Ibrance (Palbociclib)
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OK, Mike, I was being too flip. I shouldn't have said not to call if you think they might say no. I think you should call because I think there is a very good chance they will say yes to waiting a week. And then the changes to appointment times could be made for the two week blood check. (I didn't edit it out because I thought you might have already seen it.) Chicagoan has a point if your wife's cancer is making her sick.
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Thanks all. She'll ask her MO. Although I've told my wife about this forum and the valuable information that I've gotten from it, she's not quite ready to dive into it herself. We're both new and still adjusting to this diagnosis. I'm hopeful that over time, she'll jump in herself because I think she'd get some comfort from comparing notes with others who have gone through what she's about to embark upon. Thanks again.
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BLMike, as others said, everyone is welcome here - patients, caregivers, family, friends, MBC affects everyone around us.
That being said, I know forums aren't for everyone. It takes some people a lot longer than others to be comfortable in this setting, and that's perfectly okay. When I mention something I read here to my husband, for instance, he kind of rolls his eyes. His attitude is, why would you ask lay people when the professionals have told you to write them day or night with questions (my oncologist gave me her cell number, and I know she would never hesitate to answer). I tell him my doc is an expert on being an oncologist (and yes, breast cancer in particular - she's a research scientist as well), but my friends here are expert PATIENTS. THEY are the ones who've had every side effect known, THEY are the ones who've cried themselves to sleep to spare their partners, THEY are the ones who know the fear and relief I live with.
I hope your wife eventually feels comfortable coming here. This forum saved my life, especially at the beginning. Everything is so new, and scary - but every single thing I thought, and experienced, and wondered about... had already been experienced by someone else, and that takes so much pressure off!
If you or she wants, feel free to send a private message - just click on my name, to the left - any time, and I'd be glad to answer any questions if she isn't ready to go "public", so so speak.
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Ciaci -- Thank you so much for the offer of a private message. I mentioned it to my wife. We are also in NJ near Cherry Hill. She receives her Ibrance in the mail tomorrow, and she's decided to start it immediately and cancel her trip to the west coast: best to start this phase of treatment immediately and begin fighting this is the logic. I'm supportive of whatever she wants to do!
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blmike, sorry that your wife is about to become an ibrance dancer , but this site is so supportive and has really helped me.
please ensure your wife takes the tablet with food: 400 calories minimum [with some fat] and drinks more liquids than usual, then even more. nobody can predict if your wife will get any SE's, some don't. if she does suffer any, just ask here. there are lots of lovely people who have practical tips which may help her; things she can try herself or medication doctors can prescribe.
i was nauseous when i first went on ibrance, which i took in the morning. then i read here that someone took the tablet with their evening meal and slept through the nausea. it worked for me
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Breast Cancer Copay Assistance Program (Copay) is now open at The Assistance Fund.
Metastatic Breast Cancer (Copay) is now open at PAN Foundation.
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Let me chime in if it's not too late. Start the ibrance and go on the trip, too. I was very wary of starting and going to work the next day. But I am finishing cycle 2 and have had no side effects. It would be a shame to miss the trip. You could always come home early with trip insurance.
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Hi, friends, here's a message from Leapfrog (via Facebook) who sends her best to all of you.
"Some of you already know this news but for those who don't, yesterday I visited my oncologist and was given some news that none of us were expecting. I was expecting to be told the cancer in my bones had progressed but I had good news about that. Despite the fact that my bones are more painful, there appears to be no reason for that so we just raised the dose of one of my pain killers. Easy! But then Andy told me the other news revealed by the CT which was less welcome. The cancer has now metastasised to my liver. Next week I will be changing to a relatively new treatment, which is chemo tablets. They don't have as drastic an effect on the body as infusions and, given that my little body has had quite a battering, when Andy described their action and the fact that the side effects seem to be relatively mild, I made a snap decision to try that as my next treatment. It's actually a very interesting drug. It doesn't fight normal cells, only cancer cells. It wanders around in your body ignoring normal cells but when it meets a cancer cell it fights it! And in my case I just know the Capecitabine will win." Cherry (aka Leapfrog on here)
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Pat - ah shucks about Cherry. Thanks for the update.
