Ibrance (Palbociclib)
Comments
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Thanks for the information ladies. If my blood work is good this morning I will get my first two shots and start Ibrance. If not she will probably have me do another round if A/C (#7). Can't even think about that.
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Joy - haha, no not a hunter, just love the views from hilltops.
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Thanks for the good wishes, Micmel. I can't even express how much I wish for all of you to feel better and live your lives as best you can given this awful disease. I read your stories and my heart aches. My hope is that a cure is found while we are still on this earth. My MO is very positive about the prospects of future treatment options including immunotherapy, so I choose to hold on to that thought. In reference to my screen name "hilltop" - that is where I go (in my mind) when I'm feeling stressed. I breathe deep fresh breaths and look out over a beautiful landscape of valleys, meadows, flowers, streams, lakes and find my peace.
Love to all. Mary
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platelets are normal! Not anemic for the first time in six months. Got my two shots and start Ibrance today. Any advice on starting? Tha
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I am so happy for you Dianarose, what a stressful time for you getting to this point. I had a little indigestion taking Ibrance at the start. I took it in the middle of my evening meal - now I take it at the end. Im not sure if the indigestion went away as I got use to it or because I left it until my stomach was full.
I also bought a pill box - so I could make sure I knew if I had taken them, and other medication (Anastozole, my thyroid pills, Vit D) However, Phizer sent me Welcome kit a week or two after I started which included a pill box. My one does has different compartments for different times of the day though.
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Dianarose~ congrats. 🎉🎈 it's been a long wait but you made it. I also take my ibrance at dinner time, but also try to take it the same time every night. That is what my onc told me. I don't have too many side effects which i am very pleased about. My pallative care doctor told me yesterday, the side effects are from the anastrazole. She said that is what causes the most joint pain and fatigue. She said ibrance is usually very mild. The other thing with ibrance for me anyway, was I now have a full head of hair that is growing like a weed. I'm almost considering my first hair cut And I actually used conditioner yesterday for the first time. What a milestone that was. Something so simple. Made me so happy ! I cling to the little things each day. I am so happy for you. Dianarose!!!!! ~M~
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Scwily- thanks for the tip. They sent me a pill box too but it is huge lol. I hope Ibrance works for me. I want to get rid of this naphostomy tube and bag so bad. Can't wear shorts or dresses that aren't below the knee and can't go swimming or in the hot tub. Starting Ibrance with a white count of 4 which makes me a little nervous but MO didn't seem concerned.
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Well done, dianarose!! Good luck to you! You're launched!
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Hooray, Dianarose, for normal platelets!
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Just thought I'd share an odd, or maybe not so odd, experience I had last night when meeting a friend and a group of her friends that I don't know to celebrate her 55th Bday. This actually belongs under the thread for stupid things people say to you when they find out you have breast cancer (especially when you're stage iv or metastatic). In this case no one in this group except my friend knows that I have stage iv breast cancer. So I arrived to the restaurant a little flustered because I was very late and was the last one to join the table. I was taking my coat off and making my apologies and there was lots of chatter among the 5 women. The woman I sat next to was a very upbeat gregarious person and was suggesting to me that I get a Lychee martini because not only are they delicious but they prevent breast cancer. I was in the middle of settling down in my seat and taking off my scarf as she made this statement in her very bubbly way and I simply replied with a focus on putting my scarf away - "oh well, it's a little late for that..." Without a blink of eye she looked at me with a big smile and the palm of her hand up in the air for a high five and shrieked with glee "oh, you are a survivor!" I smiled at her and responded rather matter of factly "well, I'm stage iv" and I kind of shrugged. She then proceeded to tell me all about her mother who had breast cancer and how she herself had thyroid cancer and on and on and on. I was kind of glad she took off on her stories and didn't get all down and dour about me and didn't ask me anything about my situation. No one else at the table seemed to have heard any of this exchange (it was quite a noisy place) which I was also grateful for. But I was simply struck by how openly and obliviously people can spout out about breast cancer to total strangers and then I was also struck by my own nonchalant reaction. It used to be that people would whisper about such things and there could certainly be no laughter associated with the big C. My how things have changed.
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There are some classless people out there! What an ordeal - and I expect nothing you could have said or done would have got through to her and made her realize she was so wrong in her behavior. The idea that an alcoholic drink could be good for any cancer is laughable. I try to remember to be happy I am not as ignorant as they are when I meet such people. It's certainly a different world than the past.
