Ibrance (Palbociclib)
Comments
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Thank you, lulubee, Here you are about to be 10 years out! Looks like you've had quite a treatment adventure.
You encourage us too!
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Pat~ Xgeva for me as well. I have to take Claritin two days before and two days after to prevent terrible bone pain. I had some blood work recently and I was considered stable. But this bone pain doesn't always feel so stable. I guess the blood work tells the story for now. I get to have another dose of scanxiety in may just in time to celebrate my 47th birthday. I will pray to be fighting as long as you my friend. What a wonderful thing. Goodnight to all
~M~
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PatG, I wish I was still running, gave that up a long time ago but was biking a lot until the lung mets took the wind out my sails. It's Z who is our running warrior and mega researcher.. she deserves all the credit for her research and her cheerleader attitude.
Adriamyacin also did a number on my veins. I was offered a port and foolishly said no. If only I'd known then what I know now. I'm not supposed to use the other arm because that's the mastectomy side. I rejected all pokes and BP'S in that arm until my last PET scan in October as the tech couldn't find a vein so I foolishly agreed to let him use my good arm because my onc. Had said it would be ok. Now I've got some mild lymphedema. Lucky me after 25 years of being careful.
Everyone thanks for the uplifting posts, we all need them. Keep dancing but sleep well tonight first.
Hugs, Faith (in the future)
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You girls are amazing!! I feel like such a ninny, here nearing the end of my first 21 days of Ibrance and finishing up (Friday) my loading dose of Faslodex. I don't know what to expect going forward with all of this (BC after 26 years of blissful nothingness), but I do know that I am in the presence of some strong, wonderful women who are giving me, and all of us, great guidance, courage, and advice. I have a file into which I cut and paste especially helpful/relevant/encouraging comments. Thank you all.
Faith, your comment about using the BC arm is so interesting to me. I just had a brochoscopy (checking for possible lung involvement, which wasn't there, thank goodness), and the tech gently suggested that I might use my arm on the mastectomy side, after 26 years of not touching it. I said, "No", and thank goodness I did. You are living proof that the lymphedema can still raise its unpleasant head. I hope that that settles back down for you.
On Xgeva...I see my onc this week, and I think that she's going to start that. Lord, sticker shock again!! Does anyone have experience with whether Medicare covers part of that? I guess that I can look it up. On a roll with my coffee this AM. 5:00 AM here. You all do a lot of posting after I've hit the pillow at night!
Good morning to all...another day of strength and determination to beat this sucker!
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Joy~ I have Medicare and have never had a problem with receiving this shot. Just try the Claritin two days before and two after to protect your bones and joints for pain! It can be explosive and very painful. They give it to me under my arm and it burns a little going in but little else. Nothing compared to what we have been through. But please try the Claritin, it doesn't work for everyone. But if you are lucky, like me, it helps tremendously! I wouldn't want you to experience any unnecessary pain. We have all had enough. Have the best day you can. ~M~
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M-
Thanks so much on the Claritin. Great advice. I'll do it! I wonder if the onc will give me the Xgeva on Friday, on the same day with the last loading dose of Faslodex. We'll see.
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M, silly question, but I'm pretty literal: do I start the Claritin two days ahead and continue for 2 days after (thus 4 days total of the Claritin) or take Claritin 2 days before and then again 2 days after (only 2 days of Claritin)? I'm assuming the former...4 days total Claritin. Thank you!
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Faith~ that stuff was the worst ever. I used to cry for the first two days because I just couldn't think no less function. My precious husband just took care of me and if I'm really honest I don't remember the brunt of it all. It was an evilly delightful cocktail. One that brings terrible side effects but may just well save your life. I had to have a port, I call it my third eye ball. I have what I call hider veins instead of spider veins because no one can find one ever!!!! What I have learned to do is immediately I tell them. Hey get a person with an ultra sound up here to find this vein before you try to dig for gold under there. It helps tremendously in aiding the search for the pot of gold vein. I have been stuck in the hospital before 24 times in my good arm because I also have been gifted with mild lymphedema. At one point I even had two veins infiltrate and my hand looked like a balloon! Ouch!!!! Don't be afraid to ask for what helps you!! I have learned that through having crappie veins.
