Ibrance (Palbociclib)
Comments
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My onc suggested the 10,000 steps a day in May 2014. I can see that it might feel like just one more darn thing on the pile, but I figure it's one thing I can actually control in this crazy random cancer life. I've missed some days but I've been averageing over 10,000 a day since she said that.
I have no idea if it helps or not, but it can't hurt, right
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lindalou, I'm happy to hear you are armed and ready to go and hope you can start soon.
I got a bit of a chuckle out of the 10,000 steps thing. Not chuckling because I don't think it's a good idea but because I tend to be the ready fire aim type and ordered a fit bit because I thought I could convert the steps into weight watchers points. You can't as far as I know. I wore the thing for a week and haven't picked it up since.
Speakng of ready fire aim, I ordered Astragalus supplement for immune support last night (thanks pearlady and myra) and then asked my onc about it. He better give it the thumbs up. Capinva, would you mind sharing what you are doing to get ready for the little ones. In addition to taking a probiotic and now adding astragalus, I want to figure out a way to continue with more walking once school starts in addition to a regular home yoga practice I do in the a.m. . I really do believe it helps with fatigue and probably our immune systems. I guess it's actually simple- just have to leave work at a decent time and force myself to walk the dog when I get home rather than immediately pour a glass of wine. Time is such as issue when working! Thanks for listening to me "think-type"
Lisa
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I've never been told 10,000 steps. But I have been told many times to do some sort of aerobic activity a minimum of three times a week for thirty minutes a day. I try to do five times a week but don't always succeed. I've also been advised that the thirty minutes of aerobic activity will help control blood sugar for up to 12 hours.
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Well, onc wants to stop the Ibrance and just continue with faslodex. Boy, my body seems to have temper tantrums over drug combinations. I didn't last long on afinitor either.
Happily though, he said he wants to stop since the last scan showed increase SUV, not "true progression" as he defines it: new mets or an increase of an existing met that is greater than 20%. This was the first time he defined "progression." The radiologist called it progression but I like my once read on it.
Tons and tons of good wishes to all of you in Ibrance-land
Lisa
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Thank u all for your responses. I especially appreciate those who admitted needing a break from site also.
Not good remembering names, but wanted to comment on couple of issues. # 1 -- Neupogen works great for helping bring up the all important ANC. I only needed with 1st cycle. It was explained to me that your body reacts better after 1st dose, but my doses were also dropped immediately. #2--who ever was complaining of hip pain, get it checked out to R/O mets to hip bones. That is where my bone mets started, & I learned that my MO did not understand the value of PET scans vs bone scans. I have had one hip radiated 2 years ago & have decided to get other hip radiated starting next Mon, 2 times a day for 4 weeks. My MO thinks this is crazy, but my RO who has over 30 yrs experiences assures me I am taking right path for now. Just trying to avoid a broken hip. #3-- getting insurance to pay for Palbociclib . My dr said she has had better luck getting it approved than she anticipated. Don't give up. Can some one tell me cost at this time? I have been in trial so haven't paid for drugs. Lastly, exercise, so important. I was told 30 min brisk walking 5 day/wk. I walk my dogs & swim laps. Exercise helps keep your lymphatic system moving, which helps keep immune system functioning better. You all are awesome, supportive & very much appreciated by me. Sue.
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Sue, you have provided great advice here. Thank you, and best wishes with the radiation. It must have been so concerning to learn that your mo was not up to speed. I say the P-I-A radiation is well worth avoiding a broken hip!
I haven't had any Ibrance for almost two weeks, but I've developed itchy rashy elbows and on one thigh. Has anyone had this or is it faslodex or unrelated to bc. What?!?!?!
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Sue hoping that your next treatment really kicks the cancer back. Do you know what it will be?
I hope you don't mind me probing a bit. You mentioned that you were in a trial for a year. Did you have good results for a year and then it stopped working?
Also you mention neupogen. Were you allowed to take while in the trial? My onc has prescribed it for me and I do use it on occasion. Most of the women here do not use it. However my onc has assured me that it is not contra indicated with Ibrance. I've even checked with Pfizer and they have confirmed that it is not on the list of drugs that interact with Ibrance.
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Sue, thanks for your advice on Ibrance! Good luck with your treatment after Ibrance. The cost of Ibrance is just under $10K a month. Ouch.
