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Ibrance (Palbociclib)

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  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited January 2020

    Candy - anything is possible! At this point I am not throwing any possibilities out. BUT my back has actually been bothering me since June :( Hence why I am awaiting a petscan...MRI and bone scan show progression in lumbar spine with possible marrow involvement (yikes) and then CT scan is showing everything is the same with no changes since last CT. My back goes in and out of being in pain...it got worse after a yoga class last night and then really kicked in. I also ate spicy Korean food for dinner last night which could explain the D. And then again, the Ibrance and ALL the 5 meds I am have diarrhea as a side effect...so who the heck knows? LOL! It is all part of the giant mystery...ugh!!!!!

  • Rosie24
    Rosie24 Member Posts: 1,026
    edited January 2020

    Philly, My 580 was todayat day 28. Usually I’m around 1100 but occasionally 980ish and wait a week. I hope one week is enough this time 😳

    Sorry about your back pain and D. I have a mechanical back issue (spondylolisthesis) and my back didn’t fare well after trying a mild yoga class on Monday. I think it was the hanging to try to touch the floor. If you’re a regular yoga student you prob have great tone and flexibility so I can understand your concern. Good thoughts that it resolves quickly for you. I also hope the PET shows all is well, when you’re able to have it. 🌺

  • LoveFromPhilly
    LoveFromPhilly Member Posts: 1,019
    edited January 2020

    Hi Rosie,

    Oh man that is low!

    And I just read your post that you aren't really feeling any symptoms other than a little bloody nose when blowing? Last cycle my neutrophils were about 800.;..they took a dip. And so I took an extra week off Ibrance so they could regain their above 1000 counts. I too did not notice a difference symptomatically, so it was a surprise! I get my labs done on Friday so we shall see how this past cycle has been for me. I always get my labs done on day 26.

    I am blaming the yoga and my possibly overdoing something...and having this weaker area of my lumbar spine...I wish I knew the answers so I could at the least blame something! LOL!

  • simone60
    simone60 Member Posts: 952
    edited January 2020

    Philly, I hope it isn't cancer. You've been doing so well on I\L. My hip goes out every so often and it causes low back pain which is where my bone lesion s were. Let's hope it's something that can be addressed easil y for you.

    Bluegirl,

    Thanks for the book recommendations. Books about diet, supplementation, and mental health related to cancer always interests me. I have recently finished a couple of really good books, "Radical remission" and "The unwinding of a miracle". Radical remission has stories about various stage 4 cancer patients who have enjoyed long term remission. It is very uplifting. The Unwinding of a miracle is a memoir of a woman who died of colon cancer. It's a sad read, but she talks about her thoughts, struggles, and acceptance of cancer.

  • imagine
    imagine Member Posts: 96
    edited January 2020

    Anyone taking Statins with Ibrance. I was on Atorvastin and had to stop a week before starting my Ibrance. Did not know there was a issue with statins


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5511828/

  • elenas401
    elenas401 Member Posts: 170
    edited January 2020

    Just still waiting to hear if anyone has been on or heard of anyone on both Ibrance /Letrozole and Herceptin/Perjeta at the same time? Thanks

  • maureenb
    maureenb Member Posts: 47
    edited January 2020

    Sorry if this has already been covered... I searched and couldn't find it. I started taking Ibrance 5 days ago. I am wondering when people usually saw an onset of side effects. I started Femara months ago because I wanted to start that one and see what the SEs were from that before adding Ibrance. I've been really scared about it. So far, I feel pretty ok on the Ibrance, but it's probably too early to feel anything, right?

    Thanks everyone--

  • GinnyO2
    GinnyO2 Member Posts: 115
    edited January 2020

    Elanas401,

    Sorry that I can’t be of assistance. I’m on Ibrance and Fulvestrant. If I may ask, where do you have mets to?
    I’ll try to keep your post going with you for a bit. I’ve read of some here being on 3 drugs at a time but I don’t think I’ve read about 4. Hope you can find someone on the same treatment.

  • GinnyO2
    GinnyO2 Member Posts: 115
    edited January 2020

    Elanas401. You may find help at drsusanloveresearch.com

    You can submit a question there too. Hope this helps.

  • elenas401
    elenas401 Member Posts: 170
    edited January 2020

    My original diagnosis three years ago was ER+PR+HER- with Mets to pluera and chest wall. After three years on Ibrance and Letrozole, I have a lymph node that was HER+, but the PET scan I just had shows cancer in the breast but not the rest of my body. So I'm on Ibrance with Letrozole and Herceptin and Perjeta for HER+. I'm a complicated case. Was just wondering if anyone has been treated for two breast cancers at once.

