Ibrance (Palbociclib)
Comments
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oh wanted to add that I did tell multiple doctors about my mysterious symptoms and no one thought anything was odd. My back went out between 2014-2015 for about 6 months and I was in grad school and I couldn’t sit in the classrooms because it hurt so much
I went to many complementary doctors and finally urgent care and asked for imaging to be done. I was told I was stressed out from grad school and given some muscle relaxers and sent home with no imaging. I still feel som anger and frustration around that 0 -
Thanks Jaycee49 for checking on where I have been. Welcome to all the newbies...sorry you are here. Have kept up with all your posts. The last 3 months I have had excruciating back pain caused by pinched nerves on either side of the spine in the lower back. Had an MRI and that is how it was found. They did shots and one side took but not the other side. It has been a very painful 3 months. But on the good side found a chiropractor that is helping me. I go 3 times a week to see him and am finally getting some relief. Honestly the pain has been so bad cancer has been secondary thru this. I go for scans in two weeks...so now dealing with the scaniety....anxious to see how it turns out with all this inflammation in my body.0
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Hi Airlinegirl nice to meet you!
Sorry to hear about your back pain hope that gets a lot better.
So you went 16 years before recurrence is that right?? If so, wow.
You have been on Ibrance for 3 years now, so you are NED 3 years? If so WOW that is great.
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airlinegirl, hello! I have a ton of back issues due to three compression fractures in my spine at C7, T11 and L4. I too have a number of squidged discs, pinched nerves and inflammation, and had my first follow-up scans since starting ibrance this past Friday. Becuase I have a reaction to the contrast dye for CT I had to take a whole bunch of prednisone before the exam and the relief from my back issues was pretty heavenly. It lasted about 36 hours.
Anyway, the anxiety is pretty gross and became high level this morning when my orthopedic called to ask me to come in immediately and discuss the results of my CT. It turns out that my compression fracture at T11 is worse/more compressed. I'm not in any pain at the moment so surgery such as kyphoplasty isn't really a consideration. But I'm walking three miles a day and doing PT which really really helps. Anyway, my CT is in but I won't find out the results until Thursday when I see my oncologist. I hate that they make you wait. It's making my anxiety even worse! ughhhhh!!!! I'm really sorry you have to think about that while you are in pain. It's not fun.
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Collective wisdom question here again, with respect to my "weak" spells on Ibrance -- a friend of mine asked me whether I thought the weak feeling could be attributable to low blood pressure. Huh. I hadn't thought of that. So today, I used my trusty BP meter and low and behold, my BP IS much lower than is normal for me. With my BP meds, which I have been on for years, my BP usually hovers in the mid 120s over 80-82. Today, after she asked me this, my BP was at 115/70. I took it midday and it was at 110/70. Just took it again, and it was even lower.
I don't see low blood pressure as a side effect of Ibrance or of Fulvestrant -- has anyone else experienced this specific side effect? I'm waiting for my blood test results and so will raise this when I get that call.
Thanks.
Bev
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I average 100/60. Yes, my BP is lower..not sure whether it is Ibrance or Letrozole. I can walk flat forever..but steps and any vertical climbs, I just move slower. It all about adapting.
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BevJen- my blood pressure has always been low, it might have been even lower while on Ibrance-90-100/56-65. I really pushed fluids, sit on the side of the bed before getting up, modified some yoga poses. you may need less blood pressure medicine.
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Thanks Sandibeach and Nancy. Good info to have. I called the triage nurse line to check, but they told me to take my Ibrance tonight. I guess this is just one of the things that I'm going to have to adjust to. I will call my primary care doc tomorrow and ask about reducing my BP meds. That may help.
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airlinegal, I'm sending you my best!
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Love from PatGMc
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BevJen - I have been on blood pressure meds for years, then chemo 2 1/2 years ago seemed to lower my bp, so my GP cut the dose in half. I then cut that dose in half and mentioned it to her and she suggested not taking it, but have my BP checked monthly for the next 3 months and make a decision as to whether or not to continue...it has been 2 months and BP is still normal, so I am thinking I will stop the meds, BUT keep an eye on my numbers. I am taking Ibrance and letrozole, so maybe the Ibrance keeps the BP more 'normal for some of us? I wish you and everyone good health and healing!!
