Ibrance (Palbociclib)
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Rabbit, thanks for the laugh. I can relate to the turkey trot.
Cancer is mentally hard. I keep riding the roller coaster and would love to take a break. Thinking of those with upcoming scans, hoping you get good news.
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Thanks Simone80!
I have a PET coming up at the end of this month!
I wish you the best also!
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Thanks RK2020! Your flowers are beautiful - thanks so much for sharing!
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Hi Everyone,
I recently completed my second cycle of Ibrance and my ANC levels were too low (0.7) to start 3rd cycle yesterday. My MO agreed to reduce dose to 100mg, and wants me to start 3rd cycle this Friday (assuming they are approved and arrive on time). The nurse said MO is confident my ANC will go up and I don’t need to do bloodwork again before starting. I wanted to see what the thoughts are on this with this group. Should I go with the flow and just start my next cycle at the lower dose without doing bloodwork first or should I request labs first?
Also - Good luck to everyone with upcoming scans!
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SunshinDaydream - A lot depends on your recent numbers on 125. I couldn’t get past 14 days on 125 and after a 7 day break, my ANC was lower. This isn’t the norm, but that’s how I reacted. Same thing on 100 mg. I would take it for 14 days, get a blood test and then get another test after 7 days. My numbers always went lower after 7 days break so I took 14 day break. I’ve been on 75 successfully for 11 full cycles. Now, neither of my oncologists are too concerned about my numbers. I get a blood test once a month around day 25 because that just happens to be the day I get treatments and see my onc.
Back when I was struggling on my last cycle of 100, I did ask for an additional blood test just so that I knew where I was starting from when I started 75 mg. That gave me peace of mind. The downside of all those blood tests is that I’ve now developed some scar tissue. If I have a good, experienced tech, it’s not an issue. Yesterday, the tech had to try 3 times before she got my IV going. 🙁
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Bootsie7 and GoKale4320 - I also have experienced swelling in my feet and legs that has actually gotten worse lately. I am going to try to order some Brazil nuts like GoKale4320 had success with. I found some at my local Kroger but unfortunately, they were processed on the same equipment as wheat and I have Celiac disease so I have to look for some that have not possible been contaminated with gluten.
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I went for my monthly follow up appointment yesterday. Levels were good to go for another round at 125mg. I asked the ANP about the results of the Tempus test that I had blood taken back in February. After 2 nurses went looking for the results, they found out that Tempus didn’t do anything with my blood. The hospital clearly stated that they wanted a liquid biopsy done, but it never happened. So I had to have them take more blood to be sent off to the lab. I’m glad I asked about it.
My tumor markers showed up on MyChart today. One test showed a decrease of 4. The other one showed a 0.5 increase. I know that I should not obsess over the 0.5 increase on the one test, but I’m an accountant by trade and any number that goes up is an increase no matter how small. Deep breaths.
Hope my fellow dancers are doing well. Prayers for those who are struggling.
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- Hi. I am new here and just started Ibrance a couple of months ago. They keep stopping and changing the dose because of very low counts. It looks like a lot of people have the same thing. Hugs to all of you on the same roller coaster.
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Hi Kestrel, I'd rather be hiking too!!! Try not to worry too much about the neutrophil counts, they definitely go down but its not making you immunosuppressed, the way chemo does. CDK4,6 inhibitors put those cells into a sleep/senescence state, and they pick right up and start maturing as soon as you stop the drug- by contrast, chemo kills the cells and it takes weeks for them to come back so you get immunosuppression. In the clinical trials, Ibrance use was not associated with getting more flu or colds, for example. My MO prefers to have the ANC count over 1.0, but she also does not want me to miss too many doses, so there have been times when I have gone back again even below that..
