Ibrance (Palbociclib)
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aprilgirl, congratulations on your stable scans! I also recently got stable results on scans and am exactly like you: renewed energy for the next several months. I have learned to (mostly) get on with the task of living while things are good. It's like right before the scans, I have that mbc window open while I'm preparing for the unknown. If I get stable results, I minimize the window on mbc so the rest of my life can take center stage. Should I need to address mbc before the next scans, I can click open that window. But I don't want it to be the main focal point if I don't have to. I'm always aware of it, yet I can move on to other things. It's like the expression, “Get to gettin' while the gettin's good!"
I get scans every four months now. But I can understand wanting to know asap if there are changes.
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Congrats Aprilgirl.
I still read this Thread, as I was doing the Ibrance Dance the first 4 years of my MBC journey. I have since moved on to 2nd line therapy with Lynparza. I have been stable on Lynparza for over a year now, and at my last scan in early February I asked my MO to change to 4 month scanning from 3 month. She said ok. So it was my choice and I am feeling ok with that for now.
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Thank you, divine for posting about the upcoming changes. I went to my "Favorites", deleted a bunch that I haven't looked at in a long time and then printed the list into a PDF. I'd be really upset to lose my list of Favorites.
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Wonderful news on your latest scans, Aprilgirl! Yes, let the surge of energy and relief begin. My MO has me on six month scan intervals now, and I do feel some anxiety about it, but also trying to feel some relief. It's that delicate balance that I think we all go through. Fortunately, my medical center can get me in quickly if I'm ever in need of sooner scans.
Divine, wonderful news for you, too! And thank you so much for sharing that info about the upcoming...hmm, not sure which word I want to use to describe it...change? Disaster? Shitshow? I hope we don't all lose contact with each other.
RK, so good to see you here! Hope you are doing okay, I think you might have mentioned your last scans were okay but your numbers on blood work were going up a little bit?
Spookiesmom, good to see you, too! How is Spookie doing?
I definitely don't post as much since last year's debacle with the site update, but I do love checking in here and reading about my lovely peers. Just started my 26th cycle of Ibrance, remembered how I came here for support and recommendations on cycle 1 and you were all so lovely. Remembering sharing tooting stories along with Rabbit...now it seems that I don't toot nearly as much. Is that a bad sign, I wonder? Is more farting associated with a better response?? Lol 😆
Love to everyone!
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question. When I was first diagnosis and started on an aromatase inhibitor I had a bone density test and a vitamin d level. It has been 6.5 years since I stopped anastrozole. For the last 2 months I have been taking letrozole with Ibrance. Nothing was mentioned but the doc was more concerned with my breathing then bones the last 2 months and of course getting me stabilized on Ibrance. I am wondering if I should ask for these two test on my next visit. I am an active 70 year old but and very active.
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Aprilgirl -I don't know how I missed your post. Happy 40th month! Amazing. Truly amazing. Regarding scans, I think that you have to do what helps you sleep at night. There us no right or wrong answer. Here’s to many more months of doing the Ibrance dance.
Sf-cakes - Oh how I enjoyed the tooting stories. We all need a laugh. And all I have to say that what’s going on in my house (bathroom) is no joking matter. This cdk2 inhibitor I’m taking is rude. My water closet can smell for HOURS. I’m not exaggerating. I could get really graphic here but I’ll refrain. I don’t dare use the guest bath anymore. That could be really embarrassing should I have someone stop by unexpectedly. I’m getting a CT scan on March 16. No PET scans on a trial. They want scans at least every 2 months and no one’s insurance is going to pay for that. I’ve started having pain in my upper left arm. Actually, my shoulder blade, upper shoulder and arm hurt but it feels like the pain is centered in my arm. The arm pain feels like bone and the other areas feel more muscular. The pain is reminiscent of my femur pain which eventually led to my mbc diagnosis. Fortunately, it’s still at the stage where I’m not in pain 24/7 but it bothers me about half the day and it’s worse at night. It may be just old age 🤞🏻but I’ll be glad to have it checked out. My MO said that if the CT doesn’t get enough of my arm, then she will order an MRI.
Brutersmom - I can’t comment on the bone density test. I’ve never had one but it doesn’t hurt to have your vitamin D checked. They may need a separate tube for that test so if you have your blood draw right before seeing your doctor, you may want to mention to the tech that your doctor might order a Vit D test. I get plenty of sun year round, take calcium + vitamin D based on my oncologists suggestion and I still tested low for vitamin D. So it’s good to check.
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Thanks rk2020, I think I will just ask for them to be added to my next blood work.
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Spookie and I, and Kris and the cat are doing well. Yes, I miss Rabbits stories too. I’m not on anything right now, I won’t do the shot, and can’t take ibrance by itself. So I had my yearly scan and nothing lit up.
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Spookie - That’s great! I hope you have many “dim” scans in your future
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This can give us a giggle, Kris and the cat. Note cats paw.
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ohmygosh, Spookie! Adorrrrable!!!!
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so cute!