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I stopped using BP meds after starting Ibrance as I started getting a bit lightheaded at times and my BP was within the 'normal' range. My oncologist said she had seen this in other patients. It's checked at each monthly appointment. I am just pleased not to have another drug in the mix.
Good wishes to all waiting for scan results.
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Nice to see you airlinegal- I hope your back troubles are quickly resolved!
I thought I read here or maybe on a FB group that Ibrance can affect BP meds In some people and make them work better than they did prior causing, causing some folks to have to lower their BP med dose? Probably worth investigating this Avenue, Bev. I don’t take BP meds but o do sometimes get that lightheaded thing with Ibrance (never really got it before so I’m blaming Ibrance) burn it is pretty infrequent and goes away quickly.
Love to all,
Lauren
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Just wanted to point out that Ibrance/letrozole also lowers cholesterol, so if you're on any statins, be sure to have your levels checked - I was able to cut my Lipitor dose in half since starting Ibrance...
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Ciaci thanks for sharing that info about cholesterol.
Pat did you ever hear of taking turmeric with black pepper? When I went to Whole Foods that’s what I was told. I always ordered mine from amazon and didn’t bother to look. I only went to Whole Foods bc they had a vitamin sale.
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Lauren and all,
Thanks for the info about BP meds. I contacted my primary care doc today -- she is amazing -- and she wants me to cut my BP meds in half and see how that works. I will go back to her in about a month for a BP check. The nurse practitioner at Hopkins said that she hasn't had other patients with the BP side effect, but there are enough folks here who said that might have been going on with them that I'm convinced my drop in BP is related to the start of the Ibrance.
Bev
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Finished my third round of Ibrance today. I don't have as much stamina as I used to. Is that due to low wbc count? If I go to the pool for a couple hours early in the day, I'm very tired the rest of the day, and all I do is float around in the pool. Its not like I'm doing laps. I started walking a bit again since my foot has pretty much healed from a broken bone, but have had to cut a few blocks off my normal route. I guess I feel a bit weaker. But I still grocery shop and get housework done-nothing strenuous, low-maintenance has been my mantra for years. Today I went shopping for several hours and I feel worn out in a different way than I was before.
I didn't know Ibrance lowered cholesterol. Will be interesting to see my numbers next time my pcp orders bloodwork.
For the past several years my bp has ranged from normal to slightly elevated and Ibrance hasn't had any effect so far on that.
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Divine, don't get too discouraged. It sounds like you are doing fine with all our new limitations. After three years, I can still grocery shop and fix dinner, but I don't do long shopping (like a mall) or walk more than about half an hour's worth without taking a rest. I do light housekeeping but have a cleaning lady come in every-other week to do heavy cleaning. I have an electric scooter for our long 3-mile beach boardwalk walks and to take to Sea World, etc. I want to do what the family does so I have accepted this kind of help and I find it keeps my spirits up. I also still travel although I don't hike or climb multiple flights of stairs. I have my 3-month scan next Friday so we will see if anything shows up. I feel like I don't have as much stamina as 6 months ago but I am trying. Chris
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Divine if you mean you finished your 3rd bottle...me too. I re start on this coming Monday and I too have been feeling the exact same thing...I noticed it started the week before they ended.
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Was just talking to my husband (a retired pharmacist), and he reminded me that the Ibrance itself didn't lower the cholesterol. It increased the levels of the statin (in my case, atorvastatin, or Lipitor) in my body, thereby lowering the cholesterol.
I asked what was the difference, since it resulted in lowering my cholesterol medication, and he pointed out that if I wasn't on a statin to begin with, the cholesterol levels wouldn't have been affected.
So, to be clear: Ibrance increases the effect of cholesterol-lowering drugs, but it has no effect on cholesterol itself.