I start my second cycle today, at a lowered dose of 100mg. My MO told me that he has been checking around with some experts and nearly everyone is being lowered, which is why he was so quick to take me off the 125mg dose. He said that the few who are staying at 125 have to take so many breaks to get their counts back up that it is better to be on a lower dose consistently. I know some people here are still on 125. Is anyone able to take that dose without extra recovery time? He said he doesn't know how the PALOMA study did it with 125.
If anyone needs help with their insurance appeal for Ibrance with Faslodex, PM me. I can send you a sanitized version of the letter I wrote which was successful. Don't make the mistake I did of assuming the doctor's office will have an expert writing your letter. The doctors don't write them and the staff who do may not really understand what the letter needs to say, who should be taking the drug and which facts about your cancer and your profile are necessary or helpful to include. I was truly disturbed when I read the second appeal letter the social worker wrote. It was terrible and understandable why I was initially denied twice.0 -
Lisa, to prepare for school starting in the fall I have moved my desk further away from the students coming in to get items they have forgotten and I won't be helping in the school clinic this year. Keeping hand sanitizer close by at all times.
I have been pretty good getting close to or at least 10,000 steps a day. Certainly can't hurt and it is something I can do without taking more meds.
For those who have been stage iv for several years, do you ever get off treatments or just go from one treatment to another?
Hope everyone has a good weekend and feeling good.
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Oh JFL.
I have spent much of the day on the phone. Long Story short, I have been on Ibrance 125 but need to go to 100 mg. Baling insurance...Need interim amount until TriCare for Life will pick it up 9may be 60 days)....Need someone to help me get it at discounted rate for 60 days..Cannot afford of course $20,000 for that amount of time but do not wish to give up something so successful. Carolyn from Music City
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Carolyn, what a nightmare. Good luck. I know doctors usually have extra reserves of 125 from people like you that need to lower their dosage and turn over their unused pills. Is it possible they may have some 100s you could swap with (turn in your 125s in exchange for 100s)? Before my insurance was approved, the psychologist at my cancer center mentioned that she could connect me to someone who could get me a month or two of interim supply until my insurance went through. She told me one of the other doctors had extra 125s (before I was lowered to 100s). She also mentioned that she had connections to a Pfizer rep who could get some. My own MO didn't mention these options but she did. Have you asked around at your cancer center/MOs office for any informal routes like this?
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what are the cycles regarding ibrance? My doctor has ordered 21 pills at 125 mg. Waiting for insurance approval.
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Aaoaao, you take Ibrance for 21 days, then have 7 days off. Blood work done to check levels, some oncs do it weekly, some at the middle of the cycle and some at the end. Many of us here have started at 125mg and had the dose lowered to 100 mg due to low counts. Getting ready to start my 4th cycle on Monday. My tumor markers have dropped just shy of 100 points since starting Ibrance. Good luck
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I think my hair and nails have stopped growing!!!! I went to shave my legs and there was hardly any hair there. Then I realised that I haven't had to trim my nails in a couple of weeks. Does that mean my hair is going to come out? I hope this doesn't sound insensitive. I don't want to hurt anybody
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JFL
I've been on 125 mg Ibrance since March-no lowering of the dosage and only the 1 week off in-between I think I'm one of the few who's stayed on this dosage without a change of the cycle. My biggest complaint is being tired but now that I don't have to commute 1 1/2 hrs each way to work I'm hoping for more stamina.
And one of the side effects is hair loss/thinning- mine is a a bit thinner on top but nothing noticeable to anyone but me
Have a great weekend all!
Babs
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Thanks for the info Lynnwood. I was confused why it was 21 pills instead of 30. I've coped well with chemo so I hope I handle this well too.
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I am on my second cycle and still on the 125mg. You might well find that the 7 off days are a good thing. I certainly felt stronger when I started the second cycle. Best of luck!
*susan*
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Babs, you are a trooper! Wonderful you can handle 125 so well.
I too have noticed my leg hair barely grows on Ibrance. It is great but I hope the same thing isn't going on with my head!
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Hi all: This is my 8th day of my 1st cycle . I'm on 125 mg and Femara I'm pretty tired and looking forward to the 2nd cycle if it's going to help me feel less tired. I'm also anxious to see my counts. I don't see my Onc. until the 30th unless something goes wrong before then .
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Hi All, Just an update on the clinical trial of Ibrance/palbociclib and 5FU/ 5-fluorouracil at Georgetown. I have been on this trial for about 5 months. As far as I know, they have only had 3 other women with breast cancer on the trial.
