Ibrance (Palbociclib)
Comments
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airlinegal- do you mean an endoscopy
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airlinelegal, I'm so happy about your scans and tumor markers! I have a friend with MBC that is HER2+. After treatment all her tumors resolved and one place on her lungs keeps lighting up on the PET. They are convinced that this is just a persistent infection. I pray that is true for you.
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Great news on continued stability Airlinegal. Let's hope the spot is just an infection of some sort.
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Here's a link to a simple explanation of the kind of Physical Therapy I had that stopped my pain after 13 sessions over a two month period. I hope you guys find it helpful.
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Airlinegal, you may be talking about a bronchoscopy. I had one recently because of a recurrent cough. He found nothing at all amiss. It really wasn't bad at all. They anesthetize you in a manner similar to a colonoscopy, so you really aren't aware of what they're doing. Easy.
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I'm about to finish 15 cycles on Ibrance. Only the first two were 125 mg. The rest have been 75 mg. My gastrointestinal system reacts badly to all chemo. Only made it through 2 rounds of TCH at first diagnosis (thus stage IV). I'd like to be here more but lymphedema in my left arm/hand impairs my typing. Just wanted to add to the positive reports on lower doses of Ibrance. I told my MO I wanted to try 75 mg and he said ok. He's used to me telling him what to do.
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Pat, Interesting that you posted the link. I saw my PT yesterday and he would like to start myofascial therapy but is getting my neurosurgeon and MO's ok, since I have had thoracic spinal fusion and lumbar herniated/bulging discs etc. and on and on....... I'm hopeful it will help with some of the musculoskeletal pain I have.
Just finished cycle 2 and very happy to have a week off. Geeez the fatigue and mouth sores........
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Lindalou, I'm going to be praying this causes amazing changes for you as it did for me. I went from thinking I was going to need a cane to walking 4 miles every other day. I wish I had kept that up but am slowly getting back to 2 miles.....baby steps. (That's about the fatigue...not the pain!) I'm so sorry about the fatigue. Are you able to exercise at all? Those mouth sores were plenty annoying at the beginning but yogurt really did help. If you get the sores in your nose, just rubbing some face cream seems to cure those. I think mine came from dryness. I'm so dry I could crinkle up and blow away!!
My Physical Therapist also recommended this tool to help with myofascial release at home:
https://www.amazon.com/TheraBand-Massager-Portable...=sr_1_2?ie=UTF8&qid=1497399704&sr=8-2-spons&keywords=massage+roller&psc=1
She also had me lie on tennis balls, pressing the "hot spots" as long as I could stand it. The pressure can sometimes make you cry but I found that the longer I could stand it, the faster I got better. I've been "cured" of that discomfort since January!
For those of you getting Faslodex shots: If you get hard lumps on your bottom, you might want to try a roller like this (or your rolling pin). It seems like it would help those to resolve. Just a thought!
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Airlinegal, great news on the results of your scan. I will pray your next test goes easy.
I have been on 125mg Ibrance for 13 cycles now and tolerate it fairly well with good results (resolution of all mets) so there is no talk of reducing my dose. I don't want to upset what is working for me. I just thought I would say this for others who are also on 125mg. My best advice is communicate with your MO. I am in this for the best possible outcome.
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Jaycee,
Can you tell me about your gastrointestinal difficulties at 125 mg? I left Taxotere about two months ago and am on my second cycle of Ibrance. I am having a terrible time eating but cannot really find researched information on what I am going through.
I have almost zero appetite but the worst part is that when I go to eat I can only eat a few bites. I end up having to drink liquids in order to get the food down. Can't say that I am having trouble with the swallowing mechanism, just can't get the food prepped to swallow. I also have a lot of air that ends up blocking my stomach causing nausea and vomiting. It is the most disheartening thing I have experienced since diagnosis in 2007.....and there have been a couple of doozy issues but this eating thing, it is getting me down and scaring me.
If this does not seem like what you had Jaycee can anyone else relate to anything I am saying about my eating problems? If so, were you able to overcome it? I feel fine other than this but am losing too much weight. Trying to figure out if it is 12 rounds of Taxotere, Ibrance or stomach mets.......
