Ibrance (Palbociclib)
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Going to mo tomorrow morning. Getting results of Pet, blood and taking my 20 th day of Ibrance round 2. I have a bad sore throat tonight and I’m so tired from a very stressful day ( non cancer related) no losing sleep tonight. I hope.
Hoping I’m still at the Ibrance party this time tomorrow. Good luck to all and hoping for good results for all. I used the pill case and it helped one day I forgot if I took it or not. Take care all
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Hope, thinking of you today, hoping Taxol wasn't too harsh and you got home cozy and comfy to a cup of tea.
Faith and Airlinegal, praying for positive test results.
Nkb, interesting to hear about the 2 hour rule. I've been told it takes 48 hours to get results. If my MO isn't available, which is often the case because she's the department head, I ask the on-call MO to call me with the results. Then I can follow up with my regular doctor. At least that's how it's worked now that I'm in "the system." When I got my CT scan pre-diagnosis, since I didn't hear from my regular doctor or the pulmonologist for a week, I figured I was in the clear. I guess they were drawing straws on which one had to break the bad news.
Amarantha, talk about prayers answered! Good luck in your search for another doctor. You deserve a good and trusted medical team around you.
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Airlinegal and Maire, I am praying for positive results on your news for tomorrow.
My onc sends me an email ahead of my appt just to say it is good news. I haven't had bad news so I don't know what she would do, but it usually only takes a couple of days. It is crazy how it is different for everyone.
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Hi Ladies,
I was told not to let the Ibrance touch other meds and that's why she (nurse) suggested not to put it into a pill box where you're keeping other pills...she also said I shouldn't touch it with my hand.. use spoon or I just put the pill in the lid and swallow it from there... weird but true...
Things are going good with Ibrance.. sore butt tho.. from Faslodex....
Sending good vibes airlinegal and Maire..
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Good morning...
Airlinegal/Maire....Will be thinking of you and waiting to hear good results!
Faith....I need to get my flu shot. I get to skip my Taxol infusion on T-Giving, so I think I will try to get it the following Monday, before my infusion on that Thursday.
Jaylea...All went well with my Taxol infusion. My oncologist was running behind (as usual)...my appointment was at 12:30 and it was 2:00 pm before I got into the chemo chair. With pre-meds and Taxol, the infusion was 1-1/2 hours. I got a bit "relaxed" from the Benedryl for a few minutes, then I was fine by the time all was over. Oh, I did get my X-Geva injection. I had my choice of arm or belly...I chose my arm. She injected very slowly and there was nothing more than a bit of stinging...nothing earth-shattering. I have no soreness in my arm today.
My sister was with me and we went to Applebee's afterward. I felt fine. I did fall asleep on the sofa watching TV about 8:00 pm for about an hour. Then, woke up and didn't go to bed until 12:30 am. I was up at my usual 6:30 this morning. So far I feel fine. I will be guzzling water all day.I need to make a grocery run. And, pick up some Claritin...just in case the pains begin. I did take a Tylenol yesterday after dinner. So far, so good....praying things will continue in that direction.
Have a wonderful day/weekend!
Hope
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If you are not supposed to put Ibrance in a pill box, I'm in trouble. If Ibrance is not supposed to touch other meds, I'm in trouble. If you are not supposed to touch Ibrance with your hand, I'm in trouble. But since I've been taking it for twenty cycles and doing fine, I think I'm ok. I don't like the big pill box that comes with Ibrance because it would be quite a coincidence for it to match the actual month's days when you are taking it. Unless you start the cycle on the 1st of the month, I would get confused.
My approach to waiting for results is different because I refuse to give Mr. Cancer or my MO that much power over my life. I don't allow scanxiety to take away my enjoyment of even one day. I always wait until my next MO appointment, which is at least a week and sometimes two. I could call but I don't. Maybe they have the results sooner, maybe not. It started when I was watching Breaking Bad and Walt and his family are sitting in his MO's office waiting for scan results, looking like the floor could drop out from under them at any moment. The MO walks in acting like a god, aloof and knowing he is in control of these people. I said I would never do that. The results will be the same no matter how much anxiety you feel. I'm not saying this approach is easy. I'm not claiming that during this week/two week period, the scan results are not in the back of my mind. When I look at DH, I know the are in the back of his mind. We just push it back as far as possible and enjoy as much as possible.
