Ibrance (Palbociclib)
Comments
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Anna33, sorry that you are joining us here. I too have a young child. She was 8 when I was diagnosed. I was davasted for months and cried everyday. Surprisingly things do turn for the better. We enjoyed an amazing family trip to Atlantis, Bahamas over Christmas. I go out of the way to enjoy every moment with my daughter. I never told her about my illness. I feel that I am in treatment but I am not sick. I will still have many incredible years to enjoy with my family. Why worry about things now. I have a few friends who are 5 years out and are doing fantastic. Still traveilling several times a years with their young children....we can do it too!
I continue to find support and inspirational stories here from you ladies. Thank you! Sending prayers and hope for all of us!
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Amica....It showed up on my whole body nuclear bone scan. I presume my regular dentist can obtain x-rays to confirm. I asked if I should see a specialist and he said my regular dentist should be fine. So we will see. I have a huge fear of dentists. Since being on the Xgeva, I was told to be very careful having any dental work done...so, I've been very lax for a couple of years.
Hope
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nonahope, jensgotthis: thanks for your information on scanning for jaw necrosis, that's very helpful.
I'll check with my docs and dentist and see if they recommend any special scanning since I think most of my scans start/stop at the chin. I avoid dentists like the plague too. Even though I like to think I practice good oral care, that doesn't include frequent check-ups, now I'm paying for it. 0 -
Has anyone ever heard of someone opting out all together of Xgeva or Zometa? My wife hasn't started taking either even though it's been almost a year since diagnosis and anti-hormonal treatment. She is not fond of the possible extreme side effects and doesn't really feel it's worth risking it.
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Daniel, for what is worth...when I was first diagnosed and put on Femara I refused to take any Bisphosphonates....fast forward 18 months later I end up with two collapsed vertebrae that I've rendered me disabled. My bones were super strong before starting therapy and I didn't realize the collateral damage from femara and how necessary those drugs were to protect myself.
Unfortunately, if your wife is on any estrogen suppressors, osteoporosis is pretty much guaranteed without one of those meds.
for the past two years I have thus been on monthly shots of xgeva, but since I'm no longer on hormonals I've been getting the shots every three months and will eventually wind myself slowly off completelly.
As you well know, the problem with getting off took them too quickly or staying on it too long is that it will strengthen the bones to the point of cracking them or it will flood the blood with calcium, a potentially deadly situation.
I hope this helps....good luck with your choice....
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Miaomix....can you explain a little more what you mean in the last paragraph you just wrote. I have been on Xgeva for at least two and half years. Honestly, I don't know what I am suppose to be asking my Onc about Xgeva. All she has said it helps to keep your bones from being brittle and seems to extend the success of I/B. I have been having my teeth cleaned every 6 mo with no problems. However this last cleaning (new girl) was more painful than usual.0
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Pat a beautiful story...thanks for sharing. Thinking about you Snooky...glad the chemo was not as bad as you thought it would be.0 -
Daniel, I second that Xgeva is very important for bone healing- its an antibody that coats the bones and blocks the enzymes that normally would remove bone (normally, enzymes are constantly adding and removing bone). Recent studies show that, not surprisingly, it also helps protect the bones from new mets as well. With people living so long, I don't know how they decide how much is needed or when it is okay to back off, but for sure if you have bone mets, its way riskier to not take it
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Thank you gals for your answers. I will bring it up to Leslie
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Airlinegal, the more painful cleaning was VERY likely due to the new person. DH left a dental practice because of an hygienist who stabbed him all the time during cleanings. He is very happy at his new practice. I still go to the old one because I have a different hygienist.
For those of you avoiding the dentist for many years, I did the same. I was traumatized when I was 15 (and many years before) because my parents couldn't afford novocaine. I had multiple fillings with nothing. When I was 15, I had a job, could drive and had a boyfriend. Why couldn't I decide not to go to the dentist? I didn't go to a dentist until I was 30. I married and couldn't defend my lack of dental care to my husband. I finally bit the bullet and went. I was SOOOOOO glad. Not that much work had to be done and I survived. I have had regular cleanings and checkups since then. Once you get started, it's easy to keep going. Just do it.
Getting off soapbox now.
