Ibrance (Palbociclib)
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Great news! After a 3-month saga with insurance company appeals, my Ibrance was finally approved to take with Faslodex and Aromasin. The social worker at my MOs office botched the first appeal so I ended up writing the final appeal letter myself.
Welcome to the newbies. More people adding Ibrance each day.
Roses, I am sorry to hear your ANC counts are low and delaying you. However, it sounds like Ibrance is working for you which is the most important thing!
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So I just got my blood work results after doing my first cycle of Ibrance (also on Femara). These two drugs are the only things I have taken. I took the test about 1.5 days after taking the last Ibrance. My WBC started at 11.9 and dropped to 4.3 and my AN went from 7.2 to 2.0.
My ON seemed happy and told me to stay on the 125mg Ibrance and I don't do another blood work for 6 weeks.
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Elle, sounds like my blood work. I thought that was really low, yet my oncologist was thrilled.
For me, not a good side effect day. Running a fever and real bowel issues. Making soup for dinner so I can take the Ibrance with some food in my stomach. Did manage a bunch of billable hours, but energy faded towards the end of the day. Tomorrow will be a better.
*susan*
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Susan--soup is good! Feel better.
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Susan, my doctor tells me every time I see her that if I have a temperature over 100 I am to call her immediately. She said we can get septic very quickly on this medicine. I hope you feel better soon!
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Lynnwood, I was told 101.5. Sitting at 99.4 right now, so have ample room to climb. :-)
The soup was good. Ate more than I thought I would and those pills are where they belong. Now more hydration since it is suddenly hot and humid here. Actually, my family tells me that it isn't hotter. But I am no longer shivering and have taken the sweater off [yet again.] I don't know which of these two drugs has broken my thermometer, but readings are consistently off.
*susan*
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Susan, I agree with Lynwood. I was told 100 also. Myra
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Interesting..... well, if I spike again and get to 100º I will call the oncologist fellow on call to see if s/he wants me to come in. Right now, my fever has gone down. Soup is happy so I am happy....
*susan*
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Monica, my onc put me on oxybutinin, a bladder spasm medicine. Stopped the night sweats completely. It has been 5 months now. I take 5 mg bid
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Ellelou and JFL, good news. Ellelou, I would be in heaven if I could go 6 weeks w/o bloodwork. Myra.
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So, it has been two weeks. I have neutropenia andmy red counts are lower but still in the normal range. 1 week to go, then a rest week. Scans on Thursday. I still have that deer in the headlights feeling after 7months.
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hello ladies, I have been avoiding this web site for a while, it brings me down too much. With that said, I wanted to share that I have been in Palbociclib /faslodex clinical trial for 1 year now. My WBC's rarely go above 4. My ANC drops every month. I have been on the lowest dose & got approved to take it 2 weeks on 2 weeks off. My last dr visit was with ARNP, which I have told them I do not prefer . I complained I couldn't say "colonial ", the name of a road I was pointing out to my nephew. The ARNP did not do a neuro exam, but the research nurse called the next day & says the MD wanted an MRI to r/o a stroke. $350 out of my pocket to say no sign of stroke. They waited until my next visit 3 weeks later to tell me that the MRI did show bone mets progression, I need to be pulled from study & try 2 new drugs that my previous oncologist recommonded against. I had high hopes for Palbociclib. Not sure what will happen next, but know I won't miss Palbociclib, I felt so weak for a week after I finished my doses. I do recommend protein drinks if u have low counts. My precious son made them for me to help bring up counts & when I drank them faithfully it made a difference
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This drug is such a rollercoaster ride, isn't it? Great news, JFL and Ellelou, and Susan and RaineWells on your bloodwork! Sorry to hear such bad news, Sue2009 and Susan on your fever, and pretty much everyone on the fatigue--but still glad it wasn't a stroke, Sue, and the fever and soup stayed down, Susan.
I feel like Ibrance is all the confusion of metastatic cancer (what's going on, what does it mean, what does the future hold, what's normal and what's a bad sign) all rolled into a really tight timeline. Definitely not for wimps, I guess
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Roses, that's the exact reason I named this drug Ibranceland. It is a roller coaster of turns and twists and we never know what is around the next bend.
