Ibrance (Palbociclib)
Comments
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Dee, I mentioned here the other day that I had told my MO I've had lots of sinus issues and he said it was just me, well lots of us have them. I have had sore throats a lot also, but nothing very severe. Have you tried rinsing with salt water or baking soda. Might be a good idea to check with your PCP. If it doesn't go away.
Why doesn't your MO want you to take melatonin? Mine thinks it's fine. It also is supposed to be a cancer fighter according to the book I have on lots of drugs and supplements. I have also taken 5mg of trazadone for years for sleep and he's ok with that also. When all else fails, I have a mild zanax on hand. I also have read that magnesium at night can help sleep. Good luck, insomnia is the pits!
Praying for all of us,
Faith
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Oh, you ladies and your growing hair!! Since Taxol/Carboplatin ran off with mine in 2012, I've had nothing but fuzz. Every few months when I start to look too much like a little old man with patchy cotton balls stuck to his head, my husband shaves it for me. My eyebrows also went by the wayside but my eyelashes were doing okay until Miss Ibrance & Arimidex entered the picture. I've ordered Rodan & Fields Lash Boost to see if I can overcome that little problem and have learned that grieving over lost hair ends and one moves on. My husband and I have been married for 48+ years and he tells my I'm beautiful without hair. I've decided to believe him because he doesn't have any either and he's as handsome as he was when we started to date at 14 and 15! (I also discovered Anastasia's thin markers and stencils for my eyebrows! Available online at Sephora.com.)
All this to say, I believe life is good even with the losses we face. I stand by the Bible verse, "All things work together for good for those who love the Lord and are called according to His purpose."
Dee, I wonder if the sore throat could be from tiny sores or thrush. I'm the natural Greek yogurt pusher here so you might try that. I like Stonyfield.
To "another Pat": I've never told anyone I hope she dries up soon but, my friend, "Dry up!" I know those drains are a bother.
About sleeping: Years ago when I went through clinical depression and the accompanying insomnia, I learned something called The Relaxation Response. It was a miracle! Google "Relaxation Response" and you'll find a Youtube video of Dr. Herbert Benson giving a lesson.
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Pat your DH is a correct person! You are beautiful, to be honest somedays even though it's growing back, I still don't recognize my own face, but my husband does. I believe you are beautiful, I also believe you having an incredible heart and way of expressing how you feel that always makes everyone feel better. My hair is actually so awkward. There is no rhyme or reason to it , I basically look like crusty the clown. Sticks out everywhere. But I'll take it., I see people looking at me when I go out. They wonder. Is she sick or doesn't she have mirrors in her house? I just love each day hoping to feel half decent so I can run. My mother fell seriously last week and is back in the hospital again~ she has bad legs and it's come to be known that the hospital missed the infection starting and she developed the worst case of celluitis that I have ever seen, her legs are purple and they told me she's close to loosing them both, because of extensive tissue damage. So I thought today at least I just won't look in the mirror, because I'm so worried about her , that I'd look at how horrible it looks growing in, I might loose my mind. 😪 And she lives out of state far from me and I can't help her. 😞😞coming here helpsme stay positive , or at least try. Thank you. Keeping you all close in prayer. ~M ~
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Joyner - I've been on ibrance for 16 cycles and never washed my hands before or after touching the capsules. Someone would have to explain to me why, and the argument would have to be pretty convincing (along the lines of; you will turn purple and die), before i would add that to my ritual. Of course, my ritual this week has been to wash down ibrance with beer since I am biking in Moab. I take a laid back approach, partly because I hope to be on the Ibrance lifestyle for years and it needs to be simple ...
I take 20mg of melatonin every night to fight cancer per two different complementary oncs, both very experienced with Ibrance. Be aware that at these (high) doses melatonin does nothing to help you sleep, the goal is to block metastasis. I take cannabis to sleep.
Welcome everyone new. Takes a while to get settled and figure out your path through this ... one day at a time.
>Z<
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Sadiesservant-I also had a collapsed lung and pleural effusion. I had the Pleurex catheter in since last October, but this week I was finally able to have it removed. Hallelujah! I'm in my sixth cycle of Ibrance so it took a while-my lung did not totally bounce back but my oxygen levels are good. Hope that your catheter will "do its job" and then be able to be removed. I'm going to celebrate by going to the ocean in May. Best wishes for you on Ibrance.
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Micmel, I'm so sorry about your mother and I promise to pray for her often. My mother died 35 years ago but I remember so well how much I hated not being with her everyday during her illness. When I was there, I worried about my young family at home and when I was home, I grieved that I was losing time with Mother. I pray for your peace and your mother's healing. And I thank you for your sweet words tonight.