I am now getting my neuropathy slowly to a point to where I can jog/walk fastly, it's a new lease on life when I am outside really living and not just sitting in my hospital bed watching shameless. (A crazy jaw dropping showtime original that makes me feel like I have a pretty fantastic life compared to the family In this show.) each day is a victory. Each day I must look at as a gift. Thank you for letting me be apart of this forum. ~M~
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Joyner - I take claritin, or rather the cheap generic form loratadine, every day to help with fatigue from the letrozol/ibrance protocol on and also as an extra layer of protection against the allergens we have around here. If I were you, I would just take it. There is some relationship between allergies and the side effects we get on many of these drugs, as if our body is allergic to them. Loratadine can help with it all. So I would try just taking it every day and see if it helps.
>Z<
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Oh golly, I had a hand infiltrate once, just as I was being wheeled into surgery. I looked down and there was a blowfish where my hand should have been. Ironically, that may have been my port placement surgery!
Here's a handy little trick for those awful hider veins:
If they cannot find a good vein and are poking you half to death, tell them to put an old-fashioned squeezy blood pressure cuff on your arm for a few minutes. It often works like a charm!
You may want to remember that someday if you are ever in ER at 3am... just sayin'.
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Joy~. I find for me if i have my shot on Monday I start taking the Claritin on Saturday morning. Then have then shot on Monday and continue till Wednesday or even longer if you feel it's working well. One time two months ago. I forgot to take it. Well never ever again. I was in so much pain I wanted to take out stock in Claritin, I wanted it so much. It helped me lots and I hope it will help you! Even taking it every day may even help the overall joint pains you're having in the long run! Like Z pointed out. It helps her a lot! Keep us posted!
~M~
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Thank you, girls, on the Claritin! Headed to the pharmacy to pick up the generic version (thank, Z!)! Good advice on that blood pressure cuff, too; they always poke me half to death before they send in the "good" sticker. Why can't they just start with the skilled sticker?!?
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Joyner, I've learned to speak up. The techs in my local onc's office know that I will allow them to try one time. If they can't do it, they need to call the lab supervisor who has years of experience as a phlebotomist and never has a problem. Same when I go into UCLA for scans. I tell them ahead of time to call an RN for the IV (vs. even letting a tech try), and most of the time that works out pretty well, although I still occasionally get a blown vein (so painful) and once they hit an artery, which was exciting for a few minutes. But after several years at this, I got fed up with being poked -- once as much as 5 times for an IV line, then sent home to hydrate, only to go through the exact same thing the next day. Never again.
Love the blood pressure cuff idea, Lulubee! Thanks for sharing it! I've already passed it along in response to a question about difficult blood draws in a FB group I'm in. Hoping it will save us all a lot of angst and pain!
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EXCELLENT advice, dlb! Thank you!
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Regarding the XGeva, I'm thankful I haven't had bone pain following the shot, just a couple of days (2nd & 3rd day after) where my energy drops dramatically. Another reason to be thankful...I had a TRAMflap reconstruction and my entire belly area is numb so no pain when I get the shot there!
I have not been charged anything for XGeva, having Medicare + a supplement. For those with AFLAC cancer policies, XGeva is considered chemotherapy and reimburses $300 of each shot. My AI (Arimidex) is also considered chemo and pays the same. If any of you know people who have had 5 years with no treatment, they qualify for the AFLAC cancer policy.
It's a beautiful Spring day in Memphis. Hope it's nice where you are!
