Ibrance (Palbociclib)
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Hey there - I'm a newbie to this site. I was diagnosed with mets to my left sacrum and coccyx. I start Ibrance and Letrezole at the end of the month. I'm not too worried about SEs yet - just hoping this combination works for me for a long time. I feel great - the only reason we even caught it was because I had a stress fracture on my left sacrum due to a lesion. Now though, my anxiety is through the roof. I'm trying so hard to be positive and hopeful but there's always that voice in the back of my head reminding me that the cancer is back. I have felt comforted by all of your posts. Thank you!
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many thanks for your answers everyone, they confirm what I expected. I'm thinking the second stand in onc has got it wrong, my regular onc is back soon so I will check it all out with her. Once a month would be so great, longer time for travel in between!
Dianarose great news on the blood work, praying it continues for you to get the a/c Thursday.
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I am on cycle 24 and except for the first couple of cycles, I get tested on the 21 or 22 day of cycle. If my neutrophils tank, I usually just take an extra 3 - 10 days Off, depending. If I am going to see my grandkids I get a neupogen shot to give whites a little assistance. I can't answer about xgeva. I got monthly shots for a year and a half, then I developed Osteonecrosis. If you travel, your No can give you a written order for bloodwork that you can use just about anywhere. I was gone for 10 weeks last summer and had bloodwork done in Montana.
Hugs and prayers everyone!
Claudia
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Bigbhome- how do you feel after you get a neupogen shot. I have never had one. Just curious in case they decide to ever give me one
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Dianarose - I can't say there is a big difference, but it does bring my white count up faster. Do you get nuelasta after your a/c? I always did but it never worked, I always ended up with nuepogen.
I am so glad you are out of the hospital and feeling better!
Hugs and prayers
Claudia
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Dianarose, I'm so happy you're better! I too locked myself out of the house right after I learned of the bone mets in my femurs. (I was expecting them to snap at any minute!) I had to break my kitchen window, climb onto a box and slither in sideways across the kitchen sink and glass-covered countertop. I ended up laughing out loud as I named myself the Ninja Acrobat!
About the reasons oncologists give one bone medicine over another: I think a lot of it is habit. Cost also sometimes enters into the decision. I remember my doctor being happy that I once had a reaction to an oral bisphosphonate because it made it easier to justify XGeva to the insurance company. XGeva costs $5500 each month for me (including the cost to inject). Thank goodness It is covered by Medicare and my supplement! My husband and I are so thankful we have no out of pocket expenses when you consider my care costs about $20,000 a month.
About the blood work > I have always had one visit every 4 weeks at which I get blood tests and the XGeva. Medicare will only pay for one XGeva shot during a calendar month so sometimes I do 5 weeks to make that work out.
Welcome to all of you who are new to the group. You will find caring and unselfish people here. If you've been totally behind the scenes, please speak up so we can add you to our prayers. God bless every one of you.
About Ibrance > I read that it is now showing success at reducing the size of some childhood brain tumors! Isn't that just wonderful? I expect we'll here about more and more cancers being treated with this wonder drug for which many here have been pioneers!
I'm starting Week 2 of a 3 week break. It sure is nice! Hope you all are happy and well.
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Thanks to everyone for the newbie welcome!
Cure-good guess, my name is Marsha but I have been referred to as Marshmellow more times than I care to remember or Marsha Marsha Marsha...is another of my all time least favorites
I just wanted to clarify that when I began the Ibrance combo 8 months ago, I did have my blood work done bi monthly or monthly but (maybe because I complained about how many bills I was getting even with decent insurance or because I was getting needle phobia) for whatever reason, my MO decided to switch me to the 3 month blood work and scans. Next scan will be a PET in October and then the blood work and results the next day. Hopefully, the extended timeframe will not be something I regret.
The only bone mets that I have were a few lesions on my skull. I had a tumor on my lower left eye socket (did radiation) and a tumor on my bile duct which we shrank with chemo and keep shrinking with Ibrance. Since I have the lobular variety, I understand that it tends to appear in some unusual places.
Again, thanks to all the knowledgeable and positive members of this forum.
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Welcome Marsha! Any information is valuable to all of us. I asked my nurse yesterday why some docs use Zometa and others XGeva. She said they work differently depending on the type and whereabouts of the cancer.
I will be having more fluids today. But, I am scheduled to see a nephrologist tomorrow....so, a new chapter begins. Needless to say, I am petrified and pray that there is a simple solution to my problem. My creatinine level goes down just a tiny bit with each bag of fluid, but it should have been back to normal way before now. So, please keep me in your thoughts and prayers.
