Ibrance (Palbociclib)
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Cure-ious.... amen to immunotherapy. I've been saying all along I think this is the ticket. My oncologist feels the same way. We just have to figure out how it work with BC!!!! I know they're in the trenches working on it. But in the meantime, several good drugs coming out.... I do feel the stats are changing for us. Still praying for a CURE.
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Seagan - Welcome. People jump into this thread all along the way--you are most welcome. I too had very high markers (CA 27-29) starting out. They were close to 1100 at diagnosis. Last was 120. You've had a fantastic drop in markers in a very short time! I would fully expect that will show an improved scan. Wishing you well!
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Seagan - I just wanted to drop in to let you know about a rare side effect of Zometa, it's called ONJ and it's necrosis of the jaw, usually oncologists recommend to stop getting Zometa before undergoing any major dental work. It is a serious se so I would consult with my oncologist and my dentist if the pain in the tooth area doesn't clear up within a reasonable time. I too started Ibrance with Faslodex this year but I still come here to reap from everybody's wisdom.
Aurora
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Seagan, I got a crown replaced and two weeks later started Ibrance and got an excruciating toothache for one day, then it disappeared. Very weird. Stephanie, you make some great point about trials and whether to jump in or not. Two things I never gave much thought to, danger in 1st phase and excess of imaging. eelder, you always cheer me up with your optimism. More good drugs, immunotherapy and yes! a cure! Z, I too feel I am losing muscle mass and know it is because I am back at work and don't make the time after that for fitness. I did ask for and got a standing station at work which is helping a lot, but still need to get out and MOVE! Claire, what a wonderful holiday you have coming again. You are very smart ( and lucky) to get in as much traveling as you can. We have our house up for sale now but the market is slowing down so it is not looking great for a Fall sale. But it sure would make my life easier and more manageable. Plus we would have more travel bucks!
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Hi Everyone,
My life has been a blur the last 12 days. My nearly 81 yr old dad has esophageal cancer and had an esophagectomy 12 days ago. The surgery went well and the pathology came back indicating that they got all the cancer (he had chemo and rads prior to the surgery). He developed a complication post surgery that required additional treatment and today another procedure to dilate his pylorus. That procedure went well but we won't know for sure if he is out of the woods until he is able to ingest liquids tomorrow. He was only supposed to be in the hospital for 10 days and tomorrow will make 13. I'm staying at my brother's home which is closer to the hospital that my dad is in than where I live and I'm taking my mom to see him every day. Too many things going on with family and doctors and hospital staff to even begin to properly describe what it's been like for the last 12 days. It takes a lot of energy and focus to advocate for your loved one (hats off to Momallthetime). I do my research and talk to the doctors and nurses and keep family apprised of all aspects of the situation. My dad suffered terribly from ICU Delirium and it was very difficult on my mom to see him like that. He's much better now. I miss my DH and he misses me. I'm so behind at work and trying to stay on top of it by working remotely around the hours I'm at the hospital. I check in with BCO everyday and read the ibrance and bone mets posts. It seems like a lot of new people have joined (which makes me sad) and these are very active threads to begin with. It is impossible for me to keep up. Everyone here is in my thoughts on a daily basis.
Sooooo even with all that has been happening I still had to take care of myself and it was time for scans again (treat, scan, repeat). I had my ct scans and bone scan last Friday and the results are back and I am still stable!!! No progression. YAY!!!!! I am starting cycle 9 tomorrow. I have tolerated this protocol pretty well I think. I was on Tamoxifen for 18 months prior to this and that was pretty much a walk in the park. This protocol has its share of side effects but they aren't debilitating (I'm tired but not fatigued, hair has thinned but only noticeable to me, I'm slightly anemic, my nails split, I get rashes and dry skin, I bruise easily, my gums are sensitive and bleed sometimes, I get hot flashes just to name a few). For the most part I live a pretty normal life. I can handle these SEs as long as they keep cancer at bay. So far so good.
So time for bed. Tomorrow is another day at the hospital with Dad. I'm hoping he has turned a corner and his recovery can really start now.