At start, I had terrible BC lumps and bumps under arms, in breast, and bones and abdomen. The palpable lumps are almost totally gone except for a spot under arm, and PET/CT shows that cancer is shrinking or stable in the different parts of my body. We do not know if the good results are from the chemo or the Ibrance or both.
Side effects have been tolerable: tiredness (treat with low dose ritalin, 2.5 mg twice a day), sore throat/mouth (magic mouthwash), thumb peeling.
Recently terrible ear pain with noise hyperacusis/ probably related to the chemo. I will post about that in another forum as it is probably not ibrance related, but welcome thoughts from anyone who has had hyperacusis.
Overall, very happy with this trial. The doctor and nurses at Georgetown are great, and it is wonderful to have had two good scans since I have been on the trial.
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I was joking with my husband today that it would be just my luck. All my hair will stop growing Except for the hairs on my chinny chin chin! Babs, it's good to know that you were able to stay on the 125. I was just surprised about the hair. I have never been on chemo, was stage IV from the start. I thought I might lose some hair but it isn't high on the se list and it never occurred to me that ALL my hair and my nails would stop growing. CancerThriver, I am so glad to hear that you are seeing good results
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I received my Ibrance in the mail Thursday. I had to work all weekend, so I was thinking I should start tomorrow night when I get off of work. How long will it be before the side effects hit? Just curious, because I am a nurse and I have Monday off, but then I work 20 hours between Tuesday and Wednesday. Thanks.
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Hopeful/Allison, in my own experience, Ibrance side effects are gradual, not dramatic like chemo side effects. Fatigue seems to be the common side effect for many of us. I had some minor tummy troubles with my first dose and at the beginning of another cycle, but I think my body has now adjusted. Starting after you get off work seems like a good plan, just in case. Take it with a meal and just avoid things that might be challenging to your tum, like high-fat.
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Raine-Wells and JFL--About the hair. I am puzzled about it, and I don't know what is at work here--taxol (finished a few months ago), chemo-induced menopause, Ibrance, and/or letrozole. The hair on my head looks thick and needs normal trimming, but everywhere else the hair seems to be less than before, especially underarms, which hardly need shaving at all! I'm just finishing my fourth Ibrance cycle.
JFL, I see from your stats that like me you are recently menopausal. How about you, Raine? Maybe we are all just experiencing typical menopause hair changes. And menopause doesn't make most women lose the hair on their head, though I guess eventually it can get thinner. Let's hope we can keep it where we want it and lose it where we don't want it!
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thanks Shetland. I will take it tonight as planned then.
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Jopeful,
As you can tell from all the posts on this thread, the range of experience is wide. For me, day 5 has been the hardest one during both cycles. I can't be too far away from a bathroom on this day. Week 3 I had some soft skin [strange places like nose, mouth, vagina] discomfort but nothing that stopped by regularly scheduled life. I like tracking these things so I can plan my activities to not happen on a regularly "sucky" day. And I am a numbers kind of person. I like to see patterns. Perhaps this gives me the illusion of having some control?
*susan*
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i have been on Ibrance/Femara since the end of February. Like Babs I have remained on the 125 without any real issues. A little bit of tiredness towards the end of the cycle. But nothing that has kept me from my normal life of work and travel from work.
When I started I was just coming off a year of Halaven and had hair but very thin and slow growing. Very happy to say that my hair has grown back. A little thinner and a bit slower but very acceptable. I take Biotin three times a day which is supposed to help.
CancerThriver so glad you have gotten such good results. Great news that there are additional options with the Ibrance.
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I had my ovaries out in '03. They were cystic but no cancer. So the only thing for me is the Ibrance. I am not really concerned about the hair. I was just surprised. Today was my last pill. The last 3 days I didn't work. Too tired. I work at JCPenney and it is physically draining. Just rested. Walked around South Carolina Aquarium to stay out of the heat. Hope everybody has a nice day
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Hi,
New to this forum (not to MBC)... JFL, I think I sent you a PM about your offer to share info on how to appeal insurance co's denial of Ibrance, but I'm not sure if you got it. I am dealing with Blue Cross Blue Shield. Just got denied due to "not being medically necessary without Letrazole I have already take Femara and progressed. Falsolex has been working well upto a week ago, when a scan picked up a tiny bit of progression in my liver.. My onc was willing to give Ibrance a try but her request was denied. According to my insurance co. the appeal needs to come from me not my doctor. I can use all the help I can get on how to approach this. .... Thanks ladies for all the positive energy on this site!
Sonya
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Sonya, I just sent you a PM with some info. I can also send you a copy of my letter by email
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