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To all the Dancers, I’m going to ramble a bit but I have nowhere else to go. My dear husband is trying his hardest but his blood pressure is up and I know I’m the cause. 😢 I’m trying to keep my deepest fears private but I wear my heart on my sleeve and my eyes keep leaking down my face 😭
The story is too long to read so suffice it to say that for a couple of months, I’ve had a suspicion that my time on Ibrance could be nearing an end. Last Monday I saw my Wisconsin MO. He ordered a PET a bit earlier - on the 21st. He said if the PET shows progression (I had slight left sacrum progression on my last PET), since I’m on 75 mg, his preference would be to move to everolimus (Afinitor) and exemestane (Aromison). I had radiation to T11-L1 last February. We discussed radiation and he said it’s not his preference but he would consider it as long as the progression isn’t multi focal. I agree with that part. Then I went for my Fulvestrant and had my first Zometa without additional IV hydration. I thought since this is 5th round of Zometa and I took Claritan and slowed the drip, I’d be good. Not so.
So I was already in funky town (as Rabbit put it), I’ve been struggling with severe fatigue for 3 weeks now, I’m constipated (I never have that issue), I ended up with the Zometa flu for 2 days, my leg is keeping me from doing what I want to do, my lower back hurts and something is making me nauseous. I KNOW others have it MUCH worse but I think that all this, on top of my biggest fear, is too much. My biggest fear is not dying but dying a slow painful, feeling sick all the time death. There I said it. And I feel SO guilty that I’m taking away my husband’s happiness. I simply don’t want to live my days feeling like 💩. I’m not suicidal. I’m just sad. And VERY scared of the future. We are supposed to meet up with friends for lunch today, and outings like this usually take my mind off my problems. That’s not going to work today. I’m so sad. I can’t stop crying. I’m nauseous and don’t want to eat. How am I supposed to fake it when we are meeting at a restaurant? And I’m so fatigued that the thought of getting ready to go while nauseous sucks. I want to cancel but I won’t. I’ll put on a happy face and go but God help us all if they ask me how I feel. That will be enough to start the water works. Sigh.
By the way, if my PET does show progression, I will get a second opinion from my Moffitt MO and then make a decision.
Thank you for listening.
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RK - thank you for the feedback, it seems that I may be in a similar situation where my ANC is really low after the week off. I had labs done after week 1 of this cycle and my numbers were great and went up from the prior week, so I was hopeful it wouldn’t be a concern again, but alas.
Also - sorry to hear about the tech trying 3 times for your IV!
Another question - particularly for the long-timers - does everyone have labs done before starting every cycle, or just the first few cycles?
Thank you all for all the great inf
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I’ve been nauseous for the past 3 weeks. Feel like throwing up, but don’t. Can’t eat much. So not much in, not much out. Miralax really isn’t helping. Stopped ibrance. MO doesn’t know that. Stopped letrozole for a week, thought maybe that was the nausea. Nope. Have flush this pm, will chat with nurse. Don’t know what to do.
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RK and Spookiesmon, sending you both hugs. I don't know if it will help, but I found ginger tea with lemon helps me when I have nausea. I don't know what to say other than we are all here for you.
SunshineDaydream, I have labs done the last day of my 4th week in my cycle. They check to make sure the blood counts are good enough to start the next cycle.
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RK, lady, you pinpointed exactly why I'm in funkytown. Don't feel good. ( Zometa still makes me feel awful too for a couple days surprisingly even after 12 or so of them in spaced now every 3 months) And like you I'm scared. I don't and haven't felt good on the treatments (Ibrance, Exemestane, Zometa) for awhile, since Dec but i rallied a bit and now I'm back to feeling yucky. I'm a writer, an amatuer writer and I can't write most of the time. I'm too tired, too nauseated, and I hurt. I was mowing/weedwhacking almost half an acre entirely myself last year, even the year before, my first yr/spring with mets, this year is different. I was going to be all naughty and push myself last week, then I got outside and crashed on my overgrown lawn and cried because I couldn't do it, i told myself that i feel like I'm fading, like pieces of me are fading little by little. Writing, lawn mowing that i love so much. I watched my beloved mow the lawn and weedwhack quietly from the windows as he moved around the yard wearing my lawn goggles with tears streaming down my face. That should be me. Sometimes I don't know which makes me feel worse, how I feel on the treatments now, not being able to do things to a greater degree or having to answer questions about how i feel all the time. People want me to say I feel good/doin' good so I nod quickly that I feel good or I'm doing well when asked before excusing myself so I either don't ugly cry in front of them or scream at being asked how I feel for the millionth time. I wish i had the bravery sometimes to say what I say behind closed doors while venting to my beloved. "I feel shitty! Okay, I feel like crap and I'm scared to death I'm just going to fall into deeper and deeper levels of feeling like crap til i'm too incapacitated to be able to complain anymore!". Poor beloved tosses and turns at night when I let loose. Alot of the time I'm my usual goofball self cracking wise for sanity sake and a touch of normalcy for me (and him), but some days it feels like a tidal wave pouring out of me (how I truly feel) and unfortunately my beloved takes the wave poundings when the come. When taking a shower and getting dressed feels like a big accomplishment. When getting ready to go out with friends almost makes you not want to, not necessarily the company, because you want the company, its just it takes a lot of effort now to do simple things and sometimes just mentally its tiring too because you want to avoid certain conversations and are afraid they'll come up. Morbidly I think the "how you feel" inquiries are like a subtle "So, have you picked out your casket yet?".
