Ibrance (Palbociclib)
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hi Mike!
I tell my MO about every single side effect cause that’s what they’re there for, and I believe they should know. Plus, they may have some good suggestions about what to do. Sometimes they’ll want us to get our WBCs checked to make sure it’s not an infection.
Sorry your wife isn’t feeling well. Please let us know how she is doing
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NicoleRod -- I'm so sorry you've got an URI. I hope you feel better soon. Your sore throat transitioning into an URI is very sobering to us.
LovefromPhilly -- FYI: My wife and I are just outside of Philly: near Cherry Hill, NJ in Voorhees NJ. Between your advice and NicoleRod's sore throat into an URI, we're definitely going to notify my wife's MO of this sore throat.
This site and you ladies are invaluable. Thanks so much.
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Hope she feels better soon. Keep us posted
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Go Tanya. Have it no other way.
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I was wondering if anyone has any advise/info for my mother. She was dx in 2015 with bone mets. Her dr recommended femara/Ibrance combo as first treatment. Her wbc (which was already extremely low) began to drop so she discontinued the Ibrance. Since then she has used afinitor, faslodex, and now Verzenio. (If there were others, I can’t remember). Her tm have been slowly rising since last fall. But scans every 3 months since then have all been clear. She recently had fluid from abdomen drained and mo said it had cancer. He wants to start chemo navelbine immediately. She mentioned trying ibrance again since she only took it for a few weeks in 2015. He said no. I’m always concerned she’s not getting the best care. She’s very upset about having to start the navelbine, but feels she has no other options. Do I encourage her to get a second opinion? I’ve tried to to research as much as I can. But the more I read the more confused I get
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So sorry to hear about your mom. I would definitely have her ask her MO to test her HER2 status because if it has changed which I have heard it can...then Ibrance wouldn't work anyway.
Definitely get a second opinion and a third if possible it is ALWAYS good to compare treatment plans. I got 3. They were almost all the same except the one I went with went the extra mile and added in a med that the other consultation was gonna wait to add in.
I say definitely get other opinions.
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Mike’s Wife ( sorry Mike, bless you, but it’s your wife I’m speaking with here) I’ve had 10 cycles of Ibrance now and am paranoid about any aches, pains and stuff like sore throats! I had an infection which started with a sore throat when in Primary treatment which put me in hospital for a week on IV antibiotics.... not the nicest experience ever, so I do know what I’m talking about.
However, my med team have calmed me down a good deal by using the whole temp thing. Buy a decent thermometer and take your temp. 37 degrees means possible infection, which is what we worry about and straight to a&e or contact your team directly. Suggest you do not take it straight out of the shower or drying your hair or after a night sweat! Basically take your temp over a short period of time. Other than that you can have a cold, sore throat, both of which I have had in the last yearand all the stuff and be OK, amazingly.
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BoyMom1, absolutely encourage her to get a second opinion. Waiting a couple of days or even weeks won't make a difference if she ends up choosing the navelbine, but for her peace of mind (and yours!) she should explore her options before making that decision.
Wishing you luck!
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Thanks all for the advice for my wife. She did call her MO's office who said that if the sore throat gets worse or there are any other symptoms she should definitely have a throat culture done. I'm happy to report that her throat feels better today but is still sore. She did have a bloody nose last night that was also discussed with her MO.
Karenfizedbo15, I did read your message to her and as a result of it, I ran out and bought a brand new thermometer. Her initial reading was thankfully 97.5F (36.4C).
We get the next blood work done on Thursday. I'll be curious to see what her her WBC is.
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Mike I am about to start cycle 3 of Ibrance from what I can tell on here it seems like the large majority of people have minimal side effects after the 1st cycle. I had practically none. Then when I started cycle 2 I started seeing more. So I think the longer we take it the more we may see. Glad her temp was good
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BLMike - ahhhh we are basically neighbors!! I know there’s a few of us lurking around these parts but I haven’t personally met anyone in a while. How is your wife feeling? She is so lucky to have such a caring husband as you and I’m so glad you found these boards. We all support one another’s here! Oh wait just saw your response about how your wife is doing - so glad she is feeling better. Hope the nosebleed wasn’t too bad!
Boymom - I haven’t had to change treatments yet (knocking on wood over here) but I have read other folks posts and they really support getting a second opinion when it comes to a change of treatment or progression leading to a change of treatment. Not all docs think outside the box as well as others! You and your mother need to feel good and comfortable and confident with the choice you make.
