Ibrance (Palbociclib)
Comments
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Jen, I'm with you, but I'm just too chicken to reduce the dose.
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Pat- Thanks for the comments about phytoestrogens or xenoestrogens from foods and plastics, its not surprising these compounds can have effects since our bodies are true estrogen deserts and it doesn't take much for them to register some estrogenic activity from foods, etc. For me I avoid estrogen creams and soy supplements, try to eat organic ,and do not microwave plastics. However, its helpful to remember that the drugs ARE working, and they were tested in clinical trials on patients who ate regular food and did regular things, so I try not to worry about all this stuff...
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Cure-ious, thank you for your comment and for reminding us that the drugs work on regular people and diet. I have enough emotional worries without spending all of my extra energy and time on extra types of food and supplements. I do what I can, am careful, and eat well, but I think my family also likes that our meals at least appear normal. It helps them not have to be reminded of my disease every evening when they get home from work. Just my contribution to their life, and my 2 cents...
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Amarantha, good luck with PET results and thanks for sharing your fever-dream story!
Blueshine, with a 2 week break, good labs after 1 week in your cycle sounds about right. That's when you've coasted off the last of the prior cycle and haven't hit the full force of the new one.
Jaycee, glad you made the change and best of luck with the new MO. It's critical to have a trusting, supportive relationship.
Jen, so sorry to hear you're feeling bad. A dose reduction seems like a reasonable decision. I've read posts from others who did it for QOL and it's made a night-and-day difference.
I just got back from spending a few days in San Francisco. The fog machine was cranked up to high and DH and I spent the mornings lying in bed listening to fog horns. It was beautifully melancholy. Wishing everyone a lovely holiday weekend.
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Cure-ious, I’m too chicken too so I’m trying to get my hands on data. If a well-designed retrospective study shows that people who go down in dose get clinical benefit and stay on it longer with PFS, then I’m in. I won’t do it just on the few times I’ve seen it mentioned on FB. Happy to share what I find and to coMb through any studies people have found on this topic.0
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Jaylea, lying in the bed in foggy San Francisco listening to fog horns sounds beyond BLISSFUL....heaven!
Jen, we'll all be glad to read whatever data you may find on dose reduction. Good luck with the search-
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Jen, I haven't heard any reports that lowering the dose gets you any better PFS results, just that it works as well. However, the neutrophil count may play a role, for example if the neutrophil count goes too low, it may mean the individual is better at metabolizing the drug- for those where it does not go too low, then maybe they don't metabolize it as efficiently, in which case they should stay on the higher dose?
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Just thought I would check in. I had a repeat CBC yesterday---1 week off Ibrance ( first cycle ). My counts were even lower !!!! My ANC last week was 900, yesterday 400 !!! Going to continue being off Ibrance. We started med at 125mg and have decided to drop to 75mg when I can restart it. MO thought it may have hit me hard due to my small stature--5'1" and 130 lbs. Has anyone else seen such a drop in counts when first starting this med?? I read in last post that could mean I am metabolizing the drug better than some.
My MO didn't want to give me Neulasta yesterday. He wants to watch what my body naturally does for accurate info for the next dose we give.
Thoughts......
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Jaylea - I'm having fog horn envy! That sounds so romantic!
From personal experience only, I know that I would have completely quit Ibrance over two years ago, if they had not lowered the dose. My Qol was in the toilet. It took everything I had just to get out of bed and dressed everyday. Usually, I never made it any farther than the couch. I was always slightly nauseous, always had acidy stomach, my migraines became more frequent and I always felt foggy. For me, that was an unacceptable way to live. My Dh and Ds thought I was dying. After 5 months of this, I told MO that I refused to take it any longer. He persuaded me to at least try the 75mg first. 22 months later, I'm going strong. It took me a good 3 months before I started feeling like this was doable. My feeling has always been that quality is more important than quantity. I have not made any of my decisions lightly, and I always have my Dh and Ds support. At the young age of 54, I did not even dare to believe that I would see 60. Here I am at 60, thinking that a frisky 71, sounds like a great goal! For me, the key word is frisky!
Hugs and prayers,
Claudia
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Frisky is good, girls (and boys)...and you're going to make 70 and beyond, Claudia!
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Candy - after my very first cycle my counts were 300 (0.3) after a week and a half off the 125mg drug. By the second week off they crept up to 0.6. Third week they were still under 1.0. I had to take a full month and 3 days off before my neutrophils finally hit 1.3. MO put me on 100mg for the second cycle and was better tolerated (no mouth sores) however mid way I started the G-CSF injections to carry me through because I was at 1.0 by day 10. The week before I completed cycle 2 my neutrophils were 2.5!! Thanks to the Grastofil. Right before starting third cycle though they had dropped to 1.5. And then seven days into cycle 3 my neutrophils were at 0.6 again.
Back to the bone marrow boosters right now. I'm so sore. My DH Thinks that weight has to do with it. They weigh us before chemo and do dosage based on that. So wouldn't this work the same? I'm 5'2" and 107lbs. (Lost 20 in the last 6 months due to not being able to eat properly after radiation esophagitis, bronchoscopies and mouth sores) My MO thought I would tolerate because I'm young (34) but alas that hasn't been the case.