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Good morning Ladies
I have my radiation consultation on Monday. I already completed 14 rounds in August but the hip lesion is sending me back for another look. I have my CD all ready for the DR to see whats left. I hope the pain I feel is the Ibrance working on it and it disappears. I guess to everyone else in my house I just have another Dr appt. but to me...
Leapfrog I'm making prayers for you and sending encouragement. These long term marriages are filled with many bumps and turns only the people on the inside know when they're over.
Faith I hope your broncoscopy went well.
Chris congratulations on your good news.
Introtolight congratulations on your good news as well, we're rolling in clover.
Nonahope when my ovaries were removed they told me the cells were breast cancer cells and that was a good thing because they weren't a new type of cancer/ovarian cancer. I'm assuming the breast cancer cells in the bone marrow mean the same thing.
Ciaci I was sent the same pill caddy when I started Ibrance in June.
Have a good day ladies.
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Jaycee49- i assume that many of these pill handling and storage recommendations are for theoretical risks. I was just told to wash my hands after taking.
I think it is wrong to make you wait for results any longer than necessary. I do agree that progression would be best discussed in person- but, not if you have to wait so long to get an appointment.
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I just remembered another funny thing I was told. To flush the toilet twice every time I peed. I live in California and we have had many years of drought and Forrest fires. Some years we have been told not to flush pee at all! I have super low flow toilets, still not flushing twice
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Hi ladies -- I've been reading and following, and find so much encouragement on this thread. I'm new to this whole this, just having been diagnosed in October.
I finished my first round of Ibrance, and had minimal side effects other than a week of fatigue. Not tired -- wide awake actually -- but not wanting to even move from the couch. I was even excited because the pain from my liver met went away -- ever hopeful that the tumor had shrunk back even a little from the ribs.
And then I went for my blood work before starting the next cycle. My white counts and neutrophils tanked, and they held me off a week. How common is that? How does your MO handle it? I'm nervous that if they don't go up, I'm losing ground. I know I'm not used to being Stage IV yet, and that there will be more episodes to come. I guess I'm just a little rattled and stretched thin at the moment.
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Hi SweetSide. We are so sorry you have to be with us, but welcome you to this very caring group of ladies. Your experience is not isolated, and there are several ladies here who had the same experience. I will let them weigh in on it more, but wanted to encourage you to give your body time to adjust to this onslaught of medicine. Low white counts and neutrophils are the norm although there is a minimal acceptable level. Ladies?
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Sweetside- i had to lower my dose to 100mg and i still have had to wait two weeks for the numbers to bounce back. It is working well so far and my MO is not worried about the two weeks off.
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This is the first time I have posted anything to this site. I have been "stalking" everyone's posts to see if anything helps my head. LOL I am finally ready to contribute and it feels good to talk to anyone that truly knows what you are going through. I am on my third round of Ibrance, I too had to stop taking for a week because of neutropenia but went back on, next month they will be lowering my dose from 125 to 100 and my Dr. said not to worry because effectiveness won't be compromised and to not be surprised if after on it a while that it needs to be lowered again. I am also tired but am still working. Once I get to work I am fine but getting myself up in the morning with dressing, putting on make up and doing hair is a daunting thought. My disease manifested itself as lesions on my right breast and I was treated for everything from shingles to impetigo because I had a clean mammogram. Finally a young dermatologist did a biopsy and found that I had cancer and the rest is history. The one thing different with me from any of the posts I have seen is the rash. My doctor told me that the rash can be a window to what is happening inside my body as far as medication helping. Well after taking Ibrance, letrozole and Xgeva for 3 months the rash is almost gone and just a big scar. I want to thank everyone for telling their stories, I needed that. I have a wonderful supportive husband that will do anything for me and sisters too but everyone tries to ignore the side effects and wants me to think I don't have any. Looking here I know I do too and it is not all in my head. I too go for scans next month and will holding my breath. I wasn't trying to hide diagnosis, just didn't have it as public.