Susan, glad you are feeling better and Raine, good news on your bloodwork.
Sue2009, I am sorry for your outcomes, but don't get where you say WE ARE negative?? I believe this is a grand group of knowledgeable, bright, lively women. Too bad you didn't join in, you would have seen that.
Hope your fatigue subsides today. I have been blessed not to be affected too bad with it. I hate to preach, LOL, try supplements. Have made a huge difference in mine and Pearlady's life. Read back several pages for all the advice.
Hugs, Myra
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I totally agree with Myra. The supplements have made a huge difference in my life. My counts, while sometimes a bit low, are never as low as what they were initially and what several other women have stated. It makes sense that if your counts are closer to normal you will have less fatigue.
I would echo what Myra said, look back several pages where we speak of the supplements which help your blood counts. If anyone has any questions would be glad to provide additional information.
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Myra , u miss quoted me, I did not say you are negative, I said when I come to this site it brings me down. I have 5 sons, 2 still at home. We do not discuss feelings in our house, & we definitely do not discuss my cancer. They say that's what works for them. I seriously doubt my sons' friends even know I have cancer. We recently lost a beautiful 20 yr old niece/cousin to suicide.Depression runs in our family. When I 1st came to this web site I noticed I became more depressed. My husband said, "for God's sakes, don't go there" So I avoid this web site until I feel I need to hear what others are going thru. I have been dealing w/cancer over 7 yrs now, my niece's suicide has removed death's sting for now. Being told I could no longer do Palbociclib came at a very bad time.
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Sue2009 just told us in some detail that she is in a tough spot; Palbociclib has failed her. She began by writing that she has avoided visiting the site recently because "it brings me down too much," which is understandable considering her circumstances. I don't interpret this as her implying those who post are being "negative."
Tina
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Sue3009 sorry I took your statement incorrectly. I had just never seen you on these threads before. There is just so much arguing on these various threads lately. As a person told me, you did not fail Pablo, it failed you.
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Sue,
I am so very sorry to hear that Palbociclib has failed you. This drug has been held up with such acclaim that of course we are all full of hope. And on a more personal level, I send you my heartfelt condolences on the death of your niece. What pain she must have been in, and how much pain your whole family must be experiencing. I sincerely hope that your next treatment protocol is the "magic" bullet. We are here, though, whenever you need to connect with people who are facing similar challenges.
All the best,
*susan*
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Sue, my condolences, as well, what a terrible loss.
For what it's worth, I sometimes take breaks from these boards, too. I just get too focused on cancer and dwell too much on my fears than on the here and now--it's nobody's fault, but sometimes I just need to put my mind away from cancer for a while, at least to the extent that my cancer lets me!
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Sue2009 I am so sorry for the loss of your niece and I can totally understand how sometimes these boards can be overwhelming and depressing. I also step back periodically for the same reasons that you do.
I am also sorry that Ibrance failed you. As Susan said, we all started this drug with so much hope. I get my markers checked monthly and sometimes feel that I am living from one test to the next. But I guess that's life with Stage 1V. I had a similar experience to you when I failed on Kadcyla. The drug offered so much hope and promise and I only lasted 4 months and had to move on. But the good news is that was two years ago and things are still pretty good. Hoping that your next treatment is the one that puts you into NED.
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JFL -- I am now in "appeal hell", having been denied by my insurance upon my onc's first request, and denied upon an appeal that was made by my specialty pharmacy. The reason given by the doctor doing the review said that Ibrance is considered "investigational." After contacting the specialty pharmacy and getting them to share their appeal document, it looks like they only dealt with data from Paloma-1, not Paloma-3 which would better apply to my situation since I was diagnosed with mets out of the gate 5 years ago. My onc, not being that knowledgeable about Ibrance, prescribed it paired with femara (which is okay with me--I had a 2 year run on it when first diagnosed), and I think that may be why I was denied. The research & prescriptions presented didn't match my situation. Anyway, my next step according to my insurance is to appeal to my state's department of insurance. After talking to my specialty pharmacy about this, it's pretty clear they're lost; they all sound like college students and can't pronounce most words in the Ibrance reports I referred them to which they couldn't find on their own (Who are these people???)