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Daniel, I know it's scary wondering whether a drug will help more than it will hurt. Everything I've been told about XGeva tells me that my chances of living a longer, less crippled life are better with it. My oncology nurse recently told me what Cure-ious said about protecting the bones from new mets.
I believe there will be a time when bisphosphonates will be used for earlier stage BC patients as a way to prevent bone mets. There are ongoing trials for that.
As one who has always balked about adding a new drug to my regimen, a nurse pointed out to me that no one would even take an aspirin if they took to heart the possible side effects!
I'm glad your wife has you thinking about her and caring for her. I have a "you" here with me and it means so much.
Love from PatGMc
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airlinegal..Cure-ious brilliantly explained the mechanism and benefits of being on the various types of bisphophonates.
The problem is what can go wrong and what to do when patients are told they have developed ONJ and their femours are about to brake—due to the unnatural action of the drug on our bones.
I've done some research and read the original notes from the clinical trials they did on xgeva, and I could not find an explanation or solution to those scenarios.
Instead, doctors tend to stop the therapy immediately which quickly releases all the calcium Xgeva had been sequestering, over the years, into the bloodstream, literally poisoning the system. Death can occur if the patient doesn't get hospitalized and properly treated immediately.
Thus some patients—such as myself that are off hormonals—choose to reduce the potential for broken bones by reducing the dose.
Basically, like all the other cancer therapies, The choices are between the stone and the hard place.
It boils down to your particular profile, preferences, and instincts.
If I had widespread pains I would probably take it more frequently, but since I'm feeling good these days, I'm choosing less exposure
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Congratulations Snooky..I too feel the same way about posting too much and just not thinking about cancer..Thought like that after I started to write the other nite I quit..Welcome Karen...we are all here for each ..For now ty all for being there. Appreciated condolences about my mom..ty and advice on dry eyes.
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hi lakewoman....so sorry to read about the loss of your mother...
I just wanted to share something that is working for me as far as the dry eyes are concerned. I recently started taking a sublingual Claritin tablet that lasts 24 hours. It’s nothing short of miraculous.
It has resolved a large number of annoying symptoms that I had previously attributed to the medications, such as the dry eyes, shallow breathing and corresponding fatigue and tiredness and nose congestion and raspy throat. All gone. I hope it works for you as well.
Sending you my sincere condolences.
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Jaycee, my husband had terrible dental trauma as a child and avoided dentists most of his adult life. He finally went at 68 years old and had his entire mouth fixed under conscious sedation....over $32,000 but he says it was well worth it. I'm so thankful he doesn't have to worry about those teeth any more. He has a mouthful of beautiful porcelain crowns.
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Hello,
I am stage IV mets to bone....denovo. started anastrozole in Dec 2018
I started Ibrance 2/15/..took 2 days and broke out with very itchy rash. Of course it was on a week end so I started Benadryl and lathered up in coconut oil. Talked to nurse yesterday...MO ordered Medrol Pack for 5 days. Didn't start it though. Not crazy sbout 5 days of steroids and although I stand here awake st 3:30AM a bit itchy some, it doesn't appear to be spreading anymore.
Has anyone experienced an allergic reaction to Ibrance? I havd to call MO in a couple days. Not sure whats next.
Thanking everyone for the info and help on this site.
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Hi Bootsie
Welcome to Ibrance dancer thread. Many of us have had the rash you coul probably scroll through the thread. My rash lasted one cycle. I’m sorry I just remember using something topical
Tanya
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Bootsie Before my first month of Ibrance the specialist pharmacist told me to expect a rash. But I never had one in the 4mos that I was on it. I had a special phone no to the Ibrance pharmacist 24/7 where I could call and ask about anything that bothered me.. Hope you have one too. Wishing you all the best in your treatment. I'm not on this thread too much anymore. But the ladies here sure can answer any of your questions.
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Thank you Tanya and Snooky1954!!
No ond ever mentioned a rash and I am thinking in 2 days because of allergic reaction I have eliminated my first treatment. Maybe not!
Will call pharmacist and will be talking to MO tomorrow.
Your input is greatly appreciated...only my best to you.
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My wife has had a rash for over a year on ibrance. Some times it gets so bad she can't sleep. She sees a dermatologist, and has tried many different treatments. None seem to work really great.