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Spookiesmom - Real cute picture. Kris reminds me a lot of my old dog "Sally" whose been gone now for probably 18 years. She was a black and white version of this one. Still miss her terribly. The cat reminds me of my brother's now gone cat known only as "Kitty" or "Sweets". I miss her too, because she came into my father's yard out of nowhere a few months after my mother died and we were all still grieving. My father and brother kept the cat and stayed in the family home for a few more years with "Kitty" and then my father died. "Kitty" helped my brother (who has Asperger's) transition to a retirement apartment after my father's death, but about 2 years later, she unfortunately got hit by a car. Lovely photo that brings up bittersweet memories. I want to hug and pet both of your pets (smile).
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I have been using 125 mg tablets since last 14 cycles, this month I received capsules, am wanting to kno if anyone has had any adverse reactions from capsules ?
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malebreastc- The tablet formulation does not contain lactose (dairy) or gelatin. Other differences are that you can use a pill caddy for capsules and they must be taken with food.
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I got my blood work this afternoon but no response from the oncology nurse. My neutrophils were .82, white count 2.7 and red count was 3.95. I was to start cycle 3 tomorrow. My last test was 11 days ago. My neutrophils were .79 with 3 days left on the cycle. Total white cell have been about 2.5 since starting Ibrance. I am sure they will give me at least another week break. This is only my second cycle so I find it very confusing.
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brutersmom, hopefully you will hear soon. Can you give them a call to ask if you're OK to start your next cycle?
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sunshine99. I have had a call into them since noon. No response. They will probably call in the AM. I have to wait until "they" give the ok for the prescription to be refilled. I get my meds through the hospital pharmacy.
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Brutersmom, hopefully you will hear from your oncologist/oncology office soon. I often had to hold for an extra week and retake a blood test when I first started Ibrance due to low neutrophils (under .80). I had 2 dose reductions in my first year on Ibrance due to low white blood cell counts. The past 2 years I have been on 75 mg and have not had to delay starting. My oncologist and I have an agreement that as long as my neutrophils are over .80 on day 28 (so with 7 days off of Ibrance) I can restart. It can be dangerous to have low white blood cell counts, SF-Cakes was hospitalized early on in her Ibrance experience due to a complication from low whit blood cells if I remember correctly?
Hope everyone else it doing ok.
Dancemom, haven't seen you in a while, hope all is well!
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- I finally heard back from the oncologist office. The doc decided to lower the dose to 100mg and I will start on Friday. I see the oncologist next week so I will find out what his plans are. My CA27-29 has dropped another 10 points to 77 so that is good. We have not discussed tests so I am wondering what he will order since next month will be 3 months since I started treatment.
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brutersmom and aprilgirl I just finished my second week of my third round of 100 mg Ibrance. I started out at 100 mg. I am 73. My ANC was down to 75 after the second round. My doctor had me hold off 4 weeks while my blood rebuilt. In that time my ANC got up to 2.4. Now, after two weeks it is down to .98 and I am on hold again for three weeks. After that point she is reducing my dose to 75 mg. Maybe it is my age, but I feel she is being very cautious. My state of health is good. I haven't felt the effects of the neutropenia, except I have had to be more cautious in general about being around other people. Has anyone else had a similar course? I read that a lowering of dose doesn't make the med any less effective, according to recent studies. Hope this helps for comparison, and I would love to hear the longest anyone here has been on Ibrance.
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aprilgirl, you give me so much hope. I am so happy to hear how well you are doing. 40 mknths is awesome
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divinemrsm yay for your clear scans also! I love the thought of closing and opening the window. I am working in that
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Chicagoan 6 1/2 years! Wow! I am so new to this Ibrance game. That is so great
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Thanks Gigil! My oncologist takes a different approach from others I read about. I have been on 125 the entire time, even though my ANC is rarely above 1.0. It was tested the first few months-now we never test it before I resume a cycle. I have never taken a break except when I broke my leg and when I had Covid. She and I agree that if I am not getting sick or getting infections my low ANC is nothing to worry about since Ibrance merely suppresses white blood cells and doesn't destroy them like chemo. I feel really good most of the time-the longer I have been on Ibrance, the fewer side effects I experience. Hope I can stay on it for a long time.
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Chicagoan i think the concern was last month i was at 1.2 by the end of the break. This month I was .84. My hemoglobin also is also low. My kidney function and sodium were off on week 3 but they are normal now. My doc decided to do the tests differently this month. He said he need to see how I responded at week 1, week 3, and week 4.
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Brutersmom-I wasn't speaking of your situation-only mine. This was a bit in response to Gigil's concern that her doctor is being too conservative.
PatGMc-Are you out there? I miss seeing your posts. Has anyone heard from Pat?
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Chicagoan my apologies
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Chicagoan- Pat was last “seen” in May 2022. I sent her a private message some time after that and never heard back. I fear the worst.
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rk2020-I have checked from time to time for an obituary but nothing pops up. (Pat shared her full name in an article she posted). I hope she is doing well, making art and laughing wherever she might be.
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