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Good afternoon ladies~ I have been feeling a cold brewing for a day or two and felt funky stuff coming up from my coughing and some chest pain, (of course it's spreading is my first thought. To my lung I know it. I'm doomed) I drag my sweat panted rear end and krusty the clown hair do(because my hair is growing back thank goodness from heavy chemo but is still in the awkward stages of growing back ) to the doctors office. My arm is all decompression wrapped because I'm having a flare up of my lymphedema, so I sit down and he looks at me, after two back to back exciting hot flashes,and says. Wow I've been looking over your bloodwork from your onc doctors visits and you're doing very well, you have been through a lot this past year! (Not my regular primary dr ) he checked me over and said everything was fine and that I had your basic cold. He told me , there are two types of people "quitters and fighters" I believe you're a fighter. I was worried about yet another doctors visit and it turned out to be a boost in my progress. I hear the word doctors and I panic. He told me every ache and pain is not cancer. Which is always where my mind goes. I panic when I wheeze in any way because I only breathe on one lung as a result of an injury before my diagnosis, so anything respiratory related for me can be very bad. Today turned out to be not so bad hearing another doctor tell me how good my blood work is and tumor markers plummeting means the medicine they are giving me is killing the cancer! Keep fighting ladies. Hugs to all ~M~
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Yay for you, Micmel! And I'm so glad the doctor gave you those encouraging words. Dr. Lawrence LeShan (Cancer As a Turning Point) teaches that your body pays attention and acts on your beliefs. Keep reminding yourself that you're no quitter!
About that cold/cough/chest pain, there is a nasty thing going around. It's like nothing I've had in the past with a weird soreness in the lungs and a nasty cough. My daughter had it for 2 months and her doctor said it could have been Whooping Cough as there is a resurgence of it in the USA. I'm thankful that after 5 + weeks, my coughing has subsided. I pray that yours moves on much faster.
About thinking everything is cancer, we had a saying at our support center that once you've had C and your toe hurts after stumping it, you're sure you have toe cancer. All that to say, I hope your toe cancer is gone very soon!
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Pat~ Yes !!! A weird soreness in the lungs omg that is exactly like i feel. I sound like an old man of 90 years of smoking pall malls unfiltered!!!! When I cough , It's annoying. I am so glad to hear yours has subsided, it's a doozie! The doctor was very positive, may everyone feel that way!!!!! May you all feel those positive vibes!! Rest well Ladies !
~M~
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Micmel, the other nasty part of this lung thing has been the fatigue....the kind that makes you wonder if it's worth it to walk to the bathroom to brush your teeth. (My husband has it now and he says he understands how I feel on Ibrance.) I'll light up a Pall Mall for you, old man!!
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Pat~ just took my two little z pack pills to help knock this raspy cough out of me. My nebulizer is hooked up and pumped with medicine and ready to go! Sounds like I have what your family has experienced. I was so disappointed, I had managed the entire winter without getting sick. Well at least it was caught soon. Respiratory things with me are problematic since I've lost function of my right lung! I catch everything. Thanks for letting me know it's a linger type of thing, so I don't panic if I don't feel better too soon. Good night. ~M~
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I've been on Xgeva for 2 years. Given in the belly with no pain. It was started at the same time as Afinitor and Femara so would be difficult to separate the mild symptoms, but never needed to take anything for pain other than Tylenol or Advil. I'm on medicare with supplement and have never had to pay for the Xgeva, and Afinitor was free because it was part of the clinical trial I was on. I just started on Faslodex and Ibrance yesterday. Got two shots in bum (Faslodex) and one in belly (Xgeva) and a blood draw so I feel like a pincushion, but nearly 24 hrs later I'm feeling just fine - not even a sore butt which I was expecting. Took first Ibrance pill last night and haven't felt any effects yet - we'll see.
Blessings and warm hugs to all.
Mary
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Hilltop, I hope you have no side effects at all. That is my wish for you! May you keep feeling so good and are able to do whatever it is your heart desires! ~M~
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Mary, I am about to take the last of my first 21 Ibrance pills (this is my first month's treatment), and I feel no side effects at all so far. Very frisky. Have had two of the loading doses of Faslodex and have my third this Friday. I expect that I'll also get the Xgeva (for the first time), so very glad to know generally what to expect. This site is amazingly helpful. I am so grateful to all of you.
Side question: are you "hilltop" because you're a rider/fox hunter?
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can someone explain what loading dose means and will I start Ibrance with the first loading dose? Than
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Dianarose, the loading dose to which I was referring earlier is with Faslodex, a shot some of us are getting in each fanny cheek once a month. It is not related to Ibrance at all. I have been prescribed Ibrance (just took my last of 21 pills moments ago) in conjunction with Faslodex. That seems to be a frequently used combination therapy. There was no loading dose associated with the Ibrance; you just take your 21 pills one day at a time and then have 7 days off. Hope this helps!