Hope
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Hope, You are in my prayers, and I do hope that the nephrologist puts a plan in place quickly. My DH has chronic kidney disease as the result of kidney cancer surgery and many post-surgical complications. He leads a normal life. Sometimes the fear of the unknown diminishes when we gain knowledge. I pray that will be the case for you and that the nephrologist gets things under control soon.
Dianarose, I hope you continue to improve and that your treatment smashes those evil cells.
Lynne
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Nona - I am praying for you! I hope they get this under control for you!
Dianarose - I hope you are feeling better today!
Hugs and prayers everyone
Claudia
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I still feel weak but I guess that will take some time. My sons boss told him that your mother probably won't get better or out of the heelchair. He was so upset he was shaking. Time to find a new job! He's only 18 and has had a mom with cancer since he was five. What a jerk!!!
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OMG, what a cruel thing to say! I am so sorry he had to hear that! Or children, no matter their age, need as much kindness and support as we do! People should learn that if you can't be positive and supportive, say nothing at all. I would be furious if someone said something like that too my son and he is 36, at 18 I would be livid!
Take care of yourself, my friend, and give that boy a great big hug!
Hugs and prayers
Claudia
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Hi Ladies. I don't post much but just wanted to drop in and say that you are an amazing group of women who support each other like no other. I used to post and bc.org was a regular thing for me. My husband now does research and posts as husband 11. (rabbit photo) A photo of his real pet rabbit actually. Please know that I pray for all of your every day. I too had a liver biopsy which I tolerated well. The toughest part was of course the anxiety and results. Praying for healing and blessings for all of you beautiful women!
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Diannarose: Thougn I don't post much, I am thinking of you often and wish you well and hope you cangain strength. I am horrified at what was said to your son, so unhelpful and unnecessary. I have two sons aged 18 & 20, our kids deserve kindness and hope, not brutal opinions.
Why can't people be like Thumpers Dad in Bambi who, according to Thumper, said "If you can't say something nice, Don't say nothing at all" (Clip on YouTube)
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Well this A/C must be doing something. With two naphostomy bags I still felt the urge to go sitting down and actually peed some. That's my big accomplishment for the day besides actually getting dressed lo
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Dianarose, WOOHOO! Every little bit counts.
Hugs and prayers, Lynne
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Woohoo Dianarose! That's a great day!
Hugs and prayers
Claudia
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Dianarose, I want to punch your sons boss! He is horrible to say that to your son!
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Good news...had a pet scan today and the Onc had been concerned about a large hot spot on my right lung and it has gone away. Yeah! She is assuming the Ibrance is helping to clear it. Will have been on this med for 1yr and 3 mo. For me the first 9 mo was difficult and it is better now, but still fighting the fatigue. Also, I lost quite a bit of my hair....it is growing back.
Dianarose hang in there...you are in my thoughts and prayers.0 -
That's great news, airlinelegal! I am so happy for you! It is very uplifting to hear about successes! I hope this continues to work for you for many years!
Hugs and prayers
Claudia
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Dianarose, I'm happy to hear the A/C is helping a bit, I pray it's just keeps getting better. I can't believe your son 's boss said such a cruel thing, who the h--l does he think he is? Only God knows those things. Hope your son finds a new and better job soon.
Nonahope, I'm so sorry your having to deal with this kidney issue now. I hope you don't have to go far to get the daily fluids. That would be a real pain in addition to everything else.
We live very close to the hospital and cancer center where I'm being treated and I'm grateful every time I have to go there. Yesterday, we had an eventful day. I was on my way out the door to go for an echocardiogram and then get my blood work done after since it's all on the same campus, while DH was doing some wood working on his large table saw and he cut his finger, bad enough to need stitches. So I said ER or quick care? He chose the ER. So I took him to the ER and by then it was too late to have the echo, so I called and cancelled that. Then while we were waiting to get him sewed up, I decided to go over to the oncology lab and get my blood drawn. They were very nice about it and took me in within about 5 minutes. So back to the ER and they were just sewing up DH. He will be fine but he hurts and will lose the nail. Just hope this doesn't impact our trip much with handling luggage, etc. Never a dull moment.