About the incoming hair: I remember back in 1994 when mine came back after FAC. It was the weirdest, wiry stuff you ever saw and it took about a year of haircuts before I got back what I had before. Years later, my husband laughingly said I had had "cheap doll hair"! Look up "Chatty Cathy" on google and you'll know what he meant!
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Chicagoan, I'm delighted about your catheter being removed! We have much to celebrate on this thread! I'm so thankful you spoke up to encourage Sadiesservant.
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Micmel - i am deeply concerned about your mom. can you visit? absolutely nothing worse than worrying from afar and this doesn't sound like a small thing. your mom is in my prayers.
>Z<
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Michel, I am so sorry to hear about your mother and totally get the "blue day!" I too will keep you and your motherin my prayers.
I am still struggling with hand/foot syndrome (blisters on the bottoms of my feet and raw red fingers) and am slightly anxious about labs tomorrow due to pain under my right rib cage which I have never had before.
Z -- interesting about your dosing level of melatonin.
Other Ibrance/Faslodex side effects -- sore throat and runny nose (didn't notice this when I was in Florida but came on strong once I got back to MN) and a headache at bedtime.
I take magnesium and cannibis for sleep also.
Take care all,
Kimberly
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Faith, from the chemocare website, so it seems that perhaps your MO didn't read the SE's list, you are not alone in the sinus issues, nor me with a sore throat & sinuses. I took magnesium for a while & it gave me uncontrollable diarrhea, so I don't think I want to trade that for sleep! ;-)
The following side effects are common (occurring in greater than 30%) for patients taking palbociclib:
- Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.
- Nadir: 15 days
- Fatigue
- Upper respiratory infection
Pat, I eat greek yogurt every morning, right there with you on the benefits of it. It's not thrush, I had that with my first rounds of chemo, not fun. But I have been gargling with my magic mouthwash & nothing seems to be helping.
>Z< Melatonin is not allowed on the trial that I'm on, but also, right on the label under contraindications it says, "do not use if you are taking immunosuppressive drugs" The pharmacist at BCCA confirmed that there is an interaction with melatonin & palbociclib. Not that there isn't other schools of thought, but I don't want take something that isn't allowed on the trial.
So I'm not sure how I'm going to get through the next few days if this sore throat continues. I am going to go & talk to my village pharmacist tomorrow, he usually steers me in the right direction. And I guess I'll go back on zopeclone for the forseeable future.
Thank you all for your usual great advice, cheers, dee
0 - Low blood counts. Your white and red blood cells and platelets may temporarily decrease. This can put you at increased risk for infection, anemia and/or bleeding.
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GG27, it's interesting to see that you also had trouble with magnesium supplements. It took me 8 months of daily nausea and way too much vomiting to realize the cause was magnesium! I did form some other healthy habits during that time which lightened the symptoms but stopping magnesium was the cure!
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One thought on the sore throats some of you are experiencing: Have any of you tried Bragg's Apple Cider Vinegar with The Mother? I used it to cure acid reflux but I think it's also supposed to be good for sore throats. Some of my friends also take it to relieve joint pain. I buy it at my grocery store but you can order it on the Internet. Just a tablespoon with a little juice in the morning does it!
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lol Pat. I know exactly who chatty Kathy is. I used to have one of her dolls! Thank you for your kind words it means a lot. I am worried about my mom,she's stubborn and doesn't want anyone to help her. She still thinks she is like 50 I swear! Thank you for the prayers. I am always keeping you ladies in prayer.
Z~ like the Cannabis idea very much for sleep! The ritilan is working out wonderfully still and i am not napping during the day anymore. Sail right through the worst fatigue hours. I have exploded with excersise although my muscles are like ok lady what the heck are you doing to me, it has been so long. I had forgotten the power of music. Have a beer for me!!
Stay safe ladies. You're all very amazing!
~M~
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Z~ I don't know if I am able to visit yet and I have a mountain of doctors visits within the next month and the beginning of may is all scans and onc meeting. Of course as if having cancer wasn't enough, the terror that goes along with waiting for those scans. I do get random leg pains and pain on my right side of my pelvis on and off, not too bad but achey quick shooting and then it's gone. Annoying, because you worry omg Is it spreading?It's not everyday, but I just hate having this awful disease. I have so much problems with neuropathy in my feet and hands when I jog, it looks like I might be being chased by a hive of bees because I'm trying to use my lymphedema arm also! It's breaking my heart that I can't be there with her. When I jog I rest. When I go somewhere, after I come home I sleep. I am highly allergic to cats and she has two, so I cannot stay at her house, and my step father has to work. Or they won't be able to pay their bills, so I am filled with anxious stress with worry over her. They have already told me she needs a rehab home even if her legs can be saved because the tissue is so damaged that the muscles have been affected, which is why she keeps falling. Thank you ladies for caring !
