Ibrance (Palbociclib)
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Hi ladies, just made my first post in the bone mets thread and wanted to pop in here. I have been lurking and reading since April when I found out that my stage 2 ILC is now stage 4 with widespread bone mets. I just finished my second cycle of Ibrance, dose was reduced to 100mg for my second cycle due to low counts. So far, fatigue has been my worst side effect. My onc is very excited about this drug. My tumor markers dropped 50 points after the first cycle, I don't know if that's significant but the doctor was pleased. I have learned so much already from you ladies and hope to learn even more
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Lynnwood 50 points is great. My tumor markers dropped initally and then went up about 50 points and have come back down again to slightly below when I started. My onc is also excited about Ibrance and says that he doesn't anticipate markers dropping rapidly and that sometimes hormonals take longer to work. Hope yours continue to drop.
Are you also getting Femara?
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I'm glad 50 points is good. Before I started treatment my onc told me to expect the numbers to rise before going down, so I was surprised to see the decrease. I am taking Femara and Xgeva as well. I took Femara during my initial treatment for stage 2 in 2008, but my doctor didn't hesitate to use it again. I will have another scan in July. I am off work now on short term disability and hoping to return to work. I am a nurse which is a very physical job but my doctor seems to think it's possible. I just want to get back into a somewhat normal routine, being idle is not good for me, it gives me too much time to think and worry. Still having trouble wrapping my head around this.
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just back from Onc.
CEA markers up. He says it could be because I was off meds for a month, or it's a flare, or it could be caused by the inflammation due to recent surgery. The other marker (the bc specific one) hasn't changed at all. I don't know what any of it really means.
WBC 2200, lowered my Ibrance to 100 for second cycle. Seems to be a very popular thing to do. His PA asked if I could wait a week to restart cycle while we try to get more info about my dickhead insurance, and he said NO WAY, no waiting, even a week. So, ya.... Guess he is anti "time off".
Also, I may be the only bone mets girl I know not on a Biophosphates. I had a horrible ONJ incident year one. I should check the bone mets thread on that. Makes me a little nervous.
I asked him about radiation. He said he won't make that decision until next PET (end of summer).
Lynnwood, sorry you have to join us here in the MBC thread. You must be on Ibrance as a first line treatment, so I think that's a good thing. Looks positive so far. Good luck.
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stefanjoy still no response? That is ridiculous!! How are u going to continue with no insurance? My markers were mixed also. We will see again on Friday Myra.
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Hello everyone!
I just popped the first pill tonight- decided not to wait. Thanks for all the good wishes and right back at you all. I hope everyone avoids insurance dick-headedness and get the treatment they need.
I appreciate all the info shared and Sandilee, when you said you had no problems at all with 100 mg I decided to go for it and start tonight.
Sleep well my friends
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Just got a call from MO office. Ugh, PET scan scheduled for July 2nd after almost 4 cycles. Let the Scanxiety begin! Myra.
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Oh,Myra. I know what you mean. It's still a couple of weeks away, though, so try not to think about it yet. Your meds have a little longer to show their stuff. It will feel good to have some confirmation that they are helping, though. Crossing my fingers for you, and I'm sure I'll be right behind.
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Myra, I know you have been waiting. The not knowing if it's working is hard. It'll feel good to have answers soon. I'm only on month one, so I get no answers until the end of summer. My turn to wait.
So, I have a question. I am at the end of the fourth week (Ibrance free) of first cycle. I was expecting to feel better this week, but I don't. still fstigued, still kind of naucious. Is that what is happening to others too? I'm bummed, as I could really use some energy right about now.
Stefanie
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Stefajoy I was naucious during my first and second cycle only. Since then not at all. Are you taking the Ibrance with a full meal? I find that helps tremendously. Also for me, works best to take with dinner.
I also take lots of supplements to help with my counts and I think that they also help with energy. My biggest issue is not sleeping well. I'm wondering if that's from the Ibrance/Femara. Been trying different herbal supplements rather than taking sleeping pills. Does anyone else have trouble sleeping and/or staying asleep?
Myra I know the feeling. I get my markers taken with each cycle and am in total stress mode until I get the results. Over the years my tumor markers have been totally reliable, so I'm never too surprised by scans.