" I KNOW others have it MUCH worse but I think that all this, on top of my biggest fear, is too much. My biggest fear is not dying but dying a slow painful, feeling sick all the time death. There I said it. And I feel SO guilty that I'm taking away my husband's happiness. I simply don't want to live my days feeling like 💩. I'm not suicidal. I'm just sad. And VERY scared of the future." -RK
That quote there RK, that is word for word exactly my struggle right now. Exactly why settling down to sleep is a bit challenging some nights. Maybe its why I put my scans off an extra month this time. Why I wish the drugs we take let us live exactly how we did before cancer, just to have that for a little while. It feels so negative to say, but I feel like we are made to live with varying levels of crap and fear to try to parcel out some QOL for awhile before we switch up the treatments or say we've had enough. What you are feeling is totally normal, I wouldn't think you suicidal at all. There is a death and dying thread in this IV section and you describe what many of us do. Many of us feel like you. I vent there in that thread sometimes. The fear in me doesn't go away when I vent there entirely, but "Am I outta my mind for thinking like this" feeling does go away, because I know I am not alone in my thoughts. You aren't alone RK. Even if you need to move treatments we're still here. If you need to vent again do it. This section sometimes is very treatment focused and the other part of this mess we're all dealing with isn't as much. Ventings like this help so many people, some feel it and can't say it outloud. You spoke for many.
I wish there was a general thread where we could all chat, alot of the targeted treatments threads aren't busy and when people move from Ibrance or don't have liver mets etc which thread to go to for support is limited.
I struggle alot with advise giving at times on here, so I'm trying even if i suck at it, I feel like I don't have much wisdom to share to ladies 15, 20, 30 years older than me. Unsure of how i word things, makes me guilty of deleting posts/ventings sometimes. Trying to be honest, but also not scare that heck outta anyone. I lack certain life experiences. I wish I lacked this life experience tho, I think we all do.
Candy, Aprilgirl in your pocket for scans.
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Hi, people. I have a suggestion. Do you have a palliative care team? Mine is so helpful. It sounds like certain meds make you feel bad. The team will evaluate each med you take and see if you can juggle them to make you feel better. Zometa? Not all of us take that drug. Why do you? Is there an alternative? I question EVERYTHING. Get creative with your doctors. Make them think outside the box. Demand serious consideration of all side effects. Don't take casual brush-offs from healthcare professionals.
That's my two cents for now. I have 4 more radiation treatments for my brain mets. Doing ok but weaning off steroids is tough.
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Feeling for you all, Sunshine, RK, Spookiesmom, Rabbit....and feeling some of the same things. Uncertainty about meds is so frustrating. Angry that recent bloodwork at end of 3rd week of Cycle 2, for which I had been moved from 125 to 100, is almost as low as Cycle 1 at 125.,..despite oncologist assuring me it wouldn't happen again. I don't mind them not being able to predict the future, but I do mind the overconfidence. As I've vented on Bone Mets, I want very much to take a trip I've planned in July, but afraid if this keeps happening of being thousands of miles away with severe neutropenia. So far no communication from onc or oral chemo people who usually order my next dose about what's next.
