Ibrance (Palbociclib)
Comments
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HLB- I don't know the answer to that question. You can call the drug company hot line and ask them or ask your MO. Can you email a question to him/her? As far as TM's. They are not reliable for some of us. Before I had any treatment for Stage 4 and it was found that I had many bone mets my 27-29 was 42. They have gone up every month since I started the protocol but there has not been clear evidence of progression but healing areas where I did not have rads. Not saying it's reliable for me, but my next scan will tell the only story. TM have jumped 30 -60 points in a months time and sometimes stayed the same for me. I feel great till I see them and then anxiety sets in. My mo didn't want me to know them. Hugs Carol
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Cathy, I think it's good to post about these annoyances as you like to call it. Because our Dr's can't know about everything, we sometimes need to point them in the right direction, good for you for keeping the appt. I hope it clears sooner rather than later, cheers, dee
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Deanna, I was stopped on day 11 when mine was .86 and tested again 4 days later to find they were .60 so I had to take 2 weeks off. Your bone marrow recovers quicker and this is why everyone is different. Yes they must be 1000 to restart and the test here with me was it was not going to be 1000 within my 7 days off and if I had finished you never want under .50 very dangerous. That is why my cycle 2 on 2 off works for me. I have a chart over the past 9 months and you can see that I was not rebounding fast enough. It has taken me 9 months to get to this point where I am hopefully on the right combo.
Z- I pass out easy too. Better now then in my earlier days but fainted with all blood work. Even when my ears were pierced.
Hugs Carol
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lol Z, I faint all the time. When I get a nose bleed, when I had to test my blood in biology class ( I was not successful), when I do scans, when I found out I had bc again I fainted at work. No the feeling.
I found out yesterday that this red patch I've had on my right boob is bc after all. It's been there for a over a yr , showed up after my BMX, and nobody could explain it. Once again I trusted their knowledge and now it's spread to lymph nodes. So now I have skin mets/IBC too. Everything that can go wrong is going wrong.
I still work, maybe I should just go to bora bora. I have 2 young kids. I have to agree that it is exhausted looking at all the information and possibilities. I always feel like I'm not doing enough. And it just takes time that j don't have.
I hope this Ibrance works. I'm only 60% er this time around and 0 or. What r u ladies er%'s?
DD
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DD sorry you are going through all of this. My original bc was Er pos. This time around I bet I am very weak cause my bone biopsy said triple neg but this protocol is still working. I'm 64 yo
Hugs Carol
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Thanks LovesMaltese. That test has always been very reliable in my situation for 4 years (and the 8 year remission) but maybe that is changing.
Cathy, I recently read about that rash when I was reading about a specific oral care regimen that was giving it to some people. Based on what you said it sounds like it could Def be a se of ibrance.
When I first had bc in 2004, the path said highly er+/pr+, but there were no percentages. There was also no info about luminal or Ki67 that I see people talk about. Since mets I have not had a bx. It also said does not overexpress her2neu. I think things are a lot more specific now.
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Shetland, I have heard of the trials with a different CDK inhibitor. Someone on here said that they work on a different molecular level that does not affect the liver as much. I asked my Onc about it and she hasn't heard of it yet. Told her I would dig up the info and bring it in. Hopefully the 75 mg works for me....Deanna, My Onc also seems to ignore any differences in ILC subtypes. Says they treat it the same as IDC. It's sooooo frustrating to read conflicting research and try to figure out what is right and true. I hope and pray that the symposium brings forth some great new information.
Welcome cs0600! ILC is a tricky one. Mine was not detected one year on mammo, 1 1/2 years later a palpable tumor and Stage IV in my liver! I agree that the Docs don't really look at us as a holistic whole. Just there little area of expertise. I have complained to mine for months about heart palpitations and she writes it down on her screen but that's it. No concern or recommendations....I've been to cardiologists in the past, as I have had these palps for years, who all say "anxiety". But I still don't buy that. It is not normal and I am not "anxious" in the way that would cause this particular symptom. It is very frustrating and I am tired of spending money and time in the Dr.s office to no avail.