  • sondraf
    sondraf Member Posts: 1,666
    edited January 2020

    Maureenb - Im on my second round, and they had to drop me from 125 to 100 for being just a hair under the WBC to continue on 125. For me the side effects started about Day 8 or so with some serious joint and muscle pain (all below the waist for some reason) - almost a burning sensation. I also had some diarrhea (although that could have been due to pelvic rads), and fatigue. However, most of the side effects died down by Day 15, with the exception of Day 17, and from then on I cruised through the end of the month. Oh - I had deep bone cold too - thats the best I can describe it. Not chills, just bone cold.

    100 has been much easier, with the joint and muscle pain far less, but I still am getting the fatigue at almost the same days again. No diarrhea or nausea this month either, and so far no bone cold. On the days when I feel good though, I feel really good, its just every 4th day seems to be a take it easy sort of situation!

  • ciaci
    ciaci Member Posts: 315
    edited January 2020

    Imagine, regarding the Lipitor (Atorvastatin): I have reported on my issues (literally crippling leg pain - I couldn't walk without a cane) and my experiment (switching to every other day) and my results (NO PAIN ! NO CANE !). <-- That's the "Reader's Digest" version. For details, do a Keyword search on the word "Atorvastatin" and member name "Ciaci"... I believe the last 8 posts will come up!

  • vfp
    vfp Member Posts: 3
    edited January 2020

    Imagine, I am taking Atorvastation, and no one on my team said not to take it. Did you find out why you needed to stop?

  • cowgal
    cowgal Member Posts: 625
    edited January 2020

    vfp - do the keyword search that Ciaci referenced a few posts up. There is an interaction between the two drugs and some doctors are either taking their patients off Atorvastatin or reducing the dosage. I have not started on Ibrance yet but plan to have the talk with my MO next week when I go see him as I am currently on Atorvastatin and the initial plan is for me to start on it after I get through radiation.

  • imagine
    imagine Member Posts: 96
    edited January 2020

    I asked them to check all my meds at my MO office before my 1st Falsodex injection and was told to wait a full week off of Atorvastin to start the Ibrance.

  • BevJen
    BevJen Member Posts: 2,341
    edited January 2020

    Imagine,

    Yes, Ciaci's information is really good. There was a whole discussion going on about how Ibrance seemed to intensify the effects of certain meds, in addition to the statins. For example, I'm on BP meds, and I had a heckuva time when I first started on Ibrance in July with dropping BP. My internist told me to halve my dose, and I'm still doing that and it's maintaining my BP very well.

    I had previously read the article that you posted about the person on statins and Ibrance. It seems to be a very odd situation, and just kind of a flukey thing with that one person due to some individual issues. Nevertheless, it's good to be cautious with all of these drug interactions, since each of us can react differently to particular drug combinations.

  • cowgal
    cowgal Member Posts: 625
    edited January 2020

    Imagine - Did they put you on a different cholesterol drug?

  • JACK5IE
    JACK5IE Member Posts: 654
    edited January 2020

    I asked my GP myself to switch me from Lipitor to Crestor based on what I read. I'd rather switch meds than have to worry about the interaction.

  • denny10
    denny10 Member Posts: 421
    edited January 2020

    Maureenb don't worry too much about taking Ibrance, most of the side effects are tolerable. Fatigue seems to be the most common problem, but slight nose bleeds, hair loss, rashes, mouth sores, nausea ,upset stomach, constipation, flatulence have all been mentioned here. We all have different reactions to the drug at different times in the cycle. If you are given 125g and it badly affects your quality of life tell your oncologist, your dosage can be dropped to 100g or 75g.

    As for drug interactions. I was taking blood pressure tablets when I started Ibrance. 6 months later my blood pressure was within the 'normal' range and I decided to try living without the blood pressure meds.. 18 months on my blood pressure is still ok ,is that a side effect of Ibrance??This is still a relatively new drug and I think doctors are still 'discovering' how it interacts with other drugs, as more people are prescribed it.

    Elenas I hope you get some answers soon.

  • imagine
    imagine Member Posts: 96
    edited January 2020

    not yet. Just started treatments so waiting to see how my cholesterol levels go. I have started misted plant based nutrition so hopefully that will help.

  • karenfizedbo15
    karenfizedbo15 Member Posts: 719
    edited January 2020

    OK can’t keep up ... too many posts ladies! Cholesterol stuff is a thing for me, basically I go by what Ciaci and my GP say at the moment!

  • RhosgobelRabbit
    RhosgobelRabbit Member Posts: 502
    edited January 2020

    Jaycee, I was so glad to hear good things about your new MO, this really perked my day and I was happy for you.

