Ibrance (Palbociclib)
Comments
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Faith, I totally get what you are saying. I have been off Ibrance for three weeks and I feel like a completely different person. I started in August but had to go off recently to get counts up for radiation. It’s crazy really. I had no idea how tired I was and how little I was doing until I was off the meds. I think the best way to describe is malaise. I was just in a funk. Thought it was depression. But please, anyone that is new to Ibrance don’t take it as a reason to be afraid. Just want you to know that my experience was the same as someone else so you will know too if you feel the same. I thank God we have Ibrance and will dutifully go back because I am grateful to have a drug that allows me to live my life. Even if I am a tired! I am also thankful to have a place to compare experience. Makes me feel a little less alone in this big mess
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Txgatata, Malaise is the perfect word! I've been depressed before and, in my experience, the Ibrance experience is very different from that. Yes....malaise....which we can all do until something better comes along. And it will! In the meantime, we can take breaks and visit our former selves! I can live with that.
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Thank you Txgatata and Pat for this conversation. You are right about the malaise feeling. I have been feeling in a funk lately and even thinking about mentioning some depression to my MO when I see her in February. But I know I am not that bad. I have never had even one day off since I started almost 2 years ago. I am also grateful for this medicine and that I have been able to tolerate the Ibrance so well and it has done well for me. I will take the malaise and the future I have because of this drug. Thank you for the reminder.
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Intolight, 2 years is a long time without a break! I'm sending you a High Five! Please look up Laughter Yoga or Laughter Therapy and try some of the exercises. They really do help.
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Dear all,
Thank you so much for your precious replies ... though Faith you're right, I was already asleep due to the time difference. I called my liaison-nurse this morning, and after a talk with the MO, they asked me to take some bloodtests. So, for now, I'm awaiting their call for the results.
Eventhough I'm so far away from you all (I mean geographically speaking), you cannot imagine what you presence in this thread means to me. I send you all tons of love of prayers.
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Goose...I take 5 mg. of Crestor. I started taking it every other day, rather than daily because it raises liver enzymes. There are studies indicating that EOD dosage is still effective while eliminating some of the side effects.
Hope
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Chani, at the advice of several women here, when I started Zometa I took loratadine (Claritin) the day before, the day of, and the day after the infusion. First one was tough, but they became progressively easier and now it's no big deal (other than finding a working vein.) Echoing someone's post about mouth sores, swishing with salt water helps. These, too, settled down after the first few cycles. Good luck and keep us posted.
Hope, good to see you and glad you're tolerating Taxol well. April isn't that far away and then hopefully you can turn back to hormonals.
Pat, good luck with 75mg and let us know how much of a difference it makes. Hoping for great things!
I just finished my 6th I/F cycle and am feeling Funk 2.0. Malaise, yes, but also all over achiness, chills, headache, but no fever. Labs are low but reasonable. I wanted to ask if anyone else had been here, but I think I'm hearing a chorus of yeses. I started this cycle with a cold and felt like I was behind the curve the whole way. Hoping this break will reset things. I made the decision a while ago to start Ibrance on the 1st of the month, regardless. That way DH and family knows exactly where I am, so, for example, we don't schedule heavy-duty things on the last week of the month. Except we do, sometimes. So anyway, this month I get a whopping 10 days off. Darn February, no extra days.
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I am just about done my first week of the first cycle. So far it has been tolerable, except for some rash in the stomach area. Not sure if that’s due to the drug. In my very limited knowledge of Ibrance so far, I am told to drink at least 8 cups of water a day which should take away most of the side effects. I am also bouncing between feeling chills and hot flashes (due to Zoladex). Worest at night when i stuggle between sweating and feeling chills to the bones. However, if that’s all the side effects Iget, I will take it take it!
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thereishope, I'm famous for standing in front of the open refrigerator in the middle of the night, with an afghan over my shoulders. I want to scream at my body, "Make up your mind!"
I've been tired for months, and have gotten quite used to it - luckily for me, I'm retired, so if I feel the need for a nap, I take one. My husband has resigned himself to the fact that I can no longer carry on a conversation in the car - he says it's like when the kids were little and fussy, we'd put them in the car and go for a ride to make them sleep. Once I'm buckled in, by the end of the driveway, I'm snoring away!