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Dianarose~ I believe a loading dose means a higher amount of the new medicine in the beginning and then they will begin to drop down over time to a lower doseage, more of like a maintenance doseage, they need the medicine to be consistently in your system at the levels they want and it's a process to build them up. Some medicines expell from the body quicker than others and therefore without the loading doseage(s), it would take a lot more time to get you to the levels in which the doctors are seeking. It's quicker protection. From what I Understand. ~M~ I also do not have any loading doses. I have xgeva once a month and also with ibrance did not have to have anything like that, just the anastrazole every day. 21 days on ibrance and 7 off.
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I completed my first 21 days of pills on Monday. I would say I've been waiting for the side effects to kick in - but its not been as dramatic as I expected, thankfully. I am getting used to the pills - the urge to put them on a pillow before taking them has subsided!
I do have a little tingling in my fingers - mild neuropathy I assume - and sometimes my lips feel a little tingling, though I'm not sure if I am imagining that. This has led to me picking/nibling at the skin on my fingers - so I've decided to really look after them - moisturizer, wearing gloves etc to kick the fiddling habit. My WBC went lower, but not to a level that my MO was worried. I am a little more tired - eg I went to bed to lie down for a little on Sunday, and found myself asleep. But I don't have the breathlessness I got with Chemo. My joints feel sore but I do have Osteoarthritis on my knees and hips, but the increase in pain/stiffness I am putting down to Anastozole. I am trying to keep moving with swimming and some yoga in the mornings.
My husband and I are off for a weeks visit to the UK on Saturday - so I am going to take some precautions on the flighty to avoid germs. I've got some masks, wipes, hand sanitizer etc. Also - its often different germs we are exposed to in the UK so I'm going to have to hold back on all the hugs and kisses from friends and relatives. I'm so excited to go as I'm going to stock up on some UK food favorites and also have some relaxing social events; including a day at a Spa, a Golden Wedding anniversary party on a historic old ship (SS Great Britain for those who know it) and Afternoon Tea for my sister's 60th Birthday.
I did get some indigestion at the beginning - so I changed to take Ibrance at the end of my meal instead of the middle, which seems to help me. Given that I am frequently gaining and then loosing a stone (14lbs to those from the US) I was interested to see if my appetite diminished - thats going to be unusual for me as I am never without a good appetite. Time will tell though as I know these sort of side effects can accumulate.
So far so good. Thanks everyone for your experiences and advise with this drug regeme. I am very hopeful - my various liver mets/spots either grew or shrunk slightly in my first follow up scan - so I'm hoping this will 'kick them to touch' - as per that good old rugby phrase.
Sarah
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Scwilly~. I am dreaming of when I feel better to travel. I am on my way. All I want is to see the ocean again. It's so peaceful and forever a view to see as far as the stretch of the eye. Have such a wonderful time and hope you make some everlasting memories. ~M~
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Scwilly, I had forgotten about the tingling, sore lips with my first month of Ibrance. I never had that again and, hopefully, you won't either. This is a strange little hard-working medicine and I look forward to hearing your first scan results!
I was so sorry to hear what happened in the UK today and I pray that all the people you love are okay. God bless us all in this scary world.
Ladies, I'm going to add not having my hand infiltrate to the long list of reasons to be thankful!
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Micmel: I'm wishing for a trip for you too. I live not far from the ocean - though don't always make the most of living in SoCsl. Thankyou for goid wishes. I am so thankful I can head back to see everyone - I worried I would not be able to travel.
PatgMc: Thank you too for your kind words. It was shocking to hear the news unfold today. I have almost all of my family and friends in Bristol, 120 miles west of London, and all are safe. Its so heartbreaking to hear of the loss of life and other casualties. Its incomprehensible how any human can justify such actions that means others should have to suffer for their cause.
Interesting you alsogetting the same numbness. With luck it will dissapear too for me. When I had AC/T chemo I felt side effects meant something might be happening - just my way of putting up with them.
Anyone kniw ow long should we expect to be on Ibrance? I suppose until it stops working or isnt tolerated anymore due to side effects. How about if we get to the lovely state of NED - Do they stop it and go back to just AIs? I say this as I wonder about being on it long terrm.
Sarah
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