Ibrance (Palbociclib)
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Romansma I don't notice any change in my vision from this combo, but my vision has been not great for a while. I always attributed that to constant use of either the computer, Ipad or phone. But who knows. I'm sure all the combos I've been on haven't helped. The beach town sounds wonderful. We have lots of beaches nearby in NJ and NY, but they don't sound nearly as nice as where you go.
The Astragalus, CoreOxygen, Squalene, and Ashwaghanda have been keeping my Platelets and Red counts good. I don't take the Vitamin C since I get weekly IV C. I also take Maitake drops twice a day which is suppossed to help the red counts. I usually take the Floradix (liquid iron) three times a week for the iron. Don't want to take every day because of the constiptation. The only issue has been the low white counts. I have not done any neupogen recently. Am trying to avoid it even though my onc is okay with it.
Myra so glad that you are taking your life back. Sometimes when I feel a bit tired and really not motivated I literally force myself to get out of the house. Usually once I'm out my energy rebounds. I think with me some of it is attitude.
Have a great day everyone.
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About the blood counts: How often and at what point in the Ibrance cycle does your onc order blood tests? I think my onc and onc nurse are just working out the new routine.
During my first cycle, they checked my counts on day 22, i.e. after 3 weeks on and beginning my week off. I didn't pay much attention. But then the nurse called a couple days into my second cycle and wanted me to come in for a blood test because of those counts, and asked if I had a fever (no). And she said we would check blood counts every two weeks for the first three months.
So I did some research and found out that my day 22 white blood cells and neutrophils were grade 3 low. Yikes. I found the Ibrance information for physicians and it said to test before each cycle and on day 15. But I wonder why they don't recommend checking on day 21 or 22 when we would expect the counts to be at their lowest.
What I really want is a predictable schedule for blood tests since going to the cancer center is pretty much an all-day affair. That way I can schedule everything else, like scans and appointments, on those days, too.
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ShetlandPony, my MO does bloodwork every 2 weeks, and I think TMs too much. Very close to the Ibrance recommendations. Grade 3 can be kind of dangerous for your ANC and platelets. Glad they will be watching more closely. We are really the beginners of this drug. Myra.
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Hello, Hope everyone is enjoying life to the fullest.
I started my second round of Ibrance on Thursday. The first round I felt great. Did have low wbc and platelets after but I felt good, Less back pain and leg pain.(I am not superstitious but I always hate to say I feel good because something always happens.) This round since Thursday I have more aching and pain in my back again. Anybody else had this, It could be the weather too, I hope. as it has been gloommy and rainey. I was just wondering if anyone else has had this. If this is as bad as it gets I can do this,
Going to see Garth Brooks on the weekend,trying to live life to the fullest , hope you all can do the same.
Redroan
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hello,
I will start on Ibrance Wednesday, will post how I progress.
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last week at MO, I told him how great I felt. Actually got our of bed w/o pain in the AM. after starting up again, achy too, are we killing cancer? Let's hope so!
https://www.facebook.com/ldistaulo/posts/101010626...
Have a great day all....Myra
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Welcome, Max, looking forward to hearing how you are doing.
Red roan, yes, I had a pretty intense pain flare starting my 3rd cycle. It has since let up. I've read that the Letrozole can cause flares and if the Ibrance is doing its job, it is making the Letrozole much more effective.
As far as a schedule for checking blood counts, Pfizer said day 15 and before starting for the first couple of cycles and then just before starting after that. No need to check at the end because you are off the Ibrance for a week at that point, so your counts should be recovering.
I've started some liquid multivitamins and minerals along with electrolytes. Hoping it helps with energy levels and blood counts. I've been trying to stay active, but it's hard. Making sure my kids and dogs have something healthy to eat and clean clothes is about all I got right now. Looking forward to being able to do a bit more soon!
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Thanks, everyone contributing to this thread (and Romansma, for starting it.) It's so informative and really helps that I don't feel so alone trying this new drug.
I hope your energy comes back soon, Romansma. Try not to let it get you down, as I can imagine it's frustrating not to be able to do what you're used to. Good luck with the supplements.
Welcome, Max otto!
