Ibrance (Palbociclib)
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Dee- good job getting after this sore throat business. Being sick is a lot of work ... get well!
>Z<
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GG~ thanks for the kind words. It's been a pretty crappie day, sometimes I just want to hide in a corner . I think having cancer has changed so many things with me, I am not even sure all of the days I even know who I'm supposed to be anymore. A mom who still has almost grown children who aren't close to their father and I am all they have, or am I a daughter filled with fear that my mother may lose her legs, or even worse pass away and I won't be able to see her again, or am I a wife, who really is exhausted and mentally drained in every way possible and wouldn't even ever care if ever I had sex again. Or am I a cancer patient? It just seems like after a while of having cancer for a prolonged period of time, and you start to look semi normal anyway , that they kinda forget your still sick. Just because I have cancer doesn't mean the mom in me stops. It's been a rough year. Can I go back ? Anyone ? Anyone ? Sending prayers. ~M~. Glad to hear carol. Is improving. Hope patty is also getting stronger. Gracie. I'm so sorry about your fall. I think your pretty tough!! GG~ I hope your throat is feeling better. You're all always in my thoughts. ~M~
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So I went to my pcp about the sinus problems. She wants me to go to a ENT. They might want to do a procedure where they scrape, them out. What? NO so I am going to use lots of mucinex, saline spray and steam treatments. Hot steam with a towel over my face. Old school, but I can do that. The dizzy spells were probably from the blocked sinuses.
I've been reading a little more about Y 90. I've been on the local treatment thread, too. I was so gung ho since Wednesday and now I'm getting a little scared. Usually the more I know, the better I can handle whatever it is. Of course there have to be some side effects with putting "zillion" tiny beads of ytthium in my body. Right? It sounds sorta sci-fi. The doc lightly brushed over the part where after the procedure they do a nuclear scan to see if any of the beads escaped into a body part where they are not supposed to......like my stomach or intestines, YIKES. What do they do if it did? Don't know. So,, the doubts are crawling in. I have four more days to come to peace with this. Help, please.
Yes, fighting these bad guys does take away from what I want to do. I really want to be watching my grandson play T ball. I know I'm doing all this so that I will have a chance to watch him play baseball. I'm fighting for more time.
"
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grannax- in a nutshell I would do it if it were indicated for my condition. I have a medical phobia so I would probably need Valium. The idea of it is terrible. But it's become a somewhat routine procedure and the prospect of blasting all Mets from the liver is extremely hopeful. Could give you a lot of time.
My strategy with procedures, since discussing them literally causes me to pass out, is to get a lot of information about outcomes and recovery times and issues but I do not discuss the procedure itself.
I think you will find the recovery is sometimes tough but outcomes are good for this procedure.
Z
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Z I know you're right. Did you know that Y90 was done in the 80's in Australia? Then 2002 for US. So they've had a lot of time to practice. It seems like the best next thing for me to do. At this point it sure wouldn't seem right to not do it.
Thanks for encouragement.
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I'm happy to have found this thread. I've learned a lot reading these posts. Still trying to process that I have metastic breast cancer. So many things to work thru and consider. I've completed 2 rounds of ibrance and start the next round on Monday. Also starting 5 sessions of radiation on Tuesday. Thank you for the information
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So, started Arimidex on Thursday but I'm now waiting to hear from Pfizer regarding the Ibrance. They will take my extended health information and deal directly with the company providing it to work out the co-pay details. Then I understand they will ship the drugs to me directly. A few more hoops to jump through and then I can start.
Reading these posts are so helpful but it really hits home how little I know about managing all this. Several of you have mentioned insomnia. Is this from the Ibrance? I'm just used to the middle aged woman thing where I wake up in the middle of the night and try to solve all of the world's problems at 2:00 AM. Ha!
Hope you all have a good weekend free from SEs.
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Dee and Grannax,
when I was getting Taxotere/Cytoxan, I had such severe stuffed up sinuses that I could barely breath. One of the MOs from my clinic prescribed Nasocort spray(over the counter) and it saved me. Mine was an allergic reaction. The Nasocort takes several days to work and I stayed on it until I finished the T/C. I have only had minor nasal stuff with Ibrance. Don't know if your docs have suggested this. MJH
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In my case I don't think it is letrozol/ibrance.
The most likely cause of my insomnia is actually one on of my complementary meds ... low dose naltrexone. But we all have a lot on our minds even without cancer. Sleep is critical to healing cancer lack of sleep contributes to chronic inflammation, chronic inflammation is the environment in which cancer can grow.
Whatever the cause we must watch our sleep patterns and fix any issues that come up.
