Ibrance (Palbociclib)
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Frenchhorn I will second what Grannax said about getting an MRI. When I was first diagnosed MO sent me for a PET/CT because it was growing so fast. There were spots on my pelvis/sacrum area that showed up on the PET but not the CT. An MRI was done to double check. And the spots that were in one breast on the scan didn’t show up on the MRI. Some days it’s just how your body handles the uptake - activity doesn’t mean cancer. I just started abraxane last week since my tumor started growing again very quickly. I had settled into minor side effects with Ibrance/letrozole and hope to be able to try it or something similar when I’m done with this. Good luck
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Jens, good luck with scans later this month.
Frenchhorn, waving hi. We're pretty selfish on this thread, and don't really want to lose you. So here's hoping a fresh look at your results keeps you here with us.
Candy, I'm a suburban girl so don't have anything to offer, rural friend. Hoping someone chimes in with thoughts soon.
Faith, woo-hoo doing so well on Letrozole alone! Long may it serve you well.
Lastly, crazeejane, by now you probably have your results and, fingers-crossed, all is well. I learned the hard way that this tx increases the risk of PE, so anytime you present with lung issues, you're likely to be whisked off for at CT. Probably not a bad thing, it's just worry-making and inconvenient. Unless of course you do have a PE, in which case it's a good thing.
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The CT was negative for a PE thank heavens!!! They figure the pain is coming from my sternum and is just a side effect of the Xgeva. Thank you all for the kind words. I’ve been having a rough time coping with all of this lately and really wish I could go back to how things were before I found out I had MBC. Am I wrong to feel that way? The past few days have just been rough emotionally.
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Crazeejane-I think we all wish we could go back to how things were before MBC. Who wouldn't want that? All of this is such a shock-be gentle with yourself.
Candy-How far are you from Chicago or St. Louis or even Evansville? To me it would be worth a long drive to have more experienced doctors look at my case. I've had great care at Northwestern Memorial in Chicago which is a cancer center.
I am actually celebrating my two year Cancerversary today. I"m going to a Cubs game and not working at all. I was so sick two years ago-I doubted I would make Christmas that year or even Thanksgiving. Of course I'd rather not have cancer but these two years have felt like a bonus and for the most part they have been good years. I left my job b/c I was too sick to continue and have tried to focus on caring for myself and enjoying life. Of course, being almost two years on Ibrance has me a little worried-now with every ache or pain, I wonder-"Has the Ibrance stopped working?" But I'm grateful for this drug and the healing it brought me. I feel like a cure for MBC is getting closer and hope we all live to experience it.
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Chicagan I may have asked you this before, is Dr Cristofanili there at NW? He was my MO at MD A in 2001. I read that he's now at NW. He was my favorite MO ever. I was so disappointed when I found out he was no longer at MD A.
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Grannax-Yes he is. I haven't seen him but apparently he is a quite a renown researcher. Good to know that he was good with patients too-the two don't always go hand in hand.
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Hi All,
Faith, awesome news.. sending good vibes that this keeps working well.
LovefromPhilly, I appreciated the beautiful words of encouragement that you wrote
crazeejane -Great news about your scan and I get what you're saying. The roller coaster of MBC is a lot to take in and sometimes things are moving so fast it's hard to process and get your bearings. I can relate to what you're saying very much. You are never "wrong" about how you feel, give yourself grace and allow yourself your feelings. Hang in there dear. You can do this.
Wandering - thanks for the encouragement, I'm exactly where you are
Jaylea - thanks for making me feel wanted and included
candy -I live in a rural area in Wyoming and have been trying to get a support group going for anyone with MBC but am finding it difficult because of all the privacy issues to even find out who's out there. They have a group that meets during the day while I'm at work, but I would love to have a group that maybe goes out to dinner once a month, does a book study together, maybe the book that PatgMc (Cancer as a turning point) suggested.
I feel like I'm getting good care, have had second opinions from onc's in Denver and and am very comfortable and trust my onc team. The support of this group is important to me because everyone here "gets" it. It's not a pity party but support with humor and understanding.
I also don't know who to use as a medical power of attorney, my daughter did very reluctantly agree to be responsible but I hate putting that in her position. So many things to think about.. and me.. I'm a bit of an ostrich and sometimes just feel like hiding my head in the sand!
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Crazeejane, yes, I agree that MBC has changed my world and I would love to go back. I miss work. But yay that you received good news.
Faith, great news, and it is good to hear from you again!
Chicagoan, I am 4 months past my 2 year cancerversary and with you, I worry about every little thing. My last scan did show a "subtle change" in 2 previous spots but I am hoping they will turn out to be nothing. But we are watching me more closely now. Like you, I am thankful for this drug and looking for a bright future.