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Hi Mike,
I am just finishing my 6th cycle and my SEs seems to be better now except for the fatigue. Days 16-21 are the worst.
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Are eye issues a side effect of Ibrance??? I am having some vision problems now...... almost like double vision with reading specifically when I put "readers" (reading magnifying glasses) on it's better but still not normal?
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Just got back from the oncologist with my wife. Good news on both the MRI of her liver and cat scan of the rest of her. Everything stable. Tumor markers are down lower than they were a year ago, and liver values have improved as well. That now makes over two years on ibrance 75 mg for liver metastasis. Just thought I would share the good news and hopefully this offers some encouragement to others.
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As someone just starting the liver journey, I really appreciate you posting this information. Great news for you and your wife!
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Husband11.
Love this good news!
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Husband, please tell your wife I'm down here in Memphis doing a little celebration dance for her and for you! This is wonderful news.
I love when prayers are answered!
Love from PatGMc
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Yip to both Husband and Mike... good on your ladies and on you both
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Nicole-I don't know if it is the Ibrance or the Letrozole but my vision changed under this treatment within the first few months. I went to the eye doctor and got a new prescription. Now everything is fine.
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Husband11 — hooray!!!!!! I’m so glad!!!!
BoyMom sounds like a second opinion is definitely important. These decisions are too important not to feel you’ve explored every possibility.
Nicole I had some veryminor eye issues after being switched from anastrozole ton Letrozole. They went away after a month or so.
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Husband 11 great news. Uplifting go wifey!!!
Nicole I have had eye issues they come and go. Usually in the morning. I’m blinking trying to clear the blur.
Tanya
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husband - great news!
Mike - glad your wife is feeling better.
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Husband11,
Great news! Thanks for sharing.
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Well, my wife's sore throat got worse today and she got some mouth sores (which the nurse over the phone thought might be thrush). As a result, we went in her oncologist office today to have her looked at. Fortunately, it was all good news: she doesn't have a fever, the nurse diagnosed the mouth sores as just that (and not thrush -- thankfully), and they don't think she has any kind of infection. Her WBC has continued to drop though (down to 2.3 today). We have an appointment with her MO on Thursday and they'll take more blood to further test her WBC and platelets then.
This is all so new to us, we just don't know what's "normal" and what's a potentially serious health situation. I'm glad we went to the oncologist office today and am relieved that so far she's just experiencing "normal side effects". We will, no doubt, eventually adjust to our new "normal", but it's nice to have a place here at BCO where we can vent and ask questions because otherwise I think I'd be going crazy with all the uncertainty.
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Hi Mike,
I get canker sores all the time. They have gotten smaller the last couple of months with less frequency. I use biotene toothpaste and mouthwash. Regular toothpastes and mouthwash are too harsh. I brush my teeth multiple times a day. Once I get a canker sore, I rinse my mouth with baking soda and salt or hydrogen peroxide (do not swallow). Both help the sores heal faster.
I also have the miracle mouthwash which you can get a prescription for from the MO. That will numb her mouth so it doesn't hurt when she eats.
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Thanks Simone80. Yes, the PA told us about the baking soda rinse and she's just started doing that. Great idea about the miracle mouthwash! I used that for something a couple of years ago.
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Mike and Husband, hurray on the great news! We love to hear that. Concerning SDs: yep to the mouth sores and eye issues. I have been on I/L for 39 months now and for me the SEs have not worsened. In fact, my mouth sores are rare now and eating Greek yogurt regularly and using Biotene when needed takes care of them easily. My eyes get blurry at random times. My MO suggested good OTC eye drops, and they do help. I have feared increasing fatigue and other issues, but I have been about the same for the past two years with only minimal energy decline. I do better if I remember to walk more, get sleep, and drink lots of water. So be of good cheer-- you can do this!
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I second what IntoLight says!
The thing to remember about Ibrance is that you can count on her to be inconsistent. I had some nasty mouth sores in the early months and Greek yogurt took care of them. I've gone months and months and months without the sores and then I'll have another little bout. I don't like the taste of Magic Swish so I have over-the-counter Anbesol.
My vision is blurry sometimes but I'm sixty-nine and maybe that would be happening anyway!
I worried for a while as I started having some hearing loss in my left ear. I feared that it would continue to progress but it hasn't. Actually, I think part of it was that my ears were not being cleaned as well when I stopped taking showers and began taking baths. (That was because of fatigue.) This is WTMI but one day I had something fall from my left ear and tink, tink, tink across the floor. I never found it but my hearing was better!! Gross, I know!