Z
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hi all,
feeling a little bit better today. MJH, no one suggested that, I will ask if it's allowed on the trial (so many things we take for granted are not) I did not get the antibiotic script filled, I think Thursday night was probably the worst as last night I actually got some sleep. I get allergic reactions to the weirdest things, they gave me benedryl when I was on chemo because I was allergic & then they discovered I was allergic to benedryl!
About the sleep thing, estrogen deprivation has a huge impact on sleep not to mention the drugs we are on, which almost everyone of them lists insomnia as a SE. When I changed from arimidex to femera I noticed a difference but also started Ibrance the same day. My PCP says I has more important things to worry about than getting hooked on sleeping pills & he said just take them, you need your sleep!
Husband is demanding that I come & help him pour footings for the gazebo that I wanted in the garden, so I must obey & stop visiting with all of you. (I am kidding about the demanding, but not about helping)
cheers, dee
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Ooh. A gazebo. I had such a lovely day in the garden today, although I must admit that now I am completely wiped. It is so fabulous to final see spring arrive in Victoria. Know we are typically spoiled with our West Coast weather but this year has been such a drag, particularly when you throw a stage IV diagnosis into the mix!
I'll keep an eye out for the insomnia. I didn't have this problem with Arimidex when I was on it before. I started with Femara but had to change as I was seriously bitchy. It wa like having PMS for 8 months. Gasp!
Cheers. Pat
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We are thinking of you all! MbMomof3, welcome, and so glad you found these wonderful people here!
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GG~ it's nice that you're spending time with hubby outside working on your home! I have been trying to spruce up mine. I spend so much time here I want to jazz it up , I have gotten new carpet,which changed the entire feeling of the house. Then a month later my dryer broke., boy are those things made of gold? Will it perform magic tricks? It has to do something amazing to cost that much money. Ick! Then two days later both of my children sat down on two different chairs and they both broke at the same time. Down they went on their cans!!! Funniest Home videos here we come! So this weekend hubby and I were off to find another dining room set. More expense. Wow things are expensive. Like holy moly! But at least it will be special to have everyone around the new set for Easter dinner, that's all that really matters. Rest well ladies. ~M~
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I have felt so good the past two days it scares me. Haven't felt this good in going on a year. Hopefully it's the Ibrance kicking my cancer to the curb
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DianeRose - Whatever it is, feeling good is the cornerstone of healing. Make the most of it!
>Z<
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Dianarose, it's good to hear you are feeling good. Sounds like you're off to a great start on Ibrance. You deserve it after what you've gone through. We all deserve to feel good for as long as we can in this battle.
Z, I'm wondering if you are noticing any less fatigue on the 100 mg of Ibrance yet. The hospital called me today to schedule my PET scan for next Wednesday, so now I have major scanxiety but I want it done. I want it over and I want the news to be good so I feel comfortable asking for the dose reduction of IBrance. I'm really tired of feeling tired. I'd like to feel good again as I haven't felt that for a long time.
Have a goodnight everyone and enjoy the good days.
Faith (in the future)
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Hello, Dancers! I must go back and read up on what's been happening with you. I had a check-up today and my oncologist was delighted to see my counts still holding their own after 6 months on Ibrance (I thought it was 7 but what do I know?!) He reminded me how much we have to celebrate with the great scan results after #3. We scheduled the next scans for the end of May.
I ran into the Kisqali rep (an old friend from my support center days) and he's quite excited about the recent FDA approval. He's been repping Afinitor and I'm sure constantly hearing about the rough side effects on patients has worn thin. If patients do as well on K as they do on Ibrance, his doctor luncheons will be more fun! I asked him about people taking his drug should Ibrance stop working and he said there's just no data but that will come. He did say that they have a co-pay card for people with insurance so the drug will not cost them anything.
For all of you having scans in the near future, I'm pulling for you, praying that those little pills are doing their work. It's so helpful for me to remember that I only have today so I don't get all caught up in worries about tomorrow. I have a little devotional book called "Jesus Calling" that helps me with that. I highly recommend it. Faith, I'm ready to hear about your dose reduction news coming soon!
Dianarose, you make us all happy with your feeling-good news. We celebrate with you! We'll all join GG under the gazebo and let Z lead us in some exercises! We'll wear "Y90 Rocks" t-shirts for Grannax! Our sinuses will go crazy from the pollen but we are Warrior Women celebrating life and nothing can rob us of our joy!
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Faith - I am doing better overall. Last week was great, unbelievable really. I was mountain biking in Moab. I was doing tough 3-4 hour rides in the morning and then able to keep going the rest of the day with hikes and swimming and shopping. This week is my second week on 100mg. I am home and a bit tired. Doing long walks and yoga but jogging is just not available. I've been napping in the pm a bit. It could be exhaustion from last week. My 13 year olds is still tired and sore from trying to keep up with me ;-). Also, I am tired but alert. The brain fog has lifted. I am sticking with this dose.
Praying for a good scan so we can find out how you do on a lower dose. Very curious.