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Emmapeel1, I had forgotten about how difficult it was to make myself eat at first. I lost 15 pounds pretty quickly after getting on Ibrance/Arimidex. I remember the dietician at my onc's office scheduled a visit to talk about my fast weight loss. It kind of made me laugh because I knew taking an AI was actually going to make me gain weight as it had before! And now it is!
But in the beginning months I had zero appetite and had to force myself to eat just a few bites. Mashed potatoes were about the only thing that sounded good. And Welch's purple grape juice. I started buying fresh juices with lots of veggies at the health food store. I decided to make my goal just getting something healthy into my body a little bit at a time. You could set a goal of getting 100 calories in each hour. Facing a plate of food just turns your stomach, I know.
I'm going to be over here praying that you take this a step at a time and get comfortable again. We've all learned that Ibrance is a fickle girl and she doesn't stick with one side effect for too long....except fatigue. She owns that!
Love to you, Emma!
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Finally got up the nerve to go to the eye doctor. She didn't see any signs of cancer. I do have chronic dry eye again. Every time she put drops in they would evaporate instantly. I had this problem many years ago and used Restasis. When I first used it it was around $200 for a 30 day supply of the drops. Now it is $465 ! I thought the longer a drug was out the price went down.
Our youngest son is graduating from high school tonight. Praise God ! I didn't think I would be alive to see this day.
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Dianarose~ Congratulations to you and your family. That is so wonderful. Take in every second, and know that we are all there with you in spirit and prayers. Proud mama time!! Big huge hugs!!! ~M~ Youngest son wow!! You did it Mom!!
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Well done, Dianarose! Take a deep breath...you made it for your precious son, and now you can move on to your next big target date! You'll make that one, too, and the next....Congratulations to your "baby"!
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Emma,
My GI issues with TCH and 125 mg Ibrance were very intense abdominal pain and very severe diarrhea. For the entire month of August, 2014, I sat on the toilet and cried. As soon as something similar happened with Ibrance, I stopped and called MO's office. They, of course, wanted me to keep taking it. I lean toward quality of life and stopped. When I saw my MO a few weeks later, we switched to 75 mg. I've been ok since then and have had clean Pet/CT's every three months. My gyn (my favorite and smartest doctor) told me it can take up to a YEAR to recover from Taxotere and similar drugs. I would blame your issue on Taxotere, not Ibrance. That's just my opinion. I'm guessing. Kind of like doctors do.
I think my sleeve (for lymphedema) is coming in the mail today. I can't wait. I'm going to put it on and go gloveless and see if my hand swells. My PT says I don't need to wear the glove if my hand doesn't swell too much. Then I will be able to type with both hands again. Woohoo!
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Dianarose....my husband has dry eyes and his eye dr told him to get an over-the-counter product. He gets it at Walgreens and the name is "Tears Naturale Free" by Alcon. It is for mild/moderate dry eye lubricate eye drops. Hope this helps. You get about 60 vials for $20.00. Also congratulations to you and your son. Fantastic!0
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Dianarose, I'm so happy for you and proud for you that you get to see your youngest graduate tonight. Before you know it, there will be grandchildren you're praying to see grow up! I pray that you feel good all day and enjoy the celebration. We celebrate with you!
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Thanks everyone. He is a great kid. He has had to deal with a mom with cancer since he was 5. When I had my mastectomy it was just he and I. Wasn't with DH yet. He was 12 and would drain and measure my drain tubes every day. I gave him a card yesterday with 2000.00 dollars. Thought he was going to faint. I had been saving for this day a long time. He kept saying thank you. Then I thought he was an imposter lol.
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Airlinegal- I need the Restasis so my eyes will start producing their own tears. I can use the drops you mentioned In between though. I will have to get some. Thank yo
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Dianarose, I had a sacrificing single mother like you and she has always been my hero. Because of her, I've always known I could do anything. Your boy will be the same way. Good for you! (And him.)
I wonder if your eye doctor would ask his drug rep for Restasis samples for you in light of what you're going through. It's sure worth a try if your insurance doesn't cover it. If you have a co-pay, you might consider applying to one of the co-pay relief foundations.
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I went to MO yesterday. It was uneventful, yay. She did tell me she was pleased that I have continued to do well on 125 Ibrance. I'm on my sixth cycle and my labs have consistently stayed high enough that I have not had to stop or alter dosage. I find that pretty amazing, too. Especially after reading all these posts about so many of you having to make changes.