Z, If Ibrance Letrozole fails for you you, my Onc switched me to Faslodex/Ibrance which she says works with a different mechanism? I can still return to Letrozole alone if needed. We quit that due to the elevated liver enzymes when it has now been determined it was probably the high dose Ibrance. Sorry about the passing out. What a hard day. I'm glad you got through it and hope you get great results soon! I am almost done with Radical Remission again which is a very inspiring book. Now going to start Anti-Cancer. Thanks for the tip. Good luck in Seattle! I hope you come away with a wealth of useful info! I get excited over any new emerging Tx as well of course!
Dee, sorry you are stilling feeling so poorly AND you have to wait for labs. I hope the lowered dose and antibiotics kick in soon and you are feeling MUCH better soon. Not feeling well even a little can wear you down so fast....Like Z says, we each metabolize the Ibrance differently. When I first had to quit the 125 mg after 5 months it took 3 weeks to leave my system entirely.
Dancingdiva, Oh man, what can I say except we are thinking of you and I'm sorry for the new bad news. Hopefully staying with the same Tx will work just as well for the new site and you are soon feeling stronger again. Hang in there DD.
Boy HLB, We had better all read our reports very carefully huh? That is such BS.
Welcome Faith, Sorry you had to come back but this site does have some amazing women who are incredibly helpful. I think the Letrozole made me super emotional too. And the Ibrance definitely messed with my mouth but only for about two weeks then it got better. Be very careful standing up suddenly! You don't need a injury on top of everything else. Prayers for you as well and hope you sleep well tonight!
Cathy, You should certainly post what you think about possible SE's from meds! Thanks and glad you went and got a good answer from your Dr.
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Art- Do you see a difference regarding SE letrozole vs Faslodex ?
Hugs Carol
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I am having the worst stomach issues on Ibrance. I already have too much stomach acid and take meds for that, but I might as well be taking nothing. It was so bad that last night, I had stomach acid shoot out my NOSE while I was sleeping, which woke me straight up. The Zofran does nothing for it. This is awful, all I can think is that now I am going to get esophagus cancer for sure now with all this acid. Its always been a fear with my bad acid.
I'm only on day 13. No way I can live like this. I'm going for my labs tomorrow and will let them know. My energy is the same, thankfully, Still have chest congestion from before I started the Ibrance, but it's getting better.
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Mz- I'm sorry you are having this happen? What time do you take your Ibrance? Are you eating a big meal with it when you do? I did not do well if I take it in theafternoon or evening so after a good am breakfast I do best. I do know there is one anti acid that you are not suppose to use with Ibrance. Call the drug company hot line and run it by them. I also drink so much water after I swallow it.
Hugs Carol
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Mz I would be interested in what they say about your acid. Prilosec is the only one that helps me. It does get better after the first round.
GG I felt better on arimidex than femara and was switched back. No issues with the Ibrance or ins.
Animal crackers. I have an itchy rash on my chest. I'll be sure and mention it when I see MO next week.
Z sorry about the fainting. You are still a fighter! Thanks for sharing.
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Just a word of caution on Prilosec. It does work, but the warning about not using it for more than 2 weeks is real (even though you can buy 42 at a time). It's a long story, but I had Barrett's esphogus. I'm healed ( that's not supposed to happen) but now cannot get off Prilosec which has recently been shown to be very hard on your kidneys. So far, my kidneys are fine- and monitored monthly.
Use it, just not all the time. Talk to your MO about it.
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MZ - I had issues with my stomach because of where my mets are to start and Ibrance made them worse. I have had the same thing happen as you. Sometimes my food would come up with just a hiccup and no nausea or warning beforehand. I control it by taking my Ibrance at breakfast and not eating after 3-4 pm. I can't tolerate the Prilosec type meds at all so if for some reason I need an antacid I chew a gelusil tablet or 2 and I'm fine. I have become used to this schedule and it works great for me. Maybe it could help you too!
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Hey Dee - how are you feeling today? Better? Thinking of you.