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thanks for clarifying that ciaci! I do know that the loss of estrogen from the anti-hormonal meds (combined with menopause) does increase cholesterol won i was confused. Also, I changed statins because of the interference with the Ibrance pathway from Lipitor to Crestor, which apparently doesn’t interfere, according to the speciality pharmacist.
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Divine and Nicole how many mgs are you taking? I take 100. I reduced it from 125. I couldn’t get out the bed on that dosage.
Some days I have more energy than others. I swim too and then putt around the house. No mall excursions.
Tanya
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I go in and out of schlumps of low energy.
Sometimes I feel like my energy is good and high - and then the next day I am wiped out.
I have been on 100mg of Ibrance since May of 2017. I lowered from 125mg because my neutrophils and wbc got too low.
Sometimes, like today, I can’t get out of bed and keep sleeping. I woke up at 11:30am today!! 😯 totally didn’t mean to do that! I went to bed at about 11pm...I just truly couldn’t get up!
Then all day today I felt quite foggy headed.
Some days just are weird.
Other days I feel sharp as a tack and awake
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Thanks, Ciaci, that is exactly what I suspected! My BP numbers have never been so low!! Wondering why, I assumed that the other meds I take must be competing with the Ibrance for the CYP3A, or whatever enzyme it is that digests them all, and therefore it takes longer to degrade them all, so the levels of the meds in my bloodstream must be somewhat higher than normal.
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Love from Philly, Thanks for your recent post! I'm not on Ibrance, it worked for me for 3 mos and then stopped. Last 6 mos I've been on Taxol IV after scans I'm getting ready to start Zeloda. (Taxol was causing severe depression and neuropathy in my left leg.
But your description of your days are exactly what I've been going thru these last few months. You're quit right , some days are just weird!
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Tanya, I am on 100 mg. My first bottle was 125mg we reduced due to my WBC being low. The last 2 bottles were 100mg. I had my appointment Monday it was only 1 day after the pills ended and WBC was .86 which is low but she said she wasn't concerned because I have the whole week off for it to come up so I asked to re-check blood this Friday Day 5 off Ibrance she said ok but said she probably will NOT dose reduce. I do know some people say their WBC stays little low on Ibrance and thats just there norm. It might have been Jaycee??? I think?? Sorry if I am wrong can't remember.
Yea though I have the same things I get like 2 days at the gym I feel normal then 2 or 3 days I feel EXTREME fatigue.
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Concerning the tired/lack of energy thing. YES !!!!! I have been on 75mg since April 2018- almost 1 1/2 years. I too get so wiped out very easily. I used to have so much energy before all this crap. Now, I putter out easily. Last week I went with a friend out to eat lunch and wandered around our local mall. Total excursion was 4- 4 1/2 hours and nothing too strenuous. Then I came home totally wiped out. It is so frustrating to not have the stamina I used to. And I don't think people understand. "You look good" people say. And I am 48 years old. So they do not understand if I say I cannot keep up like I used to.
Also, I have periods of just feeling "unwell". I have posted about it before. But I will be going along ok and out of nowhere I feel kind of nauseous and tired and what I call "cruddy". Since the last scan shows stable, I guess it is not the cancer, but the meds making me feel this way. We need the meds, but they sure don't make me feel good.
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Nicole- I get my labs done the day before I am to restart the Ibrance cycle. My ANC count is usually 900-1000. And that is AFTER the week off to recover. We go ahead with the Ibrance.
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Yes, I finished the 3rd bottle and taking 100 mg of Ibrance. I feel like if I could get a good nap in the middle of the day, I would feel more rested. But my body and mind don't seem to be able to cut out in the middle of the day and take that break. Maybe I need to dedicate myself more to this, seriously. Sort of train myself to relax enough to nap.
The thing is, in my mind I have plans for what I want to do, but the lack of stamina is what curtails the execution of some of these plans. I do learn to work smarter and not harder, but at times the limitations are frustrating.
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Ladies,
Has anyone ever heard of/used a plant called Devil's Claw? Apparently it helps immensely with joint pains. In Italy it's the latest fad along with curcumin in terms of holistic alternatives.
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