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Hello Stage IV friends. Today I had my first CT scan since starting Ibrance 125 and Letrozole 3 months ago. No progression with the liver mets. My MO is also considering liver MRI to further differentiate active vs dead lesions. My ca 15-3 these past 3 months has further dropped from 92 to 65 with normal liver enzymes. Yeah! (The earlier AC chemo took out the micromets in lung arterioles). During my "off Ibrance" week, my plts are 66K, wbc is 2.5, absolute neutrophils are 1.4 and hgb is 10.5...so get to work bone marrow. I feel like myself again with very little side effects (well, except fatigue) Walking and physical therapy greatly helps.
Sandi
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For those who were taking Med's for acid reflux what are you taking now
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I must sound crazy but was anyone else scared to death to take that first pill
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Dianarose: That was me - scared and in awe! I then sat waiting for side effects! Managed to get used to it after a few days.
Sandibeach: I'm so happy to hear if your scan results. Interesting the talk of dead and active lesions. I'll keep that in mind when (hopefully) I get similar results. y liver markers have dropped too - though with Anastrozole they were on the way down from their peak in Oct when I was first dx. A toast to your bone marrow to bounce back this week.
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Dianarose, yes I think many of us were scared to take that first pill. It's really not too bad for most of us. So happy to hear your platelets are good. It's important to take Ibrance after a hearty meal. Most take after it dinner but I find taking it after a big breakfast works for me. Be sure to drink lots of water, helps with the side effects. I take omeprozole an hour before dinner and hope it's not interfering with the iBrance. I know it's not great for our bones but I have a real problem with acid reflux. Welcome to the Ibrance crowd! May we all get a long run on this drug.
I would like to think we could stop it if we become NED but I doubt if any dr. would approve that unfortunately as I too would love to stop it for awhile. This regime gets old after awhile and I'm grateful we have it but oh, sometimes I just want it all to go away. I guess I'm having one of those down days or weeks, I'm tired of being tired. But, we'll all hang in there somehow.
Faith ( in the future).
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Dianarose - so happy your results were good enough to begin your new treatment. I cried when I took my first Afinitor pill back in Nov 2014 because I knew it was the first step on a journey I didn't want to take. My fears were unfounded as I had very little problem with it. I began the Faslodex/Ibrance combo two days ago and felt the same way again, but so far no issues. We're walking the same path so I hope you respond well and that your counts stay up. Hugs.
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Sandi - Awesome news! thank you for letting us know. I am interested in the MRI results if you get it.
Animal Crackers - That was a weird start to an evening, I am basically glad that people are more laid back about talking about it. At the same time, I will not talk to anyone about my cancer who doesn't have it, unless they are close family or my doctor. When cancer comes up and I don't want to talk about my cancer, which is always, I smile and say I am doing Great! and complement their hair/accessories etc. I am a little surprised how quickly the conversation moves from my cancer to their last shopping accomplishment. But it does.
Dianarose - I am so glad that you are taking Ibrance. It's exciting and weird at the beginning, then it gets normal for a while. Then, after 15 cycles, you get to where Faith and I are ... wondering if we can stop after 3 years, 5 years? No one actually knows.
>Z<
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Sandi~ such great news. I am so happy that you're kicking official butt. Today was the best day I have had in over a year and two months. Felt alive. Felt strong. I am really understanding a key piece of my treatment that my pallative care doctor added. It sails me through my worst fatigue hours of each day, which is always 2:00 pm to 5:00 pm. And if I nap I am up all night, so I explained this to her. She sent me home with a 5 mg prescription of Ridilan. I was very skeptical at first,but thought what the heck do I have to loose. It doesn't interfere with ibrance, because she confirmed it when it was available on the open market. So I took it for the past two days. I am so thrilled with the results and am actually excited to take it tomorrow. I ran a mile today and walked another very swiftly and kicked out 7500 steps which is my personal best since diagnosis, and I was an avid runner prior to sickness with 6 miles daily or more. So for me this was a big deal. No nap, breezed right through with energy and actual laughter and happiness!!! I had fun! I smiled, laughed and felt alive for the the very first time with no limits to what I could do. I strongly recommend if you ladies have severe fatigue like I struggle with for over a long year or more, to try it. It's only 5 mg and not one side effect at all. No chance of any addiction issues, and it was such a thrill to feel no fatigue for one day. Now I may not want it everyday, and I will watch it closely. But honestly. I am amazed. So happily amazed. Just thought I would share my pellet of gold/happiness! Good night ladies. Rest well ~M~0
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Hi. If my MO orders the liver MRI, I will share what was found compared to the recent CT. I was also nervous when I took the first Ibrance pill. I do keep a journal to monitor any side effects. I also feel the weakest around days 23 - 25, but bounce back. My platelets seem to drop end of 3rd week, but never low enough to change to 100 dose. I wish those starting Ibrance great success.
