Ibrance (Palbociclib)
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Prayers for you Hope.
Monika - I was just diagnosed a month ago and I am 39, so I get how hard it is for you. My family has the same reaction about "beating" this. I try to explain, but I think they take it as me being pessimistic. This is definitely pretty stressful and hard to get used to.
Roses- Great news!
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Myra, there is nothing wrong with antidepressants. This is a lot to deal with and its so hard on our psyches. It just takes the edge off. I don't even notice I'm on it, except that I am able to keep myself from sinking into the darkness.
Monika. You need an accessible Onc. Mine I can email anytime and he actually gets back to me same day. Also, I have his cell phone number. His PA gives me copies of my blood work results everytime I go, including tumor markers. This kind of thing you need info, info, info. And you need to know that your doc knows you and your case intimately. This is your life. Dont accept anything less.
Allison, I'm sorry about your new DX. I was diagnosed stage four 4 years ago (next week). Was NED for 3, until a few months ago when he skipped out on me. It's not too bad though. I am raising two kids, great hubby, great friends, pretty active life otherwise. Just had to readjust a bit to the new normal. Hang in there.
Stefanie
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Thanks for your well wishes, pearl lady and roses toeses, and everyone. Xeloda is my first chemo, but I'm grateful I have at least this one more option before infusions begin. If I could get a year on it, that would help a lot.
Good luck to everyone new and currently on Ibrance. I want to hear some success stories!
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Hmmm.... I wrote a long post to Monika last night, but it doesn't seem to have posted. Can't reproduce right now, but this is hard Monika and you are very early into this game. It took me at least 6 months to get past the "deer in headlights" phase, and I had five years post initial treatment to consider this an option. Be patient with yourself. This is hard stuff.
*susan*
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Thanks Stefanie and Susan...I am going to check out an onc at Johns Hopkins next Thursday. While mine is very nice, she isn't accessible like I need her to be and I am tired of seeing nurses and no one is ever prompt in the office.
Susan...I know... Almost two months is not a long time to process all of this. I have my days and moments. I am surprised my tear ducts can still produce tears as I have cried and continue to cry at some point in the day.
Monika
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I know, Monika. I would cry and say, "This is just so wrong." Somehow, you gradually get used to the idea or something. You start having more days when you don't cry. Hug.
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Okay all, I love reading how each of us is addressing the huge mountain to climb of breast cancer. My insurance finally delivered my Ibrance 100 mg but I am not to take it until I am approved after taking my blood again in 10 days. Of course I did not help myself with my experiments of poking holes in the end of the 125 mg tabs and trying to sprinkle out enough powder to make it a guesstimate of 100 mg Ibrance. Well I did not do a good job and almost wiped out my neutrophils which went down to 400 ...I do not recommend anyone else trying to do this. I continue to learn from each of you. At least I have the approval of the insurance company for a little while to continue the Ibrance. My Guardant tests show that I have a component of ER positive and so when the Ibrance stops working I will have a whole new protocol. Hope it is a long time coming because Ibrance suits me fine with minimal side effects. blessings to all. Carolyn from Music City P.S. For those who follow, my femur X-Ray did not indicate need for a rod to be inserted into my femur. (Whew I feel as if I have dodged a bullet. )
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You guys! It looks like my eyebrows and eyelashes are thinning! Nooooooooo! They came back fine after taxol. I had three months of just an AI before adding Ibrance. What if my hair starts to go too? It's a really cute pixie right now. Waaaah!
I know this is not a big deal in the scheme of things, but I really like having hair again.
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Shetland, I have had hair thinning on my legs and "other" parts, but so far my hair is good. At least I am saving money on leg and bikini waxing....LOL.
Hugs to all....Myra
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i'm on my second cycle of ibrance and femara and I have sore throat and blisters in my nose as well.
Let's all hang in there.
Cheers
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Shetland, my eyebrows and lashes thinned on Ibrance too. It happened so slowly, that I didn't notice at first. I've been using makeup to fill in the holes. My hair seemed fine, but I have so much that I may not have noticed thinning.
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Carolyn: I'm glad you didn't have to get the rod .
Monika : I'm glad that you're getting another Oncologist : This is too serious not to have access to your doctor !
theziz :This is my first cycle and I have a sore throat at night, but daytime is fine .
Shetland: I think my brows are thinning too. They were already thin.
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Oh wow. Ok. I got out the eyeliner and eyebrow makeup today. Sigh. Maybe my head will be ok.
Theziz, what does your onc say about the nose sores? I haven't heard of this one yet.
Glad to hear no rod, Carolyn.
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I have had the nose sores and bloody mucus from the beginning. It is one of the SEs. Myra
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Good morning and Happy Sunday ladies,
So I have been having sore hands, knees, and ankles from what I think is from the Femara. My hands have begun to swell and look jaundice. I do have liver mets, should I be seriously concerned??
Monika
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Monika, I would definetly check it out. Myra.
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Hello Ibranceland.. Just checking in. Theziz .. I had very bad nose sores early on but by cycle 5 or so they were gone and I have had no problems since. I lost major hair during cycle 8 and the trial nurse said they are seeing hair loss more as a cumulative side effect, when you have been on the drug awhile. I had no problems with hair thinning in the beginning. It is not enough to make me change anything about the dosage. It is just annoying. Just starting cycle 9 this week. Blood counts have really evened out.. Just a little low and not much change cycle to cycle now.
Rooting for all of you.
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ps Trial Doctor said to use AD ointment on the nose sores. It worked good.