BLMike - when your wife starts, I do suggest taking Ibrance at night.
I hope you don't mind if I linger on this board. Even though I was dancing for three months, I've grown close to you all. Not many are PARP dancers.
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Holly, the dance is not in the pills; it's within us!
Just like you don't change friends when you dye your hair a different color,
you don't change friends when your pills or your chemo or your shots get altered.
You keep dancing here, girlfriend!
I sure plan to stay when I do-si-do with PARP!
And we'll all meet in the middle when they unleash those immunotherapies on us!
Love from PatGMc
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BLMike, I take my Ibrance at 8 am, with breakfast - it's my only reliable timed meal of the day. DH and I are retired, and we're always running around doing something. Lunch and/or dinner can be any time between 11 am and 9 pm, so at breakfast makes sense!! I've never had any issues with nausea, just make sure that no matter what time she takes it, your wife drinks plenty of water - helps flush the toxins out of the body. I always have a bottle with me.
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Thanks everyone on all the advice. My wife's Ibrance arrives today. We eat dinner at the same time every evening (her DH is cook and a little OCD). She's going to take it with dinner and drink plenty of water per ya'lls suggestions.
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Pat, Leapfrog is one of the former dancers I look for on my morning rounds. So glad to hear she is doing well. There is a great Xeloda thread here at BCO frequented by Joyner and Grannax2, dancers she would remember. Tell her I miss her long rambling posts. They were always such a joy. Thanks for letting us know about that sweet Aussie.
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So reference this Capecitabine... i read on google that this is Xeloda...which I have heard that mentioned on here...but I never heard that it doesn't attack normal cells only cancer cells?? Is that true?? If so, wouldn't that be like THE BEST CHEMO EVER?!?!?
Also is that used for ER+ HER2- cancers??? Just wondering if that would ever be something they would use on me....
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Nichole, yes that is Xeloda. It does have side effects, some not so great. Yes, it could be used on ER+, HER2-. There is a Xeloda thread frequented by several former dancers. The thread is called All About Xeloda.
All about Xeloda thread (first post at the beginning)
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Nicole. You should check out the link above to the main site here on BCO about treatments. it tells a bit about the different kinds of treatments for the different kinds of breast cancer. But like my Dr says untill you progress he wont know what to give you cause your cancer may mutate or there may be a new drug or trial for you. I'm scared of IV chemo so remind myself often there are lots of treatments available and it may be a while before we have to go that route. Dr says.
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Xeloda is in pill form.
My friends whose doctors were willing to start them at the lowest dose did better. Hand & foot syndrome was the most annoying side effect.
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Hi dancers. I’ve been checking in here to see how you all are, even though I’m an alumna I still dance. Good to hear about Leapfrog Grannax,Jaycee and the inspirational PatgMc.
I’ve had some progressions in the bones. Finally large enough for a biopsy so it’s off to who knows what after some rads, A little scared. Ok a Lot scared. but I’m impatient to find out all that is ahead. Will I still be Her +.?
As always wishing you all well since you dancers were my first group here. I just made reservations to go to France next year. Glad I got trip insurance but I plan on dancing on the Seine and think of all of you...of corse I will be on a ship.
Maire
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Maire, France sounds like a delightful place to dance!
My BC has gone the whole route.....ER/PR Negative (before they knew about HER2), then ER/PR/HER2 Positive, now ER/PR Positive and HER2 Negative. It keeps life interesting! My cancer is old and senile like yours so it's easy to keep it off balance!
Maybe you will get to revisit Ibrance or one of its sister drugs. My oncologist sees that as a distinct possibility for those who respond and then stop. I'm going to pray that happens for you but, then again, you may get to be a pioneer on something better.
You've been on this journey a long time so I think your BC might decide to stop messing with a survivor like you!
Love and Bon Voyage from PatGMc
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sorry I don't understand what you all mean by "dancers"?