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Sandi~ such great news. I am so happy that you're kicking official butt. We all must have those winning days.
Today was the best day I have had in over a year and two months. Felt alive. Felt strong. I am really understanding a key piece of my treatment that my pallative care doctor added. It sails me through my worst fatigue hours of each day, which is always 2:00 pm to 5:00 pm. And if I nap I am up all night, so I explained this to her. She sent me home with a 5 mg prescription of Ridilan. I was very skeptical at first, but thought what the heck do I have to loose. It doesn't interfere with ibrance, because she confirmed it when it was available on the open market. So I took it for the past two days. I am so thrilled with the results and am actually excited to take it tomorrow. I ran a mile today and walked another mile very swiftly and kicked out 7500 steps which is my personal best since diagnosis, and I was an avid runner prior to sickness with 6 miles daily or more. So for me this was a big deal. No nap, breezed right through with energy and actual laughter and happiness!!! I had fun! I smiled, laughed and felt alive for the the very first time with no limits to what I could do. I strongly recommend if you ladies have severe fatigue like I struggled with for over a long year or more, to try it. It's only 5 mg and not one side effect at all. No chance of any addiction issues, and it was such a thrill to feel no fatigue for one day. Now I may not need it everyday, because everyone needs those resting days (Z) but I will watch it closely. But honestly. I am amazed. So happily amazed. Just thought I would share my pellet of gold/happiness! Good night ladies. Rest well ~M~ P.s. Sorry for the double posting , I am having server problems tonight
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Hi, I just finished my first month of 100 mg of Ibrance. Today is my first "off" day and I ache like you wouldn't believe. I was doing great as far as SE , just a few manageable mouth sores and a few naps. I don't know if this is Ibrance related or just getting sick. Has anyone else had this happen to them? I've taken 2 hydrocodone (6 hours apart and still feeling all over achy).
I am also on Femara 25 mg. Only SE so far is the lovely weight gain. I'm to the point I don't even want to eat, I'm so paranoid about food.
I've been taking Claritin daily for allergies, also.
P.S. I know I need to update my info., I'll try to get to that soon. 😉
I have to say, I am excited for all the amazing people on this thread and all the helpful information that is shared. It makes my bad days bearable - thank you!
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M - I am LOVING this pallilative care doctor. Ridilan. Hmmm. Thinking about this. I am running, pretty active, but still it is a struggle. I spend a lot of time in bed. Ridilan. Hmm.
In any case, I am so glad you are running. This is huge mentally and it will certainly improve your QOL and outcome. Great news.
