Ibrance (Palbociclib)

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  • brutersmom
    brutersmom Member Posts: 958
    edited November 2023

    Divinemrsm. I bought two cold wraps last year some and two packs for after work out that go around my knee cap. I also just ordered a new work out support with spring on the side that is lighter wait then the ratty one I have been using for a year. Hopefully it will relieve some of the pain. Not sure why advil doesn't bother me alleve makes my stomach burn. Also as I can I am going to take Tylenol and advil alternating. Like I did after breast surgery. Think I took a total of 2 opoids then.

    He recommend celebrex. Last time I tried it it kept me a wake. We will see.

  • brutersmom
    brutersmom Member Posts: 958

    Mswife. I did try celebrex. He did suggest that was the easiest on the stomach. I tried it 1½ years ago when I destroyed my knee. By the time I tried it, my stomache was to irritated. I did have trouble sleeping on that med but I might try is again.

  • mswife
    mswife Member Posts: 70

    Celebrex tends to be much easier on the stomach, and is very commonly prescribed for bad knees and after knee surgeries. Hopefully you get some relief with it!

    I’m so sorry that I don’t recall the rest of your background, but another option might be voltaren topical gel compounded at a higher percentage than what’s available over the counter. Not zero risk but something worth discussing if you haven’t already.

    wishing you good luck and some relief!

  • brutersmom
    brutersmom Member Posts: 958

    Mswife I did try votaren jell after my stomach finally settled down. It did the same thing just took longer. 😡 A contoured pillow to keep my knee from touching the mattress has been a big help.

  • brutersmom
    brutersmom Member Posts: 958

    Dukec. I have not tried any yet. I have never been a fan of opiods. Trying to put it off as long as I can. I have thought about asking for them and for a handicapped parking tag. 😆 I do take effexor so I have to be careful what I take.

  • moderators
    moderators Posts: 8,634

    @sunshine99 You can add a new diagnosis or treatment at any time by going to your Profile Dashboard. You can find detailed instructions here: Your Diagnosis and Your Treatment Information

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  • brutersmom
    brutersmom Member Posts: 958

    I need to vent. I am angry and upset and just plain frustrated with everything that keeps happening. I went to the eye Dr. today. I am told I have ocular hypertension. I now have to go through a bunch of eye test to confirm the diagnosis and rule out glaucoma. I saw the retina specialist in May 4 and my pressures were normal. I asked the eye Dr. if it could be from the cancer drugs or Effexor. He said no. Usually it comes from steroids or a medical issue. My brain does a fast rewind. I started efferor April 20. I saw the retina specialist May 4 and my pressures were normal. Since I couldn't see my phone at that time, I dropped the questioning. I came home and googled effexor. Side effects: Increased pressure in the eyes. After cataract surgery I was on hypertensive eye meds because my pressures shot up for several days. The meds are not fun. They have their own set if side effects. I hate cancer right now. I take letrozome and ibrance. Effexor has been a huge help controlling the side effects i have from letrozole. Now it is causing other issues. I am trying to get through knee surgery and now this. I just want to quit everything right now. Whi h by the way I know is a stupid thought because I will feel even worse if the cancer comes back. Just frustrated and feel like I have another Dr. that just doesn't get it.

  • irishlove
    irishlove Member Posts: 587

    @brutersmom Retired licensed optician here that worked with optometrists and opthalmologists, too. I have borderline high pressure of 22. Doc was concerned but I've made the decision to stick with my cancer treatments and if the pressure rises higher, go on the drops. I know the potential for side effects is possible, but not like the potential for burning thru cancer treatments that may not work. Just my humble opinion. If you are super concerned, have a visual field exam to see if you have any deficits in your field of vision, try to have your eye doctor determine what form of glaucoma you may have and be sure you see a opthalmologist for treatment plan.

  • brutersmom
    brutersmom Member Posts: 958

    Irishlove thanks for the input. My eyes site is 20/25 and my peripheral vision is very good. They are doing tests in 2 weeks. I have been under a ridiculous amount of stress and my BP is high. I wanted my PPC to adjust my BP in June he said let's wait an see what happens. I think like all the hospital docs when I was in the hospital figured I wouldn't be around. I don't know. For some reason the optometrist wouldn't tell me my numbers which I find annoying. They were 18 and 19 in April. Plus I am not sure I want an optometrist treating me if it does test positive for anything. I was sensing something today but not sure what. I have been seeing the Dr for about 40 years and I am not sure why I feel the way I do today.