    Maureenb, I am on Cycle 3 of Ibrance end of 2nd week. I am still at 125mg. My biggest complaint is gas. Like major gas. Just call me Rip Van Winkle...heavy emphasis on the Rip and none on the van or the winkle. :) I did get teeny sores on the tip of my tongue the first two cycles and maybe a couple days this cycle my mouth felt sore kinda like the soreness you'd feel if you sucked on a jawbreaker too long. If you do get mouth sores, I recommend Colgate Peroxyl rinse. Works very well. Sore mouth and mouth sores went away and really didn't linger long for me. But the gas has never left me. I find having legendary gas out of nowhere and out of the blue a silly childish type humor that helps me get through treatment. Aromasin causes more issues for me than Ibrance. I find it tolerable overall. I was really afraid to start too, but was surprised it wasn't as bad as I thought it would be. I wish you many many cycles on this treatment! :)


  • sondraf
    sondraf Member Posts: 1,666
    edited January 2020

    Second the Peroxyl recommendation. I get mouth sores here and there and one shot takes care of them in a hurry.

  • WANDERING
    WANDERING Member Posts: 197
    edited January 2020

    Hi again. I had my second blood transfusion in 6 weeks yesterday. My husband and I met with a dietician from the hospital. He negated the information we got from her today after we got home and went grocery shopping. I think he think he knows more than she does. However, I am really confused as to what to do - eat more meat - less. Eat more carbs - less. Right now I just want to cry all the time.

  • intolight
    intolight Member Posts: 2,324
    edited January 2020

    WANDERING, I am sorry this is so confusing for you. Without knowing your normal diet I can't help much, but I do know you are not alone with needing blood transfusions. I also know that if you think you might be crying more than usual and maybe are depressed, that many of us have been there and find that getting some help is good. Depression is also a side effect of this dx but there are some simple things that can help. Talk to your MO or a friend who knows, or pm me. Some other ladies will probably chime in with help on how to improve your blood counts. I have not struggled with this much and I pretty much eat whatever I want that doesn't treat my gt adversely, but I do eat meat.

  • WANDERING
    WANDERING Member Posts: 197
    edited January 2020

    My husband attends EVERY doctor's appointment and chimes in with his opinion. He is so opinionated It is becoming increasingly difficult for me to express myself. I understand the depression part - some days are good and some days are not. I have had MBC for 6 years and the last 3 months the ONJ. The ONJ has pushed my problem over the edge. Because of the jaw issues I have a hard time eating. I have lost 50 pounds in the last year. One day I should eat carbs the next day carbs feed the cancer and I should not eat them at all. Fruit - no fruit. Carbs - no carbs. Too much water - not enough water. You get the picture.

  • denny10
    denny10 Member Posts: 421
    edited January 2020

    Hi wandering, I hope the transfusion works and makes you feel better soon.

    I am not a dietitian, but I remember the dietary research I did when first prescribed Ibrance; eat foods rich in iron and vitamin B9 to help red blood cell production. I just ate more of the the iron rich foods I liked already: dried fruit -raisins, prunes, apricots or green veg- broccoli, kale, spinach. (I could not face extra red meat or offal) There is vit.B in bread, legumes and nuts. I now 'have to have' a daily handful of nuts, preferably pistachios , purely for health reasons of course, not because I think they taste great!

    You are going through a tough time, nurture yourself and do what you think will make you feel good.

  • simone60
    simone60 Member Posts: 952
    edited January 2020

    Hi Wandering,

    I 'm sorry to hear you are going through a difficult time. I second Intolights suggestion on getting help with the depression. I take antidepressants and they seem to help.

    I take Turkey tail to help with the wbc counts. Another lady on another thread eats liver to help with the rbc.

    There is a big debate on carbs feeding cancer. There are a lot of people that swear by the keto diet. I'm not convinced myself. We need fruit and vegetables to help us keep healthy. Please don't stress yourself over your diet. "Cancer fighting Kitchen" by Rebecca Katz is an excellent cookbook. Lots of easy, healthy recipes. Drinking Smoothies are another way to get vitamins and calories. Pm me if you are interested in recommendations by my cancer center for smoothies.

  • simone60
    simone60 Member Posts: 952
    edited January 2020

    I just got back from my appointment for my pet scan. Woohoo, I'm still NEAD! On to cycle 14!

  • BevJen
    BevJen Member Posts: 2,341
    edited January 2020

    Simone,

    Such wonderful news. Congrats!

    Are you still doing COC protocol along with Ibrance/Femara?