Cathy
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mzmerz, hope you are feeling better and spoke to your MO about the acid issues. Please let us know what your MO said. I had acid in my stomach that got worse when I started ibrance. I ended up with emergency gall bladder surgery and yet I still have an acidy stomach. Did the ibrance aggravate an already angry gall bladder or was the gall bladder going to have to come out anyway, who knows? Chicken or the egg, right? I was on a proton pump inhibitor but developed polyps in my stomach so I went off of that. Right now I just control it with food. I don't have any reflux at all; just burning. It's nowhere near as severe as what you are experiencing so I haven't really worried about it. But since my mother has GERD and Barrett's esophagus and my dad has esophageal cancer (he's just finished chemo/rads and is heading to surgery on Monday) I am keenly sensitive to any issues related to the gut and esophagus.
Please let us know how you are doing.
Cathy
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Cathy, Feeling like I'm coming out of a hole, finally. But I have to say that I hate Femera! I've been taking it again for 4 days & my sinuses & mouth are so dry that it's giving me a headache. I told them that this happened last time I took it & MO prescribed the name brand, but it doesn't matter, my body hates it!
Zills, I'm going to ask to be put back on anastrozole, but my MO is on vacation next time I go over, I may email them today.
And another question, for those of you who are getting pamidronate, do you still get your infusion or could this have been a combination of the two? I'm thinking of having my infusions suspended til I get a handle on Ibrance/Femera or whatever AI they will let me take.
thanks all, dee
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Dee- Hugging you... not fair you were feeling so excited about being in this trial and it sounds like you have been thrown to the wolves. Hope you come out of this leading the pack. You deserve to feel better soon.
Hugs Carol
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thanks Carol. Just heard from the trial nurse, may have to travel to Vancouver today.... not being thrown to the wolves, but definitely not a fun time.... will keep you posted. dee
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Carol, It was hard to say which SE's were from Letrozole or Ibrance. I had elevated liver enzymes so she had me quit both together so we never got to investigate. I had EXTREME fatigue on the combo and got sinus type headaches. I thought we should have cut the Ibrance first to see if the enzymes decreased, as I showed improvement on the mets with the combo, but she had different ideas. We should have tried reduced doses first in my opinion. Oh well, water under the bridge I suppose, though no less aggravating.
I had NO SE's from Faslodex alone but showed slight progression so she pulled me off of that. I wonder if we had added lower dose Ibrance to that if I would have shown improvement?? Now I am on Arimidex with no SE's and enzymes were fine. So I just started 75 mg ibrance. Only 2nd day of round two with Ibrance so no SE's yet. Last month on the 100 mg I was feeling tired by the end. Hopefully the enzymes will stay normal this time. She says I can return to Femara at a later time.
Cathy, Hope your Dad does well with his surgery. Some families get more than their share of trauma.....
Dee, I'm glad you are finally feeling better. Sorry you have to travel again. That just adds to the stress and fatigue. I hope this all shakes out soon for you.
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so the trial MO has decided that I don't have to see her this week. My PCP is popping into the office tomorrow, he wants to see me, so that makes me feel a bit better. I'm to stay on femera til I see her and then she'll decide if they will change that. Definitely starting to feel better. de
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Had my monthly lab/dr. visit/xgeva injection yesterday. My WBC is steadily going down on the Ibrance. I have to have a CBC in ten days, lay off the Ibrance for 2 weeks and then they will most probably decrease the dose from 125mg to 100mg. I hope this won't be a set back.....
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Hi Judy, I assume you neutrophils were not high enough to start back up and you have neutropenia? They need to be (1000) to start back up ---White cells alone really don't hold you back, mine have been as low as 1.6- It is quite common for this to happen. MO's follow the trial recommendations etc when your numbers tank. It won't be a set back- your body needs less of the drug to work is how it was explained to me.
Hugs, Carol0 -
Just about everything is going steadily down. Including wbc, Hematocrit, hemoglobin, platelets and neutrophils. The APN didn't officially call it neutropenia but they are concerned enough to have me redo a CBC in 2 weeks, after being off the Ibrance that long....