  • irishlove
    irishlove Member Posts: 587

    @brutersmom Sensing something off visually??? Is it possible it's an painless migraine with an aura? 18 and 19 isn't a pressure high enough to be worried about. Is your glucose good?? High BP really needs to be under control. Well I guess you showed them that you will be around for a long time to come. So proud of you! As for treatment plan, no to optometrist treating glaucoma, yes to Opthalmologist. I'll be thinking of you, best of luck.

  • brutersmom
    brutersmom Member Posts: 958

    Irishlove All I know is they were high. I have no visual issue, no pain. Lots of stress. My husband is having issue. In an hours time he became profoundly deaf in one ear partial hearing loss and dizzy and I need to have better control of my blood pressure. Sugars are good, switching oncologist. No sensing something with the Dr. He told me BP, my meds, and stress don't effect eye pressure but I have read that they can. That some of the newer studies are showing they do. Effexor can cause a glaucoma. If it is I have zero symptoms

  • sunshine99
    sunshine99 Member Posts: 2,723

    Mods, thank you for ths info on how to update my profile. I’ll be working on that soon.

    I can’t see who mentioned the Disalbed Parking thing, but I asked my PCP to sign the form for me, which she did, with no problem. I walked into the DMV with my form (using my cane, which got me to the quicker line) and was out within an hour with my hanging placard. It’s good until 2025. I don’t use it all the time, and I actually don’t even drive, but it’s nice to have. I was kind of embarrassed to even ask for it, but I got over it!

  • brutersmom
    brutersmom Member Posts: 958

    Sunshine99 I am glad you got your handicapped parking hanger. I have thought about doing that because of my knee but I just feel guilty taking a space because I know there are people worse of then me.

    Tonight I am feeling even more frustrated then Monday night. I am so tired of people making assumptions when they don't have all the facts. Today I got a call from a surgical supply company. My orthopedic surgeon ordered a standard walker. The sales person called me to tell me they received the order and let me know the they did not order one with wheels. They wanted to know if they should call and get it changed. I asked why. It is better to have wheels when you have knee replacement surgery. She said she didn't know but she saw I was 71 and that standard walker were heavy and you would have to lift them to walk. I asked how heavy it was and she said 6.5 pounds. That ok. I was really planning to use crutches but I wanted the walker to keep my 19 pound cat from jumping on my leg. She did not think that was funny. I then left for the gym where I did 55 lb. barbell rows , 35 lb. Barbell bicep curls and other things. To bad it is cold out or I would wear shorts and a work out shirt to pick the walker up.

    I feel like people in the medical community lately are to quick to come to conclusion with out having all the facts.

    .

  • dulcea
    dulcea Member Posts: 216

    Well everyone, I'll be joining the Verzenio message boards soon. My second opinion doctor suggested that I start on that instead of continuing with the Ibrance. I am waiting for her notes but my MO explained that Ibrance was the first CDK 4/6 inhibitor approved so most everyone starts with that. The SO doctor suggested that Verzenio has better results (against a placebo, not necessarily Ibrance).

    I also wanted to let everyone know that my liver blood tests became pretty bad on Ibrance, but since I had to take a break due to neutropenia, my liver tests normalized. The MO said that Ibrance caused those bad liver numbers. I asked her if it can cause liver damage and she said "no", but I don't believe her since that is not what the literature says. I expect Verzenio will cause the same neutropenia and liver problems since side effects are similar with all the CDK 4/6 inhibitors. I'm sure I'll be experimenting with the right dose for me. Ugh. My point is, Ibrance can cause liver problems, which was a relief to know that my liver was not failing!

    As for the tramadol, I have never experienced constipation on it. When the doctor first offered it to me, I declined it because I was afraid of becoming addicted. I finally agreed to it and I can't begin to tell you what a game changer it has been for me! Not being in pain 24/7 is amazing! I am able to exercise again which is good for my back and has helped me. I do think it has a tiny bit of an antidepressant affect, or maybe it's just because I'm not in excruciating pain all the time. Anyway, I only take it when I need it and sometimes I only take 1/2 a pill. Don't be afraid of living with no pain!

    Good luck everyone. I'll check back to see how everyone is doing.

  • divinemrsm
    divinemrsm Member Posts: 6,614

    bruters, I know so many active people in their 70s and 80s. I had a line dance teacher who was 82, not an ounce of fat on her, and she could dance circles around the entire class. Another 70-ish woman I know was having a knee replacement and her doctor wanted her to be aware she’d have to commit to physical therapy to recover. I asked her if she told him she’d do her best to squeeze it in between aerobics, line dancing, swimming at the pool and mall walking. This woman barely slowed down, even in pain!

    So yes, some people see an age number and make wrong assumptions. I like your idea of showing up in workout clothes to pick up the walker! Lol

    dulcea, I hope you do well on the Verzenio. My liver numbers were terrible when I was on Ibrance and Verzenio and also recovered when I left them and went on to new treatment.

