Ibrance (Palbociclib)
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We have all gotten approval, and for most of us here it is second and third line approval. If you look back a few pages, I posted some articles regarding that topic.
Pearlady, I posted my remedy for the constipation problem afew posts back. Works like a charm and natural too!
Also, finally got an avatar up of myself and DH. thought it would be nice if you knew who you were writing to. Myra.
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Good morning all you brave ladies! Wow, am I tired! Got myself in tears of frustration yesterday with all the walking. It got to be too much. I recovered and it was a nice day after I got through my feeling sorry for the self that I am now. My son told me last night that he loves being on on vacation with me and dad. That's all I need to keep going!
Me and my husband and what is left of Lake Mead. Off to Zion today!
Stay strong, everyone. Life is too amazing to spend it in bed every day! (Sure hope this Ibrance is working!)
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AWESOME. Myra
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Thanks Patty. I spend many hours in front of my TV on the couch. Now I can spend hours relaxing on the beach after the terrible winter we had. Today its 42 and damp. Not really spring yet.
Hope everyone is feeling well today with good energy.
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Love your photo, Romansma. You guys are both adorable.
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Romansma love your picture . What a beautiful couple. Glad you are enjoying your well deserved vacation.
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outstanding photo, romansma! 📷
You were tired but YOU GOT OUT OF BED AND DID IT!!!
Makes me smile to see you two.
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What a beautiful photo Romansma. Certainly understand feelings of frustration and tiredness, but you are doing so much. I hope I can do half as much on vacation this year. And you look great!
Update on Ibrance - although initially approved by insurance being paired with Arimidex, Insurance is now questioning the pairing. So my Onc wants me to switch to Femara to make sure I don't get denied down the road. So I will start the Femara on Monday and get that in my system for a week and then get the Ibrance. I I am new to this world but itseems there are a lot of glitches to get smoothed out when a new drug comes on the market. My Onc says there is no difference between arimidex and femara as far as effacacy. Wonder if anyone has had experience here with switching drugs.
Take care ladies and I pray we all reap the benefits of this new treatment.
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I am 61 grandmother diagnosed with ilc with bone mets in jan 2015. I am on the 3rd round of Ibrance and femara now. 2nd round...Bone pain (especially ribs) so I started using a heating pad. It felt better. But then I had itching in the night. When I woke up to check it out It was a rash that spread quickly as the day went on. Also got a sore on my tongue that kept getting worse. My nose had sores that got so bad that started little nose bleeds. I felt the pain in all my bones where the cancer is. Also "pings" sharp pains everywhere at different parts of my body that lasted like a few seconds....once in a while. My toes go like out of joint once in a blue moon. I had a headache that lasted over a week every morning. Ibuprophen took care of it. Some hair loss. Fatigue is my worst complaint. My feet are so dry and cracking. Muscle twitches here and there. Very constipated. And now have Gerd. Prescibed med for gerd. 3rd round of Ibrance and femara...i used coconut oil for my nose. It is all better. My fingers felt funny so I put coconut oil and white cotton gloves at night. They are better. I used a zilactin on my tongue for a couple weeks...all better. Bone pain is gone. Aquaphor (eucerin) worked for my feet. Prunes and prune juice work for constipation. My blood counts were a little better last week. The powder that was prescibed helped the rash go away. It left my skin a darker color and like leather with dry scales but no more itching. So far...all se are manageable for me. I hope this helps others on Ibrance/femara. I pray for all of us everyday.
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Riverbelle I also have constipation especially now that I am also taking a mild liquid iron. I use Constipation Stop, an herbal remedy which my holistic pharmacist recommended . You can get in Amazon. It really helps and is very gentle. Glad to hear you're feeling better. I'mI'm almost finished my second cycle and my TMs are lower. Hope Hope this tretrend continues all of us.
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Hi Riverbelle. Have had none of those SEs except those little sores in my nose that led to small nosebleeds. Will try the coconut oil. Low blood counts. So far TMs down slightly after one partial cycle.
Have a back ache, more like a muscle cramp, today. Spent 2 hours yesterday slumped over a desk counting a huge mound of change. We save all our petty change and we have $180.00 to turn it and my back knows it! LOL
Pearlady isn't your cruise vaca coming up soon? Are you counts ok to go? I hope so, and have a wonderful time.
Hope, how was the rest of your vaca? You guys look awesome.
Jjski62, good luck starting. Your MO is smart not to screw around with the Big Pharma. We unfortunately are at their mercy.
Have a great day all! Myra.
