Ibrance (Palbociclib)
Comments
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Z, I sure hope we can both get the dose reduction. I'm really looking forward to feeling better. Reading about how hard it is to get an appointment with your onc. makes me realize how lucky I am to be so close to the cancer center at my local hospital. It's not a major center but he's the director and has connections to a major center in Chicago. He's here in town 2 days a week but I think I could get an appointment fairly soon if I really needed one, although I haven't yet had to, thank goodness.
Faith
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Dianarose~ glad to hear no worse. I'm so sorry for the discomfort you have with your skin. I know it's not the same but my shin is so neuropathy ridden that every time I move my leg it sends nerve burns right up my leg, and god forbid I stub my toe. I asked my doctor for some of that compound cream that they make in special pharmacies and I use it a lot. Also another way cheaper alternative I Have found for the skin pain is lidocaine 5%ointment. I have raw nerves from lymphodeama and it helps that also. The best part is insurance covers it and it really works. Even the port cream takes the edge off. Any little thing that could possibly help lessen your discomfort. They can call that in! You are in my prayers.
Z~I am speechless that you may wait that long to get in. And will pray you get the dose changed soon. I am on 125 mg now, the end of #4, It seems the longer you take it the harder it becomes. I have very few Sore spots on my head. The almost non existent mouth irritation that feels like I drank a small amount of hot tea. Those are the most of what I feel. I pray they stay tolerable, it truly is enough to just drive you mad. You give me hope, based on your information I believe our cancer may be very similar, I would be very interested to know more about. I had one met to my liver which they cut out and it's gone, but the buggers landed in my pelvic bones only (so far thank god). Sounds similar. Would love to hear your story when you feel up to it and get your dose fixed!!
Have a good night ladies. Sleep well. I hope to have a hot flashless night. Which is another big joke. Thanks For the safe place to ask questions. You all have been there and truly understand , most people try to be there but just cant
Gn. ~M~
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Micmel - I make appointments every month, just to be sure I have one in case I need one. I cancel them when I don't need them. I usually don't need them. Annoys the scheduler no end. Boy do I not care. When she asks "why are you canceling today Ms. Chartrand?!?" I make up some horrible medical crisis. "You see I have cancer and ... "
The system is a bit ridiculous but I make it work and enjoy it as I can.
It can get easier. Things are much better now than my first three months. But I am planning on being on this treatment protocol for a long time and people on even the lowest doses are doing well. The benefits of being able to eat well (because you don't have nausea and mouth sores) and exercise outweigh any benefit there might be of staying on the highest dose. Or so I believe.
I am afraid all the side effects are from letrozol and dropping my ibrance dose won't make any difference. But I am going to give it a whirl for 3 cycles (the length of the new prescription).
>Z<
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Z~ I never really thought about it, but that's a good idea. That way you keep your options open. I am hoping that this ibrance works for me also. I feel pretty darn good each day overall and rest because, like you said unbelievable fatigue. The anastrazole brings my joints to a crawl. Have you any suggestions to neuropathy on your feet? I jam these things in running shoes that I believe are my toes and actually feel more like rocks. I have to watch every step because my balance is still not fully all that great. Although I have to admit I was a tad clumsy even before. I hope I am able to tolerate the medicine as long as some of you have been here. It seems to be a good gift to us all, considering what treatments were like back in the 80s. Who knows where we would all be then. Just gonna pray the up and coming medicines wow useven more. Have a great day everyone. No walking today. It's freezing. So much for the imitation spring we had this week! Arrrggg!
~M~
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Time-All the suggestions for your trip are good ones. I also use bottled water to brush my teeth when I'm in Mexico. It's hard to remember the first day or so. That hand just automatically turns on the faucet
LALady- great news on the lower TMs!!!
Dianarose- hoping things improve for you soon! Started taking turkey tail this week to help with counts. Another opinion is worthwhile. Then you can trust your gut to make a decison that is right for you. Surely your platelets will start trending in the right direction!
Z- 100 mg is still a good dose. My scalp pain stopped when I reduced dosage.
At this point it's at least two weeks off between cycles. Of course I'm thinking about waiting an extra week to restart. I feel great after two weeks off and I don't want to feel wiped out at the end of the upcoming #17 cycle while I'm traveling. Week 3 plus Cancun airport and Chicago customs = ugh.
Have a good week ladies
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Micmel - I don't know if I have neuropathy in my feet ... but my feet hurt like hell. They have hurt so badly at times that I could not get out of bed. It is a very common side effect of letrozol, so I assume that is the culprit. Neuropathy is a term I associate with traditional chemo, which I haven't had. So I am not sure exactly what the term means. Is the muscle and joint pain from letrozol also neuropathy? I'd be interested in knowing.
In any case, I'd be unable to get out of bed if I did not take horse doses of liposomally encapsulated curcumin every single day. 1000mg of Longvida curcumin twice a day. It's sold under several different brands so you can shop around. Longvida is the name of the patented method of preparation. The pain is not completely gone, but it becomes unnoticeable by mid-morning.