  • chicagoan
    chicagoan Member Posts: 1,060

    Brutersmom-I can totally relate to the assumptions medical people make without seeing you. After I broke my leg, I had absolutely no problem navigating on my own with a walker, etc. Then the hospital social worker told me that a physician's assistant who had never bothered to see me decided I needed to go to a rehab center because I was 64 with cancer! I went ballistic-luckily a few pickleball friends were in the room and attested that I had great support and could easily come home. I was threatened by the medical person b/c I swore but I did get to go straight home with absolutely no problems. Hate it when people stereotype instead of considering the individual.

    Dulcea-Interesting to hear that you had liver problems on Ibrance. For the first time ever, my liver numbers shot up on my last blood test. I'm going in again on Monday to have new blood work done. I'm hoping it was some weird fluke but maybe it is the Ibrance after all these years. Hope that Versenio works well for you.

    Happy Thanksgiving to all my American sisters!

  • brutersmom
    brutersmom Member Posts: 958

    Delucea. Good luck on verenzo. Hope it works well for you without serious side effects. We all react differently to different drugs.

    Devinersmrsm. Bruters was what I call my boy Brute. It was my daughter's dog but he chose me and we had a special connection. He was and oversized rat terrier and an amazing mouser. Brings back fond memories. It is funny what you said about PT. I actually was talking with a coach yesterday trying to figure out how long to freeze my membership after surgery. She said 2 weeks and then we both started laughing. I am still thinking about going right after the gym all hot and sweaty

    Chicagoan. I hope everything is normal on your next labs. I plan on making sure the Dr in January is not assigned to me or I might have an attitude. Fortunately the the Dr. Physican assistant knows me and I shouldn't have that problem. If I get the Dr I had when I was admitted for cancer all bets are off. My paper work says that the physical therapist will help to determine if I can go home.

  • brutersmom
    brutersmom Member Posts: 958

    HAPPY THANKSGIVING TO MY US friends. We do a breakfast. I will be relaxing the rest of the day. Enjoy the day.

  • aprilgirl1
    aprilgirl1 Member Posts: 800

    Happy thanksgiving to all in the US! I am thankful for all we learn and share with each other.

    Brutersmom, I love how strong you are - literally! No one should judge us by our age .

    Dulcea, hope V is better on your liver enzymes .

    chicagoan - I've only had my liver enzymes elevate once in 4 years and it was unusual for me but not super elevated. They came back to normal the next week. Hope yours are just a blip:)

  • brutersmom
    brutersmom Member Posts: 958

    Aprilgirl1 I started working out back in 2017 after I stopped arimidex dur to unbearable side effects. My surgeon suggested it for both health reasons and because studies were showing that in cancer it helped prolong reccurence if I was one of the unlucky 30%. The type of cancer I have has about a 95% recurrence rate even with treatment in 3 years. I started doing everything modified. I took cardio classes at first. The coaches and class members were all so incouraging and helped with modifications. I then started weight lifting. I was pressing about 75 lbs and squating 90lbs. Covid messed things up a bit. I came back, building my self back up until my knee went. That happened while walking through the gym. Crazy. I have had to lighten my weights to keep going. I can't waitt to get back to life again. I just looked up the surgery I am having. It looks like I am getting a customized knee. I go Monday for a CT MAKO scan. The info said I should be walking with a cane in one week and except for swelling, independently in 3 weeks. That is pretty exciting. Exercising with people makes it so much more fun. The instructions and coaches are so non judgemental and encouraging and it carries over to the members.

  • mc22
    mc22 Member Posts: 23

    Happy Thanksgiving to those in the US. I'm very grateful for this community too!

    I've been reading back several pages.

    Sunshine, I'm very sorry to hear that you're dealing with progression and I'm thinking of you. I hope your team gets a plan in place quickly that is easy on you and resolves the issues that you've been having.

    Aprilgirl, thank you for checking on me a while back. I'm feeling better after having covid and seem to be fine.

    Dulcea, I had mildly elevated ALT for several months when I started Ibrance. It did eventually settle into a normal range. Prior to that, I was unable to tolerate Kisqali due to extremely high liver enzymes. I hope Verzenio is easy for you to tolerate.

    Chicagoan, hope the elevated liver enzymes are a one time thing.

    Brutersmom, I think there's a good chance that you're more fit/stronger than the person who called you about the walker.

  • dulcea
    dulcea Member Posts: 216

    Thanks everyone for the well wishes as I venture into Verzenio world. Quick peeks into those side effects seems like diarrhea is the worst. Great.