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hope. - I love the pic. You got a handsome guy there and you are looking beautiful. Did I say awesome pic ! Thanks for sharing. I always think of you as your wedding renewal pic of you and your dh. Glad you are out there doing it ! Proud of you for keeping on keeping on. That's what we really have right? Either lay down and give up ( not there yet ) or medicate our pain , eat for energy and keep moving so we don't get stuck in that position. Staying stiff all day never helps me for sure. I hope you enjoy whatever time you have left in vacation. You have earned it.
Everybody else : have a great day. Glad to see so few side affects for this new drug snd love to see the excitement it holds in maybe just maybe being the new go to drug for bc mets. I think you all are just wonderful for being on the front line so to speak as research history is being changed so dramatically. Praying one day this will be a chronic disease and then an unremembered disease. A bco sis used to say something like " remember breast cancer?.... Yeah me neither!"
Jjski. - hoping femara treats you as well as if has me. Sorry you are having to change. But if dr thinks it's going to prevent you from having ibrance in the future it's probably a good idea. It's just a little sad that you will have to mark another a1 ( esp such a easy one ) off your list to try before iv chemo. Here's hoping you won't need to worry about that because this tx is doing it's job !!!!! Hooray.
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jjski62,
Good luck with the new drug, I will pray for good results for you and for all.
I will be starting a new round of Ibrance but need to get another blood test tomorrow to make sure the counts are OK. The nurse says that although the blood counts are low. my %POLY-A was 66.3% which means I still have ability to fight infections despite the low counts. After one round of the letrozole with ibrance, the tumor markers were as follows:
CA27-29 increased from 1138(H) to 1208(H)
CEA decreased from 20.4(H) to 17.6(H)
Romansma, great picture, thanks for sharing. You and your husband look terrific, and you are inspiring me to get outside now that we finally are getting a couple of nice days in MA - got out for a walk yesterday, went to my son's baseball game (finally the teams are playing outside) and I actually saw some crocuses and grape hyacinths emerging from the wet ground in my yard (the dirty snow piles are finally nearly gone except for the mountains that were dumped near the beach). So things are looking up!
Thanks everyone for all the great information!
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Riverbelle, pearlady, Myra, thanks for the tips and info on side-effects. And Romansma, love the photo, looks so sunshiny and happy! I hope everyone out vacationing is having a great time!
I'm still waiting for the specialty pharmacy to get everything together and send me my pills. I'm not supposed to start taking the Ibrance until I get home from my own vacation at the end of the month (onc dosen't want me out of range when starting new meds and thinks the letrozole for now is ok and add the Ibrance then), but I'm starting to get anxious about having them here by the time I get back. Why can't anything with bc ever be simple?
PattyPeppermint, I hope you're right about bc someday being a non-issue. I hope Ibrance does a lot to make that happen, or at least as the start of a new kind of drug I hope this is the beginning of something great.
And 3Holly, I hear you about the weather here. The sunshine today feels so nice especially in comparison to that never-ending winter!
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Myra we are on the cruise now. In St. Croix today. Beautiful beach day. Feels so good after the terrible winter we had. My counts were a bit low but not terrible . My hemoglobin actually went up after taking the liquid iron for three days. Only four days left in this cycle.
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Thanks everyone for sharing about the nose sores. I have had he same thing since the first cycle and thought it might be related to the Palbociclib, now I would say "yes", since many of you have had the same thing.. I have been using a saline nasal spray to keep any infection from my nasal passages and will try the coconut oil.
I drink a couple of organic Kevita probiotic drinks everyday and that helps with any of the gastro issues. I have been very conscious of diet on this third cycle, getting enough protein and iron, drinking enough fluids and I have found the fatique to be better. It could be I am just getting used to the drug.
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I made it back! Exhausted, but really happy to have the memories! Finishing my 2nd cycle of Inrance tomorrow night. Having my blood drawn tomorrow. Checking tumor markers too. Really hoping they are down. I feel a little better than last cycle at this time. I'm tired, but not so bad that I can't do a few things. Also, something interesting happening over the last couple days. I've been able to cut back a little on pain meds. I don't want to get too excited, because the day before this started, I had a total melt down from needing pain meds. Still, I'm a little optimistic that something might be heading in the right direction!
How is everyone?
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So glad you had a great trip! Great memories for you and your family.
I see that you have your blood work done the day after you finish your cycle. By "cycle" do you include the week off as well, or just the three weeks you're on the drug? I guess my question is, do you take your blood work after your blood has had a chance to bounce back on the week off?
Also, do you have the pills for the next cycle in hand when you go for your blood work? I'm just a little confused as to how this works with the monthly draws and keeping up with they cycle schedule.
I'm still waiting to hear if my insurance has approved Ibrance. I've started the letrozole.