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To all my friends
Couple of you have sent private messages---well, I do answer and send. But for some reason they are never in my sent box. Lost in cyber space I would imagine.
Just to update....I'm fine, 2nd Chemo is tomorrow. My fear of this was totally unfounded. Only symptoms this first week are/ a ravenous appetite, "zingers" in area of tumor, bone pain day 3/4 (not unbearable...Tylenol works) Slight unbalance that comes and goes, and a tiny bit of tingling in my feet that comes and goes
Been cold a lot, and I just can't drink 2qts of water. One to one and a half, but then up constantly using the bathroom.
I am praying these effects aren't accumulative....but if they are, I will deal with it. No hair shedding. Onc told me I would not lose it, but I think he might have been fibbing. lol.. We'll see.
Your prayers are working Ladies as I hope that mine are for you. Many blessings.
Sue
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Snooky; So glad to hear. You know I lost my hair both times I had taxol but the first time I had A/C first then the taxol and I lost it right away so was probably the A/C....I had forgotten how that worked lol. The second time I had carboplatin at the same time so perhaps it was that and not the taxol. So perhaps you won't lose your hair. Wouldn't that be nice. Glad to hear it's going so well. All the best.
Cathy
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Thank you Tanya and Snooky1954!!
No ond ever mentioned a rash and I am thinking in 2 days because of allergic reaction I have eliminated my first treatment. Maybe not!
Will call pharmacist and will be talking to MO tomorrow.
Your input is greatly appreciated...only my best to you.
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Yesterday was week 1 on Ibrance, so far so good! I know this is a honeymoon period, but am grateful that this med is available to me and am grateful to have so many brave women sharing their insights with me. I'm sorry that we are on this journey, but glad we have each other for support! I'm still working full-time which helps me keep my mind off of my diagnosis, but not sure how long I will be able to with side effects of the med. Day by day!
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Hi Everyone!!
I will start Lupron, Zometa & Anastrozole tomorrow & Ibrance in a week. So scared. Please give me advice & trick to deal with side effects. What meds should i take before the zometa infusion? What about the menepause symtoms from lupron & anastrozole? Any meds can help? Thank you so much
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The dreaded rash - I'm nearing three years on Ibrance and still get it time to time on the backs of my knees. If I sttart itching there it becomes more itchy and then painful. I hate it. I use Babo calendula cream on it (not the lotion) and find it quite soothing or at least enough to let me sleep.
I don't take Zometa but if you search the thread you'll see recommendations to have the infusion go for 30 minutes (not 15) and to take a Claritin the day before, day of, and day after to help with bone and body pain. Lots of people complain of feeling flu like symptons the first time and then it seems to ease up. Others will chime in. (My Onc has me on Xgeva instead of Zometa - I don't know why, I think it's just the regime at UCLA where I'm treated).
Lupron, I get this every three months and I've finally traced back that I'm a little less patient the first couple of weeks after getting the shot. Guess that makes sense since it's suppressing estrogen. Otherwise, I don't attribute any side effects really.
You can totally do this treatment plan. Some people's blood counts take some time to figure out on the Ibrance and which dose your body will tolerate. Once you've got that together I think you'll be surprised that this is overall okay. That said, be sure to rest when you need to, drink lots of water, and keep moving/exercising as much as you are able. Ibrance can take about 6 months to show results on your scans.
Please ask lots of questions here, complain, tell us how you're feeling, and whatever else you want to do.
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My onco told me not to worry about being taken off the Xgeva for now. It stays in your system for a long time. After I see what the dentist has to say, I will probably go back on X-geva injections every 3 months.
Lakewoman...So sorry for your loss!
Hope
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From what I have been reading, Xgeva 1/2 life is about 28 days. Zometa half life is many years.
I get to start Xgeva injections in about 2 weeks so have been learning everything I can.
Gumdoctor
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Thanks Jensgotthis!! I'm trying to stay calm
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Gumdoctor, don't let them forget to warm it up. My onc nurse hands me the vial and I hold it in my closed fist for 5-10 minutes until she is ready to give it (when she has a lull from running around like a maniac). It needs to be warmed up to be injected painlessly.
Young42, jensgotthis summed it all up perfectly. She's got this and so do you.
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