Finding it interesting that so many of you have mentioned malaise - a perfect word. I just thought it was typical winter funk, but I, too, often find myself just wanting to stay snuggled up on the couch and doing NOTHING - not even my crochet, which I love.
Hoping the best of outcomes, for all of us!
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Hello ladies. Well, that's interesting about being off Ibrance and feeling better. I've been off all my different medications (Ibrance, Faslodex) while waiting to begin chemo (Halaven) - I feel amazing, energy, strength (I've been lifting heavy groceries with enthusiasm), walking fast, taking big strides, running up the stairs - I suddenly realise how comparatively week and slow I'd been feeling. Fun to feel more alive for a bit ... too bad it is just to begin a new onslaught. But lucky thing too because this vicious thing is galloping inside my right breast now. Scareeeee.
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Malaise is just the right word for how I felt on Ibrance, it's a combination of being tired and having no zest for life, maybe a bit of depression, although I never took meds for that.
Amaranth, I'm glad you're feeling a bit better but so sorry for the reason and also that you can feel it galloping in your breast. Scareeee is right! I will be praying that Halaven kicks those mets and treats you well with minimum SE's.
Ladies I wanted to share some news about funding for Ibrance. For those of you who qualified for help from Pfizer last year for your Ibrance and were told this year that funding had run out, which is what I was told in November, it's back. I just had a call today from Pfizer that there is more funding available which is good news. However, since I'm on a break from Ibrance and don't know when or if I will go back to it or move on to something else I'm waiting to hear back from my MO about whether to reapply. I'm guessing he will say no, which is fine with me since I wouldn't want to take money that could be better used by others and I pray it's a long time before I may need it again. So far, I'm doing well just on the letrozole. Hope this info helps some of you who are struggling to pay for Ibrance.
Have a peaceful night everyone and I'm praying for a cure for all of us.
Faith (in the future).
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Faith, thanks for the Ffizer funding news. May I ask if it is income based? Which number or department of Ffizer I can call? My Onc office just went thru several rejections with foundations because I am still working and my income exceeds the threshold. I am on Medicare so not that much I can do.
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Cling, here is the website for Pfizer funding. I was able to use their "Pfizer CoPay One Card" without having to qualify because I am on private insurance (Kaiser). There is information on other insurance including Medicare. Good luck.
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Hi everyone:
I spent some time in the past few months mainly browsing here. I am half way through cycle 6 of Ibrance and Faslodex and am tolerating it pretty well other than a few days every month where I do what I call "sleepathons." I also get occasional nausea and vomiting.
What I have been looking for and not finding, is someone with a similar diagnosis to mine. I am only considered metastatic because my tumour is inoperable. This is because it is entangled with the neurovascular bundle of the brachial plexus. I had a CT chest scan with contrast in November and nothing had really changed from pre diagnosis scan August 5. So Ibrance may be working. I had 8 palliative targeted sessions of rads in September and have gone over max from those and lots in 2013.
The tumour has left me with severe lymphedema (not a big deal in the great scheme of things) and burning/tingling/numbness/pain from scapula to right hand which no longer works for the most part. The only similar case is that of DiVa (spelling?) who very sadly has had her amputated. I sent her a PM but understandably she has not responded at least not yet.
So if anyone knows of anyone who has something similar I would love to hear about it. Meanwhile I hope I am one of the median range who is on the late progression side!
Marian
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Amarantha....so sorry to hear of your progression. I can certainly understand if you're feeling dispirited but I second Pat's introduction of the word YET. I love that and it's so typical of you, PatGMc, to find the very words I was trying to find. Amarantha, we all love you too much to allow you to leave this thread where we've all got to know each other so well. (I've been a bit unwell lately and haven't posted but I've been thinking of you all). So please keep coming in and telling us how well your new treatment is going.
Mimi and thereishope..... I'm in my twelfth cycle of Ibrance/Letrozole. The fatigue is a shock at first but after a few cycles you do get used to it and Jaylea is right (was it you Jaylea? I can't go back and check again!) that it's better if you keep plodding on through the fog because you tend not to feel any better for just sitting around. At least, that's what works for me. When I'm really tired I have a nap but I find a few stretching exercises before I get up help keep my limbs from seizing up! I had problems with sore gums and mouth ulcers at the beginning but my oncologist recommended Gelclair, which I use whenever I need it, which is towards the end of the third week and during the break. For the last few cycles, this SE has been much less of a bother because Gelclair strengthens the gums and mucous membranes. I did have some nausea in the beginning until I learned which foods to eat and which to avoid. I take Ondansetron (Zofran) for nausea when I need to. Don't be put off by what you read about SEs in articles. Its bark is worse than its bite. Do be careful during the weeks when your white cell count is down and avoid crowds and anyone who has a cough or cold if at all possible. Attend to any cuts in your skin so that you don't pick up an infection. Lastly, welcome to the thread. This is a great group of women who are supportive and knowledgeable.