It's very important to remove all barriers to exercise. I save my rants on the benefits of exercise for the Stage V Fitness thread, but there is no single complementary invention that is more important than exercise. Everyone here is welcome to join us there if you want to get moving.
>Z<
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Z~. I did have the traditional chemo and have been told that's what it is. My feet also hurt so bad somedays I can't get out of bed either, I find at nighttime they burn also accompanied by pain. The burning is very painful. Numbness is also present as well. It's just constant and hurts quite a bit. I never get a break. I was NED for three months but maybe not really though, I just think they couldn't be detected yet. So then I completed all the heavy chemo only to find out it was on to oral chemo. Surgery got everything else but then had it settled in the bone! But I realize they took out a very large amount of cancer, and I am thankful for that, liver surgery is a rough recovery and my belly looks like a road map. (Cancer was in my breast, 14 nodes and one dime size spot on my liver at diagnosis) They went in and took that all out. They usually don't do that, I know I was lucky and have lost a ton of cancer. Maybe since you mentioned the pain from the letrazol, now I'm wondering if I have a combo going on. Who knows what medicine does what to us. How frustrating. Thanks for the tip, I will be sending one of my kids to seek it out. I hope you're feeling rested from traveling. Rest well!
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It's interesting to scan the Femara thread and see how people who are only on letrozol/Femara are doing. The side effects can be very bad on just hormone suppression. It's something to keep in mind when you are figuring out what is going on and what to do about it.
>Z<
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Z~ my oncologist is an aggressive one and since I am 46 he wanted to make sure I was around a long time. God knows we have all been through our own personal hell and back.
I will pray we all find what we need to alleviate our pains and issues that hold us back from truly living. I thank you for your shared knowledge, you're very kind to everyone. 😊 I also was lucky enough to get lymphodema, which is also extremely painful and chronic.
Again coming from someone who gym ratted five days a week free weights and massive cardio. I wish I could make a trade in at the local body dealer and get my old body back!!!! I'm gonna check out the thread. Thanks... And to think it's such a tiny little pill and Wham!!
Enjoy the rest of your weekend! ~M~
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I write- what is turkey tail? I am struggling with platelets of 55 and white count 18. I always have an on going kidney infection on the side with the naphostomy. All I have done for two days is sleep 😴.
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Turkey Tail is a supplement madefrom mushrooms...trametes versicolor mycelium. It is for immune Support.
I get labs done tomorrow and have been taking it for three days...I will let you know if there is a significant change from last month. The real test will be at the end of my next Ibrance cycle when I see where the numbers are. It would be awesome to prevent them from tanking.
Check with your doctor or complementary practitioner to see if there are other issues you need to consider before trying it. I get mine at the vitamin shop.
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Dianarose~ Are you taking any iron supplements ? I know that when my iron/counts were terribly low, I was put on a decent amount of iron to help build me up. I was also so darn tired, like lethargic. I am trying to think of anything that may help at all. Have you asked your onc about iron? it may be worth a try.
I am sending you thoughts! ~M~0 -
Iwrite~ 17 cycles inspires me, what wonderful hope you bring to all of us newly taking ibrance.
Not to mention reading all the wonderful things you are doing makes me even more hopeful.
When I think bout it more and more i believe what I am experiencing, is the tradtional ac chemo and the abraxane. That was where the neuropathy really got bad. I pray I can continue to recover from that. It was pretty brutal, I am just hoping the more I use my feet, the better they will become. 🙌 ~M~0 -
I just finished my first month. I take both in the evening with dinner. No side effects until day 28. Horrible mouths sores. So bad I couldn't eat or drink even water the first few days. I've been prone to these all my life. Their course was usual. It's always about a week. They gave me a prescription for a thrush drug. Didn't notice any difference. A doctor friend said it was only good for thrush. No on had looked. When I go tomorrow for blood, I'll show them.
Question: has anyone experienced shortness of br breath? This has just started in the last day or so
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Loraine, I'm in the middle of month 2 on ibrance. I did feel short of breath during the first month, but it seems to be better this cycle. I hope your mouth sores clear up. I haven't had that problem, but others have mentioned them.
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Loraine~ I am only ending my fourth course of ibrance but I have never had shortness of breath and I have bad asthma. might be worth mentioning to your onc, just to make sure. The only time I have had issues with shortness of breath is when I get my monthly shot of Xgeva, which causes a hay Day of symptoms including shortness of breath. I have had a sore mouth, but no actual sores and I had them
Horrible with the heavy chemo. I used biotine often and it helped a lot. Hope the next rounds get better. ~M~0 -
Hi Lorraine. I just finished cycle 2 of ibrance yesterday. I had bad mouth sores the past month. I wasn't sure if it was from the ibrance or gedatolisib. I'm doing a trial. This past week I only had 1 and it didn't bother me too bad. I do use biotene and the magic mouthwash. I started eating activia Greek yogurt. I think that might have helped a lot just by eating that each day! Those sites are awful! I couldn't eat either. I couldn't even hardly talk. I had 7 on my left side of my mouth and was miserable. I hope you get relief soon. I haven't had shortness of breath either.
