Ibrance (Palbociclib)
Comments
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Anna, I didn't forget about your question. I have pain from dryness in my nostrils including nosebleeds. I'm pretty sure it's not mets to the nose. For a while, you are going to think everything is mets but it's mostly not.
Candy, yes, nails get weak and wonky. I keep them short.
Particulargirl, it sounds like your husband needs to not go with you are get on the same page as you are. Tell him to quit getting the doc off task or enabling him to. He should help you steer the conversation where it needs to be. It's just so much easier for both of them to talk about other stuff. Two males in the room, your doctor and your husband, who both care about you. Hard to be assertive but you need to be.
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Candy, my nails have always been a little weak, but now they are terrible with more pronounced ridges. They crack and peal even when kept short. I wore acrylics before my dx and avoid them now, but I don't like my nails to not look manicured. A professional manicure does not help, so I just keep an emory board nearby and buff them often.
Particulargirl, I agree with everyone else. I would jump in right away and say that you have a number of questions you need answered before you leave, and cue your DH ahead of time. You might even write them down and hand him a copy.
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Thanks to all who have joined in about the fingernails. I am now keeping them very short--down to the quick. And keeping them polish free. Crappy that I cannot have pretty nails.
I clarified my profile today, but how do others free text in their profile? I want to add some and when I go to My Profile on the top it only lets me edit the info with preformed questions.
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Peculiargirl- I agree with Tanya about going with a list of questions. My husband goes to all of my appointments with me, and I like that. My MO's son used to play basketball with my son, so they always like to talk about their son's sports careers. But, I keep them focused with the list. It's actually a good idea even when your doc doesn't get off task. So, between visits I keep a running list in my phone of questions and strange side effects and I send it to my husband before we get to the appointment. I make him in charge of it. He usually reminds me of something and adds things to the list also. Before we finish our appointment, I always ask my husband to look at the list of questions and make sure we haven't forgotten anything. Because we ALWAYS forget to ask something.
As for my nails, they are toast. I guess it goes hand in hand with my hair being such a disaster too. I don't know which drug to blame: Lupron, Letrizole, or Ibrance. I just keep trying to cut them down so they don't look as bad. I still take my biotin and hope for the best.
Missy
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I just received my bloodwork results from today: my ANC is back up to 1.4 (on d18, after having been down to 0.64 on d13)! That does not really make sense in a scientific way, but I take the good news as they come.
I am also feeling much better, only seeming to suffer from hay fever now (never was before). Anyone of you met sisters having to deal with it as well? I am not so keen to use an antihistaminic because I do not want to suppress any immune response that my body is having by the Ibrance. Or are these two different things?
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thanks, everyone. Last week in addition to my husband, I took a good friend who is a retired nurse with me. I warned her ahead of time, and she and I worked hard to get the onc back on track. At one point, he was talking about something else, and I had my head down, circling the word BIOPSY on my notes over and over......and then I started drawing arrows around it.......when the onc took a breath, I said, "ok, but tell me about my biopsy" I just don't expect it to be so hard to get him to TALK to me!!
thanks for the info about nails. I guess my gel days are coming to an end, aren't they? I'll focus on the money I'll save!
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Cure-ious, thanks again on the Faslodex/Letrozole question. That's reassuring.
On the nails, even my nail technician (who doesn't know about my diagnosis) said that I shouldn't buff too often, as I would lose nail thickness in the process. I'll let you know what this product is next time I go in for a manicure!
I'm with you....I want to try to stay ahead of this and not wait too long between scans. If progression comes, I don't want it to get a head start on me!!
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When I think about the changes we see in hair, nails and skin, I remember that we are working hard to diminish any hint of estrogen in our bodies, the very estrogen that maintains youth. Essentially, we have stepped up the aging process, becoming little (or plump) old ladies before our time! The weirdest thing happening to my nails at the moment is that trimming my toenails is an adventure. They're tough as ...well...nails....and they fly off in little chunks. Gross!
About the nose/sinuses: I have never in my life had sinus issues even though I live in what is called the "allergy capital of the south" but now I get an achy sensation off and on. I have almost no hair left in my nostrils so I wonder if more pollen finds its way up there.