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I would like to join in your conversation regarding Ibrance, which I will be starting after I have my hysterectomy in August 6, 2015. Would like to know if anyone has had hair loss with this? I just completed 18 treatments of abraxane so my hair is finally growing back. Would hate to loss it again. Are you able to work whe taking Ibrance? Thank yo
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With your hair loss is it where you need a wig or not that severe? I am starting Ibrance in August and am worried about side effects since I'll be returning to work
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I looked at the "Adverse Reactions...in Study 1" table. It said alopecia 22% for Ibrance + letrozole, but that was 21% grade 1 and 1% grade 2. I could not find definitions for those CTCAE grades, but I'm guessing grade 1 just means thinning and not actual bald spots?
Lenn13k, wow, nine cycles! I have completed four. That is interesting what your trial nurse said about the hair effects being cumulative. It sounds like the hair effects come on slowly. Do you think the loss continues, or does it level out? Is it enough to make you use a wig or cap?
One more mental adjustment to make. I need to take these drugs.
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Shetland - Hair loss is not enough to wear a wig. I am hoping it levels off like all the other side effects have. They are tracking it and we will discuss it again next month. I see the trial Doctor in August.
For all you newcomers to Ibranceland. If you haven't read through the old posts... Make sure you stay hydrated. I work outside and find I have to be really careful about that or I go down fast.
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MJ, Three cycles of Ibrance and no hair thinning so far. Yes, you can totally work, but the first cycle or two you may have some fatigue... Probably not as bad as chemo fatigue, but we are all different. You will also be recovering from a surgery, which realty takes a month or two for your body to fully bounce back from. Coupled with Ibrance it might be a bit of a wallop. Most of my fatigue has just settled into a steady " I just get tired a little earlier in the evening" kind of thing. Don't confuse that with sleep, though. No matter how tired I get, can't seem to sleep a lot.
Also, I dropped from 125 to 100 mgs. SEs were much better after that. Feel "relatively" "normal".
Stefanie
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has anyone experienced swollen eyelids? I can't figure out why my lower kids are swollen. They don't hurt or itch. Just curious if it might be an SE.
Stefanie
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I am coming to the end of cycle 2 and am bone-tired. I am trying to do too much since I don't really have a choice. On the hair front.... my eyebrows, always minimal at best, have thinned to almost nothing. Nose hair is MIA as noted by the sores etc since the area is no longer protected. This weekend I was on the subway, and the screeches were really loud so I am assuming that the tiny hairs protecting the ear are also gone. Head hair seems in tact. After chemo 10 yrs ago, I never go armpit hair or leg hair back, but again, I didn't have that much to start with. For me, the skin irritations are the most annoying [and slightly painful] side effects of this drug. Soft tissue in many places are getting sores and blisters which are quite uncomfortable. And that ever-present fatigue.
Can't comment on the eyelids. One of my side effects from chemo/treatment was the presentation of Graves Disease, so my eyes have looked and felt like crap for several years now. I am one of the lucky ones who got thyroid eye disease in addition to the Graves. Lucky me!
*susan*
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I haven't been on these boards for almost 6 months. There were very unconstructive people on the one I followed the most and I lost patience. I'm hoping this thread will be different
My initial diagnosis was stage IV ILC, grade 3. Anastrozole served me well for 1-1/2 years. I started to have progression in bones in June. At my 3 month checkup my oncologist changed me to letrozole (femura) with Ibrance. I am 3 days into my second cycle. With Anastrozole, I had some bone and joint pain (though that might have been the mets, don't know how to differentiate. I also had awful hot flashes which were more like night sweats during the day. On letrozole/Ibrance, my hot flashes have decreased, my bone/joint pain has increased. I get labs every other week to check CBC and CCHEM. My CCHEM has remained normal, no damage to liver or kidneys. My CBC shows lowered white, red and absolute neutrophil counts, but not low enough to discontinue this course of treatment. Just before I started the 2nd cycle, I broke out in bruises all over. Most were 1/8" in circumference, some were about 1/4" high, up to 2" long. I had one round bruise the size of a half dollar on my left breast. They thought my platelets were low and that was what was causing the bruising, but they're fine. I see my oncologist next Monday, question one is if the bruises signify a blood cancer (I am a lymphoma survivor). We'll see what happens, you do what you have to until you can't anymore. The story of our lives. 
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Hi Sharon: This is my 1st cycle of Ibrance and Femara. Friday will be the last day and then my 7 day break. I see my oncologist on Thursday to have everything checked. I'm on 125 mg.
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Good luck, Sharon, with your appointment next Monday. That is so scary.
I also would like to join all you ladies on this Ibrance thread. You have been so helpful to me with the information I found here. After a few different treatments - including two clinical trials, I continue to have progression (bones, abdominal wall, diaphragm) and I am now on to Ibrance + letrozole. I'm on my second week, with a blood check coming on Friday. Hoping it looks good, because so far I am doing well on this. I know it's very early though!
As far as hair - I'm disappointed to hear that hair loss is an issue with Ibrance. I lost so much hair after my last drugs, and I had a lot of very thick hair, that I have to either wear a wig or hat. I was so hoping that I would be seeing hair beginning to grow back. Oh well - as long as it's working!!
Diane
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Hope and Sandilee
So sorry to hear about your latest issues. Sending hugs that your next treatments kicks BC's ass!!!!
I moved about 2 weeks ago and immediately left for our first vacation in sooooo many years. It's a lot of sightseeing walking etc in the heat. I'm pleased that I'm doing as well as I am. Good thing it's during my 7 days off !!! Tomorrow we head home. Miss all of you. Today was the first time I had internet access!!!!!
Hugs to all
Babs
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Babs,
So great to hear about your vacation! Can't wait to hear more about it when you are safely home with internet. I have decided that there are very good reasons to get our 7-days of reprieve from this drug.
Enjoy!
*susan*
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