Ibrance (Palbociclib)
Comments
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Lindalou - ANC can drop very low, below 1, it just needs to recover to 1 by the time you start.
>Z<
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Dianarose, good luck with that tube. That must be so hard. I hope that that is a temporary situation for you.
Lindalou, my onc said that with ANC anything "above .8 is okay". That said, I learn more from you all than from my onc. Is there a solid reference resource for understanding blood work results online or elsewhere? I feel as though I have to drag info out of my doc, and I'd love to better understand the results. I wouldn't have been offered the loading dose (intermediate mid-month shot) of Faslodex if I hadn't read about it and requested it.
Has anyone ever gotten a second opinion via sending records to another doctor somewhere, i.e. Mayo Clinic, Johns Hopkins, etc? I still haven't gotten a second opinion. Too busy with work, which I know is a foolish reason. Any thoughts on whether that is a reasonable option?
Hugs to and prayers for all....
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New to stage IV after 9 years of "remission ".Started Ibrance and letrozole May 1st. Mets to hip and spine and indeterminate to liver. Trying to find my new normal.
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pedsnurse, welcome! Lots of great support and tips here! Your new normal will come in time, I walked around in compliance shock for about 3 months. I'm on cycle 24 and doing well. Hang in there!
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Pedsnurse, we're all with you and have your back! I agree with Lynnwood...the new normal will follow more quickly than you think. I was in "remission" for 26 years, so quite a shock to find extensive bone mets late this Feb (only, so far, thank goodness).
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Dear pedsnurse, we also wanted to give you a warm welcome to the BCO forums. Sorry you had to join this group, but glad you did!!
Besides the wonderful support and advice you're already receiving here, you may want to learn more on Recurrent or Metastatic Breast Cancer Treatment & Planning and Bone Metastases from our main site. Hope this helps!
Please, come back and let us know how you're doing!
The Mods
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pedsnurse~ so sorry that you have to be here, but the support and kindness is unmatched and vital to finding that new normal. Ibrance is pretty mild and we are lucky to be able to have it. There are some wonderful ladies here that have been on it for a long time. Which is amazingly hopeful!Sending you gentle hugs. Because we do understand. We all really do. ~M
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Thanks Timothy for the Canada news For us Canadians
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zarovka-the naphostomy tube goes in me back into my kidney with a lovely bag attached to my leg. The dam cancer is crushing my urerter so it won't drain into my bladder.
The interventional radiologist I had yesterday did the tube exchange without numbing the area. It only hurt once. So much better then all the shots to numb the area. She put some dye in and watched on the screen . It did go into the bladder but at a slower rate so she will check again in six weeks. She said an option might be to put the tube down through the urerter into the bladder . I would still have the tube in my back but could eliminate the bag. If I ran into an issue and had symptoms it wasn't draining I can just attach a bag. I asked about going in and removing the cancer in that area and she said they usually don't go in just to remove some . Even if it gave me s year without this dam thing I would be happy. I wish doctors would put themselves in our shoes for a change
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DianaRose - I don't really buy that they can't remove the cancer. They do it all the time... remove cancer that effects organ function. Second opinion?
Joyner - If you want to read an interesting story about the John's Hopkins Second Opinion program, check this out. The moral of Fighterm's story is to research your second opinion options and have them all lined up before you are in crisis.
I have observed is that people have different experiences with these programs. You need to pull the string and try several options until you find the right fit between you, your particular cancer and a particular doctor. MD Anderson, John's Hopkins ... they all can be good but not necessarily good for you.
I work with complementary oncologists. They can be very good at guiding you to the right standard of care resources because they observe a lot of patients with many different medical providers. Dr. Brian Lawanda is not my doctor but I follow his facebook page very closely. He feels that guiding people to the right medical resources is part of his job. He does consultations for a couple hundred dollars.
Grace Gawler is not a doctor, but she also guides people to resources. She has spent hours with my medical records, raising questions about my diagnostics and treatment protocols and raising questions to bring to my doctors. A couple of them have been critical. I value her perspective because she is in Australia so she looks at research and strategies and resources internationally. We are a little miopic.
You have time. I expect Ibrance to hold for you for a long time, possibly forever. But line up a second opinion now. It simply takes time to find the right fit for you.