>Z<
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Still~. One thing I have learned is it's almost impossible to know the permanent or reoccurring side effects with only being on your first month of the medicine. You have nothing to compare it to, nothing to gain patterns from. In other words, the first month I felt nothing, the second month I had scalp soreness and a sore throat on and off . I am also on anastrazole which sends some powerful joint pain And muscle aches. The third month was pretty calm and I had begun to understand My body's rhythms while on and off the week of ibrance. my personal opinion is the letrazole. That is usually the culprit of the aches and joint pains. Mine got better, keep taking the Claritin and warm baths helped me and hot showers. I know this isn't something that sounds like it would work but movement helped me. The more I moved the less joint pain I had. The first month is an adjustment month and sometimes it takes a good few to really understand how it effects your body. My pallative care doctor also told me. When medicine is working it is causing retreat of your pain, so right now your body has gone into battle my friend. All guns blazing in other words, so you could also be experiencing the tumor flare as well. I sat in my doctors office for 45 mins with a list of questions that I needed help with and so far she's been amazingly helpful with her choices and suggestions. Try another month but communicate with your onc and tell them what your experiencing. So they know right away. My body adjusted over time. There are some lovely ladies here that have been on this for double digit months, and they are thriving and inspiring, I am beginning my sixth month, but have been told already tumor markers have plummeted, and I feel pretty darn good. You'll get there too. Just be patient with yourself. It's a slow process and that for me was the hardest part , don't ever give up. It's tough, but like Z says. You have to hang with tough people, that really understand. Bless you and welcome to a wonderful place filled with great people. Good night ladies ~M~
Z~ Thank you! I believe it would be just the thing you need, I actually thought of you when I left because I know you're a runner. Today was the first day I wasn't in bed. It was amazing. Pallative care has been amazing. They really listen and honestly do their best to help in whatever way they can. I was so thrilled with the treatment I have received with her practice. Anything I have ever had problems with she has really made so much easier. I believe everyone should have a Doctor Collier! ~M~
If you ladies don't have a pallative care doctor, seriously look into it. It is such a helpful tool, that people frankly do not utilize the way they should be. People associate them with the end, or being in a critical state or hospice. But they are sooo much more than that. They help you through every stage of treatment for this mean unwanted monster we fight daily!!
Good night ladies rest well. Sorry that was so long it's gotta be the ridilan! ~M~
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Micmel, thank you for all the good insight. Your words have put me at ease. I'll give my onc a call tomorrow.
Sleep well
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Sarah, my understanding is that we expect to stay on Ibrance until it doesn't work any more or something better is approved. I know they're working on drugs to keep the cancer from starting to recognize treatment and find its way around it. Let's definitely stick around for that!! I have a friend who is NED after immunotherapy for malignant melanoma...7 soft tissue tumors big enough to palpate and several in her brain. She just had her 5-year anniversary and does not take any treatment. If they can do that for melanoma, they can do it for breast cancer!
I felt the same way about those early side effects, Sarah. I told my doctor that I at first thought I might be getting a placebo because Ibrance didn't feel like chemo! I was almost happy to see something!
I'm excited to read about the success with Ritilan and may just give it a try down the road. I had my most energetic day in months today (in round 7 of Ibrance). I just got over a nasty lung thing that brought extreme coughing and terrible fatigue. I guess everything is relative because Ibrance fatigue feels quite manageable after that!
Everyday my husband and I pray before I take the pills with dinner, thankful that researchers discovered something so effective without terrible side effects. We pray for all of you who also are on this journey, the older ones like me and the younger ones who still must work outside the home and/or are raising children. I expect good things for all of us! Let's all enjoy Springtime!
Dianarose, I'm so happy you have joined the Dance! May your Ibrance fix you up well, my friend!
Stillivin (love the name!), you asked about aching. I used to take Femara and had lots of discomfort. I'm taking Arimidex now and take Turmeric with it. No aches, so far. I buy the Mega Foods brand at Whole Foods and have also ordered it from Amazon.
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Pat, how did you subscribe to the Oncology Business Review? I am trying, and it asks me to sign up as a doctor, health care professional, insurance provider, etc. I haven't been able to get through the gate so far!
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Pat - thankyou for your thoughts. I feel so much part of a warm and supportive group. I woke this morning with a littke feeling of dread. I am usually very calm and cope well, but sometimes the realization creeps in about this darn dx. I came straight to breastcancer.org and I always find a way to feel supported and know there are others that just get how I feel. Toay it was your words thst did the trick.
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scwilly~ know those mornings so very well. But I also deep in my heart believe we have a heck of a lot more medicines to try and things in the pipeline we don't even know about. I read yesterday that the sister to ibrance has been approved and is available! The treatment of the future is what we have a chance now to experience, if this was 20 years ago. I think my out look wouldn't be so optimistic, I have seen long term survivors, and there are many. We all will be here for years to come., for that I am certain! Stay strong! ~M~
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I was over tired yesterday and had a meltdown. After 13 years of dealing with this cancer crap I just can't wrap my head around it sometimes. I have had severe allergic reactions to meds in the past so we drove to town after supper so we were close to the hospital so I could take the first pill. Took the pill then went to the store and bought everything to make banana splits. So far so good. MO said even though Ibrance makes you tired that I should feel less tired soon because I have been on the other chemo for so long.
Thanks everyone for all your support and advice.
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