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Jacee, it sounds like you and I are in big trouble. 25 cycles, and I have done none of those things. I don't wash my hands after taking, nor do I flush the toilet twice. Oh well...wee made it this far, I guess its ok. I usually get my scan results the day after at MO appointment, Dec, for some reason, I see Mo the same day. I do get scanxiety, I try not to, but it happens. I don't think it will be bad next month, as I am expecting progression based on hip and pelvis MRI results. I have had lots of time to accept it, although I will admit that so far, I have been to afraid to look up how they treat bone marrow. I'm leaving that until after Thanksgiving.
Always happy to see the good news and I am praying for those getting results today.
Claudia
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SweetSide and Suzymom; I am sorry that you have to be here, but happy for the company. Suzymom, I have a rash on the place of my ex-breast, which is actually skin mets, it is comforting for me to hear from you that three months of Ibrance helped clear you up, I hope it works for me too. I have am almost through my first round (two more days until the week off) and Sweetside, I know what you mean about not wanting to move from the couch. Sleeping, hiding under the quilt is my favorite hobby.
But I did manage to get moving yesterday - I took the train to Nantes (long train ride !) and reviewed a performance of baroque music in the opera house. It was most delightful. I walked around for hours trailing my suitcase, and my mouth was agape the entire time. I had not seen the town for 15 years, and it has had an amazing transformation- so gorgeous, lively, with green parks, two rivers, major parts of the old town are pedestrian streets, inspiring, really a gorgeous place to live, work and celebrate, I had no idea. I get to go back to review another opera in a week or so, and am really looking forward to it. It did take a lot out of me though, I had to take a two hour nap upon arriving in my hotel. Now I am home and am going to bed very early. It seems I missed something because I just read there was a bomb scare in the train station at eight pm. I went through the station at noon. Ha !
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Janet...I loved the pill container. I always started my day 1 on a Sunday and just kept the cheat sheet they provide and fill in the squares each day. I kept my Femara in with the Ibrance. As for the scans, I'm more anxious having them than waiting for the results. My onco will call immediately if there is anything of concern.
Tanya...Good luck with your appointment. Hope the Ibrance is doing its job. Someone else who has bone marrow mets told me the same thing, so this gives me a bit more hope.
Nkb...I was told to throw a little bleach in the toilet after each flush. There is a sign in the chemo bathrooms to flush twice!
Sweetside...I never had my counts tank, but I know many on the board will help you along with this part of the treatment. It's not uncommon. Hang in there!
Suzy...You will love all the information you will get from these knowledgeable ladies. I do think there is someone on this board who has skin mets, but I don't remember who. I hope she sees your post and will weigh in. Wishing you a most successful journey.
Claudia...My bone marrow mets are being treated with Taxol only. He told me yesterday, after my Taxol treatment is over, I will be put back on some other form of oral treatment. But, it probably won't be Ibrance.
Off to put my groceries away.
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Thanks IntoLight and Nkb -- I feel a little better about the week off. The mets appeared out of the blue. I fell in the summer, and cracked a rib. When the pain didn't go away, ended up having a scan, and after 7 years clean, they found a huge tumor in my liver. If I hadn't fallen, I wouldn't have found out that the cancer was back - the fall triggered the pain. I'm glad that this board is here to talk with people in the same boat. I haven't told many people I work with because I don't have any answers to the questions. In time -- but right now this way lets me get through the work day.
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I spend a lot of time thinking about
moving off the couch. My new rule is if I have three reasons to get up, I must get up. Then, the trick is remembering the three things.0 -
Good news today after almost 18 months pet scan looked great....nothing going with lung and tumors are still going down. My Onc apologized for having a week go by without knowing results and is trying to get the schedules closer together. The other good news I am now Ibrance 75 and the Onc is planning on the the normal Ibrance dosage days with two weeks off instead of one. If that does ok then move me to 21 days on and 3 wks off. She has some patients that she is doing that with now. Hang there new people things seem to be getting better with Ibrance. Prayers to all of you.0
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I like that Jaycee. Good brain workout but I may never get off the couch. even with my list of 3 things at my appointment today I had to read them to mo.