>Z<
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hi guys,
Dianarose- that sounds like a right ordeal. I hate the 'we don't usually do that' and wish that docs would see us as an individual. Maybe as Z said a second opinion might help.
Airlinegal just reading through and see we have had a similar experience. I am only day 13 into my ibrance(with faslodex). I went to get bloods done this morning and got a call from my nurse to say my onc said stop ibrance immediately as my nuerophils were vrry low. She didn't give me a number and I'm only getting to grips with this terminology. I feel very well just a little tired this morning. I'm back in tomorrow for my zoladex, xgeva and faslodex booster. Will get bloods on Monday to check levels? Is this common the first cycle day 13? A bit freaked out if I'm honest. Can they recover quickly? Is there something else hoping on?
Thanks micmel for the kind words. I was having a bad day and feeling guilty after 4 glasses of wine at an engagement dinner. I hope that hasn't sent my nuerophils crashing!
Z - I will look at those links. Thanks for sharing.
Welcome pedsnurse great help and advice here. Best if luck. Lynnwood that is great you are 24 cycles in! JoynerL that must have been a shock after 26years. Lucky though to have such good drugs in our arsenal. You must have something very slow growing so I'm sure you will do very well.
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I am 18 mo on letrozole and ibrance. I started at 100mg. At 5 mo, realized my quality of life was no longer there. I was so tired all the time, at certain times during treatment, I barely made it out of bed. My neutrophils were almost always below 1. Took 1-2 weeks off to recover. Also, if visiting with the grandkids, I would get a Nupogen shot to boost white cell production. After discussing with MO, we cut back to 75mg and I am doing great! I found that during week 3, very little appetite, and the only things that appealed were carbs, carbs, carbs!
Hope this helps!
C
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I am 18 mo on letrozole and ibrance. I started at 100mg. At 5 mo, realized my quality of life was no longer there. I was so tired all the time, at certain times during treatment, I barely made it out of bed. My neutrophils were almost always below 1. Took 1-2 weeks off to recover. Also, if visiting with the grandkids, I would get a Nupogen shot to boost white cell production. After discussing with MO, we cut back to 75mg and I am doing great! I found that during week 3, very little appetite, and the only things that appealed were carbs, carbs, carbs!
Hope this helps!
C
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Lilliemille...my counts were low the first 3 months and my Onc at the time was more concern with getting the Meds started and wasn't too concerned. But they didn't tell you what your count was. Would like to know. I keep copies of all my blood work to refer back too. My new Onc is a little more cautious and will not keep me on it if below 1.0. Hang in there.0
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Lillymillie,
I am just finishing my first round of Ibrance and my MO and I are figuring it out together. My blood did tank, 0.9 neutrophils at day 18 in the first cycle but he was not concerned. Now they will have me doing blood work every two weeks starting next Tuesday. It's my understanding that there is more concern about your blood coming back before the next round. I have not heard of anyone stopping treatment but would not stress as it's not the only drug you are on. I'm a newbie but would push your oncologist, perhaps suggesting a dose reduction for round two.
I met with my MO yesterday and, as always, he was super. I feel fortunate to have a doctor that I can easily discuss options with.
Feeling great still on Ibrance and Arimidex. I'm sorry that the first round didn't work out for you Bigbhome but it sounds like the dose reduction did the trick. I'm now back full time at work and, surprisingly, enjoying it!
Welcome pedsnurse. I was over 15 years out so know what a shock it would be.
Sending hugs to all of you.
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thank you bigbhome, airlinegal and sadiesservant for the replies. I'll know better this afternoon when I head into go see my breast care nurse. I'll ask first the numbers. As we are first couple of patients on this drug here my oncologist does not have any frame of reference yet. No one has been on it 3 months so he hasn't scanned anyone yet either.
Bigbhome is that shot like the nuelasta shot you get after chemo? I wonder if they use this with ibrance? I always got one after chemo. It might be helpful for me! I'll ask about that too. Maybe bloods every two weeks would be helpful. I had nearly booked a two week Mediterranean holiday during my cycle 3 but may rethink it if I'm having trouble so early on! Thanks will report back!