About the ears: Like some of you I've had some hearing loss, more in the left ear. I could get really sad about this if I let myself as I have to ask people to repeat themselves. Unfortunately, my oncologist's voice is in a range that is difficult for me to hear well but they say when you lose one thing, you gain another - I'm becoming quite the lipreader! I have to remember that I'm 68 and might be experiencing some of this without the meds. My hubby wants me to see an ear doctor but I'm not quite ready for a hearing aid which I know would be forthcoming.
That's all the complaining I'm going to do for now! I'm painting hummingbirds into that weird art piece today. I think one of them will wear sneakers! Thanks for all your kind words, my friends.
Love from PatG
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Pat, I do still go and get my toenails done about once a month. I can't reach them well and I feel better knowing they are manicured properly since I have calluses on the bottom of my feet from standing at work for 35 years. I know my tech well and she is ultra clean for me.
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Pat, make the sneakers high tops.
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Yes on high top sneakers!
..My guy and I saw surgeon today regarding my TN..We both liked him..spent at least 40 min with us..He does not do staples like first one I had..He does stiches that absorb..and steri strips..Doing sentinel biopsy unlike first oh so painful one after lumpectomy.I will be under anesthesia horray!!...This ..mastectomy all happening week from Tues May 1. TY for prayers.
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YES! I constant din of ringing or static in my ears drives me crazy!
My nails are not strong either. I do find that putting cuticle oil on the actual nail part seems to help. Maybe it's a dryness issue. When it's my turn to try Xeloda, I fear for me very very dry hands and feet
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PatgMc - I wanna see this hummingbird in shoes! (My fave little bird)
Also just have to say that your accounts of other long-term survivors are what saved me from losing my mind when I first joined the stage IV boards in the Fall. Especially the women who have had kids or gone on to have children. I love hearing about MBC gals who have adopted or gone through surrogacy. Gives so much to hold onto and it's so important to share these cases to give others hope. Thank you Pat and so happy to read you too are a 5+ year thrives of this silly disease! I do know of a few ladies who are still on Ibrance after 3.5 years. Wishing that for all of us!Keep the long-term survivor stories coming!
Love to hear so many of you still on this drug after so many cycles
Side effect stuff:- I have felt my nose is super dry in the last 6 months and does hurt at times. Maybe Ibrance caused... I never had this when I was on Letrozole alone. Also noticing nails are more brittle with ridging almost.
- My hair loss is increasing... Not like chemo but it has thinned quite a bit... I only wash my hair once a week now because so much comes out when I wash it or comb it. *sad face*
- .... Which made me want to ask... Has anyone else had a sore scalp? I forget if I asked this before. My scalp hurts when I touch it. Not all the time but man it aches when I comb it or even to put it up in a bun. (I don't have skull mets as far as I know)
- My left ear pops occasionally. No idea why but it is new since Ibrance.
- I have burped "smoke" a few more times recently. Haha
Had my CT scan today after completing cycle 6. Nerves aren't too bad right now. Tomorrow morning will be another story when I see my MO for the results! Hoping dropping to 100 and then 75 has been a good call and with good results. Def had an easier time on the 75s this round. My counts only dropped by 0.2 each week which made it so I could push through.
Thinking of others who are awaiting results... scans... surgeries etc.And welcome Lynh and all other newbies!
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Particulargirl - I bring my hubby to MO consults, and one of my sons came for the initial MBC diagnosis. My MO takes my list of questions and goes through them 1 by 1, strokes it off and proceeds! Then asks if there are other concerns etc., which my son came up with a couple, so that is good! Unfortunately he is moving to a different city and Center May 1, so I will be getting a new MO:( . Stay healthy everyone!
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Ashlyn, My scalp hurts at times and tingles at other times. If I touch the places that hurt, they feel like bruises and are tender to the touch or with brushing. The interesting thing is that the sensations come and go. I don't have them at all during some cycles.
Netta, I am glad that you are feeling better. My neutrophil counts have bounced around in the past. At one point my MO shook his head and told me that nothing about Ibrance surprises him anymore. It is not predictable.