Frenchhorn, Even though my DH is very willing and able to be my power of attorney, for some reason I struggle emotionally getting that document notarized. It is not because of him, it is me emotionally. Makes things more real and final. I know, how much more real can we get? But I still struggle. The form I was sent also talks about funeral preferences. I think this is the part that grabs me the most. I am not ready to go there yet! Everyone is telling me I look better than I have in a while and I wonder where that is coming from. I do feel pretty good most of the time as long as I don't overdo it. So newbies, hang in there!
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Crazeejane, yes, I agree that MBC has changed my world and I would love to go back. I miss work. But yay that you received good news.
Faith, great news, and it is good to hear from you again!
Chicagoan, I am 4 months past my 2 year cancerversary and with you, I worry about every little thing. My last scan did show a "subtle change" in 2 previous spots but I am hoping they will turn out to be nothing. But we are watching me more closely now. Like you, I am thankful for this drug and looking for a bright future.
Frenchhorn, Even though my DH is very willing and able to be my power of attorney, for some reason I struggle emotionally getting that document notarized. It is not because of him, it is me emotionally. Makes things more real and final. I know, how much more real can we get? But I still struggle. The form I was sent also talks about funeral preferences. I think this is the part that grabs me the most. I am not ready to go there yet! Everyone is telling me I look better than I have in a while and I wonder where that is coming from. I do feel pretty good most of the time as long as I don't overdo it. So newbies, hang in there!
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Chicagoan Yes, he was both to me. I credit him for saving my life back in 2000. I would like to email him and give him an update on me. I wonder if he has a newer one because he never answered the one we sent to him two years ago.
Unless I heard it wrong, his research led to the Circulating Tumor Cell blood test. I thought that was pretty amazing. But it seems like it hasn't been used much.
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Hey all,I had a question about WBC. My mom is nearing the end of her first cycle, she has about 5 days till the rest period. We just got her blood tested and her WBC is 4.8. I know this isn't technically neutropenia but I was curious if its "close" to the 4.0 cutoff (I know sometimes with medical figures just because numbers seem close they might not be) and if falling under 4.0 would mean she'd have to discontinue the treatment. Also, do the levels tend to follow the cycle—meaning, do they tend to be lowest at the end of a cycle and build back up during the off week? Finally, is this something that tends to get worse over time? I just know this medicine is her best shot right now so I want her to be able to stay on it so I'm kind of neurotic.
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skyfly I'm not sure about the significance of the wbc count. My MO focuses on absolute neutrophil count. (ANC). Did you get this number? They look for it to be over 1. Last time my count was .94 so I had to delay the Ibrance by 3 days. Remind me did they start her on 125 mg? Also how is she doing with SEs?
P.S.Yes the levels build back up durng the week off.
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Penny: Ah drats I didn’t think to ask for that. I’ll add it to my growing list of things to ask him at our next appointment.The nurse said the numbers look good so I guess it wasn't anything alarming. Her SEs are not too bad so far the biggest has been nausea and strangely some severe heartburn, which I haven't seen a lot about so not sure if it's related.
How are you doing? It's a very nice of this forum with all of the anonymous facts and figures on the internet to find some familiar, recurring faces in this fight.
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hi! Not sure if this matters or not but my WBCs were at 2.5 last blood draw and neutrophils were at 1.0. I had some dental work done so my MO had me take 1 extra week off Ibrance.
As far as I know they look at the neutrophils mostly to determine if Ibrance needs to be put on hold for a few weeks or possibly lowered dosage.
Hope this helps with your mom
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Hi everyone! Sorry for the long delay I have been dealing with the legal system/justice system as well as my cancer. I am seeing a Cancer Pain specalist because of the neruopathy. I am on a upscale regimine of my gaba where last week was 300, 300, 600, now its 600, 600, 600, plus three of the cybalta. I am still having pain though and shakes but my anxiety and depression has been bad another reason why I was away. Still dealing and coping with a lot right now. I am about to give myself a break and going to Alabama for a week to see family and friends and do a race. My hair started falling out badly in clumps last week so I have cut it in a pixie. I will have to show a pic soon. I also got my appendix taken out almost two sunday's ago. I cannot seem to catch a break so it seems. Just wanted to bounce in and say hi to everyone and welcome to new ones. I am on round 13 I go off this next week and get an infusion and seeing my oncologist. I am still trying to move oncologists. Still working on it. Sigh or they are. Well talk to you all soon
Chani
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lovefromphilly: thanks for the very helpful answer.I was wondering if you are on biophospates (i think thats the name) for bone mets? My mom is getting a shot, i think xgeva, shes had a single dose. Anyway, she needs some invasive dental work done and I’m reading all this stuff about how thats a no go.