It was just two weeks ago that I blacked out and ended up in the same ER also. The upside is that my MO told me to stop the Ibrance for a couple of months until after our trip. I can't believe how much better I feel, the fatigue is so much better. Just praying now, the letrozole keeps the big C in check. My tumor markers from yesterday's draw were all normal! The CA27-29 was the lowest Its ever been. Praise our mighty God for many blessings. With so many here having such problems, I almost feel bad posting good news but I think it may help to know that there are successes here. Sometimes it just takes awhile. I was on cycle 20 when I stopped and I'm intending to resume in October unless tests show things are stable and then who knows maybe I'll just be on Letrozole for awhile. I'm beginning to understand that maybe IBrance might work better if we take a break once in awhile and give our bodies a chance to recover and the cancer to become more vulnerable to Ibrance again.
It's a good things my energy is coming back because tomorrow our DD, DGD, and SIL arrive from Idaho on their way to take their last daughter to St. Mary's college in South Bend Indiana. We are thrilled she will be closer but I know our daughter will be so sad to leave her and go home to the empty nest.
Welcome to all the new people, sorry I haven't addressed you each by name but things have been busy. You will find lots of help and support here. Sometimes we are here to just listen also. Feel free to vent away.
Have a goodnight all, prayers for everyone!
Faith (in the future).
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Dianarose...Glad things are going better for you!!
Faith...Yes, we love the success stories. It gives us all hope for a brighter future. What an ordeal you and your DH went through!!
I see the nephrologist at 11:00 this morning. Scared to death. I wish I was not an anxious person -- it would make things so much easier.
Will check back this afternoon....wishing all a very good day!
'Hope
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Beverly11, you have a WONDERFUL husband!
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Hope - I am praying for good news for you today ! Faith - that is awesome news! I am so happy for you! You have me an idea, my tumor markers are great, my pet scan in July was good, do you think My mo would let me go off Ibrance for the month of October? We are going camping and trail riding for 2 weeks, both are physically taxing. I am on cycle24 right now. I'm going to ask, that would just be fantastic!
Hugs and prayers
Claudia
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Well, I really liked the nephrologist. Needless to say I was a nervous wreck, but he did put me at ease. He took me off my other BP medication. My onco had taken me off of one a few days ago. I will have to monitor my BP every day over the next week or so. He would like me to be able to get this creatinine level down on my own with drinking lots of water/fluids every day, rather than have to be given fluids at the facility. I have orders for lab work to be done in a week or so, after being off these meds and "on my own". so to speak. I'm hoping and praying this is the answer. I will call my onco tomorrow to let them know what's going on and we will go from there. He said certain medications can definitely affect creatinine levels, as well as chemo. We shall see. I'm to call if my BP shoots up and he will prescribe something different. Hopefully, that won't be necessary.
Thanks for your support!!
Hope
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My wife just finished her second cycle with Ibrance. First at 125, second at 100. Tumor markers went up slightly after the first round, and down slightly after the second round. Liver values continue to improve. Oncologist is now switching her to 75mg dosage as her neutrophils are still quite low, at 0.5 after a week off. They are giving her another week off, then restarting at 75mg. We have a new oncologist, as the old one is dropping his breast cancer practice in favor of another specialty. New Onc is young, but did a recent fellowship with leading breast cancer specialists.
On an aside note, my wife tried prescribed cannabis extract 10:10 thc/cbd for her sleep problems. Instructions said start with less than 0.5ml. That's rather confusing, what amount is that? So, she tried 0.3 and it did nothing. Tonight, she will try more.
I can't remember how to change the therapy listed below. Can anyone point me through the maze of options? edit: figured it out. It was the change to public that was needed on the treatments.
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Airlinegal and Dianarose, hooray for good news. Every little step helps. I will take good news wherever I can get it!
My kitchen remodel is about finished and my cupboards are now full again. It felt like moving getting it all settled. I was so exhausted I couldn't post yesterday. I had everything built easy clean and easy access. It is a small kitchen (I live in a condo) but it feels much larger in the white. I cook as often as I can--it is what I can still do for my family as they work while I am at home although my DD has to clean up after we eat because by then I am exhausted. Here is a picture...
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Intolight, your new kitchen looks so fresh and bright! I love it! If you're cooking for your family, you're doing much better than I am! Good for you!
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IntoLight...gorgeous! Fresh, clean, and minimalist! The stylists would love you. Well done!
Great news, Dianarose and Airlinegal! But, Dianarose, we all need to get together and gang-tackle your son's wretched boss. Very, very bad.
Faith, have great fun with your family and with launching that last child to school-
--Lynn
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intolight, your new kitchen is gorgeous!!! I know you will enjoy it
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