I'm still on my first cycle, only two weeks in, so I'm pretty new and don't have a lot of feedback to offer. I feel good so far. I have awakened with a few really bad headaches that I attribute to the Letrozole, but once I get up, have coffee, cereal and an Advil, it goes away. Doesn't happen every day, but since I am not one to get headaches in general, it's a new thing. I did make it to Chicago and back home without incident and with plenty of energy. I do have a sort of itchy scalp and eyes are just starting to water a bit more than usual.
My onc asked that I come in for blood work "before I start the next cycle." He wasn't specific about the day- just said "Don't start again without seeing me." He said if my counts were too low, we would just wait until they come up. He seemed fairly relaxed and matter-of-fact about it. I'm glad he didn't want me to come in earlier. It makes sense to me to check right before you're suppose to start a new cycle and after the counts have had a chance to rebound a bit from the week off. I'll see how that works out in a couple of weeks.
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I have also been getting my counts checked right before and approximately day 15. I go on Thursday and am sure that my platelets are low since I've had a few minor nose bleeds which I know is from the platelets. I've been a bit lax about taking some of the supplements but have started again today as they really do help. So hopefully by Thursday will be a bit better. I have minor headaches also and was not sure if it was from the Femara or from the Ibrance. But usually with two Advil it goes away.
My onc had said that he would not delay the Ibrance but may reduce the dose if the counts are very low. This is my third cycle and compared to other drugs I've been on, this is not difficult. I just hope that it continues to work.
Romansma I hope that you get your energy back but glad that the pain has subsided.
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pearl lady, are you sure the nose bleed is from the platelets? Several of us have had bloody mucus. I had one 2 days prior to having my counts done and the platelets were perfect. Myra.
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sandilee,
Fyi. I have been in trial with this combo since last june, i dont really know if i am on the drug or placebo. I had alot of itching in scalp and skin i even got sores on my arms and chest. This went on for 3 months then they lowered the dosage to 100mg. So far no itching. I had the sores biopsied and it showed drug reaction. But so far i am stable . Two weeks ago pet scan showed nothing that had uptake...i am thankful. Hope this helps you. Linda
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Myra I am almost certain its from the platelets because I had the same thing on Abraxane. Very minor actually and would probably not pay attention to under normal circumstances. Typically when I start taking the Ashwaghanda and Vitamin C like I know I should it gets better in a few days. Also, I missed a week of my IV Vitamin C. But I've taken the supplements since yesterday, so I'll know for sure if it clears up. WIll let you know when I have my counts checked on Thursday.
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pearlady- The reason I think my headaches are from the Letrozole is because they started before I started on the Ibrance. I had been taking the Letrozole while waiting for approval. Also, headaches are mentioned as a possible SE with Femara.
Thanks for the info, Linda! I'm hoping the itching goes away on it's own. The sores sound pretty bad- hope I don't get those, too. Fantastic that you're stable since June!
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Hello everyone,
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Romansma, Thank you , I hope this is what the pain and aches mean. I hope it's working for us all. Last month no extra pain pills, This week not so much. Took and extra yesterday and one today.
Still trying to be super mom and made supper. Meatloaf,baked potatoes,fresh asparagus and morel mushrooms. Pretty good if I don't say so myself. But standing that long and doing dishes after kills my back today. But I wouldn't change a thing.(except my back and you all know the big C.)Love my boys!
Sorry, Just sharing , I hope you all have a great night.
Redroan
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Hello all.. Just checking in with all of you. I am just starting cycle 4. In the trial I am on I will now go to blood work every 30 days instead of 15. My blood counts all improved this past month, not by much but enough. I am still on the full dose. I am still slightly anemic but, my iron count is fine so just sticking with lots of leafy dark greens to keep my RBC up. Thanks for all the Holistic tips from everyone. I haven't been able to get to my naturopath yet, but will soon.
I still have the nose sores, which my MO said the other day that they are from the low WBC. I am trying my best to keep my hands away from my nose. I don't need another bad cold as I just got over one that lasted a month! I work in the dirt ( landscape designer) so I am wearing disposable latex-free gloves. I change them all day long and throw them away. Wasteful, but keeping things cleaner as far as that goes.