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Hi skyfly, it’s regrettable that her doctor didn’t ask before the Xgeva started about needed dental work so that it could be addressed before started the shots. What I’ve been told at UCLA is that dental work above the gum or below the bone is where problems can occur. Routine cleanings and fillings are ok. It if it’s extraction then she may need to delay Xgeva until that work can be done. Definitely a question for the oncologist. If you’re near a research university with a dental school you might seek out someone familiar with osteonecrosis
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hiya Jensgotthis: thanks for that feedback, I’ll definitely make it a point to ask him. She already had one shot so i guess the ship has sailed and ONJ is definitely the last thing my mum needs to potentially deal with right now. I want to give the onc the benefit of the doubt, maybe he thought it was crucial she start immediately based on her extensive bone mets putting her at risk of fractures but it is odd he didn’t even mention it to us. I already have my misgivings about him and his overall demeanor. Anyway sorry to hijack the ibrance thread with bone mets stuff! Thanks as always you folks are so wonderful.0
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Skyfly, my first onc said that .8 on the ANC scale was the point at which she'd make me delay the Ibrance. Also, if this becomes a concern, many have experienced good success with the lower dosages of Ibrance (either 100 mg or 75 mg). I am personally on cycle 21 of 125 mg Ibrance and haven't had to delay yet, though it has been close a couple of times. Your mom is so fortunate to have you in her camp. AND, we don't feel highjacked on the Xgeva and dental issues. That's what we're here for, and discussions related to Xgeva have figured prominently in many discussions. I'm on it (started with every month and down to every 6 mo now). Jen gives excellent advice...get more information about that oral procedure. Even if the ship has sailed, it would be good to be knowledgeable going forward and know how to watch out for trouble.
Good luck to you and your precious mom! You're in great hands here.
To the rest of you, a quick update on the boat trip: we have made it only as far as the headwaters of the Erie Canal (minor crash into the concrete wall yesterday at Lock 3 in 30 mph winds) at Waterford. We are set to launch down the Hudson this AM, dodging flotsam as we navigate. We hope to be in NYC tomorrow sometime. And finally...sometime.next week out into the Atlantic (insert small yikes here) to Cape May, up the Delaware to the Chesapeake and HOME! Grannax, I hope that your trip to the Eastern Shore was blissful. I hated missing our wave!!
Hugs to all...
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Skyfly, about your mom's Xgeva shots - not sure if you came on before or after the last discussion about it, but a lot of us have found that taking Claritin (loratadine) for five days around the shot (2 days before, day of, and 2 days after) helps negate side effects. The Xgeva releases histamine, and the loratadine is the antihistamine that seems to work the best. After my first shot, I had pain, nausea, and joint aches for days. Then I heard about the Claritin and voila - never had a single side effect after the shots! I learned about it here, as my oncologist hadn't heard of it being used that way. When I reported back to her that it worked, she started recommending it to all her patients.
I had the Xgeva for six months, then when scan showed met was gone and bone lesion completely healed, doc switched me to Prolia (same drug, lesser dose) every six months. I need a wisdom tooth extracted, and my onc said to go ahead and do it, but I'm scheduling it right between the shots for my own peace of mind!
As for the WBC, 4.0 is the lowest "normal" reading. I haven't hit 4.0 during my 3 weeks "on" since starting the Ibrance. My bloodwork was always done on Day 15, and my WBC averaged 3.2 then, for the last year.
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hi skyfly - you are asking all the right questions! Don't worry about bothering us - I think we are all so happy to give our input. And you know what? I just learned something new because of your post! I hadn't heard about the Claritin before and after the xygeva shot!! I am gonna try this next time
thanks Ciaci!And yes, I agree completely with what everyone else wrote. Dental work should have been discussed prior to shot. My MO explained it as that if a person has extensive dental issues - like major stuff going on - that the ONJ could be a side effect. I have had fillings and a crown but my teeth and gums are overall very healthy so we were not worried.
When I did go in for a cleaning, my dentist had to get permission from my MO to "mess around" inside my mouth just for a simple cleaning and dental exam which was a surprise to me. After all that commotion, the dentist forgot to do the exam!!! 😂
I just had a wisdom tooth extracted last week. My MO team withheld the Xygeva shot for about 2.5 months prior and we will resume the shot next month on Oct 22. This way we made sure that the xygeva was no longer in my body or something like that.
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Okay Ibrance dancers, are fingernail and toenail problems a side effect of Ibrance or maybe letrozole or both?
I did have taxol but I didn't have any nail SE's and it has been six months since my last taxol. Anyway, my nails are weaker and seem a little ripple-y. They aren't lifting, and they are growing. It's weird. I didn't notice this until a couple of weeks ago. My hair got about an inch long, then stopped. I can't even express how much this distresses me.