PatGMc.....wonderful to read your good news and your even better news!
My input on TMs is I don't ask any more. If they choose to tell me I listen but I don't take it seriously. Mine jumps between 450 and 520, up and down, up and down with monotonous regularity.
Girls, I'm having my three monthly bone scan and CT scan tomorrow. Please keep your collective fingers crossed!
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Leapfrog....Good to "see" you. I am not on the Ibrance train anymore...now on Taxol. But, I check in to see how all of you are doing. Will be thinking/praying for you tomorrow. While you are being scanned, I will be in the chemo chair for Taxol #8.
Keeping all of you gals in my prayers for continued success with Ibrance.
Hope
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Marion, my right arm/hand was paralyzed after by (left) mastectomy but that was due to something else. I am right handed and it certainly was debilitating. I don't know of anyone here with your dx. Sounds horrid. And I bet you are right handed but learning to do all kinds of things left handed. I think I'd be complaining more than you are. Does any prognosis get your arm/hand back working? My paralysis lasted about four months and that was enough. I hated not being able to drive and typing was a problem, too. Have you looked around on other threads for similar dx? Must be someone. My paralysis was caused by MS and I searched and searched for someone with stage IV and MS and finally found someone here on BCO. It really does feel good to find that person. I hope you find them.
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Cling, yes the funding is usually income based but it never hurts to ask. The number I was given to call is 866-706-2400. Good luck, hope there's something for you out there. One other thing to know, is they only ask for one source of income such as Social Security or W-2 form, not all of it together.
Faith (in the future).
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Last week Pfizer said I'd need to apply to the Patient Access Network and be denied Co-Pay Assistance before they would consider me for free Ibrance again. Fortunately, the process was begun and completed within 3 days and I received the medicine today with approval through December, 2018. Such a relief! That bit of anxiety may be God's tap on the shoulder to remind me not to take any of this for granted!
For those of you who don't get assistance, I'm curious to know what your out-of-pocket is if you have Medicare and Part D Drug Insurance. Thanks!
PatG
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Pat, I have Medicare and a supplement. I also have a PAN grant but can tell what the out pf pocket would be without it.
January $3,049.39
All subsequent months $563.23
These figure are from 2017. I haven't gotten an order in 2018 yet so they may be higher. That will happen next week. That first hit will deplete the grant quickly. Then I will be in the hunt for another one. PAN is open again right now but PAF has not been responding to emails or phone calls for weeks, per another BCO member I have PMd with. No telling what that means. We may be down to one foundation. PAN gets most of their funding from Pfizer and it was interesting to me that PAN was closed at the same time Pfizer said they had no funds. Then both at once had funds. Hummmmm.
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I forgot to mention that I also have Medicare Part D drug insurance. They are the ones that pay the bulk of the Ibrance cost. The amounts I mentioned above are the co-pays of the the drug insurance.
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Hello Ladies,
I have not posted here since 2016, but do read posts from time to time.
I am presently on day 15 of my 26th round of Ibrance. Initially, I had significant fatigue from the Ibrance, plus muscle cramps in my torso & legs from I believe, the Faslodex.
Last summer I was reading some articles on mercola.com and decided to start using Dr. Mercola's Vit. B complex & his Magnesium L-Threonate. After a couple weeks I began to notice that my fatigue was improving,, and is now about 50% better. My muscle cramps also improve greatly.
If anyone is interested in reading about these products you can do so at mercola.com.
I hope this is helpful to someone.
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Oh, and even though I have Medicare - part D I qualify for Pfizer's PAP. My co-pays if I had to pay them would be $3,200.00 in January and $523.00 every month thereafter. I am very grateful for the help.
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Hi Ladies,
I am really appreciating the wealth of information here. As I am new to taking Ibrance, wondering if it’s likely that I will see progression of the disease before it gets better.