Lakewoman, Well, you have a plan in place to get rid of that TN. It sounds like your appointment with the surgeon went well. I will be praying for you. May 1 will be here soon, and you will be able to recover in the warmth of the spring sunshine. Well, at least I hope the real spring weather will move in for a prolonged period of time by then.
Pat, Yes, that lack of estrogen does speed up that lovely aged look that we all love so much. My hair looks like steel wool, my nails look like pale peanut shells, and my skin looks like I Wrapped myself in an alligator. Well, at least I am still alive and kicking and enjoying my life. I might look like a 90 year old, but I feel much younger.
Hugs and prayers from, Lynne
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Ashlyn, my scalp occasionally has small sores and hurts a little in spots (I am on cycle 23 of 125mg). I still dye it about every 4 or 5 months although I avoid ammonia so it just fades. The dye on my scalp doesn't seem to make it any worse and doesn't hurt when applied. My hair is thinning. I have a wig but only wear it for special occasions. Usually I just wet and comb it as it is quite curly but I hate the frizzyness of it so sometimes I wear a scarf or a hat. It looks better dyed as it is a mousy grey naturally. TMI but maybe some of this helps. It is not at all what I would like, but I am alive and able to function reasonably well, so I will take it.
Chris
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Gracie, my personal apologies to you. I was not trying to "stir up shit". I won't bother to explain my motivation to you. I just right now am seeing your post, so I wanted to give my personal apology to you. I'm sorry.
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I haven't checked the site in about a week or so---so much posted! I'm relatively new and just started my second cycle on Ibrance. The second cycle has started out better than the first. MO is going to test my cancer antigen marker in the blood next week. Hopefully it has decreased. My WBC/ANC has been low, but seems to go up and down. Seems like in reading the posts, that is common.
Ahslyn--good luck with your scan results! I have had some luck with using Pura D'Or Shampoo/Conditioner for Anti-Hair Loss. My hair is still thinner than it used to be, but it slowed the loss down quite a bit.
I agree about sinuses. My nose gets very dry and kind of hurts. But I felt like it's because I'm dry all over now that I have been on Ibrance.
My question--I have a rash spot on my right hip about the size of 2 50-cent pieces. MO said to put hydro-cortisone on it, but it doesn't seem to be clearing up. Anyone else with any rash?
I do love reading all the great posts. So great to read it all!
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PatgMC-- RE: your post on 4/22-- just wanted to say thank you for the reminder about surviving many years. It was a great post and loved reading it. I was originally diagnosed in 2008. In 2011 I had mets in the ovaries. Cancer free for 7 years and then its back -- in the peritoneum. So now on Ibrance/Faslodex. This mets is very small and caught early. So hoping for the best!
Wishing us all the best outcomes!
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I add my voice to 50sgirl as usual. Before I began using Xgeva my MO told me to go to the dentist and make sure I wouldn't need any invasive dental work in future. Unfortunately a previous dentist had put a bridge across a gap between molars and the work was shoddy which meant I couldn't clean under it so both teeth had decay. I lost all of the teeth from the canines back on that side because of it but I'm grateful I was warned. Sometimes invasive dental work can cause a bony growth to form on the gum. I'm sorry Cheryl and any others who have experienced ONJ. It must be terrible but I'll continue to take my MO's advice because Femara and cancer both eat away at bone and I already have stress fractures.
In Australia, at last, the Advisory Committee to the Government has recommended Ibrance for government subsidisation. Its future price is currently being negotiated between Pfizer and the Government but it's expected to be about AUD40 for Australian women. Breast Care Network Australia is to be congratulated for their hard work in lobbying the government over this inclusion. What a win!!
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Oh MountainLady, I missed seeing your post before I submitted my last post. I have strange red patches on the tops of my feet and on the back of one of my hands which sounds similar to your rash. I didn't have it before I started on Ibrance last February but it appeared within about two or three months.
Hair. Mine has thinned quite a lot but, although it's fine hair, luckily I had a lot of it. I still find it strange to put my hand on my head and feel how flat it is because it's lost its wave/curl except for the ends because there's less volume. I've started using Regaine which men use for male pattern baldness because that's what Ibrance causes. It's working well. I can feel a lot of stubble coming through so even if I continue to lose hair, which seems to be happening, at least it's being replaced. I haven't read of anyone going completely bald, just the male pattern baldness issue.