Myra- I have looked back and I don't see anything confirming that people with Anthem Blue Cross have been approved for second or third line therapy. Obviously, there are women here getting it, but I don't know their insurance situations and if they are similar to mine. My onc said that Blue Cross has denied some patients but some were appealing. If you have had an easy time getting it, consider yourself lucky.
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Sandilee I have united healthcare. They wanted $9000.00:mo. Hahshs. Applied to Pfizer and got the pills for $5/mo. Have u tried this route? We have gotten it as second and third line for most of us. I have my blood work halfway and then before starting the next cycle. Tomorrow is halfway.
Hope so glad u had a nice vaca. Good luck tomorrow with your blood work. Myra
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Just letting you know I take Celexa 40 every day and there has been no interaction with arimidex or I am now on Femara and Ibrance....I know of no reason to stop Celexa ever...IT has been wonderful for me for over 15 years now. Carolyn from Music City.
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Thanks, Myra. I haven't tried the Pfizer route yet because I haven't heard whether the insurance has given approval yet. I wonder if it's possible to go through the Pfizer program before getting insurance approval, or do you wait until they give you their answer/copay, and then approach the Pfizer? It sounds like they work together somehow. I'll give it a few more days and if I don't hear anything, call the doc to see what's up and let them know about the Pfizer program, if they don't already. Thanks for your reply.
And 9K a month! Isn't the drug cost 10K a month total cost?It sounds like they're paying the copay, and they want you to do the rest,lol. Glad you got the card from Pfizer!
My onc said my copay might be $500 a month. If that's the case, I'll apply for the copay card program, and hope I can get it for $10 until the end of the year.
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I think you need insurance denial to go the Pfizer route. Your Onc should have all the info and work with insurance and Pfizer to get it to you as fast as possible.
On blood work, it can be different from Onc to Onc. I was doing my both at the end of the 21 day cycle and again the following week before starting again. I think that was because my counts got so low. As we get comfortable with how Ibrance is affecting the counts, we won't need as many blood draws. I'm due for my Xgeva too and always get a CBC for that.
My specialty pharmacy called today to refill my Ibrance and Femara. I will get it in the mail by the end of the week and be ready to start again next week.
Hope all this helps, and really hope you get approval soon
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Romansma - what specialty pharmacy do you use? I have been using Diplomat and they seem to mess up every month on my Xeloda - this month they failed to get me my meds on time - my onc is changing me but I don't remember to who. My local Safeway has a specialty arm which would be much easier but Medicare won't pay for a retail pharmacy.
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my specialty pharmacy is Optimum RX. so far they have been on top of things. Myra.
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I believe I'm using Caremark in Beverly Hills. They usually call me right on time each month to renew everything. I used them for Afinitor and even the Xeloda in th past.
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Hey gals, even though I'm no longer taking Ibrance, I wanted to chime in on the copay and Pfizer's assistance. In my case, insurance approved, but my copay was going to be $250/mo. The pharmacist enrolled me in the copay assistance program and I only had to pay $10. It is worth asking about if you have a high copay.
Good luck to you all!! I'll miss not being on the thread, I'm going back on taxotere next week.
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nancyh,
I was wondering how you were doing, sorry you will have to switch drugs again. You have been amazing to keep up your running and thank you for all your great advice, you are an inspiration. Good luck, and I will keep you in my prayers.
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Good luck on the Taxotere, Nancy. Hope it goes easy on you. I think I missed why you needed to change. Did you progress, or was it SEs? How long were you on Ibrance
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Carolyn, thank you for the info on Celexa. I have been taking it since my diagnosis and will continue it with the Ibrance/Femara. I was also taking Lyrica but weaned off of it as I don't feel it was really doing anything for me and we could not find info as to what interaction, if any, it may have had with Ibrance, as no one in the study was on it, at least that's what I've been told. One less pill for the pill box is always a good thing.
My insurance is Independence Blue Cross, Personal Choice. I will also be getting the discounted copay of $10 month. My specialty pharmacy is Onco360.
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After a week and a half of who knows what, I got the news today that my Ibrance is all set and will be on the way, such a relief! The final hold-up was that it had been flagged for "high copay," but since I'd already called my insurance, I knew the copay was around $2400 (I have great medical insurance, but not so pharmacy insurance). And I already had my Pfizer copay card printed out, so that was taken care of and under control. Thank you, everyone, for all the tips and input about the cost and the card option.
One thing my onc mentioned that I though was interesting was that even though I had tamoxifen after my other stage III treatments, the "first line" or "second line" starts again with the stage IV dx, so for me this is considered "second line" after the faslodex which I had first with the stage IV dx.
But, either way, it's been approved, thank goodness!
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