Sorry for rambling on.
Cathy
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Hello Cathy and whew! that's a lot to deal with! Yipee! for your stable status and praying for your dad's recovery. Sending hugs and strength vibes.
Aurora
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Cathy! Wonderful news about the stability. Thrilled for you! Sending positive thoughts and prayers for your dad.
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Hi Seagan - Most of us started Ibrance in 2016. We're a friendly bunch. We just like to talk about Ibrance. We welcome any informed and thoughtful discussion with a constructive intent. I take that for granted until until I visit other forums. This is an exceptional group.
I just went through the tooth extraction from hell with an infection and inflammation and pain that lasted way longer than normal. You are doing pretty well. All kinds of weird things can happen on this protocol including slow healing and increased pain; however, don't necessarily blame the Ibrance. Our bodies need estrogen for many basic functions and our estrogen pathways are being messed with systemically.
Eelder - I take 250-500mg of ALA orally in a lymposomaly encapsulated form 5-6 times per week. The relevant number with any drug is absorption into the blood stream and then the subsequent absorption into the cells. There are at least two barriers an oral drug has to get through: intestines to blood stream, blood stream into cells. Drugs that are encapsulated in lipids pass through key membranes better. Liposomal encapsulation is being tested with a lot prescription drugs and even chemo therapy in the hopes they can replace IV's.
A regular ALA capsule might see 10% absorption while this liposomally encapsulated ALA may be 90-100% absorbed into the blood stream. In addition, there is higher absorption into the cells themselves. My point is that, although I am nominally taking less ALA than you, I am trying to achieve 5 to 10 times the dose that you are taking. My goal is to simulate an IV which is 600mg into the blood stream. I'd like to get IV level doses, but I can't afford either the time or the $$. Unfortunately ALA is highly transient in the blood stream with a half life of like 30 minutes so it can't be measured.
I am curious how your oncologist explains the disappearing tumors on this ibrance/letrozol protocol. I've had a couple of conversations offline with people about this but everyone seems to be guessing.
Artist - Good luck selling the house. We sold our 3000 foot monster in August. Now we live in a house half the size and we have twice the monthly expendable cash. It was a huge amount of work but the pay off in stress reduction is enormous. I need a house that takes care of itself. I've battling one weird health/SE thing after another this summer. We have an awesome landlord who comes over and takes care of every little thing. I hope you get there soon. It's worth the trouble. In the trade off between exercise and work that is satisfying, work is a good choice. Those kids need you. Every time I see our school administrator I think of you. We are so grateful to her...
Cathy - Awesome scans! Thank you for taking the time to let us know. Looking forward to hearing about your father's speedy recovery. I don't know how people work on this protocol and keep themselves and a family together. Inspiring.
Praying for everyone tonight.
>Z<
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Cathy, congratulations on your good scan! My you are going through so much right now! Prayers for you and your family! Don't forget to take care of yourself! Hope things settle down for you soon!
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Thank you Z. You're always so informative!!! I appreciate that so much. I'm going to need to talk to my doc about possibly switching the type of ALA I take. You feel this is a critical piece of your protocol, correct? I feel it's critical too. I just need to make sure it's being absorbed.... otherwise.... it's pointless.
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Eelder - I am interested in what your doctors says. Most doctors are dismissive of ALA as a cancer treatment. I just happen to leave near the doctor who developed ALA as a treatment for chronic diseases including cancer. My friend dragged me to see him. I've met him and the people he treats. He's a medical doctor and a straight shooter. And his patients do respond. The only problem is getting regular IV's. They are expensive and take a lot of time. He recommends a 600mg IV once or twice a week forever. That is $15K+ per year plus hours and hours in a doctors office. However, hoping the ALA product I mentioned simulates the IV. So far so good. He has many patients who are also on Ibrance and doing well. He would have me on low dose naltrexone as well, but I could not tolerate it. May try again in the future.
>Z<
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It's been a pleasure getting to know you ladies; however, my mom has failed Ibrance. On to Xeloda...
Thank you for listening!
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Z.... what exactly does the ALA do? I don't think I ever asked.
