Ibrance (Palbociclib)
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Do you know why insurance is denying? Doesn't make sense. Most of us are not on this combo as a first line treatment and most of us have been approved with insurance. I'd ask more questions of your Drs office. I'm thinking they haven't given the correct information to get you approved. Good luck, I have confidence it will work out for you.
Hydration, yes, water and lots of it is key to helping your body keep manufacturing the blood cells it needs. Drink more than usual. Headaches, low energy, and to a certain point, low counts can be eased with more hydration. I work hard at it daily. Sometimes we get busy though and just one day of not drinking enough can cause you to feel awful.
I felt better today after sleeping for 10 hours straight. I think I'm not sleeping as well because pain is keeping me awake or waking me early. Need to get a handle on it.
😴
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Stefajoy, I second Romansma about checking to see why the insurance was denied. The approval process should start with your onc's office, they should submit the forms to the specialty pharmacy approved by your insurance. They would be told by the pharmacy why it wasn't approved. In my case, the form asked my diagnosis, and because I was Stage I at original diagnosis, that's what was the office wrote as that's what they consider "official diagnosis", and then my onc followed up with details about mets in an attached sheet. They just saw "Stage 1" and it came back "Not appropriate." As soon as it was explained that I had mets, it went through quickly.
Good luck.
Thanks for reminding me to drink a lot, Romansma. Tomorrow I will get my blood checked to see if I can re-start the Ibrance. Wish me luck, as it's been three weeks and two "failed" blood tests since my last Ibrance pill. I have felt well the whole time, but my neutrophils haven't cooperated.
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I started ibrance in March . I have to receive neupogen injections for my WBCs .
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The reason for the denial they said was that it wasn't a first line treatment, and that's what the FDA approved, which doesn't make a lot of sense since most of you are not first line either. I'll keep you posted on the appeal.
I'm a camel. My body doesn't tell me I'm thirsty. And I dislike drinking water, for the most part. I need constant reminders to drink, and I do believe it is the culprit of many of my health problems
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yes I'm on ibrance and femara. Starting my 4th bottle
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Stefajoy,
Try alkaline water. It never quenches my thirst. as a matter of fact it makes me thristy! and it is supposed to help your immune system.
p.s. I am starting this treatment the same time as you!
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Liz, sorry you didn't have luck with the Ibrance, I hope the next drug works for you. Hopefully the prilosec will help with the reflex - it did work well for me - it releases for 24 hours so it's always working.
Good luck tomorrow, Sandilee - I hope the counts are up for you so you can get going again.
August15, how often do you get the neupogen?
I agree with everyone that hydrating on all these meds is critical, especially in this humid weather. Had a similar experience doing yard work last year on a really hot day, got really sick and wiped out from dehydration. I also found that hydration can help with nueropathy, and it makes the blood draw easier, so there are many reasons to hydrate. I drink soda water because I find it hard to drink a lot of plain water - however, not sure if carbonation is an issue with the reflex, will ask the doc.
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Ibrance is expensive so insurance companies will find whatever reason they can to deny it. Funny, it you think about it, many of the medicines we take are "off label" and not prescribed for the FDA approved use, although they are never denied -- for example, people taking effexor, lexapro and the like for hot flashes; occasionally, ativan is prescribed for chemo nausea. Doctors are free to prescribe off label in their professional discretion. It is only denied when the drug is expensive.
Vivian, where do you find alkaline water and what exactly makes it alkaline? I have never heard of it but would imagine it one's boosts immune system and has other health benefits like you said, since the whole acid/alkaline imbalance seems to play into a lot of "western medicine" health problems.
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Sandilee, good luck today!!!! Myra
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Sandilee good luck today with your blood draw.
Definitely agree about the water and hydration. I was told not to drink carbonated water as the PH is too low. I prefer to drink the water at close to room temperature and find I can usually drink more than if it is cold. Also take a supplement ChlorOxygen which helps build red blood cells. You have to drink a full glass of water with that. So I'm being forced to drink more and I do feel better when I do.