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Sorry, Nichole. A dancer is anyone who is or has ever been on Ibrance. It is just shorter to say "dancers." I try not to use it so newer people don't feel like this thread is cliquish. It's not. For me, it is just laziness. Pat may give you a whole other explanation involving side effects.
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Nicole, many chemos and drugs hit cancer harder than normal cell, they just vary in the extent to which they are able to do it , which is called the "therapeutic window". So maybe one drug kills ten times more cancer cells than normal cells, whereas another kills cancer cells a hundred times better than normal cells, etc. Often chemos will kill any dividing cell, and these preferentially actson cancer because cancer cells divide a lot more than normal cells. Your gut (intestines) and hair follicles are some of the most rapidly dividing cells in the body, intestinal cells slough off into the gut and are replaced every five days (!!), this is why chemos or drugs can be hard on the digestion (diarrhea) and lead to rapid hair loss. Targeted drugs are different, they inactivate a specific kinase or pathway, and they can be much more selective for cancer, which may have much higher levels or activity of the targeted kinase/pathway/protein than normal cells. But often they are not kiling the cells the way chemo does, just arresting their growth and leaving them in a senescent or dormant state until it or one of its fellow cancer cells finds a mutation that lets in grow in the presence of the drug.
Other types of drug like antibody-drug-conjugates carry a toxic chemo "payload" that is conveyed to the cancer cell through an antibody that recognizes a cell surface protein that only exists on cancer cells and not on normal cells. There are other ways to go after the cancer selectively, as in immunotherapy- in general no drug or chemo ONLY acts on the cancer, there is always some measurable background of collateral damage, but for the best drugs this is kept to very low levels
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cureious excellent explanation on how chemo works against a cancer
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Jaycee....nah, I got nothin'.
Love from PatGMc
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Wow Cure-ious...that was great. Thank you for that explanation.!
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I am new here, glad to find you. My doctor wants to put me on Ibrance when my numbers start to climb. Heard it has bad side effects, is this true? I am sensitive to all meds because I have severe fibromyalgia(20 years). Put on Kisquil? when first found out had MBC in May 2018. Took one month and ended up with a digestive tract that still does not work. Afraid to try any thing else. Have felt it would be better if do nothing but Femara and see what happens. My numbers have been at 40 for one year, went to 44 two months ago. Really afraid to take a med that makes me really sick again.
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Cure-ious, that was inspired! (Adjust your tiara.)
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Baby99, changing treatment brings on such anxiety, doesn't it? I'm so sorry you have to go through this.
Here's what I've learned after 32 months on Ibrance: Some people have side effects and some don't. Also they're worse for some than for others. The side effects don't stay the same every cycle. My most consistent ones are fatigue, nausea and indigestion. The nausea can be controlled if I accept that I'll have a mild headache with the Zofran which also constipates me so I eat prunes and Raisin Bran - problem solved! The indigestion does okay with daily Pepcid and Tums. I don't have to take calcium when I use Tums so that's one less pill!
The lovely thing that has happened for me and many others is that our MBC is either missing in action or remaining stable on Ibrance which makes it worth some discomfort. My doctor doesn't prescribe the 125mg dose that was used on the clinical trial. I started on 100mg, switched to 75mg and had a little progression so I went back to 100mg.
Even though my quality of life isn't miserable I still fantacize about being rid of any side effects and getting off the medicine. I'm planning to give myself some time off this summer, just haven't decided how much! I'm dipping my toe into an extra week off tomorrow so wish me luck!
Baby, some of your discomfort may be from Femara so you might ask your doctor about switching to a different AI. I once took Femara by itself and had terrible side effects so I quit treatment altogether for a couple of years. I agreed to take Ibrance with Arimidex and things have been better. I do take Turmeric for Joints by MegaFoods this time and don't have the pain in my joints, ligaments and feet that I did with Femara.
Since I've had friends on the tumor marker roller coaster suffer lots of anxiety, I opted not to use them. If I were you and my markers had changed so little over 14 months, I think I would stick with the status quo for a bit. It isn't going to hurt you to wait and who knows what new drugs might be approved while you keep living your life?! Things other than cancer also affect those markers so your cancer may not have progressed at all! What do your scans show?