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Thank you for the support. I've been reading these boards since my dx of reoccurrence in April. Just heartbroken. Had a second option at City of Hope which was a really great experience and they agreed with my MO her as far as tx and past tx as well. I'm on letrazole and Ibrance. Had labs today but I'm feeling fine. Went on a hike yesterday for the first time since dx and hoping to keep that up. Extreme pain to my left hip greatly improved after my radiation. Trying to stay positive. My youngest son came home from college today for a Mother's Day visit so that has been a great distraction. I'm a pediatric nurse taking some time off to get my head together but will be going back in July.
Still trying to navigate these boards a bit...thanks for letting me ramble a bit
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lilliemilli- nupogen is like neulasta. neulasta never worked for me after chemo, that's why I got nupogen. Works great! My counts were continually close to 1 or below 1 for the first 6 months. Switching to 75mg made all the difference to me physically and my neutrphils.
Should be going back on to 19th round next week.
Hugs and prayers,
C
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lilliemilli- nupogen is like neulasta. neulasta never worked for me after chemo, that's why I got nupogen. Works great! My counts were continually close to 1 or below 1 for the first 6 months. Switching to 75mg made all the difference to me physically and my neutrphils.
Should be going back on to 19th round next week.
Hugs and prayers,
C
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Bigbhome, I know what you mean by quality of life. I'm just so dang tired all the time. Should have started cycle #3 yesterday, but was told to wait another week because my wbc was so low, 1.1. Hope some of the tiredness will go away in that week. Not sure my MO will keep me on Ibrance because my TMs have gone from 1700 cycle 1 start to 3900 cycle 3 I won't be starting until next week. Cycle 2 was 3000, so it went up less anyway. I have a CT scan coming up at the end of the month.
Pat(Sadie) glad your TX is working out, hopefully you'll quit making as much cancer juice in your lungs.
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So found out that my neutrophils had dropped to 0.9. He says a regular person's sound sit at 2.0. We need to be at 1.0 to take drug. 0.5-0.9 is a Grade 3 is time to take a break and grade 4 is 0 - 0.5 is the point he would worry. So he said we'll do anther blood test on Monday and if they have gained ground I can go back on. If they are still low we will look at dose reduction. He said they are so low as my body is still recovering from chemo still Aug-Dec 16...so they will be sitting low anyway
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Lilly~ that sounds about right. You don't want to take chances with that. It's good they are watching them, you don't want to mess around with those numbers. Sounds like your onc is on the ball. Good that they will re check. Usually that is what happenes, you'll Be stronger when the numbers come up. Hugs. ~M~
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hi,
I was diagnosed with stage 4 8/16. I went to Moffitt here in FL, John's Hopkins and Memorial Sloan Kettering and all said that Ibrance/Femara is standard therapy for stage IV breast cance
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Aelise~ sorry that you have to find yourself here but you are in a good place with a lot of fabulous ladies. WYes ibrance seems to be the standard of care for stage four because it works along with usually letrozole or anastrazole. Quite effective medicine and there are many ladies that have been on this for over 22 cycles. I hope you find this place as comforting as i have over this terrible time for me and my family. I wish you nothing but success and comfort as you start your treatment of ibrance. ~M ~
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I'm in a Ibrance FB group and just read the story of someone from the Pfizer stage 3 clinical trial who is still on the drug! She's on 41st cycle!!!! She was bone mets. Started on 125 reduce double to 100 and now on 75 with some neupogen to help counts bounce back
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Yahoo. I am on that lady's tail.
Finishing cycle 17.
>Z<
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love it!! 41 cycles, wow!
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Jen, we must be in the same facebook group! I also saw this and it made me SO hopeful! I'm on cycle 24 and holding my own!
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Finished cycle two and platelets held their own at 192. White count was over 4. 😎 Now a week off. Other then two different types of bacterial infections in one kidney I am doing ok. She hasn't mentioned scans and I don't bring it up.
Hope everyone has a great weekend and Mother's Day! Hubby and I are off to Pennsylvania for 10 days. My favorite place to go is the Amish bakery
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WoohooDiana!!! Way to go! Enjoy your trip and Happy Mothers day!
Eat some pastries for me!
C
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