After reading your earlier post, I feel I may have to do my own appeal. Could you please share with me how you went about this? Any help from anyone, in fact, would be very much appreciated! I'm 5 weeks into this already.
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sue2009, I am so very sorry about the death of your niece and the disappointment with Ibrance. I knew what you meant right away about staying away from the boards. It happens to me too and I disappear for awhile. Especially when members pass. Funny now that I mention it, I googled neupogen and up pops some bco posts by two of those we have lost in the past year- justjudie and anacortesgirl. Their positive impact is still felt.
I googled neupogen because I'm in my 2nd off week and my ANC dropped more- from 910 to 600. I'm on 75 mg and from what I know that's the lowest dose. The oncology pharmacist mentioned neupogen but I haven't heard from the onc yet.
Pharmacist says to stay away from "germy people" which is fine for the summer but I'm an elementary principal so come fall...
I don't usually get colds but...
I love my little "germy" ones and while on bad days (work wise) I threaten retirement I also feel like retiring now means cancer wins.
Yes to good blood work to Raine, Ellen and Monika and happy to hear Susan is feeling better.
I'll check out the supplement suggestions from pearlady and myra and hopefully will be able to ride this rollercoaster without too much upset.
Nope. Not for wimps
Lisa
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Lisa, we have a lot in common. I was DX in 2007 and my mets were found August 1st 2009. I am a retired Learning Disabilities and Speech and Language teacher so I know only too well the breeding ground of germs in schools! I retired 3 years ago, a bit early but I haven't regretted it. I travel when I can and help out in the school district with assessments so I still keep involved that way.
JFL I have been through a lengthy appeal as well. I did end up having to go through the state's department of insurance. Go to the website of your state and it will advise you how to start. Many states have health insurance advocates. I was able to get one in my state. It involved getting a letter from my doctor and going over all the codes for my treatment. Find out what the specific reason was they denied you, and address that directly. If you want to PM me I can give you more info. I did win the appeal but it took over 6 months.
Tried Xgeva yesterday since Zometa gave me so much hip pain..... and again the severe hip pain. Oxy isn't touching it.....anybody else get hip pain?
Thinking of all of you....even though I don't mention you specifically....I value all of your opinions. Thanks for letting me be here even though I still can't start Ibrance until my WBC is better. I've learned so much from all of you. I'm armed and ready to go when I get the green light.
Linda
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I just finished my first cycle of Ibrance and my white blood count is 200 to low. The onc is having me wait a week, check counts again and hopefully can start Ibrance with the 125mg. The first cycle was easy on my body. I am having issues with feet and ankles swelling so the onc prescribed compression stockings. That is helping.
I would like to thank all of you ladies for posting on this site. I also have to take breaks from the boards so I don't dwell on the cancer but just to continue to live my life as normal as possible. I also work at a school so the summer is giving me opportunity to make a few changes to help with the germs when the children come back in the fall.
Did any of your doctors tell you to get in 10,000 steps a day? I have been doing that and I thinks it helps. Just wondering if anyone was told that.
I hope everyone has a great day and free of side effects.
Charlotte
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My onc did not tell me to get in 10,000 steps, but my Integrative MD told me to exercise 30 minutes/day/5days/wk. Have not achieved that at all. Myra
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Not trying to be critical, but sometimes I feel like "healthy doctors" are on another planet. I understand that exercise is important, but I just don't always have the energy for it. Hang in there Myra
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We all know that exercise is beneficial and helps almost any situation. Although I don't always do the 30 minutes 5 times a week, I try to keep it in mind and do what I can. Even if it means walking from my office to the train which is about a mile. I find that if it do exercise and walk as much as I can it does give me more energy. But honestly, What does10,000 steps mean??? What does that equate to???
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Depends on the length of your stride of course, but on average, about 5 miles.
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I admit I don't always get in 10,000 steps but I try to walk when I can and park further away in a shopping center. I was just wondering if anyone else had been given that advice.
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