I wouldn't be surprised if my MO drops me to the 75mg for cycle 4. Though will depend maybe on my scan results at the end of the month I'm sure.
Like Jen, I'm curious about the data on PFS with lower doses. My body clearly doesn't like the 125, 100. Hoping that means the cancer is being kicked back though!
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pat G get well soon. That story was amazing.
I love to hear about all of your successes on Ibrance. I
Take Care All
tanya
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I have been at 75 mg for almost the entire time ( except the first couple of months) and have been doing well. I have a consultation scheduled at Dana Farber with the head of the MBC program so plan on discussing the dosage I am on, studies done and her thoughts on lower dosage. I will let you all know what she has to say if interested.
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Anyone else get frequent UTIs? I drink a lot of water and am conscientious with personal hygiene. Any other tips?
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Searching for answers to Jen's question, I found this. It does not answer her question but I found it really interesting. I always find interesting things when looking for something else. I'll keep looking, Jen. Sometimes I think the trials lumped everyone at any dose together when looking at PFS. I thought that was why the guidelines for lowering the dose were so specific. If you stayed within those guidelines, your PFS data counted. Maybe some trials did that and some didn't. They should have at least kept track of people on different doses. I keep looking and don't find it. I looked when I dropped down to 75 mg. But the difference in QOL was so dramatic, I'd never go back.
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I have more questions for all. When do you do repeat CT scans ( mine of abdomen for liver mets ) to check status? My insurance notified me by letter when they would pay for another CT--- at least 3 months after last one. How long should you be on Ibrance to check if it is working? And if you have to hold med for low counts should you hold off on CT till can tolerate med for a time? My MO has not mentioned CT yet. I would think to see when and if I tolerate the lowered dose. Or should you do CT's every 3 months regardless of meds just to check status of things? Any other tests/ x-rays to do but CT?
Sorry for so many questions. I need to direct these to my MO, and I will, but good to hear what others have to say.
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Singlemom, I'd love to hear what you learn from Dana Farber and if you're pleased with your visit. I want to figure out a second opinion option in advance, for when I have progression. Hope not for a long time. If you're pleased, I'd love to have name, etc for this person (unless impossible to see without connections, etc).
Candy, I have been on Ibrance/Faslodex for 12 months. I have CT scans every 3-4 months (three times so far) and I had a bone scan the first two times as well. We've (this group) been told that it can take 7 mo+ for results from the Ibrance to become apparent. Don't be quick to stop it; give it time to work! Some oncs use PET scans, too. I don't expect more bone scans, as the onc said that was more for a baseline measurement.
Good luck!
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so I realize there is a discussion about whether or not we should take aspirin, but what about ibuprofen? Sometimes it helps me tremendously with the pain
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Jaycee, do you mind sharing how your SEs changed when you went on the lower dosage? And thank you so much for looking with me for data and studies. So very much appreciated.
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I had terrible abdominal pain and diarrhea when on traditional chemo after mastectomy. I stopped after two rounds. (I ended up in the hospital with colitis.) In my second cycle of Ibrance, those symptoms started. I asked my MO if I could change to 75 mg. He said ok. I just draw the line at uncontrollable diarrhea. I know people on here sometimes seem to find it amusing (a way to get through it, I suppose) but believe me, it is not. It totally stopped me from living my life. At 75 mg, that completely went away. I probably had other se's but none of them were debilitating. I remember a few pretty bad mouth sores. If the 125 mg is making you feel that bad, could you try going to 100 mg and see how you feel? My MO (my FORMER MO) said I could "work my way back up." What about taking a break? It was so worth it to me to drop down the dose. I know you must be younger than me (who isn't?) so I can't "walk in your shoes" but you need to feel good again. It does amazing things to your mood and well-being.
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Candy, my doctors do PET/CT's. I started Ibrance 4/16.
PET/CT were on:
Oct. 4, 2016
Jan. 18, 2017
May 17, 2017
Oct. 31, 2017
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Help! I didn't know that there was discussion about not taking aspirin. What am I missing? I take the .81 daily, and my onc is aware of that. He's never said anything about it.
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I’m wondering if 75 mg 21 days on and 7 days off is better than 100 mg 21 days on and 14 days off? Anyone know?
I always need 2 weeks off even with their new ANC cut off they gave me of .9 instead of 1.0. I was told that I have permanent damage to my bone marrow from the chemo and that is partly why it’s hard for me to recover my ANC. My white count never got close to pre-chemo levels even before the Ibrance.
Jen- I feelmuch better on 100mg than 125mg. I only took two weeks of it in cycle one- sooo tired, mouth sores, insomnia are what I remember most.
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The more I hear from you guys about your highly improved quality of life on 75mg Ibrance, the more excited I get! I've been off 100mg since the 24th of November (flu, pneumonia, etc.) and, now that my brain is less foggy, my heartburn is almost gone and I don't get tired just walking to the bathroom, it's going to be hard to begin taking those capsules again! I have moments when I consider just sticking with the Arimidex and XGeva and living my life. I'm 68 years old and have lived far longer with breast cancer than I ever expected....24 years! However, I'm pretty sure I'll give the 75mg or Verzenio a chance.