So, after all that long-windedness, I'll address your question. I've had lots of treatment over the past 25 years and my combination of Ibrance/Arimidex/XGeva is the most easily tolerated of them all.....not that it' a cakewalk but it's do-able 'til something better walks my way!
Good night, my new friend! I'm adding you to my prayers.
Love from PatGMcRee
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Just thought I would check in with you all. This seems to be my 'go to' thread. I see a lot of the regular folks posting on Micmel's thread 'My husband, my life, …" so I follow that thread also. But I seem to post here the most.
Things going ok here. Busy week. I am on FMLA from work, with the plan being FMLA, then STD/LTD, then apply for SSD. Not sure if I will be accepted, but am going through with the plan. I don't think I will have any problem staying as busy as I want to be when work is behind me.
I had the TIA (mini stroke) but no more since. My doc has me on a blood pressure pill and a baby aspirin. I got my every 3 month Xgeva injection yesterday and now have a LARGE bruise on my arm, so I guess the aspirin is thinning the blood. But I didn't get a bruise from the Lupron injection in the butt--go figure.
My next CT is due mid July. You know how that is, the scanxiety and hoping for "stable" again. I am on cycle 18 of Ibrance as my first line treatment. My onc mentioned second line would be Ibrance and Faslodex (off Letrozole). But I would think we would address the next med when the time comes---where progression happens, and would we redo biopsy/testing for mutations. So many on here say that ER/PR/HER2 can change and we post about mutations and new meds/ clinical trials for those mutations. So when I progress, I plan on asking onc about that and not just changing meds without knowing if the cancer has changed. This is so confusing to me. And I want to fight the cancer for as long as I can with the most up-to-date meds as possible.
I miss hearing from Grannax, LovefromPhilly, Leapfrog, and others. I try to surf the other Threads to keep up with all the wonderful women on here, my virtual friends.
Have a good weekend.
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candy-678 I completed my application online for SSD yesterday and thought of you when I hit submit. The application did say to call your local social security office upon completing your application if you have been diagnosed with a condition that will end with your death. That was a little tough but hey...I finished it. Then I called the phone number given and was put on a 29 minute hold. After what seemed like 28 minutes the line clicked and I was disconnected. I'll try again Monday. One thing the social worker at my cancer center said was to be sure to just put Breast Cancer Stage 4 on your application and not to include any other issues such as arthritis, etc. She said this tends to hold up the application. I'm assuming that the requested phone call on the application is to discuss Compassionate Care which if approved is a much shorter approval process.
My first scans after starting Ibrance/Letrazole are in August and I'm starting to think about them already. One reason I'm thinking about them is that I had a mild allergic reaction to the contrast dye when I had my initial scans, and now I have to take prednisone and benadryl before the test. That's causing a little anxiety. The other reason is that I'm impatient. My CA27.29 dropped a bit the first month on Ibrance but my CEA climbed a bit. So did my Alk Phos. I'm trying to figure out if this treatment is working by the markers and I know I should NOT do that but it's just so much on my mind.
You have a good weekend too. I stopped working this week and have slept in to 8AM the last few days. Pretty delicious to do that!
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Moom- I, too, am highly allergic to ct iodine. I have to premedicate before scans with prednisone. So far it has been easy with no reactions.
Cure-ious- I love how you make something so complicated into something so easy to understand.
I am still waiting to hear if my olaparib is approved by my medical insurance. My thorocentesis is scheduled for Monday. It can't come soon enough. I am ready to breathe better.
Cany- good luck with applying for disability.
Baby - even though I was on Ibrance for only three months, the side effects weren't too bad. Some days I would get just a bit nauseaous. Other days I would have heartburn. But I could totally feel the fatigue. I would just about crash at 4 in the afternoon. I took my Ibrance at night i work full time, as I am no where near retirement age and I carry the insurance for the family. It is scary. Just write down all the side effects you have so you can bring them to the MO. Best of luck.
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