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Artistatheart - thanks for your well wishes for my dad. Just found out today that his surgery has been postponed due to congestion and a cough he has been fighting that just hasn't cleared up. Seems to be viral as the antibiotics they gave him haven't helped. So his surgery is on hold 'til his lungs are clear. It has indeed been a stressful few months in my family.
Cathy
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Dee what about lowering the dosage of Ibr? Feel better soon!
Cathy wish your dad a quick recovery.
After very "heavy" emotional visit with Doc today, it was decided that they will take Dani off Letrozole, she told me bcs dani has ESR and that means that Letrozole is not doing anything. Anyone know about? Does it make sense. i would love to hear what you, ladies know about it.
So she Off Ibrance and Letrozole, going to Navelbine/Herceptin.
So I won't barge in here too often, i would like to check on you wonderful ladies, but I don't wanna be an intruder, and i am afraid things are changing.
Last Pet/Ct, and yesterday's MRI of the Brain, was very not nice. There is much progression on all the bones, and the liver is full of specs. Extremely sad, doc was kinda 'having a talk" in preparing Dani, i just can't. She really hopes this new combination works and then she says there is next and next. But things are serious. Gotta make a decision of Brain rads also, but there is gonna be a front patch with no hair regrowth, so D is taking it hard. Nothing on the weekend, and Monday we'll have to make some decisions about that.
Sorry to leave you here on this note. You guys have been terrific. There is much hope out there. We just gotta have the winning numbers. I'll chime in from time to time
Good night...
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MomATT, sorry to see you go, but you've got to go where you can best get answers for Dani. I will miss all you cheerleading for me & all of us, but you were always digging for info for Dani. I wish the both of you all the best to find something that works. cheers, dee
ps, they are lowering my dose to 100mg, 21 days / 28 thanks for asking.
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MomATT, I'm so sorry to hear the news of Dani, please know you are both in my thoughts and prayers as well as all of us here. You are never an intrusion, come back as often as you can.
Dee, I'm glad you're feeling a little better. Let us know how the lower dose feels.
Cathy, prayers for your father also.
MZ, I'm sorry about your stomach issues. I also have problems but lots of water really helps. I take the Ibrance after a hearty breakfast with at least 20 oz. of water. Then I take my vitamins with more water. My MO told me to drink 3-4 quarts of water a day. Yes, quarts! It's not easy to manage all the potty trips but I think it helps reduce the SE's. I also started taking the letrozole after dinner and that helps.
Healing prayers for all.
Faith. (In the future
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I went to get my lab done and told them about the stomach issues. They suggested I double my ranitidine. I had actually done that the day before on my own and my stomach was good. Not great, but tolerable. Hopefully that solves it.
The onc was not actually there, but I asked for the nurse to listen to my lungs because I still have that cold from 2 weeks ago. She listened and said to go to Urgent Care asap. I have a walking pneumonia, so now I have a zpak to cure that. It apparently can cause heart issues if you take Zofran when you are on taking Azithromycin, so I have to avoid the Zofran for now. I can't win.
My labs came back with my blood counts being good, but my potassium was low, and my calcium was high. They want me to take potassium pills, but when I did that back with my original Chemo, they ripped up my stomach. Still not winning! I think I will maybe try to manage it with food. They want me to drink a LOT to combat the high calcium. Labs again in a week.
Thank you for all your suggestions. Sure glad I am not in this alone, but sorry we are all in this!
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Momatt- I will follow you where ever you and Dani are - Thinking of you and have a great weekend. Prayers as always ---
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mom, will follow you too. Ur in my thoughts. I don't know what eSR is.
I'm starting to have stomach issues, gas gas gas.
My wbc was at 1.4 after just one round.
Tired. When do u ladies take ur Ibrance.? I take it at dinner but maybe will switch to lunch, I eat more than. Is it supposed to be had with ur biggest meal?
Have a nice wkend ladies
DD
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