Ibrance (Palbociclib)
Comments
-
My wife's insurance company is paying something around $7000 for the palbo. I think that's 90% of full retail. They agreed on a 90/10 split as part of their compassionate access program.
My hope is that the money to be made is an incentive to come out with something better, and again something even better. In the end, its for the most part a money driven industry.
0 -
A new Shingles vaccine has just be approved that is not a live virus vaccine. It has NOT yet been studied on people with decreased immunity (due to drugs or other conditions) who are at most risk for Shingles. I am hoping that a study of immunocompromised people is in the works. In the meantime it is working very well for those who received it.
It is called Shingrix (zoster vaccine recombinant, adjuvanted) by GSK. You can read more about it if you want to at shingrixhcpdiscover.com.
0 -
Nkb, I hate to be a dolt about this, but are we, as MBC patients under treatment, considered immunocompromised? I had just talked with a friend about this vaccine and had planned to get it (I have had the original shot, too). Thanks!
0 -
Joyner- we are considered immunocompromised. The thought is that if your T cells are ok it will work-but, need the data- since we and all the other immunocompromised people are at highest risk for Shingles and are not good candidates for live virus vaccines it seems that we will be GSK's targeted consumer. They did not test the vaccine in people who were previously vaccinated with Zostavax or people who have gotten the Varicella vaccine. It may turn out to last longer or be more effective than Zostavax-time will tell.
You are lucky that you got the Zostavax already. My MO said no to that-I had put it off
0 -
just checking in ...PatgMc that is wonderful.. so enjoy your dancing as we all dance with you.
Nonahope. Just had an MRI. I have an appt in 2 weeks for the next phase in treatment. I love your one day out one day in strategy. I have been doing because the out day knocks me for a loop. that but feeling guilty on my day “ in”. Now I will call it my plan or strategy. Hope you are doing good on taxol
Just a note. I’m off Ibrance for a couple of weeks and just noticed I’m not so tired these past few days. But now bone pain in the spine is bothering me more. A little voice in my head says” did we end Ibrance too soon?” Today’s mri may tell .
Wishing you all a lovely peace filled weekend. Maire.
0 -
Pat and Txgata, so happy for your news. We all celebrate together!
I take each day as it comes...sometimes one day on and one day off, and sometimes several on or several off. I can't control my time more than that. But I do get up and about as much as possible. This morning I went to get my hair dyed, and then later I am going to my granddaughter's annual NICU party which is always a lot of noisy babies and fun times. Wednesday I ate lunch out with my friends and then on to the dermatologist. But in-between I have been exhausted. I make myself get up and dress every day because it helps me feel stronger, but I spend a lot of time in the recliner. I make myself get up every hour to get things moving, but some days I cannot manage even to do dishes. Best get going as it is time to go to the party...we all manage the best we can. We should celebrate wherever we are and enjoy our days as we have them. I rejoice with good news even knowing days are still hard. No one else understands, but we do. I love and respect you all.
0 -
NkB- I noticed they created a session on ILC, too!! Is that because its just been overlooked and they've been criticized and so want to highlight it and bring people up to date in general terms? or because some exciting new treatments are working there way up? both? will be interesting
0 -
Cure-ious- yes- I’m intrigued. Will you have copies of all the lectures? I hope my MO goes to them. Maybe they will address the poor screening methods which lead to mostly stage III and bilateral disease at diagnosis. Or information on the scans that may be most effective for following treatment effectiveness. Although they didn’t have very many people in the Palbo studies with ILC their time to progression was much shorter than IDC - so perhaps new data on treatment as well.
Hooeful
0 -
Catching up on a few posts.
Amarantha, responding to your question about telling a friend about your diagnosis. It's such a hard thing to do, and timing is always tough. I ran into a friend at the nail salon, and since we don't see each other often, told her there. The poor nail technicians couldn't understand why two of their customers were balling. It sounds like your friend is kind and compassionate, so I think you made the proper choice. That's the extra burden we carry with this disease, seeing friends faces crumble with the news.
Metster, my GI doctor recommended that I brush with baking soda years ago as mint can irritate the gerd I was having. But I have sensitive teeth and baking soda did nothing for that. So I developed a plan to brush in the morning with Sensodyne Pro and in the evening with baking soda. My dentist loves it, and it helps now with mouth sores. I add salt water swishes when they're really bad. Good luck.
Pat, doing the Snoopy dance for you. So, so glad!1
Txgatata, saving a dance for you. This good news lifts my spirits for the weekend!