Bless you all. ~M~.
Kimberly, thank you for the kind words. I appreciate it more than I can express! I just wish I could hit the rewind button and go back to who I was before. It seems like the older we get the harder life becomes. I want nothing more than to be with her and hold her hand. Also, when do you go visit? Now, before, later whenever she's home?. (If that ever happens) or wait until she's into the home? Because at the end of the Visit I still have to leave her again. 😪😭
Praying for calm for us all. ~M~
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Dee: I have trouble with my sinuses also. They get dry and I start sneezing and it breaks some blood vessels in my nose. I suppose it could be allergies, it is spring after all.
I had my PCP give me a prescription for nortriptylene, one of the old tricyclic antidepressants. It has helped immensely with the insomnia! It also has helped my neuropathy and sciatica pain. I read about it in Bestbird's MBC guide.
Hi Pat 2
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Micmel- those pesky chin hairs and upper lip ones are growing just fine lol.
Pat- I have been using Latisse for my lashes and they are growing 👍
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Z. I think my doc want the Y90 for me because of that one stubborn met that got worse on Ibrance and femara. The other reason might be that I am a candidate for it and we CAN. Little did I know, that Dr Travis Van Meter has done more of these than anyone in Texas! He said mine are smallish compared to the 4 cases he had that morning. And he's right here in Dallas close to my other docs. I was surprised that he's going to do all my mets in both lobes. It will be three separate procedures. First is the all important mapping on April 6, April 13 is the first of 2 Y90. I was very relieved that he will let me be as "out" as I want be. And that I only have to lay still for 3 hours (instead of 6).
To the other sinus sufferers, mine showed up in brain mri. So I'm going to my pcp
this morning to get meds for that. I don't know if it's an infection or not, no fever, but I do have night sweats. Who knows. Also, I think my pcp may investigate the dizziness a little more.
Insomnia My MO has me on med for hot flashes. It just so happens to make me very sleepy. It starts with an A but my brain is not pulling it up right now. Ha I will write more when I get back.
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Pat, I love your husband!! I have a wonderful one, too; he's made me laugh through all of this, starting 26 years ago when I was first diagnosed. How could we get by without laughing?? Micmel(?), I loved your comment about, "She must not have any mirrors in her house....".
I am binge reading posts and think that you're all wonderful...supportive, knowledgeable, and kind. I sound like Little Mary Sunshine. Oh, well....
And Z, thanks for the comment on the hand washing. Seemed rather ludicrous to me.
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Micmel, I know how much you want to be with your mom. This horrible disease really does interfere with our lives. I suspect that your mother's spirits are lifted each time she hears your precious voice on the phone and whenever she receives a card or a note from you. She knows that you love her and that she is in your heart at all times. Chatty Cathy? Oh my goodness, I haven't thought about her for years. Her voice probably drove my parents and older sister insane. I don't remember everything she said, but I can hear that voice in my head right now. I remember "I love you" and "I hurt myself." Wow, it is so funny to think back like that.
I feel Ike I spend half my day washing my hands. It just adds to the dryness that I am experiencing. At any rate, I think that the recommendation to wash hands after handling the Ibrance capsules is just a precaution in case a residual amount of the medication is on them from processing. There would then be a very slight chance of transferring that very small amount of medication to other people or surfaces that you touch. It really isn't something I have been concerned about. As far as washing hand before touching Ibrance, it is probably to make sure you don't introduce any germs into your body since our counts are usually low.
Dianarose, I live in Bedford, but I have been to Dover many times. The snow has already arrived here. It is supposed to be just flurries this morning then the real stuff later, but it looks mighty heavy and steady for flurries. They have adjusted our forecast again, and we are now expecting between 5 and 12 inches. I hope we don't get too much. I will be the designated shoveler since my DH had surgery last week and is not supposed to lift anything over five pounds. I will probably have to tie him down to prevent him from trying to help.
Dee, I hope you find relief for that sore throat soon. I wish I could help, but I have no advice.
Have a good weekend.
Hugs and prayers to all, Lynne.