I'm on the seventh cycle of I and L. I never got rid of any fatigue after taxol and it continues. The letrozole has packed on the pounds which makes me feel terrible, physically and mentally. Yes, I'm eating less, a lot less. I exercise as much as I can and still be on my feet. The pain from my hand and from bone mets....well, you all know what I mean. My mind knows I am better off than many folks, but my heart is so, so, so, tired of it. Thanks for letting me whine.
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MuddlingThrough, yes, your nail problems sound just like mine. You are right that they grow but are thin with ripples. I have been on I/L for 28 cycles and it is no worse than a year ago. My hair still grows on my head and I get it cut or it looks ridiculous long, but is thin and brittle. People tell me it looks fine, but it is not my preference. I don't need a wig--yet, but I have one for very dressy occasions. I rarely have to shave elsewhere which is a small blessing (I will take anything positive!)
My fatigue continues although some days I actually feel pretty good if I don't do too much. I gained weight but have learned now how to maintain it now. I would love to lose 30 pounds but that isn't happening. The only extra exercise I do is walking, but I can't go very far.
Hang in there!
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Thanks IntoLight, that does sound similar. I do have to shave though and find that adding insult to injury, ha! The taxol I had months ago took all my hair, eyelashes, and eyebrows. My lashes and brows have come back and fallen out again a few times, but not totally gone as at first. Lashes also are shorter and stubby but I'm glad to have them at all. I'm not particularly vain but since very few people know of my illness I still refuse to go places like this. I just want a short hair style that looks like hair instead of a boot brush. Oh well, my mother always said s*** in one hand and wish in the other and see which one fills up the fastest.
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MuddlingThrough, ha ha! Love that saying! My hair is curly so perhaps that helps? I don't have a good picture of it but I will try some time. The one I use for my profile pic is 7 years ago the day I got my PhD. I used to straighten it everyday. Now I just condition and go!
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Hairless in Memphis here! Mine never came back after Taxol/Carboplatin. Actually, it grows enough that I could double for a little old man with bare patches. No eyebrows. Thin lashes. I did use the Rodan & Fields Lash Booster for a couple of months and it worked to thicken them but I itched and burned and sent it back for a refund. I ordered 4 or 5 of the wig style & color I liked which I thought was pretty optimistic. I can live a really long time and look exactly the same! (I spent my whole adult life and lots of money getting my roots done. Now I have 5 wigs that are blonde with dark roots. Go figure!)
About XGeva: I did have a complete exam and a little repair work before starting. Skyfly, I could be wrong but I think the risk from these drugs is cumulative. If I were your mom I'd stall the XGeva shots and get the dental work done ASAP. When I called for an appointment I explained my situation and they took me the next day. It wasn't even a dentist I had been to. People are nice.
About indigestion, that's the most consistently annoying side effect over these two years. (Well, that and nausea.) Taking a Tums or two at night helps and it also keeps my calcium in normal range since the XGeva robs the body of it. I also take an over-the-counter Pepcid AC right before dinner. I stopped having mouth sores after eating plain Greek yogurt for a long time and then I stopped. The indigestion got worse so...duh!....I started the yogurt again and I'm better. Stony Field Yogurt/Plain with canned pineapple added is yummy.
Joyner, be safe and send more pictures! I hate that your crocheted suits were lost in the mail. Must be because of Florence!
Intolight, so we have to call you Dr. Intolight?
Two Year Ibrance Anniversary on October 2! I remember going to Target to buy Motrin Junior which was going to be the beginning of my pain therapy. I have a real aversion to taking medicine so that was a big step for me. Some of you know the story of how I went to a physical therapist who resolved most of my discomfort with 13 treatments of Myofascial Release Therapy. The Motrin Junior bottle is still gathering dust which feels terrific. I know some of you deal with pain on a daily, even hourly basis and I pray you get relief.
God bless all of you on this rainy Saturday. Roll Tide!
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ROLL TIDE!
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you guys bring up something that i wondered about and keep forgetting to ask my MO. every year i have gotten one it comes out that it’s not affective on the strand that is going around. is it safe to get since our immunity is down?
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holmes, my oncologist said NO to a flu shot for me, which makes me uneasy. My immune system is down but it's always been enough to stay on Ibrance with no breaks. I believe the vaccine is not a live virus but if I get it anyway then have problems he won't be happy with me. Most people who commented here so far say their MO allows them to have the flu shot. I am afraid of influenza!!
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Holmes, my onc had me get the flu shot while in her office--the high dosage one since I am 65. I had no problems at all. I think it is worth discussing with your onc.
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