0 -
I posted on another thread but wanted to let you ladies know that my ct scan today is stable...getting ready to start cycle 33.
0 -
Wow, Lynnwood! Heading into year three on Ibrance (presumably taken with femara or faslodex?)!!!! You must have started on it just after it got FDA approval! I am headed for cycle 27 and the next full set of scans, so your post today just give me some palpable hope! I'm just average ER-positivity, and PR-negative, so I was skeptical that I'd last even this long on this regimen!
0 -
Lynwood, I am with Cure-ious in that I am impressed and encouraged by your cycle 33. I am on cycle 19 and was getting nervous to approach the 24 cycle mark. You give me hope! Yay for more good news!
0 -
so happy for your news Pa
0 -
Hi everyone! Sorry Holidays and appointments have kept me super crazy busy. Just caught up! Love all the convos. Hope everyone had a great thanksgiving.
- had my first bone scan last week. It went really well. Also had a ct that day.
-Results of bone scan was that some of my bones where tumors had bored holes in me (8th rib and femur) is healing. My tumors in my back have no change and a little shrinkage. This is a month out from rads and my oncologist she thinks that the next bone scan in feb will show more result from the rads and ibrance.
-Ct looked fine nothing special there.
-had labs done and they went well and I am on my second round of Ibrance.
-Getting ready for this surgery (outpatient) on Tuesday where they are putting my port in and taking out my ovaries and fallopian tubes.
-Did get mouth sores last round and getting them again but at least I am trying to get them under control.
Question: Did or has anyone gained weight from the Ibrance? I gained weight before the holidays but I lost some cause I had a little allergy issue.
I am doing well. My fiance and I decided to move downstairs in the house (I stay with my dad) mainly because the guest room was starting to feel cramped. We finished part of the basement two years ago and made it into a little apartment style. It has a lot more room and we can store things better here. Plus have space for when we just want me time. I did get to meet the Pioneer Woman Ree Drummond Thursday and she signed my new cookbook of her's and I got a picture taken with her. She is so nice and my future mother-in-law had told her about me and she hugged me and told me she would be praying for me and to be strong. I was so happy. This weekend going to try and finish moving since I got sick after thanksgiving and since I won't be able to lift for about 4 weeks. Appointments are getting few now thank goodness. Been dealing with long term disability through work which has been a pain.
To all the newbies welcome! I am a newbie also and these ladies are the best!
Pat:I am originally from Birmingham myself so I get it! I live in TN but my west coast friends think I am a riot when they talk to me lol. Leapfrog: hang in there! I am glad you are taking time for yourself and gain some independence and work on you. He needs to understand that and I think he is realizing it now. Nonnahope: Glad everything so far is going well with switching treatments. Hope it stays that way for a while! I have not heard of any of the strange rules on how to handle your Ibrance but I stay hygienic through this and I still need to go get my pneumonia shot since I was told to get one after she gave me a flu shot last month. I also after many months got my permanent handicap place card! Finally took care of that. Well going to go for now sorry this is so long but I wanted to let you all know I am alive!
0 -
Maire...So far I'm doing fine on Taxol...thanks for asking. I had my 2nd infusion on Thursday. Very minimal side effects - so far I'm feeling pretty much my normal self. Since it is cumulative, I'm sure the side effects may increase..but, I'm trying to convince myself they won't. Hope your MRI yields good results!!
So happy to hear all the good news about Ibrance when I hop back on this board!! I still have some left in my pill box....any suggestions on how to dispose of it?
Hope
0 -
Hope, glad you're doing well so far. I would hold onto those extra pills. Who knows...your onc may ultimately find that he wants to circle back to Ibrance.
0 -
Lynwood: congratulations on starting cycle 33 with stable disease. That impressive.
It raises a question in my mind, about how long women on his thread have been on Ibrance. Please let us know, how long others have been on this treatment, if you feel like sharing.
In the PALOMA trials, 50% of the women had not progressed at the two year mark. However the admission criteria were much stricter than the way Ibrance is being used in clinical practice. The trial only included women who were initially diagnosed at Stage IV or were having Ibrance as their first treatment for a Stage IV if they had had an earlier diagnosis. Only post menopausal women whe were ER + PR + her -, were included. A lot of us on this thread including me wouldn’t have qualified for clinical trial. I had 22 months of treatment on Xeloda before I switched to Ibrance. Those of us who would not have qualified for the clinical trial are pioneers as there are no data on how we will respond to Ibrance.