I have two months left of Ibrance with tamoxifen and then I have to consider a switch to an AI in late June. I am just getting used to this combo!
All the travels sound great! I just got back from NYC to see American in Paris on Broadway. Keep on trucking everyone and good luck to all the new Ibrance users.
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Hi Ladies!
I just found out today that the mets in my right and left (R>L) neck lymph nodes have continued to progress and have several nodes in my chest/mediastinum that have decided to join the party and like to cause me bouts of chest pain and shortness of breath, I thought I was having anxiety attacks. I've had a weird breast cancer progression that it should show below so I won't bore you with it.
Anyway, my onco just gave me the femera and ibrance to start tomorrow. I'm very nervous!!! I've read a lot of your posts to try to catch up but 526 posts to read is a bit much lol I was put on femera immediately following my hysterectomy in 2012 but I had intolerable insomnia, fatigue, and leg pain the same with afinitor. I could finally tolerate the Faslodex and had no progression for two years. I'm just now switching from aromasin that I have been on for 1 year. What we are hoping is that some of the SE's were made worse or stemmed from the hysterectomy.
Sorry I'm a little long winded about it I'm just super nervous. I've been in a major rut the last couple months (partially do to canceling my wedding and being a single mom with a tween with ADHD) Maybe now that I know it's not anxiety or panic attacks I'll be able to handle the random chest pain and SOB better, they kinda freak me out to tell you the truth.
So far I've seen from your posts that it's best to take about dinner time with minimal SE's. I've had trouble with my immune system including a month long hospital stay last year from being septic so I know I really have to watch my counts. I know vitamin C can help, any other tips or tricks for me?
Thanks!
Amber 😊
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Lenn, are you saying that your blood counts are getting better just with time on Ibrance? I'm hoping that's the case!
I'm on day 10 of Ibrance and day 10 of a bad head cold, at least I think it's getting better, which is good, because I've been starting to wonder if this is just what life on Ibrance will look like for me.
Glad to have you all sharing your stories--as new as this drug is, it feels like there's not so much people reallyy know for sure.
Asly, welcome and good luck!
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welcome Asly, sorry you have to be here, but welcome. This thread has some very informative info given by some extremely knowledgeable women. They really take the time to research and share. On Page 17, I shared some info from an Integrative MD, i saw for guidance and advice. Been following it diligently and my energy has increased 3 fold (spent 4 hrs at the mall yesterday). Look back at as many posts you can, you will learn a lot!
Rosestoeses, I hope you feel better real soon! Tons of vit c and zinc.
Lenn, DH and I are planning a trip to NYC this summer. We do my favorite kind of tour there: EATING! 2nd Ave Deli, Ray's Pizza, Little Italy, Russian Tea Room. Aaaaaahhhhh, I can taste and smell it now!
Wishing you all good smells and smiles today....Myra.
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Asly welcome and good luck with Ibrance. I hope that you find this combo tolerable and most of all, that it is effective. I really feel very little side effects and even when my counts have been low have felt very good. I work full time and have not had any issues. The only minor problem is mild headaches, which I assume is from Femara, but actually has been better the past week and I'm half way through my third cycle. I was on Femara for five years previously and recall that other than some joint stiffness I really had very little side effects. But we're all different. I also take supplements recommended by my integrative oncologist and holistic pharmacist. I believe they have helped me tremendously with my energy.
Myra let me know when you will be in NYC. Maybe we can meet for lunch or for coffee. Yes you are right, the food here is the best and so many choices.
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https://m.youtube.com/watch?v=Ehm4HLnr-F
Linda714, was that a NED scan? Wow, inspiring! Welcome to all the newbies. This thread is getting to be pretty active. So grateful for everyone's input. I'm feeling a little better. Not where I want to be, but I'll take it! My goal is to be like Myra and be able to walk around the mall for 4 hours!
Headaches. I've been getting them in the afternoons, sometimes when I wake in the morning. Interesting that it might be the Letrozole. Might be a good sign that it is having the effect it's supposed to have. I remind myself of that little tidbit every time the sweat is rolling down my neck from the hot flashes!