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Stefajoy, I am also on my "off"" week. Just finished second cycle. While I have not had any nausea, I am exhausted! I went out to lunch with a friend today and couldn't wait to get home and lay down. I hope this improves, as I am hoping to go back to work..at this point it's going to be very hard. Myra, I will also be having my first scan next month. I will be a nervous wreck waiting to see if this treatment is working. My heart pounds just thinking about it, but if the results are good, I will be so relieved. I will be taking my anxiety meds for sure
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pearlady, can you recommend some good supplements.?
I also don't sleep well. I take a lot of Ambien, but even then I only sleep a few hours. Could also be why I am tired all of the time. I do think insomnia is one of the side effects.
Stefanie
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Thanks for the warm welcome. Ever since my mom took a turn for the worst last fall, this site has been such a great source on so many levels.
Her wbc was good last week so they will continue on another cycle. Although she hasn't been doing well physically, a lot of pain & fatigue, which is discouraging. Hoping that it is mostly side effects and not the cancer taking it's toll.
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My fatigue and malaise is 100% better today, it is my third day off. Stefajoy,watch the ambien, it could have the reverse effect on you. It is a really funky drug. Myra.
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Stefajoy I agree with Myra. I used to take Ambien or Lunesta, which is said to be a safer sleep aid than Ambien. Would only take 3 - 4 pills a month at most. I had the reverse effect from the Lunesta in that it started to keep me awake. My onc said that sometimes happens, but I was surprised since I wasn't abusing it. I took myself off of Ambien as I've known people that have had issues with sleepwalking and my onc also recommended not taking Ambien. For the insomnia I take some herbal supplements as follows: Deep Sleep, De-Stress, Sedalin and PhenTropic. I sometimes add 20Mg Melatonin. I usually don't take them all every night, but always take two Deep Sleep and sometimes add Melatonin and one other thing. They do help somewhat. I also stopped taking Ativan. There have been studies linking it and Zantac with Alzheimers. I laughed to my onc and said with my luck I'll beat breast cancer and end up with Dementa.
I take many supplements as recommended by my onc and by the holistic pharmacist. But I think that the main supplements for energy and immune building are the following: Maitake D Fraction Drops (three doses daily), Shitake (2 daily), Coriolus (turkey tail mushroom) (2 at each meal), Chagra (2 daily), Meriva by Thorne (2 daily). Also Astragalus for building white blood cells and Ashwaghanda for Platelets. There is a lot of information also on the discussion board for Building our Immune Systems With Stage IV and BC.
Here's hoping for a sleep filled night.
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Lynwood and Stef- are you on the 125mgs or the 100s? I had fatigue with the 125s but not on the lowered dose, so far. I also added vitamin B12 to my regimen, along with my d3 and calcium. It's supposed to help with red blood cells, which can cause fatigue if they go too low.
For sleep, 5mgs of melatonin do it for me.
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Sandilee I am on the 100 mg. I felt much less fatigue on the lower dose. I am on my 2nd day off and only felt tired the last 3 days. I just started taking a B complex vitamin this week, so I am hoping it works. My counts came up significantly on my last break, my onc did weekly blood work the first 2 cycles and now I have "graduated" to every 10 days.
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18 days on Ibrance 100 mg. and my white count has dived to 1.3. So I still feel well but I am wondering if I will be one of the first moved down to 75 mg. Unfortunately, if that does not work then I am not a candidate for anymore Ibrance/Letrozole. I am being really really careful about avoiding highly public environments that might make it easy to pick up an infection. My tumor markers remain low at 7. Still I really really want to make this combination a long term thing for me. Carolyn from Music City
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Stefajoy you aren't the only one not on biophosphates I'm not and probably never will be. I had jaw surgery to remove part a my mandible almost a year ago and they feel it isn't worth the risk to take one of them plus eventually they may need to do further surgery replacing the titanium plate with bone and the biophosphates can cause a problem for surgery. I am on my third cycle with Ibance I have taken letrozole for a year now with good results. My only problem has been low white counts but I'm able to work full time and function like normal. I'm the only one in an office of about 20 people that hasnt missed work for illness can't figure that one out Lol. I too have sleep issues ever since surgery last July I sleep 2 or 3 hours then I wake up and have to switch positions to get comfortable again. I just bought somnapure sleep aid there have been alot of ads for it so I figured I would try it out
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thank you all for the great feedback regarding sleep. No more Ambien for me.