>Z<
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Thanks for all the positive comments. It lifts me up. Just curious about when the fatigue will set in? I really don't have any yet. I was a pastry chef and I actually feel like baking for my family again.
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PatG, you must have been a cheerleader in your former life. Great post, love your upbeat attitude.. I really needed that today. I'm feeling more down than usual as we just came from the wake of a very dear friend and tomorrow is the funeral mass. It's going to be a tough one for me. My friend would love your outlook, she really lived life to the fullest and made every moment count these last two years of her dying of cancer I'm trying to do the same but it's hard.
Faith
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Dianarose - There are quite a few people who have no side effects on this protocol. They occasionally pop up here, but are mostly quiet because ... they aren't trying to solve a problem. If you feel great, feel great. There are a very wide range of responses. The only one that really matters to you is your response.
>Z<
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Hi All.
Turns out I might have been a bit premature in terms of the Ibrance. I had assumed my extended health would cover the cost but now I am not as certain. I spoke to the patient support person today and she indicated that she would speak to my insurance provider but she didn't seem confident.
We are so complacent in Canada. In many ways we have such a good system but there are definitely cracks. The thought of having to mortgage my home to pay for this is daunting but I can't panic yet. I just wish some decisions could be a bit easier right now.
Thanks for listening to me vent a little.
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Faith~ I am truly sorry for your loss. It is such a hard thing to process and accept. I feel for her family and I will be keeping them in my prayers. I pray you're able to remain strong Tomorrow, please try to feel all of us supporting you every step you take to honor your friends fight. I wish you nothing but peace and wish her family the same. So sorry. Rest well, take care of yourself as well. ~M~0
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Sadie~ you're not alone in frustration in trying to get the medicine in Canada. From what information I am getting out of my contacts at Pfizer, is that the insurance (public health care system I believe you have there) doesn't have enough closed clinical trials to officially allow the public access to the ibrance and they have guidelines and legalities to officiate before complete release, in some places the phases are only in phase two, which means at least one or two more phases , that could be months to a year, depending on how many are involved in the study even longer. As soon as they are sure with the data compilation, then will then set strict guidelines to allow certain patients to obtain it. I believe the first guideline will be line one therapy only. He did say he thinks if you were in a study prior to release and you had received the placebo and not the actual ibrance, that those people who only took letrozole would qualify to take it as a continuation to that therapy. (Wendy!). As as continuation of line one therapy. It's just a matter of time before the study closes fully and it's no longer important the blinding And unblinding will be finished. Crossing fingers he allows me to catch a peek of that release listing. He's slowly telling me things. Gonna keep trying. ~M~
He also suggested going directly to Pfizer Canada, call them and ask for assistance programs. Most have them. They sometimes send you discount cards And pricing or if you have script sometimes they set it up through the special pharmacies. Explore everything you can!! Good night!!!
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Faith, you made me laugh...yep, I was a cheerleader way back when (and about 50 pounds ago). (I cheered for a football team that scored only one touchdown in a whole season!) One of my fellow cheerleaders died in her twenties and here I am, 67 years old, still getting up each day with a reason to smile. She also was an artist but barely got to taste adult life.
I'm so sorry about your friend leaving this world but thankful she enjoyed her life. I know she would want you to celebrate her life by living yours well. You and I and others here might die from breast cancer but we're not going to die today and probably not tomorrow. Together let's make the most of this time. I'm sending you a hug and a reminder that you are a survivor and so is your friend. She survives in your sweet memories.
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Sadiesservant, I wonder if your oncologist might consider Kisqali for you instead. Perhaps he could contact the Novartis rep to see about getting the drug for free? I'm so sorry you have to fight for the medicine you need and I wish you the best in getting it.
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Keep digging Micmel!
It's tough when getting some extra time comes down to dollars and cents. What is an extra year worth to any of us? I feel a bit caught in the middle - too late for the clinical trials and too soon for it to be approved. If they do approve it as a first line by that time I will likely be on to the next option.
Interestingly, my MO's second option, Faslodex, is also not covered. Sigh...
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Sadie~ whatever I can find out, I will certainly share. I personally think I it's crap you can't get it. Seriously consider contacting the company directly. It has helped some people. He specifically mentioned that. I am also going to see if he can get me some narrowed information, Wendy is from Vancouver, also there many open and running clinical studies. It's not just one area in Canada, it's slowly completing studies. But in my opinion not fast enough! ~M~
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Pat aka Sadie, Femara with Ibrance is approved in Canada. I know you turned into a bitch on it originally, but maybe if you try it a second time it will be better. You also could try taking it with an antidepressant which could help with the irritability.
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Thanks Cive. It's approved but not funded. That's the challenge. But hopefully between Pfizer and my extended health they will find a solution. Stay tuned!
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