Thanks Jaycee for the palliative care suggestion. I've started to think in this direction.....have been juggling competing recommendations about kyphoplasty (consult today but I doubt it's for me) or more rads, and wonder if I just shouldn't talk to someone about pain meds first, as I'm not taking anything now. Less complicated in the short term. Best wishes for the rest of your radiation.
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RK and Rabbit- I totally understand your posts. Ditto. I feel nauseous a lot. Not puking. Just nauseous. I think "is it I am constipated?" since I fight that a lot. But, no, not necessarily. I may have a good poo (thanks to prunes), but, yet, I still feel nauseous. Make supper and then sit to eat it and yuck and throw it out. I am tired a lot. I mean like sit down to read or watch TV and doze off. Man, I wanted to watch that show. I have a gaming group I have been meeting with weekly at one members house. The last 2 weeks I have cancelled on them. Just too much to get ready and go. The heat doesn't help either.
My problem is NOT faking it, but telling people that I feel bad. But then I get the feeling that people think I am a drama queen. "you look good" or my sister will say "are you losing weight"-- No, but I still feel bad even if my weight is not affected yet. Like they think I want to wallow in my yucky feelings. I don't. But I am not going to fake it. This is MBC. This is real. This is hard.
I think it is a combination of things with me. Yes, constipation, but also living with this for almost 4 years now. I walk around with a WBC of 1.0 - 2.0 --not normal for a body. I have NO hormones in my system thanks to the Lupron shutting down the ovaries and the Letrozole taking care of the rest of the estrogen. I am thankful for the meds, but they are not normal for our bodies and they are hard on us.
Rabbit you said "I feel like I am fading, like pieces of me are fading little by little". YES YES. I do too. I cannot do what I want anymore. I walk slower. I used to zip zip zip. People would tell me to slow down. Now, I do things slower. Feel sicker. Get tired. Get short of breath at times even. Like a clock winding down. Like the old me is fading away.
I do have Palliative Care. I tell them straight up. They tell me that this is normal. This is cancer treatment. Rest when I feel I need to. Use Miralax or prunes for the constipation. Blah blah blah. Basic 101 advise.
And my concern is this is only Treatment #1. What about as I go along on other treatments? I read on here about so many with progression and their treatments. Should I even whine about my case?
Thanks Rabbit for the pocket duty for my scans. I am getting nervous. Next Friday the 25th. How much has my mets grown in the last 3 months? Explosion? What will be my next treatment? How will I feel then?
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Jaycee bringing up the rear as straight forward as ever
Nope, no palliative care team. I saw a palliative nurse to get my MM card awhile back but communicating with her was like nails on a chalkboard so I stopped seeing her and saved myself 35 bucks every couple months in co-pays. My oncology floor does have a palliative oncologist who also is the doc for the nearby inpatient hospice, but I suspect I don't get to see him until i'm down on the mat and someones shouting "1, 2, 3, 4". My center is so low staffed now (oddly, it was loaded with staff pre- pandemic) and so worried about taking everyone's temperature I cannot speak to a oncology receptionist if my life depended on it, patient portal is useless now. Having just received notice pre authorization for Ibrance from specialty pharmacy is expiring soon, I'm saving myself phone tag headaches and just bringing the notice to my MO appointment tomorrow (friday).
I requested after this next Zometa in July i'd be switched to every 6 months from every 3 months. Xgeva is an option, the one my MO wanted me on, but insurance won't pay because its more expensive than Zometa. My calcium was above normal before starting Zometa, now I'm just in the normal range with it. So its doing its job and has proven to with my bloodwork so probably have no standing to switch, HOWEVER we are tweeking how often at my insistence due to SE.
4 more to go Jaycee, well done
Hoping the taper off gets easier the further along. prairie - boo to the low counts. Cakes was having trouble with counts and is doing ok at 75mg. Maybe another bump down is what you need. I'd ask to stop. Let your counts rebuild and try again at 75mg. It must feel like you keep getting hit with roadblock after roadblock when you just want to settle into some kind of rhythm and move forward. I'm hoping another downward bump gives you an upward bump to your plans this July.