Just back from appt. Looks like I’ll be leaving this little group now. My mo has taken me off Ibrance. Looks like some new mets in L4 area. I will go for MRI next week. She may put me back on Herceptin. We don’t have a biopsy of these lesions. Too little or close to spinal cord. She was taking a chance that since it wasn’t in my brain maybe it was just ERPR. Whites tanked at 75mg so it was not to be. myleofibrousis giving me trouble. On a zpack for croup...probably viral but not taking any chances. Had Faslodex today. She’s continuing that since other areas didn’t get larger.
A bit disappointed but looking to whatever we decide after MRI.
I’ll keep checking to see how you are all doing . You have really helped me by your posts and support. You will all be in my prayers every day. I consider you all dear friends and wish you peace and love.
To you new ladies this is a wonderful group . It’s a great place to share your thoughts when you can’t talk to family and friends.
Happy Thanksgiving. You are on the top of my list to be thankkful for. Moderators thank you.
Maire0 -
Every announcement of hopeful research is a gift:
http://www.mountsinai.org/about-us/newsroom/press-...
I look forward to getting back to read what's happening with everyone. We are celebrating "Notcher" today and we bet we're the only ones. Every year we celebrate a day that is NOT our granddaughter's birthday. The cake says, "It's Notcher Birthday, Lainey!" (as in It's not your birthday). There are cards and presents and dinner out and we want it to remind her that you never have to wait around for a reason to celebrate; you can have Notcher any time!
So Happy It's Not Your Birthday to all my sisters here. Celebrate!!
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Pat, I love your Natcher day--wish I had read this idea before I went to visit my grandsons since I can't be present for their birthdays!
The Susan G Komen 3-day walk today in San Diego walked right along the bay where I live. I could hear the cheers from my balcony all afternoon (and still continuing) and they camp tonight less than a mile away. I didn't feel well enough to walk down to the bay and cheer them on, but it was great to hear them. Although I don't agree 100% with them (don't get me started) it is a testament to all of our wonderful Pink Ladies who have gone before us and are a part of our story. So many people really do care and take time to show us. I appreciate that very much as I know I am a recipient of brave ladies who are part of the continuing research.
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welcome to the newbies. There is a lot of support here. I needed a dose reduction to 100 after 3 cycles and still sometimes need 2 weeks off before my neutrophils recover. My CT scan after three cycles was very encouraging Despite the dose reduction, so my oncologist isn’t too worried about the 2 weeks off. There is clinical trial running out of the Cross Cancer Institute in Edmonton, Alberta to see if 100 msg of Ibrance is just as effective as 125 msg. Dr Anil Joy is the principal investigator. The theory is that here are fewer dose interruptions on 100 msg so it may be more effective in the long run.
Maire: sorry about the progression. You are a pioneer as the clinical trials for Ibrance excluded women whose tumor markers were Her+. I pray that Herceptin will be helpful to you as it has shown such promise for women who are Her+.
I hope that everyone has a wonderful weekend. Tomorrow I paddle withe breast cancer dragon boat team, have a Church function in the afternoon and a concert of medieval music on Saturday night. Sunday after church, the dragon boaters are making Christmas wreaths to sell at a craft fair and then my son and granddaughter are coming for dinner. I hope that I survive it all!
Jo
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Janet and Bigb, me three, in trouble on all counts. Double flushing is not in my dna, not in drought-stricken Northern California.
Hope, my heart is eased a bit that, while late, your infusion was uneventful and you had good company. You used my favorite saying-I want my headstone to say "So Far, So Good."
Sweetside, my labs tanked after my first Ibrance cycle. After my week off, they tanked further, and I delayed my next cycle for two weeks. I was devastated. But after a few cycles things settled down, labs are low but not too bad, and I'm feeling good and on a regular cycle.
Airlinegal, hazzah on your good news.
Maire, please do check in once in a while, as your voice will be terribly missed. Sending prayers to you, love, for great success on your new treatment.
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airlinegal....I wait for my next appointment but as I'm on a trial I have monthly appointments and it's usually only a matter of a week to wait. If I'm worried I can ask my trial nurse to speak to the oncologist but I tend not to do that. Good luck xxx
Faith...hope you feel better soon.