I am in the middle of my first cycle but feeling new pain in my rib which I am suspecting is a new lesion. Since I know it takes a while for ibrance to work, does that mean slight progression may be expected at the beginning?
Wow JunieB! 26 cycles on Ibrance, that’s incredible!
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Thereishope, I pray that Ibrance will be the perfect treatment for you. My little bit of advice for this stage in your journey would be to assume that the medicine is working. No, not just assume but celebrate that it's working!
You may have all sorts of aches and pains that come and go. The problems I had that sent me in for the scan where my bone mets first showed up turned out to have nothing to do with my cancer. I had thought I must have brain mets because I had headaches and was vomiting a lot. That turned out to be an allergy to the Magnesium supplement I was taking. The discomfort I had in my hips and one leg was cured by a physical therapist doing myofascial (sp?) release therapy. It was just soft tissue discomfort lots of people had that goes undiagnosed. The pain in my upper leg/hip turned out to be arthritis! I was diagnosed with widespread bone mets in August, 2016 and here I am, after 15 cycles of 100mg Ibrance/Arimidex/XGeva with almost no evidence of disease! Sometimes I get a new pain, especially in the weeks before a scan is scheduled, but I've taught myself to just breathe and expect the best.
I'm going to expect the best for you too, my friend. We'll be here ready to celebrate with you, knowing that God is still in the healing business.
Love and a hug from PatG
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Thereishope, welcome to this site. We are sorry you have to be here, but know you are supported. Pat is right. Give the Ibrance some time to work. In the beginning, I had some odd aches and pains, but after a few months they disappeared. I am on cycle 20 and doing well with no active tumors. I occasionally have some mild diarrhea during my week off and have thinning hair, but that is about it. Hang in there and ask as many questions as you like.
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Thanks IntoLight and Pat for your response. I am so appreciative of you all helping me through this journey.
The new pain that I am getting in the rib is the same type of pain that I had on the opposite side of the chest before I had the CT scan that confirmed it was a bone lesion. So, I think this new pain may be related to a another new lesion. Now when I cough, both side of the ribs hurt instead of just one side. My explanation is that the cancer is stronger than Ibrance right now, hence, I may be seeing progression. Hopefully, in a few months, the Ibrance will take control of the cancer. You are right, thinking positive helps! I have been reading a book - AntiCancer by Dr. David Servan, which talks a lot about building a strong mind.
So instead of being scared of taking my first Ibrance pill, I now embrace it everyday! Hope this little pill kick the crap out of the cancer!
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jaycee49 for starters, every time I see that little photo of you I think of a woman I knew long ago up here in British Columbia~~you are both beautiful. Does 49 indicate a birth year~~if so it is also mine. You certainly have a double whammy with MS and Stage IV and I am glad your paralysis ended after 4 months. In my case the slowing of use of right hand started in mid July when I could not turn keys in my car or in the door of my house and it worsened over the next few months. Yes, I am adapting and the main thing that I do complain about is the burning/tingling/numbness of nerve pain. I am on good opioids with an excellent team at my cancer agency. I have severe lymphedema that does not look so bad because I am "lean" they tell me. At least I have a lean arm and hand and so on though my fingers feel like sausages at times.
My MO continues to tell me that he doubts there will be any positive change in my hand and I guess that so long as the tumour entangled with the neurovascular bundle is held back by Ibrance then it should remain stable. DiV is the name of the woman who had her arm amputated though she does have a very rare type of breast cancer.
I will continue to search for someone with a similar diagnosis. I am indeed fortunate to have insurance that pays for Ibrance and there is hope that it will be covered in some provinces in coming months.
Marian
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Marian, yup, 49 is my birth year so we are the same age as are several other posters on this thread. Good age, 68. I like it. I have lymphedema, too, in my left arm (cancer side). Mine is fairly mild and if I wear my sleeve every day, I'm fine. Have you looked in the lymphedema thread for people with your dx? When I searched on your dx, I just found posts by ... you. The nerve pain is annoying in my feet, probably from Letrozole and MS combo. Just before I got the use of my right arm/hand back, I was looking at steering wheel adaptations that make it easier to drive one-handed. There is this knob thing that attaches to the steering wheel and makes it easier to make a hard turn. Driving is so important to our independence. Keep searching. That person is out there.
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Here's to the 49ers! We are made of hardy stock!!
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