Concerning question of how often tested for counts during cycle or if tested to start new cycle. When I first started I was tested halfway into the cycle and again at the end of the cycle. I started at 125mg. MO came in and said, 125mg is the dose for you. I think I am one of the rare few who's counts aren't really affected by Ibrance very much, I think I saw that like some 15% of cases have that happen. I did lower to 100mg after 12 cycles due to SE: mouth sores, fatigue. And I have virtually no mouth sores at 100mg. Fatigue improved for a short time at 100mg, but now feels same as 125mg. I am now just come in for blood once a month and she will ask what day I am in my cycle and she tracks it all on her computer. I'm currently on the tail end of cycle 19.
I think my biggest problem is that I have aged so fast internally. My bone scans show lots of cancer, lots of degenerative disease and arthritis, I'm old inside and every 3 months scans just show me aging more and more. Post menopausal at 39, no ovaries, no estrogen. I feel like at the end of this road I will resemble internally the statue of the old lady opening the door and walking through it to meet Jesus in heaven except now she's young. Part of me really looks forward to that.
Candy agree with your points 100%. Never have viewed you as a drama queen. Have viewed you as frank, honest, truthful, grounded. I wish I was extroverted in person as much as I am when I write or when I'm around people i feel comfortable enough to let my guard down with. MBC is a lot of baggage to carry, people say its all about how you carry it. To me, I know i can't carry it, that's why i come here for help to carry it, i think we all do. I've chatted too much today i think. Getting into scan mode.
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RK, I second ginger tea for after zometa, sorry you feel fatigue for weeks. I would go and see friends for a change.
Jaycee, I am glad see your post here, you’ve been in my thoughts. Here positive vibes for rest of rads. thanks for sharing useful information.
Candy, I learned a lot from you, and always like the way you share your experience with treatments, MO etc. I guess your MO knows what she does, that is why she waited for another scans, let’s hope upcoming scans show stable. I might be wrong but have you considered liver surgery since lesions are small?
In case I missed anyone, sending hugs to everyone I read your posts quickly as am going clinic for blood re-test! They lost my samples and nobody understood, if I did not follow up on results nobody would notice that, am I invisible?? I am beyond angry😡
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Candy, I don't think you're a drama queen. Most people don't understand what it's like to have MBC. When someone asks me how I'm doing I normally just tell them I'm feeling fine even if I'm not. I just get tired of explaining things only to get a deer in the headlight look back.
I hope your scan shows no change.
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Ladies who are struggling with Ibrance and Zometa: I, too, was miserable with these drugs my first and second cycles. I now take a Pepcid four hours before I take the Ibrance and it has made a world of difference for me. I no longer feel burning fire from my mouth to my anus, no more nausea, and I can eat normally again. I told my MO that Zometa gave me flu-like symptoms, so the last two Infusions of Zometa I have had 650 mg of Tylenol and a infusion of Benadryl before the Zometa. It has made all the difference! I of course get sleepy from the Benedryl, but there is no joint pain, chills, nausea, or any other discomfort. Adding Pepcid and Benadryl has allowed me to feel normal. I still require a nap now and again, but I feel like my old self. Maybe this will help you, too
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Snow-drop-- Yes, I think my MO was right about not changing treatment too fast too soon. I have had 1-7mm increases in all 4 liver mets over the last 6 months, slow growth, but growth all the same. We did a liquid biopsy, then a tissue biopsy, so we would have more info to use in determining next treatment (whenever that is). I just worry what this scan will say. Still slow growth or picking up speed or an explosion. I hope waiting was not the wrong way to go. My MO did present my case to the Liver Tumor Board at my cancer center. She said they had no recommendations at that time (April). I guess we could ask again in July after my scan June 25 and see if they now have recommendations. Though, I worry about any surgery with living alone with no support system. And also since I had a PE in May and now am on a blood thinner.