Asly, I had a difficult time with the AIs after having my ovaries removed, too. I think it was all too much for my body to be slammed into menopause and subsequently denied ALL estrogen by the AI. My cognitive status took a nose dive during that time that was really hard to handle. I've had some time now, and I don't work (for money, at least), so the side effects are a little easier to deal with now.
Roses, hope you get over that cold soon. It will get better! Get some vitamin c and zinc going.
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Hope, not all the mall 4 hours was walking, there was lunch and coffee in there too....LOL. But I am feeling so much better with my new regime. I have actually lost 1 1/2 lbs, but dont want to. Need to add more carbs to my diet. Myra
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Rosmansma, since i am on trial they call it stable and continue meds. I still have alot of doubt or trouble understanding that. The only thing on the pet was a lung nodule that has been there the whole time , same size and no uptake...so not cancer. When you are on the. Trial they dont use pets only ct scans and i cant take the iodine so they do them plain. My ca15-3 stays around 36 but that has been the same also. So next month i get new ct and we shall see...nothing on the last one either. I dont want to toot my horn too soon but looks good so far. I have had alot of side effects so three month ago they reduced dosage to 100mg but i dont know if its the real Ibrance. Severe itching and sores on arms biposied drug reaction.
Linda
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Pearlady what is the Vit. C for? Do you get the IV from your oncologist or a natural physician? I would think at the very least it would go a long way to detoxifying some of the many chemicals/poisons we have been exposed to over the years of tx. Thanks, Susie
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Roses - blood counts are improving slightly and there are less dramatic changes during the month. The trial nurse told me they have seen this happening.. That is why I don't have to go every 15 days for blood work now. They are still low for me but definitely not like they were the first few cycles. I am getting another cold, though... Just got over one that lasted for ever but like I can fight this one off maybe.
The new trial nurse I have is really up on alternative treatments and interactions with Ibrance. She was the first one to tell me that I was taken off Borage Oil because it was an inducer of CYP3A and it would have made my 125 mg dose seem like 150 mg plus.
Myra- I did eat my way through NYC. Got into the new Danny Meyer restaurant at the new Whitney called Untitled, a Caribbean restaurant called Ms. Lilly's and Telepan up near Lincoln Center... And I was only there two days!!! American in Paris was awesome if you can fit in a show between eating destinations. Love the Russian Tea room as well...
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Redroan
I got to enjoy the Garth Brooks concert with my nieces and nephew when he was here in Pittsburgh. The show was so exciting I didn't feel any pain standing up for the entire show. Came home with laryngitis from all the singing along. Go and have fun making those memories!!
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So, it sounds as though the blood counts may not be as dramatic as our bodies adjust to subsequent cycles. I sure hope so!
Good for you Ppap, glad you got to enjoy the concert!
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Susie I get the Vitamin C from my oncologist. I originally started this last year since my onc suggested it as being anti-cancer. Now it seems that it helps with the platelets also along with the oral supplements. I also get weekly Glutathion which is suppossed to help with the detoxing. Also helps very much with energy, which is one of the reasons why I think I haven't had low energy issues on this combo.
Romansma and Lenn, it makes sense about the body adjusting and the counts not being as low once your body adjusts. I am going today for Vitamin C, so I will get my counts checked. Am hoping for the best. I feel good and haven't had the nose bleed issues since Monday.
Its a beautiful day here in NYC. Have a great day everyone.
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Good morning! It's nice to see so much activity on this thread, and it seems like people are getting the drug with no problems, finally.
I just noticed that this site has added Ibrance to their targeted therapies and we can add it to our treatments in our signature if we want. Cool.
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After completing my first three cycles of Ibrance I had a CT scan last week and my follow up appointment with my oncologist yesterday. Unfortunately, Ibrance is not working for me. My tumor marker increased 30+ points and the tumor grew 1 cm.
Please don't get discouraged by my results. It feels like my entire life I've always been the 1 out of a 100 when it comes to negative things. Wish I could hit those results on the lottery - but not.
So my next step is another visit to the Hillman Cancer Center in Pittsburgh to see if something else is coming down the line.
I wish all of you good health, strength, and peace.
Blessings,
Penny
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