Misty
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Just got my first months bottle of Ibrance today. I've been waiting for this for a week and a half.
Thanks to everyone who has contributed to this thread - I'm finding your advice very useful.
I wish you all no side effects and for Ibrance to work, or continue to work successfully.
Sarah
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Micmel- mo said supplements won't help because my immune system is destroying my cells. Had labs today and platelets are the same. Only change is white went from 18 to 9. All o have done is s
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hi, I just finished my 2nd week on ibrance / letrozole and I seem to have increased bone pain and caught that nasty flu/cough that's been going around again....MO wants me to get chest X-ray and has prescribed antibiotics. Hoping every cycle is not like this.
Was curious if anyone had increased pain during their first cycle of ibrance? Was so hopeful for an easy(ish) ride with these pills.
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Dianarose~ I am still going to continue reading my little heart out to see anywhere of any suggestions to help!! You are in my prayers and thoughts (((((Dianarose))))))
Strong hugs and strong faith coming your way!
~M~
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Casun19~ my first month was pretty easy sailing, the letrazol seems to bring on the joint pain and I believe that is the culprits of the joint pain not the ibrance. I have had good counts each cycle and I am ending my fourth month this week. Try to remember that if you're not feeling well with a cold that everything will be confusing and many symptoms could be related to that, since this is your first month, focus on getting better from that cold and go from there. I had several bugs and thought I couldn't take anymore medicine, I used DayQuil and when I get any kind of bone pain, I take Claritin, it honestly works amazingly, it helps with Xgeva shots which I get monthly as well. it's hard enough adjusting to this new medicine, never mind throw in the cold/flu!! Rest well, I was actually amazed at how mild this medicine has been, compared to the heavy chemo, I would hands down take this. Hope you feel better. How long have you been feeling badly? ~M~0
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Micmel- I started taking folic acid and B12 on my own. I am sure there has to be something other then sit back and wait. My anxiety is crazy with all of this.
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Dianarose~ I am so with you on the sitting back and waiting thing. Who feels like doing that? That is all we seem to be able to do. But every day you are in all our minds and I am sending you any strength I can muster to force you to wait for some better news. I have taken up coloring lately, I know it might sound ridiculous, but I find it therapeutic, somedays I look up and three hours have passed. That way I feel like I am not waiting so much , but creating, and I can actually do something at my pace. Not someone else's suggestions of how I pace myself and what is best to do. It's so dang frustrating, I just let out a good scream for you and my dogs looked at me. I will be checking in on you. Big hugs. To you! ~M~0
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Micmel- everything started after I finished my first week. I was having crazy back and leg pain that I don't know if I would consider joint pain? I have never had much luck with Claritin reducing pain. I take Percocet for pain maybe 1 a day. Most days I need nothing because my pain is/ was under control. Last week I started taking 3-4 pills a day just to be able to get off the couch and play with my daughter. She is 2 and full of energy
Flu started over the weekend.But you are right I am quick to point the finger at ibrance never thought about the letrozole. They did my blood yesterday and said my neutrophils were 1300 and white blood cells were low but not concerned. I don't remember the number.
Plan to rest and recouperate
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Casun19~ I am in awe of you , dealing with this and having a 2 year old. God bless you and that sweet child. I realize how difficult it is for me and my kids are pretty much grown. 21 and 20. I promise you that my experience with catching that bug is, it totally amplifies each and every symptom that you can possibly have, it's also next to impossible to distinguish which is medicine side effects and which is flu/bug annoyances. Resting is your best bet. I have learned to totally listen to what my body is telling me. If those blood counts weren't ok , you would know. They don't play Around. It's very good that your counts are holding steady. I am on 125 mg ibrance and I always wonder each time if he will lower the dose he but always smiles and says. You're doing well
That's a very good thing. Sometimes mine dip also but they always seem to be in range that is ok with him. I walked today 1.5 miles because the weather was so nice I couldn't resisit. The sky is so much bluer when you are constantly worrying, and start to see and I mean really see, ordinary things people see each day and take for granted, that are truly beautiful. Hug that lovely child for me! Sending the power to moms everywhere! Have a strong day. I hope you feel better soon! ~M~
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I have been reading a lot about this turkey tail and can't wait to see if it has helped anyone. How long do you have to be on it to see results
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Reporting in on my personal turkey tail mushroom supplement "trial": Just got my blood results back after taking it for one month. I took about 1600 mg daily (which is less than Z takes), but unfortunately, I didn't experience improvement in neutrophil counts. Just completed cycle #20 on Ibrance, and my neutrophil counts have always been consistent from month to month on 75 mg. Ibrance. I always come in around 1.0 ANC on day 27. After adding the turkey tail for a month, that's where they were again this month, so no change for me.
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is a cycle on Ibrance 28 days
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Dianarose - Yes, 21 days on Ibrance each month. Then normally 7 days off, assuming your neutrophil counts have recovered sufficiently. Extra days off are often added at the end of the cycle as needed when counts need more time to recover.
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