Holly I get Nuepogen from time to time. I've discussed with onc and also called Pfizer regarding Nuepogen. After getting the run around at Pfizer I was finally able to speak with someone and they advised that there is nothing in the data saying that you can't take with Ibrance/Femara. I think some oncs are being overly cautious. That being said, I am able to keep my counts up most times with various supplements and my whites have not been critically low. When I do get the Neupogen it's always between cycles and haven't taken after every cycle. Last time it was two injections starting two days after my last cycle.
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Good to know about the Neupogen, pearlady. Thank you. I may ask about it. I imagine his problem with it is that the effect is only temporary, and when on a three week regimen, my counts would no doubt drop again within a few days without another dose. My white counts were ok with the exception of the neutrophils. Hopefully they have come back sufficiently on their own by today.
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Stefajoy, that's interesting (and frustrating) about why they denied it. Most of us here are not first line treatment and I, for one, didn't have a problem getting approved. Good luck on the appeal.
Sandilee, hoping your counts are back up so you can start another round!
I think it's interesting how some Oncs are using Neupegen and others are saying it's not indicated. I hang at .6-.9 ANC even after a week off and no Neupegen. I wish I knew why. Guess I'm just curious why you'd use it with a chemo that got you that low and not Ibrance.
I'll be taking an extended break after this cycle to go on vacation. We will be taking a cruise to Alaska and I don't want to be ultra compromised on a cruise ship. I finish about 10 days before we leave and we will be gone 8 days, so I'm planning about a 3 week break. Of course if tumor markers are still rising with my next blood draw, I may be on a permanent break from Ibrance. Hope not. Anyway, I'm interested to see how well my counts recover during that time. They haven't budged much at all during the 7 day breaks between cycles.
Go drink some water everyone!
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Sandilee I usually get my counts checked right after and then half way through the cycle. I think my onc was concerned starting when the counts were so low. I think that the supplements do help during the three week cycle, since the counts haven't been low until the last few days.
Romansma hope that you have a wonderful cruise, that your counts recover and that your tumor markers fall, or at least stay stable. Not necessarily in that order, however.
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Romansma, I've been on that cruise with my family. Out of Vancouver? The Inside passage. It's AMAZING and beautiful. You will love it. Have fun!
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Yea! My neutrophils have returned! I'll be starting the 100mgs as soon as CVS can get it to me. All of my counts were up and nuetrophils were in a healthy place.
Romansma- I think that my onc isn't keen on using an artificial neutrophil booster with this med in my case because something like Neupogen only lasts four or five days, and then they would go right back down. He would prefer to find a dose and a schedule that works for me long term by monitoring my counts and adjusting the dose with the hope of finding a schedule that will work without having to boost my ANC with another drug or worry about infection.
I do have to go in in two weeks for a CBC, just to see how things are going on the 100mgs. They want to see how my body reacts over time- more information. If the 100 keeps me in range, that would be great.
This drug is still "experimental" as far as the doctors are concerned and may need a little bit of juggling to find what works best for each patient. I figure if my doc is willing to go to the trouble to work this out, I'm good with that. Even if I have to wait an extra week to restart each time, if it's working and it keeps me stable (a big, unknown at this point) then great.
The fact that I can stay on the Letrozole without any side effects ( a few weird dreams, occasional headache) throughout is a help. I've never taken this drug, and it's one he might have prescribed at this time if Ibrance never existed. So in a way, whatever boost Ibrance gives is icing. That may also influence what is and is not worth the risk in my case.
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Sandilee, I feel the same way about having to delay then reduce the dose (because of mouth sores). As long as I'm still taking letrozole, I am doing something. It feels weird to have these unused 125 mg pills that cost $319 apiece.
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Doesn't it though? I half expected the pharmacy to ask for them back. They couldn't resell them, of course, so why.