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Interesting comments about muscle mass, Zarovka and Artist. I think it quite possible that letrozole and/or Ibrance are making it hard for me to build muscle. I walk, yoga, dance, and exercise; yet the physical therapists say I am very weak, and the nutritionist says I have way too much fat vs. muscle, even though my BMI is low. It seems like I have been able to strengthen, but the progress is very slow. Granted, my exercise program is not intense, but really, why should I be so weak? Have any of you been able to build strength in spite of these drugs? Have your doctors had anything to say about this issue?
AnimalCrackers/Cathy, it sounds so exhausting. Your family is lucky to have you there. Please don't let yourself get too run down. Delegate whatever you can. Best get well wishes for your dad. And I'm very glad to hear your good scan results.I know that feeling of not keeping up with the threads even though you want to. Sometimes I just jump back in on the latest page and take it from there.
Cafelvr, I'm sure we'll see you around. Best to your mom.
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NineTwelve, do the two years since your diagnosis seem like a long time or a short time? It has been about two years for me, too, since mets diagnosis. Hey you guys, I'm on my 19th Ibrance + letrozole cycle!
Carol/Maltese, thanks for answering my questions. It sounds like you are on a good path. I still have hope that you will begin to feel less tired. I know tamoxifen did not make me as tired as my current drugs, and I think of faslodex as being more similar to tamoxifen in the way it works (but more effective).
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Linda - I'm sorry your mom has to make a change. Sending warm wishes and a hug your way. Please pass on to her!
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Hi Zarovka, Artist and ShetlandPony,
Advanced cancer itself sucks muscle and vital energy, even if one is stable or has a very small volume of disease.
The body's metabolism is altered by the cancer. It's not just a blob of unwanted tissue in an unwanted place, but rather a metabolic process that can switch the body into consuming itself in a process called cachexia.
From wikipedia cachexia entry: "In addition to increasing morbidity and mortality, aggravating the side effects of chemotherapy, and reducing quality of life, cachexia is considered the immediate cause of death of a large proportion of cancer patients, ranging from 22% to 40% of the patients.
"Symptoms of cancer cachexia include progressive weight loss and depletion of host reserves of adipose tissue and skeletal muscle."
We get skinny not only from loss of appetite, but from these metabolic changes.
Cachexia is worth investigating long before it becomes a medical emergency."About 50% of all cancer patients suffer from cachexia."
I hope others will explore this possibility as preventive steps can be taken anywhere along the path.
healing regards, all, Stephanie
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I lost a lot of weight (intentional... worked hard at it) the first 3 months after being diagnosed. Since then I haven't lost a single pound. I still eat REALLY well and exercise daily. Yet, I am not losing weight. Could being depleted of estrogen be affecting my weight loss efforts? Someone told me this could be the cause.....
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Cathy, So sorry to hear about your father's cancer. I hope the outlook for him is good and he is able to recover soon. I'm sure you have been too busy at this difficult time to celebrate your own good news, but I am happy to hear you are stable! Thank you for taking time to share it with us. Sounds like everything is pretty overwhelming right now, so breathe deep and just take it day by day. Holding you and your family close in thought and hoping life gets back to normal soon.
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Linda - please let us know how your Mom does on Xeloda.
Eelder - ALA may have multiple modes of action. It's a powerful anti-oxidant and can amplify the effects of other anti-oxidants. It reacts with other anti-oxidants and causes them to regenerate and continue doing their thing. That is the reason most people take it. However, my CO believes that it interferes with anaerobic respiration to cause apoptosis (cell death). There is a long list of other things ALA does to cancer in a mouse or a dish that it might do in humans. The problem with therapies like ALA is that they can't be patented because the compounds are in the public domain. No one can ever afford to do the clinical trials because they will never recover the cost. I follow this regime based on my CO's decades of experience with ALA in his clinical practice.