One thing I thought was caused by Ibrance has been revealed as an XGeva side effect.....soreness in the muscles/ligaments next to my ribs so that it's uncomfortable to twist around. I went one month without XGeva and the discomfort stopped., then took another shot and it started again. My oncologist would really like for me to take it every month but I'm backing off and doing 2 months on, one off and then will switch to once every 3 months. I've done so well he's reluctant to switch anything. We'll see!
I can't say enough how much drinking lots of water helps.
Prayer is important for my well-being and I continue to pray for everyone here.
Love from PatGMc (33 months dancing with Ibrance/XGeva/Arimidex)
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Thank you for sharing Husband! Definitely spreads hope to fellow ibrance users with liver Mets! I pray that I can say that after another year on ibrance. (13 months -ibrance,femera, xgeva)
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HI All - this is a long one, as I am just catching up!
Husband - I'm so thrilled for your wife's good news! YAY!! :-)
BoyMom - Agree with others that a 2nd opinion is warranted. Chemo may very well be the right thing for your mom, but it would make sense for her to get another opinion... preferably from a research hospital. It might be helpful to have your mom's cancer retested, as Nicole suggested, as it can transform and require new targeted therapies. I do want to correct one minor thing Nicole said, though.... Being Her2+ does not mean that Ibrance will not work. Being Hormone negative means that Ibrance will not work. However, it is possible to be both hormone positive and Her2+, in which case, Ibrance should work. Ibrance is NOT approved for Her2+ women, but that's only because it hasn't been tested yet (tests are in process). I am Her2+ and ER+ and I am on Ibrance with Faslodex and I also get Herceptin for the Her2 side. My doctor believes that Ibrance does work with Her2+ people who are also Hormone+ (which is the critical requirement) but that it simply hasn't been proven yet. He feels that they took the Her2 people out of the initial studies merely to reduce that variable in the research and get to approval faster, which makes sense to me!
Nicole - I am the queen of the monthly sore throat, voice loss, and sometimes URI. I got into the habit of getting an antibiotic every month and in retrospect, some months I believe I needed them. However, most months, I don't think I did. I took the advice from Jaycee and got a culture last month. It was clear. I went without the antibiotic and it went away on it's own. I do think it's a good idea to take the fever into consideration when considering calling in for an antibiotic. Thinking back (I wish I had the discipline to write these things down) I think I did have a fever a few times with the other symptoms and those are probably the only months where I actually needed an antibiotic. Sore throat and horse voice/voice loss are all documented side effects of Ibrance and while I agree that it can sometimes escalate, most times it doesn't - at least that's my experience.
I also get the consistent heartburn with Ibrance. I take prescription Nexium every morning (along with my daily Claritin) and it solves the problem. If I skip even one day (by accident) it's back with a vengeance. Clearly in my case the GERD is not causing the sore throat since I am treating that effectively. So I think that the sore throat can happen with and without GERD (to be clear, though, untreated GERD can and will cause a sore throat). .
Some months I also get the mouth sores. Like everyone said, Biotene (one of the greatest products on earth) and baking soda/water mixtures help. Only once were my mouth sores related to thrush, so my doctor gave me an anti-fungal, which cleared it up. I think I am now able to tell the difference so I know when to call for an anti-fungal. I had magic mouthwash with early stage chemo years ago and I need to remember to ask my doctor for it again when I see him this month. I'm wondering if it will help with the sore throat? Maybe it is caused by some little viral things that the magic mouthwash will shoo away? I'll follow up after I try it for that purpose.
I have noticed similar eye issues to what you describe, but I went to the eye doctor and needed a slightly stronger script (distance only). However, that appointment ended up leading to a wild goose chase, as they found that my Optic nerve in my right eye was "lowered," which apparently can be indicative of a brain tumor. After some additional tests and further investigation, and it was discovered that my lowered Optic nerve had always been there and was documented in my chart from a few years prior to my most recent brain MRI.... so we concluded that I was born with a lowered Optic Nerve. As I result I now have to have my peripheral vision checked every 6 months as this can cause peripheral vision problems over time. So I'm excited to report that I now get to add yet another regular doctor's appt to my schedule! I just had my first 6 month follow up 2 weeks ago and all is well. :-)
I see my MO on July 17.... I haven't been scanned since January so he'll probably schedule one at this appt. On the plus side, I did have a clean mammogram today!
Love to all,
Lauren
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