I'm actually happy to be dropping to 100 msg Ibrance. Sounds like it could help with the SEs.
My Onc has consistently told me not to take calcium. He says I get enough in my food, and I guess there is such a thing as too much. Sandilee, that's worth checking into if you haven't already. But B12 and D3 are good ideas. Melatonin also.
Duck, sorry about your ONJ. I've never met anyone else who knows the horror of it like I do.
I love this group! This is the best support I've had in years.
Stefanie
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Mine was actually a tumor on my mandible that was mets from BC but I definitely want to avoid ONJ
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Sleep is so so important!!!
My two cents on sleep aids: I once had a dr prescribe gabapentin/neurontin off label as a sleep aide. It's a really clean drug that does not act adversely with others. Same dr also suggested benedryl for occasional help when my insurance changed. I have ativan for occasional use. I have even used it every night for a few months and never had a problem stopping
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Stefajoy,
I am another one - I developed ONJ this year - left upper jaw. It is at bay right now, but they had to take a small piece of bone tissue out. I have always taken care of my teeth, but one rouge cavity under an old crown started the problem. No biphosphonates for me too, inc Xgeva which is not technically a biphosphonate.
I, too, have insomnia probs. Can't say it's from the Ibrance because I had it before I started.If I take one ambien for 2 nights in a row, I "get hooked" and need it every night. If I absolutely need to be wide awake the following day, I will take clonazepam but that's about it.
Best wishes, Vivian
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Hi all,
I am just checking in. I am finishing up cycle 5 - the first one at 100mg. Although, I had a few issues in the beginning ( not sure why) this whole cycle has been very easy. No fatigue to speak of at all and only two days left.
I am seeing my MO next week and she wants me to switch to Anastozole from Tamoxifen. I think I am going to delay it a couple of months as I am finally feeling pretty good right now.
Stefajoy - mt naturopath
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finish my sentence... My naturopath has be take K/D liquid instead in D3 and like you MO he thinks you can get calcium from food.
Good luck to all those just starting..
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My primary care oncologist recommended a magnesium product for sleep - it works for me - it is called Calm - it is a powder you mix with water and it can be purchased in a health food store - like Whole Foods, or Amazon. I just take the basic dose, two teaspoons in a little warm water about an hour before I go to bed. She says it is also generally good as many of the drugs we take deplete magnesium. Susie
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Thanks for the concern about the calcium, Stefani. My onc prescribed a calcium/ magnesium combo with the Xgeva, which can lower your calcium levels to dangerous levels. This is in their safety recommendations.
"Pre-existing hypocalcemia must be corrected prior to initiating therapy with XGEVA® (denosumab). XGEVA® can cause severe symptomatic hypocalcemia, and fatal cases have been reported. Monitor calcium levels and administer calcium, magnesium, and vitamin D as necessary. Monitor levels more frequently when XGEVA® is administered with other drugs that can also lower calcium levels. Advise patients to contact a healthcare professional for symptoms of hypocalcemia."
They always measure my calcium levels before giving me the shot. One time it was barely high enough to get it. I think the fact that I also had parathyroid surgery makes it especially important for me.
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My onc has me take Calcium 600mg and Vitamin D 400 units twice a day, but told me to double the dose on the day I get my Xgeva shot. She said Xgeva really depleats your calcium
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Sleep is amazingly important I agree. Has anyone besides me tried meditation instead of drugs? I use meditation every night to make me drift off to sleep. The name of the meditation I am using now is "healing meditation" by Kelly Howell. It is 30 minutes and it allows you to get your mind to a quiet place. It is easily found on iTunes. I just did not want to add another drug to my list of too many! Hope that helps.
Have a great day all. Myra.
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Sorry, I forgot....Sandilee my mother also had thyroid/parathyroid surgery and has very miserable osteoporosis because she was not told to take enough calcium. The doctor (during her last break) told us you could see thru her bones!
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