Stephanie - I assumed the inability to build muscle was low estrogen. It freaks me out a bit that it is could be the cancer but doesn't surprise me. I think that is my underlying fear. I have no visible metastasis but obviously I still have cancer. In my case I am not losing weight. I am not thin but I am getting less muscle and more fat. I have a good appetite for the right things, I am hungry the right amount at the right time. The only problem is that I exercise, but I still get weaker. It's noticeable and therefore happening pretty fast, so I am just wondering where this is going. Rule number one for me is to maintain my overall wellbeing. I don't see how I am going to do this if I don't address the muscle deterioration.
Shetland Pony - I will ask my onc about the wasting of muscle when I see her in a couple of weeks.. In the meantime, I am going to assume it is estrogen deprivation and try acupuncture to try to balance the hormone situation somehow. My onc already suggested acupuncture for my hot flashes, which are getting frequent and severe. I just haven't gotten around to it because I am afraid of needles.
This week I made some progress. I went back and had lymphatic drainage done after not going for a while and I also had a some really good body work done. I feel some improvement in energy levels and the fog has lifted slightly.
In any case, it seems to me that maintaining muscle is a big part of overall wellness and wellness is a big part of beating cancer, so I'll keep putting it out there to get your experiences and input. It is something I need to figure out if this is about the long haul.
>Z<
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My first dose of Ibrance arrived today in a bag marked, "chemotherapy." Is Ibrance chemo? I didn't think it was. Color me confused!
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Well, I finally got my PET/CT on Monday, and saw the onc yesterday. I was nervous, but he came in and said, "Bottom line, you're stable". I think he's beginning to learn just how Ibrance works, and asked me how I felt about it and I told him I was very happy to be stable. He went on to say that there are other treatments, but they all have se's. I opted to stay on Ibrance and hope it continues to keep me stable for a long, long time.
There are so many knowledgeable women on this thread, and I have learned so much from all of you. Thanks for sharing your stories!
Diane
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I know hardly anything about cachexia, but I will take your suggestion and learn more about it, Stephanie. I wouldn't think it would happen to someone NEAD for almost two years. Could it? But, hmm, before the mets were diagnosed, I can conceive of the cancer harming my muscles and doing other bad things. I felt really good for a long time after treatment for stage 1, and then I started feeling tired again, and I think that was the first sign that it was back. I've always thought the tiredness was from my body trying to fight the cancer; I never thought about metabolic changes. Liver pain eventually got me into the process of diagnosis, and you know what? My weight was down at that time. I asked my onc if I had lost weight because of worry or because of cancer, and she said she wasn't sure. Hmm.
Zarovka, yes, my situation is similar. Not losing weight (and not trying to), normal appetite, and exercising enough that I would not expect less muscle and more fat. Good news -- I did get my back stronger and my posture better with particular exercises, and I recently showed some improvement in leg strength after focused exercises. So even though the improvement has been slow, at least there is improvement. But the reason I did those exercises was because of injuries! Why the injuries? Probably estrogen deprivation? Menopause followed the stage iv diagnosis so closely (thanks to taxol) that I have no baseline for comparison. My plan is to get enough protein and electrolytes (as advised by the oncology nutritionist), pace myself, and not give up.
Eelder, I think that estrogen deprivation does make it hard to lose weight. Isn't it usual for women to gain once they reach menopause? I am now ten pounds above what was always my normal weight, which is not surprising considering I got punted into menopause by chemo and am now on letrozole. Same as you, continuing good eating and exercise. My onc usually blames my SEs and problems on letrozole rather than Ibrance.
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Larkin, technically Ibrance is a targeted therapy, not chemo. I think the pharmacy just doesn't have a label that says, "Caution--it's not actually chemo but it's a pretty strong drug so be careful." When I was first starting it, I said to my onc, "So I'm reading the list of side effects here. Um, how is this not chemo?" And she said, "I know, I think of it as chemo." But actually it generally isn't as harsh as chemo. Earlier in this thread there is a long discussion of this question.
DC197/Diane, happy for you--stable is good!
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Thanks Shet, that makes sense...id sure like to see your label on the bag though! Lol!
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Lots of new posts here, wow. Welcome, to the new people. Those moving to other treatments, wishing you success on the next one, and I hope you keep coming back to give updates and/or advice and just to chat.