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Micmel, I'm so sorry for the trouble your mother is having and understand your dilemma in wanting to visit and being so torn. Years ago when my mother was in her final stages of Alzheimer's, I needed to visit and then I had a call from the doctor that my colonoscopy showed lymphoma ( falsely as it turned out ) and I needed more testing and to top it off we had a blizzard at the same time. I didn't get there and it's something I'm sorry about but it couldn't be helped. Don't beat yourself up about it, you are both in my prayers.
For those of you who have trouble with magnesium supplements, have you tried Chelated Magnesium, it absorbs much better in your body and doesn't seem to cause the digestive upset that regular magnesium does.
As Micmel says, praying for calm for all of us.
Hugs, Faith (in the future ).
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hi all,
really bad night last night, my throat feels like it's swollen & my sinuses are so bad that I'm having trouble breathing. I have left a message to get into see my PCP today or I'll go to emerg if he can't get me in. Thanks for all the advice, I'll let you know what's happening. cheers, dee
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50's~ Lol at you remembering what Cathy says. Lol. "I love you this much" I needed that smile. Thanks Pat for bring up that darn doll Lol. You're all so kind and I can't tell you. I find that I talk to you all more than people I have known for years. And it's because .... you just get it. . I'm sorry about the reason we are all drawn here, but I am so glad that we are in this s**t soup together. Hugs to all!
Joy lol when I read your comment on the mirrors. I really did Lol. It was just what I needed to see at that moment! It seems like you all do that a lot. Thank you. Prayers coming everyone's way~~~
~M~
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Dee, good luck with the throat and sinus thing...you're smart to do something quickly. The weekend is upon us, and it's harder to get anyone's attention when you need it.
Micmel, I was so busy being "sunny" that I didn't acknowledge your mom's terrible situation. We're all praying for her, too. So hard for you both. There's no one like your mom.
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joy~ honestly thank you. But when I read what you said bout the mirrors, that made me happy and laugh. To me, that was the same thing. 💜Thank you. I'm off to shower after a 31 minute jog. If I don't fall I'll be back. I am a tired bear! Thanks again everyone. Keeping you all close in prayer and thoughts ~M~0
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thinking of you dee. Hope we are seeing allergies or cold.
Z
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Micmel I think there are no words I can write to help you get through this stressful time with your mom's serious illness while battling your own. By far, the hardest time in my life was when I was trying to help and care for my mother as she was dying of MBC. That was thirteen years ago and it still feels like yesterday. Also, I had just finished treatment for my own MBC (the mets to C3, surgeries and chemotherapy back in 2000). Fortunately, it was only a 4 hour drive and I was able to help her. I can easily imagine how I would have felt if I had been unable to help. Prayers for you.
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Granna~ thank you so much. It's been difficult and I feel Guilty not being there. Thanks so much for all of you and all of your helpful advice and kind words and prayers.
~M~
She did get my flowers and that made her happy
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Granna~ thank you so much. It's been difficult and I feel Guilty not being there. Thanks so much for all of you and all of your helpful advice and kind words and prayers.
~M~
She did get my flowers and that made her happy
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saw my oncologist today and got good news/bad news. Biggest tumor shrunk 3 cm after 1 round. yeah for that but then said my immune system was down and gave me numbers that I didn't understand. Said it wasn't a surprise and wants me to hold off starting round 2 for another week. He did tell me there's a new FDA approved treatment that doesn't mess with the immune system as much. Didn't tell me the name of course. I got home and saw my blood work and can't see where the numbers are bad with exception of basophils and they were a little low to start with. What are they looking at? Neutrophils, overall white blood count? My numbers before I started were worse so I'm confused. I'm going to call Monday but need advise on what to ask especially since there's not an item called immune system. Red blood cells and platelets were good. Wondering if if he was going by original blood work.
Michel...that has to be so tough on you not being able to be there for your Mom. Mom's are amazing and understand when you can't be there.
Thanks to everyone for sharing your experiences especially the unexplained side effects.
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hi all!
Micmel, I just went back & read all the posts I have missed & just wanted you to know that I'm so sorry that your mom is going thru this while you can't be there with all your appts.
CJC, If they want you to take another week off, it's probably your ANC (neutrophils) which are low. They won't restart unless they are over 1.0. Mine are always around 1.1 or 1.0. Other than this throat thing I've never really noticed any change til they go to .6.
My PCP thinks my throat/sinus thing was started from a SE of Ibrance but that I may have picked up an infection because of my low counts. He gave me a script for antibiotics but said don't fill it unless you really need it. He knows how it messes up my gut gets when I take them. He will see me again on Tuesday.
Hope everyone has a good weekend. thanks for your support, you have no idea how much it means to me.
cheers, dee
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