Amarantha....isn't it amazing how things work out sometimes if you just wait and don't force issues. I'm so glad you didn't have to assert yourself for nothing. Thank you for taking the time to really think about my home situation.
I know my situation looks dire and unsalvageable but I'm going to leave the family home anyway and live in my son's apartment while I decide if this is really going to work. I'll still go back home the night before my blood tests, scans and oncology appointments because it's easier for my son and he's the one who takes me to all my appointments and looks after me. He's a saint. If this works out, I'll be looking into getting a slightly larger apartment as this is a studio, not much larger than a hotel room, and I'm sleeping on a sofa bed. But I can make a little home of it and put some geraniums on the tiny balcony and be happy and peaceful. My husband will always love me. It's weird. But he still can't work out his priorities. Well, he can but he can't act on them. I'll see what happens when they return from the US but I'm enjoying my independence.
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Leapfrog, I love that you are enjoying your independence.
The person with skin mets is me. It's the continuation of Inflammatory Breast Cancer, I guess, or as the French call it - lymphangite carcinomateuse du sein.
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Maire, we'll MISS you! Please check back in!
This is very selfish, but I'm jumping right to photos of the rehearsal dinner tables in VT....the weird Osage oranges, the red ilex berries, and the votives were gorgeous....hooray to my wonderful designed who directed from 600 miles south!! Here are one with votives lit in the dark and one while getting ready.
We're headed back to VA today, exhausted but happy! Wonderful wedding. I'll send a photo when I have one. Our son was exuding happiness, which is all I could hope for. They glowed at each other!
Hugs to all-
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Oh...one other thing. I'm in the group who should be dead from touching the Ibrance. I pick it up with my fingers and pop it right in. I don't mix it in a box with other medications but just because I don't need to. I would otherwise. I surely do NOT double flush and hadn't even heard about that.
I did have one odd experience, but it was ultimately fine: a local inn put on a day of free spa treatments for those being treated for cancer. I chose a massage. The masseuse asked my if I were on chemo, and when I replied that I was, she apologized but said that she had to wear rubber gloves "for her own protection". Made me feel very odd and sort of "leper-esque", but it was fine. I didn't know the difference. It was a lovely day. And since they didn't have enough who signed up, they offered me a pedicure, too! I accepted!
My MO refers to the Ibrance as a "strong chemo", whereas I have seen others on the site note it as not being chemo. My money's on his assessment, as he is head of a large cancer institute in RVA. I'm glad it is, as I want STRONG.
xox
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Jaylea, thanks for the encouragement. I must learn patience -- afterall, this is a distance race, not a sprint. And I'm glad to read from the others that there is success on lower doses as well.
Leapfrog, I'm sorry to hear of your troubles at home especially on top of treatments. But you mentioned something I have found very helpful in the past -- it's amazing how things work out if you wait and don't force it. There can be great peace in that as doing nothing IS doing something. Enjoy your independence.
As for touching the Ibrance -- that doesn't apply to us. Afterall, we have to swallow it. It's the caregivers who shouldn't touch it for risk of absorbing it through the skin. But my MO hasn't said anything at all to me about double flushing, etc. And this may be a bit personal, but what about sexual intercourse for anyone who has the energy, desire, and loving partner? Any mention from doctors about the Ibrance being secreted in those bodily fluids?
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Airlinegal...Great news! So happy for you.
Maire...I'm so sorry you are leaving. I was disappointed that the Ibrance failed me, but I'm staying on this board - as well as others - I want to continue to support these lovely ladies. Hope you check in with us and keep us posted on your future treatment.
PatG...Your posts continue to make me smile. I love your celebration!
Chris...I'm not a Komen fan...but, I sure do admire all those lovely ladies who walk for a cause.
Jo...What a fun weekend for you! Enjoy!!
Leapfrog...Continued prayers for both your journeys.
JoynerL...The tables are absolutely beautiful!!! Enjoy this special time!
Off to my granddaughters dance studio to work at the desk...my Saturday morning "job"...ho, ho, ho.
Hope
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