When it comes to dryness of the mucous membranes, I noticed it immediately I started Femara, which I was on for three months before we added Ibrance. I definitely need to use moisturiser all over my body and my sinuses and eyes are dry. Even the back of my throat dries out when I sleep and I've actually had water go up and out of my nostrils instead of down because my throat was so dry it rejected the water! Now I sip water carefully during the night when I wake up.
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Good luck today, Ashlyn! Lakewoman, I'm so glad that you had a positive experience yesterday and have a plan. A proactive plan makes all the difference.
On the "smoke" issue after taking Ibrance, I had that occur 3 times early on but haven't experienced it over the past year or so. My oncology nurse had never heard of that, but several on this site have experienced it. My solution is to drink a full glass of water after taking the capsule, being sure that the capsule feels fully "washed down" before stopping the drinking. Also, try to burp as soon as you're finished with the water. I found it was the burp which caused the smoke effect, and if it's delayed, the capsule has had time to start dissolving.....and thus, whoops.....SMOKE!
Another more emotional evolution for me is that during the first few months of Ibrance, I sort of hated looking at the capsule, and somehow it felt like the enemy. I didn't like touching it or thinking about it or seeing that huge display case on my bathroom counter. Of course, Ibrance is the "knight in shining armor" rather than the enemy. Now, it's just part of my morning routine. Eat, take Ibrance, move on.
Hugs to all-
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Cure-ious....It seems you have a very conservative MO. Mine does scans every 3 months. If I had one for every new pain, I'd be having them constantly...LOL
Hope
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Just on second week of cycle one. Thanks, now I know I am not crazy about the smoke. The first pill I swallowed, I had a puff of something come out of my mouth.
I too experience extreme dry nose and this is my first cycle. my mouth and throat too, so I do sip water at night. The skin is very dry too.
thanks for posting all your experiences, it is reassuring to know not alone.
do you ladies have ringing in the ears? any joint pain or muscle pain for you ladies?
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Hope991- If you are taking Letrozole too that might be causing the joint pain. My doc told me that the Letrozole would make me feel like an old lady when I woke up in the morning. So far that has been right on the money. I just finished my first cycle of Ibrance and am beginning my off week. I told my kids that I couldn't wait to make some kind of art installation with all 250 bottles of Ibrance I'll have. They seemed confused until they realized how many years that equated to.
I would have never even considered being hopeful enough to dream of years to come, if it weren't for this group. Thank you for gifting me the ability to dream of a future again. I know this medicine can be fickle and I've still got a bumpy road ahead. But, for now, it feels like I've got a secret weapon.
Lakewoman- I'm glad you have a plan that will see you getting that nasty TN tumor out of your body ASAP! Good luck.
I do wish I could get a better read on whether it's working or not. I have to wait two more cycles before I will get another pet scan. My TMs are all over the place, and my liver enzymes are really what we're hoping stay down. They are the reason I'm in this mess to begin with. My bloodwork looked good at my last visit, but will still low. Does it usually rebound during the week off?
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hi georgiabird, not on letrozole, on faslodex and xgeva. finger joints and knee and other joints too.
yes, i feel the same way, thankful for this community of strong ladies.
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Hope991 and the other "newbies", about the dryness: when I first started Ibrance, my onc told me to drink a gallon of water a day, or as close to it as I could get. Not only would it help with mouth, nose, and skin dryness, it would flush the Ibrance out of my system better. First thing every morning, I fill a large pitcher with water and stick it in the fridge. Not only do I have no dryness of the nose, throat, or mouth - my skin has never looked better!
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Thanks, Ciaci - I'm going to print out your post, make copies, and tape it to my mirror, computer, and fridge -- I have such a hard time convincing myself to drink water!!
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Particulargirl, I use that water flavoring stuff to get myself to drink more water. You can get it with no sugar and Stevia to avoid the bad fake sugar. The brand I use is called Sweetleaf.
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MO Beth, thank you although you should know, I wasn’t the only one who felt that way although not everyone posted about it. Stage four cancer doesn’t give us much time to worry about stuff other than staying alive. You didn’t answer whether you were stage four or even taking Ibrance
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