I start cycle 6 on Tuesday. My three month CT scan showed a decrease in the size of the liver Mets and sclerotic bone lesions. This was better than I was hoping for as I knew that some women take several months before the drug seems to be effective. My oncologist is optimistic.
Husband: Pfizer and the pan Canadian Pricing Alliance have been in negotiations for a year to agree on a Canadian price for a Ibrance. There is a complete blackout of information about the progress or lack there of of these negotiations. Given other agreements, it is unlikely that pCPA would accept 7,000.00/ month, given how many women would want to access this drug, and how,long they could be on treatment. Rethink Breast Cancer is very concerned about the lack of progress on this issue.
0 -
Cchilders, yes, I am gaining weight on Ibrance...about a pound a month. I eat carefully and try to walk every day, but it is rising anyway. I have started yoga to try to stop the weight gain, but I know it is important to eat to keep up my strength. I think it is also important to eat well with the meal you take the Ibrance as it works better with food. I will accept the weight gain to keep the good results.
0 -
Hobbes, I've just completed cycle 10 on ibrance and faslodex. So far, so good... stable at first three months' scan and some improvement shown at 6 months' scan. Scheduled for another scan in January. I was diagnosed stage IV 27 years after my initial treatment with chemo, and I wouldn't have qualified for the trial, either.
0 -
Hobbes,. I just finished 20 months. Scans show no progression.
0 -
cchilders, I've gained weight on Ibrance, but I think it's at least partially because I'm eating more, and exercising regularly, which gives me more of an appetite. When I was first diagnosed, this past Spring, my former oncologist told me that since the cancer had spread (to my back), there was nothing they could do, so pretty much told me to go home and wait it out. I was miserable, and couldn't eat, thinking about how much time I might have left. I lost eight pounds in two months. Well, my new (for obvious reasons) oncologist prescribed the Ibrance and letrozole, and told me she had no intention of letting me die. I felt hope, and felt good, then started eating a good breakfast every day so I could take my pills. I also starting the exercise bike, which made me hungry for a good, balanced, lunch every day. Then, since I still feel so good, my husband and I go out to eat, for dinner, a lot. I've gained all eight pounds back, plus one more, since Aug first!
My doctor tells me she doesn't care what the scale says, as long as I feel good, and my numbers are good (sugar and cholesterol), which they are.
0 -
Intothelight and Ciaci that is what I thought was it was the meds because I lost a lot during radiation because of my esophagus giving me fits. I gained some back after rads and it healed but I have noticed it going up a little more. Yeah I am embracing it right now cause I am about to have another surgery on tuesday and may lose some weight again. We shall see.
0 -
Hi Hobbes. Starting cycle 13 on Ibrance 100/Letrozole, currently NEAD. Stage IV diagnosed Oct 2016 with AC. (original was DCIS in both 2006 and 2007. ) I wouldn't have qualified for trial either.
0 -
thanks for he replies hopefully others will share too
Jo
0 -
Ciaci, I'm horrified that your former oncologist was ready to throw you to the wolves, sadly I can believe it. Arrgh. I hope this person loses their license !!
0 -
Amarantha,
I think friends good friends would rather know, I had an experience with my adult children... they already knew.... or so I thought.. perhaps they didn't hear me the first time I told them.. or I softened the blow a little too much. I just don't like to be treated differently after people know.. That's why I love to chat here... you all know not to do that.. it is... what it is...
Pat and Tx.. whoo hoo... so so happy
Hobbes.. starting cycle 3 in 5 days Lynwood.. thanks so much for sharing.. love the good news.. makes me smile
0 -
My wife's insurance company is paying Phfizer Canada, 90% of $7140.00 Canadian for each cycle of the drug. That is the deal they Pfhizer and the insurer worked out. We had to get in before the closure of the compassionate grounds access.
0 -
Hobbes,
Just started round 27 with Ibrance 75 and Letrozole. Dosing is 2 weeks on and 2 weeks off due to low counts. It really reduced the crash I got during week 3! Stable in most recent scans. ILC de novo mets to bone ER/PR+ HER-.
I feel decent. If Inexercise it helps reduce fatigue. Some neutropenia that gets worse and them improves on the off weeks.
0 -
Wow, I think I’ve been on Ibrance for 16 cycles. That went fast!
On the FB Ibrance Group someone reported this week having been on 49 cycles
0 -
Has it been around that long
0