I have no explanation as to why but I do feel fortunate. I don't have any SE, either, except for the fatigue. Sometimes it's all consuming but I do have totally normal days. It's all so random so not predictable. I wish there was a way to predict why there are multiple complications for so many but none for others. I'm glad that reducing the dose does not seem to affect its effectiveness.
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Omg Dianarose I'm going to cry!!! Wonderful Mother!!! Bless your entire family. Have a great day. Fantastic day for all!! Hugs ~M~
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This article is about the Kisqali trial but there's a paragraph I'd like us all to absorb since this drug is similar to Ibrance.
Take a look at the large percentage of people still responding at 26.4 months! The other interesting thing is how many were still responding on the placebo.
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I did another research study yesterday on some drug commercials in the works for a new drug coming out for metastatic breast cancer. One was with our friend Julie lol. Still in the cartoon form not real people yet. Was interesting. Got to give my input of what should be added and what should be taken out. My question was why are they wasting millions of dollars on these ads to begin with. It should be spent to educate the doctors and nurses so we are better informed. Or maybe bring the dam price down so people can afford it.
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Dianarose, the good news is that the price will come down because of the competition....I hope.
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The more people that know about this drug and its success, the more people will want to try the medicine and then they will make the money through the insurance companies. They price this medicine on a sliding scale anyway, which allows the company to offer help to people like us!! I saw the pricing sheets when I worked for the distribution pharmacy company before I got sick. So basically they can charge whatever they want , because of what Pat says there is no competition out there for this. Well the sister will be coming along soon through Novartis, Kisquali! This is an exciting medicine, my pallative care doctor told me yesterday they are having better than ever expected results!! They have a woman in their practice that's been on it for over 65 months and she's been battling MBC since 1984, she told me, you're not going anywhere anytime soon!! I love her! Now why can't my onc just tell me that!? She said because they are the thinkers and they just want to see consistent calm results. They don't want to give false hope, but they are secretly thrilled and hopeful for this medicine. I am thrilled I have a chance to take it. I am still on 125mgs, sore mouth, is my biggest issue along with the dreaded signature fatigue!! But other than that I feel great. Thank goodness!! I want nothing more than that for us all. Truly!! ~M ~
Lol at good ole Julie. I just saw that today and I still have to shake my head. I cannot bend down like that. lol I would be a turtle on its shell!! Ugh! But go Julie! I hope there is people out there that truly feel that great on ibrance!!
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Micmel- the one commercial I was asked about was called the New Normal. lol wonder where they got that phrase from. Well everything she was doing was like normal not our new normal. Made sure I expressed that. The second commercial was more realistic without old Julie.
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Dianarose, we had a slogan in our support center: "Normal is just a setting on your dryer". So true.
Micmel, I've known lots of oncologists in my two decades with the support center and the best ones know that hope is the most important thing they have to offer. My favorite (my oncologist now) said he believed mutual support emphasizing hope did more to heal cancer than all the drugs in his arsenal. I'm convinced that there is no such thing as "false hope". It's all real and invaluable on this journey.
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Micmel....65 months is so encouraging! I told my oncologist I'm looking to live about 12 more years and he said he thought that was very reasonable but he has a patient with MBC who is 18 years out.....so I've broadened my horizons! I'm already way too old to die young so it's all good!
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About Julia and the commercial: I traveled the country for a while making speeches for a pharmaceutical company (through their PR firm). The focus of my talk was finding joy and laughter on the journey. Another speaker would tell of her experience with their drug. We rolled along for many months with great success and then the lawyers got involved. They wanted everything I was going to say written out for them and a series of Power Point slides to be shown. Once they learned the focus was laughter and having fun while on treatment, they killed the project, saying smiles and laughter were unrealistic! This is why I find Julie so interesting. Obviously, the lawyers have lost control! I really don't mind them fostering the perception that someone can work and walk the dog and have fun. Many of you do all of that and some of us do some of it. Some of you raise small children or grandchildren and do all that entails. I'm really in awe of that!
I'm convinced we can all do what we need to do to survive and thrive until that elusive no-side-effects cure comes along!
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