of roasting turkey makes me like November just a little. My computer's been wonky lately so here is the follow up on the bone strengthener story before it dies and I have to spend $$ on a new laptop.
This is for those who may need dental work. The main thing is to get any invasive work done now if you haven't started the Xgeva yet, (Root canal therapy and implants) Once you've been taking these drugs for any length of time there is a substantial likelihood that neither the mandible (lower jaw bone) nor maxilla ( upper jaw bone) will heal well (or at all) after surgery. This is for patients taking Xgeva, Prolia, Zometa , Ibondenate or any bone strengthener that impacts osteoclastic bone activity. The normal healing time for the gum and bone is 6-8 weeks. For us that just doesn't happen.
These drugs coat the bone to prevent it from retreating (lytic mets). This makes bones fragile like Swiss cheese. They also prevent bone from building up new tissue (sclerotic mets). These mets cause stenosis or narrowing of bony channels that hold the spinal cord for example. Arthritis patients often have sclerotic bone activity which is what causes the knarled joints.
The issue is that the same activity that prevents mets from forming also prevents bone from healing. The result is that a tooth extraction can leave a hole in the bone that never heals up. This makes it a great place for infections to take hold. The damage to the bone can also cause chips to come off the underlying bone that slowly work their way to the surface. It's painful and it can happen over and over. The chairside assistant at my root canal said her brother has been hospitalized three times in the past year due to infections after he had an extraction. I think our late friend Gumdoctor had this happen and it was miserable for her.
These drugs are adding years of quality life for us by preventing fractures and painful stenosis. That's why they are prescribed.
So what can we do if we're taking bone strengtheners and a tooth goes bad? There is a blood test that indicates whether your bone is likely to heal. Ask your dentist to order one for you. It's called the C-Telopeptide Beta-Xlink Serum blood test. The normal range for post-menopausal women is 104-1008. The Oral surgeon I consulted said he wouldn't do surgery with a number under 150. Mine came back at 75. That meant a $3,500 root canal and crown instead of a $165 extraction. Medicare doesn't cover dental work and my private pay dental insurance covers less that $500.
Cost can obviously be an issue and it seemed silly to me to spend money on a tooth when I'm already four years into my stage IV bonus. The value is in quality of life. I don't want to struggle with unnecessary infections and dental problems in the time I have remaining.
If money is an issue, the Komen Foundation has grants that help breast cancer patients with their cost of living (even though they don't cover dental work.) I applied for a month of rent and utilities funding to free up some funds for the dental work. The social worker at your local cancer center will know about these types of grants.
Hope this is helpful!
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Happy Thanksgiving.
Iwrite, this is great information. I’ve saved the name of the blood test just in case. I do have some cracked teeth, so you’re telling me crowns are okay, just not root canals
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Iwrite - Thank you for that very interesting information. I too am saving the name of that test - just in case. I take Zometa quarterly and struggle with knowing when to stop. But your post makes me think that even after stopping, there is risk. Did I understand that correctly?
HAPPY THANKSGIVING everyone
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Happy US Thanksgiving to everyone, I'm thankful for your presence here! We'll be watching the National Dog Show at noon, my husband usually roots for the terriers and I root for the retrievers, and we just smile for two hours seeing the adorable pups. 🥧🐕🐩
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Happy Thanksgiving Everyone!
Today will be Pre-made (breaded, seasoned) Italian chicken cutlets from the butcher I just pop in the oven. Sides: Stuffing, Mac and Cheese, Cranberry Sauce, Caesar Salad with homemade seasoned croutons by beloved, Garlic Parmesan biscuits and Apple pie with Whipped topping for dessert. Leftovers for days since its just us, not enough turn around time to be able to go and comeback to see beloveds family. However will see them soon for my bday as beloved has put in for vacation time as it will reset with the new year. While all the food is coming together, I raise a hard iced tea to my second family here as old classic epic movies play in the backdrop
I am thankful everyday to have this group and all of you 0