(I haven't forgotten the trial going on at MD Anderson where people are taking 25mg + a trial drug that keeps the cells from eventually resisting the Ibrance. We may all eventually be on that protocol!!)
My husband and I have had a long discussion about me having the option of stopping treatment any time my quality of life dips below what I find tolerable. I'm thankful he's not one who thinks we have to stay in a panic about extending my life. We have always believed God knew how long we would be here before we were born and that we aren't going to die a day sooner than that. If I had children who weren't adults yet or if I was raising my grandchildren, I might be more anxious about dying and I certainly don't fault anyone else for their own feelings on this subject. I spend a lot of time saying and doing things (without being obvious) that will prepare Mike for life after Pat!
My mother died two months after her diagnosis with Malignant Melanoma when she was 56. When I was diagnosed at 44 and, naturally, thought I had just months to live, I was much more in a spin. (I even looked around for a potential wife for Mike.....Ha!) But here I am, having lived a joyful 24 years past that and very grateful for any time I have left. Who knows? I may even start to get out of my pajamas again by Spring (after ordering all these new ones!)
Love to all of you as you find your way on this journey. Happy Week-end!
PatG
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Jaycee and Bigbhome thank you both for sharing your experiences with higher versus lower dosage with regards to quality of life. Reading your descriptions I realise I am not as hard hit as you were by the higher dose, but the discomfort level is rising, just realising I didn't get dressed until shortly before dinner tonight, it did seem like to much effort, furthermore there is a wound in the tip of my tongue which feels like it would like to begin splitting down the middle and I will turn into a lizard. It is encouraging to hear that more time could be needed to give Ibrance a chance to work. I do hope it hurries up and starts working before my right breast turns into one big lump. (Also wondering if they would disposed to consider a second mastectomy ? I'd love to get this off of me.)
Jaylee I loved hearing about the foghorns in San Francisco. I grew up on the SF bay, in Berkeley, grew up hearing the foghorns mournful singing across the bay in the thick fog.
This tuesday I traveled by train to beautiful Bordeaux to review a concert and now it my review published, I feel so proud!. Its really fun to whoosh through the countryside on a train, even if it was grey and rainy the whole way, and then enjoy music I have never heard before in one of the world's most gorgeous opera houses, I feel so important to have a press pass, this is all so new to me, and introduce myself as a "journalist". There is a bit of risk I suppose in being proximity with many people on the train, and in the opera house, which may be how I got pneumonia last May. But by golly it is so much fun. I take a huge long nap on arriving in the new city, and gather my forces. Seeing a new city, and being out in the big world all by myself without darling husband feels refreshing, a sense of joy overcomes me for a moment. Then of course, upon returning I am so delighted to see him again. So I thought I'd share a bit of beauty
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amarantha, please post your review. I'd love to read it. We would love to see it. I laughed when I saw you lamenting about not dressing until dinner time - I realized I haven't been dressed since last Saturday!
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Pat, I bet it's in French.
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Amarantha, I love hearing about your solo travels. It gives us all hope that we can still be independent. And I love the pictures! My one trip to Rome and Florence before my diagnosis was truly memorable. Your photos remind me of that trip. We purposefully took it before either of us had any problematic dx, and I am so thankful we did. We had no idea what was coming 2 years later...
Pat, thank you for sharing your communication with your husband. I agree that QOL is most important. I am still doing pretty well on my 20th cycle, but every small setback starts my stress machine whirring. I will push through as long as I can.
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IntoLight: I also experience frequent UTIs or something that feels like them. However, no bacteria are involved, but the sticks are positive for haemoglobine. The pain always occurs, if I drink too little or take too long breaks between drinking, and eventually fade, when I drink a lot of fluid then and keep my body warm. I got the feeling that the Ibrance is somewhat problematic for all kinds if (mucous) membranes in the body causing inflammations which, in this case, cause symptoms of an UTI. I need to drink 3-3.5 litres of fluid every day to avoid this, mostly warm, basic liquids like herbal tea.
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I have felt lucky that my SE “haven’t been that bad.” A mouth sore every now and then (usually if I have too much citrus). My sleep isn’t good but that good be the letrozole too. My blood counts are great (makes me wonder if I’m metabolizing it well). The SEs that are truly hampering me are bone weary fatigue that takes away my motivation; brain foginess; and hip and foot pain (although I’ve figured out a way to work those out).
I do overdue it most days - I work full time, I’m a single mom, there’s always a doctors appt or some cancer related thing to do, my commute is about 2 hours a day (round trip) when I go into the office.
This weekend, I need to decide what kind of change at work will help me because I am not being effective there, at home, with my family and friends, for myself. I’m super lucky my employer will support an alternative schedule. Short of not working at all, I’m thinking about short days and more days at home
Is the accumulation of the drugs the issue? I’m afraid to take a break where I’m off treatment even though letrozole alone was standard of care for many years. It’s so frustrating and scary to decide what is best to do.
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