My NP suggested keeping them on hand. It's possible at some future date they might up the dose.
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Hooray Sandilee! I am on 100mg and so far seem to be doing ok. Myra.
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That's great to hear, Myra. Have you had more than one cycle with the reduced dose? And your ANC was ok to restart?
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yes, second one and everything recovered within 7 days! Myra
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That's very encouraging, Myra, thanks.
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Hi friends,
Just wanted to check in. I had my onc appt on Tuesday after my first round of Ibrance/Femara. I did end up getting a Neulasta shot because my WBCs were low. It was either that or lower my dosage but they meds were already mailed to me so we went with the shot. Just a side note, I've been so loopy that last night I accidentally threw the $12,000 pills in the trash without realizing it. Thank God I had a gut feeling when I couldn't find them to check the trash! What a looney tunes!
Anyway, my oncologist has about 11 other ladies on the same protocol. One of them had been experiening increasing TMs so they decided to get a PET/CT scan. Guess what? Totally clear scan! Soo...he's telling me to not put too much emphais on the markers..mine did go up a bit after being on the meds for 2 weeks. I'll probably find out tomorrow the results from Tuesday but if they have increased I'm going to try not to worry about it. I'm sick of worrying!
Love ya ladies!, Christine
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Shetland_Pony,
On mouth sores, I have several from my abbreviated first cycle along with a mild case of thrush due to the suppression of my immune system. My onc ordered a "cocktail" madeup by the pharmacy and I have been able to eat after a week of misery. My platelet count is very low and am waiting to restart with a lower dose. Over the counter products did not work for me and I wish I had this "cocktail" when the sores began.
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Christine, Amen! I hear ya. I am sick of worrying too! My DH and I planned a getaway to NYC because I am so sick of worrying! Thanks for the encouraging words about TMs.
Max Otto, read back to page around 17, there are some supplement recommendations for platelets and blood counts. They have worked wonders for me and others on this site.
Have a great day all, and try to make it worry free.......😝to cancer.....Myra.
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Sandilee, great news on the blood counts, glad you are onto your next round.
Pearlady, thanks for the info on neupogen and carbonated water. You continue to amaze me with all your supplements, etc.. since I have all I can do to keep track of the Ibrance/letrozole and Zantac, never mind the vitamin D and fish oil which I often forget to take.
Interesting info on TM's - My doctor says they don't mean much till there's a pattern, so it's "wait and see."
Romansma and Myra, have fun on your vacations!
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Sandilee great news about your counts! So glad you can push forward.
Have fun on your trips ladies. I might have to plan one too. I think we all could use a worry-break😃
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Great to hear that the increasing TMs were not an issue. I am hoping that happens with me too! Just wish I had decreasing pain, then I'd be a little more hopeful. Oh well, time will tell! Thanks for relaying that, Christine.
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Sandilee, hooray on starting up the Ibrance again!
And Christine, interesting about the TMs and good to know--does anyone know why that's the case Mine were up but it's still early days for me.
I'm having a lot of sort of icy-hot pain in my hip bones which is one of the places i have a lot of mets--no idea if it could be healing, flares, worsening cancer, but I guess time (and eventual scans) will tell. Anyone else have anything like that happen? It comes and goes, doesn't correspond with movement or pressure...very odd
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I started Ibrance yesterday after a month off due to neutropenia. My values rallied to normal and now I will have 100 mg from now on...I am so happy with it. I did not have to answer questions since GEHA picked up the cost. There are lots of questions from the people at the Specialty Pharmacy that overnight delivers the packet of Ibrance. Carolyn
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After 5 years of Faslodex, I will be joining this group. Took my first letrozole tonight, and just have to wait for the Ibrance to be approved and delivered. I was expecting to hear from my Oncologist's PA today, but nothing. Having read all 26 pages of this thread, I am feeling mildly prepared. Have some concerns of course, but since I expected to start Xeloda, this protocol feels like a reprieve.
*susan*
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