My two years of metastatic breast cancer are also the only two years of cancer that I've had. You know those water slides that start off sorta slow then WHEEE, you are speeding down hill with a face full of water. (That's what it's like to be Stage IV out of the gate. You imagine a literal gate.) It seems like a long time, but also it seems like it went fast. I am living more mindfully now, and I am grateful for the times when my symptoms are quiet. Many of the cancer related changes I've had are a kind of exaggerated mirror of age-related changes. I just feel that I have had an accelerated aging. Physically and mentally - as I face the inevitability of my own death. So far, my symptoms have been pretty easy. I feel lucky in that sense.
Shetland - are you on any medications other than the ones in your profile? Some cholesterol lowering drugs can cause muscle weakness. We took my mom off the statins her cardiologist had her on. (Not shown to be effective in women my mother's age. They are only proven to reduce risk of heart attacks in women who have already had a heart attack.)
Diane, Cathy - congratulations on the good results! So happy for you both. As for the family thing - I feel ya. My brother and I are dealing with three disabled adults (both parents and a sister), and we have cousins coming to visit from out of state. Six of them. (What the pho? Who does that?) It was all arranged before I could say, "Wait, we are not in a good place to have visitors."
The discussion on ALA was really interesting, too. I need more supplements like I need a hole in my head. (Then again trepanning cured a lot of our ancestors, in the Good Old Neolithic Era). But this one sounds promising. I will look into it.
Time to get ready for work. Zarovka, you said you don't know how people can work with cancer. I need the structure, the people, and the sense of purpose (not to mention the money and the benefits). Sometimes, though, I'd gladly chuck 'em all out the window (if it opened).
Other times, I wouldn't bother opening that window first.
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re. cachexia - It's good to have a general sense of what it is if you're experiencing those symptoms, but talk with your own oncologist about your own risk and the possibility of cachexia being a factor in your inability to gain/maintain muscles.
Reading about cachexia online is like reading about MBC online - what might hold true for a large group (I've a love-hate relationship with statistics), really applies very little to the individual.
Ask me, I'm a statistical outlier, but I've used many studies and statistics to plot a path through this thicket - one often painful, scratchy, uncertain step at a time. Then two steps back and it's the MBC dance.
We all want to be the outlier on the wanted end of the survival scale, but statistically speaking, someone's gonna be the outlier on the unwanted end.
I've a bad case of cachexia, but have defied odds on outliving that survival curve too.
It's weird living simultaneously at the wanted and unwanted ends of the cachexia scale!
With loving compassion for all, Stephanie
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Z- my mets was found in a lymph node in my lung. This has gone down almost completely with letrozole and ibrance combo. I am also curious why this is happening if the TX protocol only stops the cancer from progressing. I also am not taking any additional supplements or alternative treatments.
I had a fever over the past weekend and onc told me to stop the ibrance for a week. I got better for a day and then felt sick again. Now have an ear infection and a very large (according to doc) cold sore on lower gum in back of mouth. Onc has now said to stay off ibrance until completely well, including cold sore gone.
Today is my one year anniversary since diagnosis of Mets. I have not mentioned this to anyone. I don't know, just don't feel that anyone who is not mets could appreciate the significance of this day. I am also at a place currently that I don't want to deal with this diagnosis. It is like I want to go into some kind of denial about it. Maybe just tired of all the emotions over the past year.
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(((singlemom)))
Not celebrating your cancerversary, but recognize this as a significant date in your life.
This is a hard diagnosis and prognosis to face.
Please rest, recuperate and be kind with yourself.
another warm, healing hug, Stephanie
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singlemom- feel for you and with you on your dx anniversary. I'm approaching 3 years. Most of the time I'm ok. And everyone tells me how positive and strong I am. But, some days I just don't want to smile and be strong. I want to be sad and admit that I'm oh so tired of THINKING and DEALING WITH this ALL the time. I certainly have my pity parties. But, I try to pull out the happy moments of each day. I look here for those who do understand. (Hugs)
PS I'm no longer on Ibrance, but lurk here because of all the great people and information.
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