    @divinemrsm Thanks for sharing your experience with your liver issues on Ibrance and Verzenio. Can I ask why you changed treatment from both of those? Was it due to liver issues? I just really don't like the idea of something that's supposed to keep me alive messing with my organs!

    Since I have liver mets, I almost lost my marbles when my liver numbers went up. Thankfully, I had to stop Ibrance for a while and we could see that's what was causing it.

    @brutersmom I miss exercising too. My back has had issues for years but I have worked through it. Lately it has become worse. Since I have mets to the exact same spot as my disk issues, can we assume it's cancer progressing or my stenosis getting worse? That is a whole other story I need to figure out. In the meantime, yoga on my bedroom floor will suffice.

    @mc22 Glad to hear there can be some normalizing after our bodies get used it a drug.

    This is a crazy ride!

  • divinemrsm
    divinemrsm Member Posts: 6,614

    dulcea, I quickly experienced progression on both Ibrance and Verzenio so I moved on to other treatment. It had nothing to do with the liver. Prior to that, I’d been on arimidex only for 7-8 years; Ibrance was not on the market when I was first diagnosed in early 2011. Some do so well on them but Ibrance and Verzenio were rough for me.

  • brutersmom
    brutersmom Member Posts: 958

    Dulcea. Have you looked at any of the chair exercises on YouTube. Not sure you can doe everything but some of them might be helpful.

    I was working on my schedule for December. Seems I have a lot of appointments for knee surgery. I saw that the dr ordered a special CTSCAN. I am going to have MAKO knee surgery which became available in 2023. That means I will have robotic surgery with 2 smaller incisions. No cutting of the muscles and custom fit knee. Recovery time from walking with a walker is 3 days to a week and 2 weeks with a cane then walking independently. I guess I am really getting my walker to keep the cat off my leg.😹😹😹

  • dulcea
    dulcea Member Posts: 216

    @divinemrsm thanks for the info. I'm glad you have finally found the right treatment for you for so long. I hope I can do that quickly too. So far, Ibrance hasn't really been that nice to me with these side effects.

    @brutersmom I do some easy exercises at home, but I miss going to the YMCA and being part of an exercise group with a fantastic instructor. I was weight training and balance training with some cardio thrown in. I hope to get back to that because it's helps me physically as well as mentally. Thanks for the chair idea.

  • divinemrsm
    divinemrsm Member Posts: 6,614

    I guess since the medical personnel we deal with know our date of birth, some of them draw wrong conclusions of our capabilities based on age. Take away that one piece of information—age—and how old would they think we are? I have had many medical professionals tell me that to look at me, no one would have a clue I was dealing with mbc. But on paper, it apparently looks different.

    I don’t think 60s is old at all. And I know so many people in their 70s and 80s still very active. I see many at the pool in the summer where a couple hours are for adults only. Two of the women who come are in their 90s! One man, age 76, starts each day swimming 15-20 laps. Oh, and last year he got his life guard certification! Yep, now he works a few days a week in the summer keeping an eye on the rest of us seniors. Some show up with walkers and canes and even wheelchairs and shed them at the pool steps as they get into the water. Some of the seniors do water aerobics, some walk in the pool, lots of us float around and chat. I know many seniors from going to the Y as well where pickleball is a major draw. I also know quite a few people still working in their 70s including some relatives because they like the work they’re doing.

    Maybe those in the medical profession should take some field trips to get out and about to see that plenty of senior citizens are active. We seek medical attention to keep going!

  • brutersmom
    brutersmom Member Posts: 958

    Devinmrsm. I like your thinking.

    It seems like I am always needing help. I have another sinus infection. I probably should have gone to the Dr last week. I have been on ibrance and letrozole a 10 months. I also allergies. My neutrophils fall to around .5 or .6 every month and take two weeks to get back up to above 1.5. Usually around .9 at the end of the first week. It seems I keep getting sinus infections. I think I have had one in about 4 years. Now I I have my second one in 2 months.  I use nasal moisture spray, and nasal rinse because my nose is always dry and that makes it run. What else can I do to keep these infections from happening. This one has my voice box infected. I lost my voice yesterday. My neutrophils are probably about .5 or .6 today so a Zpac was out.

  • chicagoan
    chicagoan Member Posts: 1,060

    Hoping my liver blip was nothing. Had bloodwork today-ANC was 1.1 and liver numbers were normal so on to Cycle 92. Phew! I feel like with Ibrance, I can sort of forget I have cancer. None of the other treatments seem like that.

  • tanya_djamila
    tanya_djamila Member Posts: 1,540

    Chicagoan great news!!!!

  • mc22
    mc22 Member Posts: 23

    Chicagoan, so happy to hear this!