FGodmother- I do use Pepcid 40mg daily, every day.
Jaycee- Sorry I did not say it, but I am glad to hear from you. I think about you and wonder how you are doing. See, I have nothing to gripe about when you are doing brain radiation.
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Thank you ladies for your suggestions and support. ❤️
I've been sipping ginger lemon tea with probiotics and ginger ale but so far, I'm still feeling yucky. Advil helps with the body aches and leg pain. I wouldn't be surprised if I had a bit of a stomach bug that I'm fighting. My husband had a short “episode" of diarrhea earlier this week. My month long constipation has now converted to diarrhea. At least I'll be cleaned out. Last Monday my ANC and WBC were the lowest they've been in over a year so I may be having more difficulty fighting a flu bug. 🤷 The saga continues…0 -
Pepcid hasn’t touched it, neither has gaviscon. MO rxd compazine, will see him next Thursday.
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Rabbit- Here are some pics of the backyard- the plants we put in last Feb have truly taken root, so far we have avoided super-hot weather. Milkweeds and butterfly bushes are not stripped, but there are a half dozen or so Monarchs flittering around at any given time. I put in a lavendar-green area in a planter that am hoping will look cool and inviting when summer finally hits us. In the first pic, you can see where a catterpiller has formed a chrysalis on one of the succulents..
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In 1919, my grandmother taught herself to drive and moved her family from Arkansas to Southern California to grow oranges. My "family heirloom" is one of the smudge pots that my dad as a teenager used to have to get up at 4am and light- you can see it there next to dwarf lemon and lime trees
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Jaycee - so good to see you post! 4 more to go- great news. Hope you can rest after the steroid tapering etc.
Curious - I love your garden and the smudge pot. I grew up east of San Fransisco. My grandparents lived in so cal and i loved all the citrus groves we would see when we were driving around.
RRabbit - in your pocket for your onc. appt and upcoming scans.
Candy - you are not a drama queen, I admire you greatly and we have scans on the same day, 6/25:) In your pocket for your scan!
RK2020 - I hope you start feeling better. Funkytown, flu, rx side effects or all of the above - it's no picnic. Your garden is gorgeous, thank you for posting the photo.
Spookiesmom - hope you start feeling better. Please call your MO office and let them know, ok?
SunshineDay - I, too struggled with my white blood count early on. I go in once a month to the oncologist, typically on day 28 (so after my week off). Blood test, doctor appt, she ok's next cycle and then fulvestrant shot. I have to order my Ibrance a couple of weeks in advance so if my white blood count or neutrophils are low, she will usually have me take a week off and then have me do another blood test, looking for anc over .9 or close to 1.0. I am now on 75 mg of Ibrance and that seems to be better on my neutrophils although I have had to take an additional week off a couple of times (not nearly as many as when I was on 125 mg or 100 mg).
Katrose - in your pocket for upcoming scans at the end of June!
MKestrel - welcome to the Ibrance thread, sorry you are here but you will find great support here!
PrairieSea, I am sorry you have also had to stop and start Ibrance due to low white blood counts. It's challenging to plan ahead for vacations but make sure your Oncologist knows vacation dates and can work around them.
FGodmother, great advice and it's good to hear from you!
Jack5ie - you are on the top of my prayer list, sending you love and hoping things are going better.
If I missed anyone I am sorry, I have been "off the board" so trying to catch up!
I have also been in Funkytown, trying to get off that ride as it's no fun. I don't have any serious side effects to report but have the dark thoughts that creep up once in a while and I am trying to chase them away. We are a tough and beautiful group. I admire all of you and send you all love and prayers, especially if you are struggling or have extra concerns.
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Aprilgirl- Pocket duty for you too on the 25th. I will think of you as I am in the scanners.
I get my results on the 28th. You???0 -
Rabbit, there is not a doctor worth his salt who cannot get an insurance person to CHANGE THEIR MIND. They have to write an extra email, make an extra phone call, push for the patient. I have had doctors do just that. It can be done. Don't let doctors use insurance denial as an excuse to let patients suffer. At least ask. If not now, then when?
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