Ibrance (Palbociclib)
Comments
-
Wonderful news Kaption
0 -
Kaption-Good luck tomorrow
Babs
0 -
Thanks, Kaption. That's really helpful to me. Again, really glad to hear things are stable!
0 -
Kaption-great news!!! My last post somehow got delayed & just showed up. So happy for you!!!
Babs
0 -
Happy Dance Kaption!
0 -
Me too - eyes watering when I first get up - kind of irritating...
Amy
0 -
Thank you all for sharing your knowledge of side effects with me. Makes me feel better. About an hour after I wrote that post, I started getting a rash. At first it was small, but now it is spreading. Some of it is itchy. Not sure if it is a reaction to the drug or just your normal seasonal allergies. (I hear you can develop those even in your senior years.) Called my onc to check and she wants to see me tomorrow. If this is an allergic reaction to the drug, I hope I can still take it but maybe at a lower dose. Sounds like it really works.
0 -
great news Kaption
0 -
Great news Kaption!! So happy to hear it! I also heard back from my onc office today, and scans are stable! No new areas of disease and the mets in the liver are stable!! A huge sense of relief. I now start my 7th Ibrance cycle tonight. Sending hugs to all you ladies!
Alissa
0 -
SO wonderful, Alissa! More happy dances!🎉
0 -
arbojenn, just thought I'd chime in. I have been in the ibrance trial sine June 2014. My dosage had to be lowered to 75 due to allergic reactions, skin sore, itchy watery eyes, rectal bleeds.
I still get the sores and severe itching everywhere. I am Ned so far but still have a lot of these issues but Ned is well worth the aggrivation. I am on letrozole with ibrance
0 -
Kaption and Alissa, So happy for your good scan results!
arbojenn, I had rash on my chest and arms and a few itchy bumps around the end of week one on my first few cycles, They went away after about a week and decreased each cycle. Now in cycle 7, I have had zero ses (so far) this month. Glad your mo is going to see you today and hope it turns out to be a minor se for you.
0 -
Hi arbojenn,
I developed a very mild rash on my arms chest and back also but not until the first week of my third cycle and it didn't last long - about a week. It was faint but noticeable to me and if I pointed it out to someone they could see it. It was kind of patchy and a little itchy but not bad. It was redder and itchier after a hot shower. There were also just a few tiny red dots that I would describe as "scabby" but that sounds worse than they were. I"m waiting to see if it pops up again in the next cycle.
It's good that you are seeing your onc about it though. We are all so different in how we respond to the protocols. Let us know what he/she says.
0 -
Re: Watering Eyes
Steelerose, Lynnwood, Shetlandpony, AmyQ and anyone else with this SE - what if anything can be done about it? Has it been sporadic for you or is part of your everyday life? My face is taking a beating from the tears. Last night the skin on my cheek and around my eye was all red and burned. There is also a little swollen area at the top of my cheek bone now. I was able to sleep without tearing and woke up without tears but then once I was up and about it started up again. My eyes are puffy. I'm hoping this will pass. Please let me know what your experience has been with this SE. I will reach out to my ONC but I'm always interested in what others have experienced. Grateful for your input!
0 -
Animalcrackers - I also have excess eye watering, need to use a q-tip each morning to clean out the goop. It's a SE of Ibrance along with fatigue and hair loss for me. Hair loss was 22% from the study my onc oversaw at UCLA. Arbojenn - thrilled if you are SE free. Sometimes I have gum bleeding, but that may be from low platelets. I start round 4 on 3/31. Kaption - hoping for good scans! Sonya - enjoy your cruise! I'm readying for Spain/Portugal in July and planning to hit a few wineries along the Duoro river.
0 -
hello ladies. I have been MIA from the boards for a couple of months. Busy with life (yay!) and trying to keep as healthy as possible. I am on my 10th cycle of Ibrance/Letrazole. As a reminder, my TMs didn't start to drop until the 6th month and I almost went off if it. Glad I didnt because now they are plummeting and... Get this... Almost in NORMAL range. My Onc says he is seeing a bit of that...the Ibrance not kicking in til late, but then working really well. I had CyberKnife on c7 bone met back in November. PET shows it is gone and mostly healed. Still have a small one sitting right on my sacrum, just handing out not getting better or worse. I'm working out a LOT, and my SEs have become very minimal.not sure if that is related. Anyway, that's my story and I'm sticking to it. Wishing everyone well.
Stefanie
0 -
Alissa - I'm glad to hear your good news!
Stef - Fantastic news! I'm so glad you are getting the most from this treatment. Made my day to hear your progress!!!
0 -
My eyes water too.
My MO called me yesterday and my spine MRI showed no new activity since Oct. He said it's stable. So since my CT scan the previous week showed nothing so I'm pretty happy. This is the first time since my de novo stage iv dx last June that I have gotten such obvious good news. He apologized for the late call. He had called about the CT scan and he thought he had called about this one too. The office is excellent and I really like him so it's fortunately a non issue for me at this point.
Hugs to all who are waiting for results.
Ellen
0 -
Stefanie--congrats on your results. You know, my first scan after starting Ibrance and Letrozole was about 3 months later and at that time I had mixed results--some progression but also some regression of spine mets. My MO said we are sticking with these drugs--they will work. So 5 months later, sure enough, my spine is stable and so far no mets anywhere else. Maybe it can take a bit of time to kick in for some of us. My Alk Phos was steadily declining all this time. My MO does not use markers so I have no input on that.
Ellen
0 -
Stephanie- that is very inspiring. I hope to get back to regular light yoga and exercise walking. You inspire me!
0 -
Hello ladies,
I need some advice. I am about to board a cruise ship tomorrow. I had blood work done yesterday and all we know is my WBC, RBC, and total nutraphills are low. I got the results over the phone and all I remember is WBC is 1.1 and nutraphills are 815. I have two pills left of my first round. Should I take them? As it is I will be starting my second round about 4 days late because I need to get back home and do blood work before I start my next round. I just feel like if I skip my last two pills it will give my body more of a chance to rebound while I am on the cruise, therefore giving me less of chance to get sick. Opinions?
0 -
Ellen - glad to hear your good news! Hope you can do something fun to celebrate!
0 -
Sonya, after spending three days in the hospital my onc had me take a 3 week break from Ibrance so I would think 4 days wouldn't be a huge problem, however if in doubt you should check with the doc. Have fun! Edit to add: I didn't read your question closely, therefore I suggest you finish up the two you have then take the break.
Amy
0 -
Thank you Amy. I'm sorry you hadto spend time in the hospital. Which round were you on at the time? What caused you to have to go to the hospital? Sorry for all the questions. Just need to know what to look out for. I pray I don't get sick while on this cruise. I do have antibiotics with me just in case.
0 -
I had just completed my first 21 days of Ibrance when I got cellulitis in my lymphadema arm - three days on IV antibiotics did the trick along with 10 days of oral. The cellulitis occurred from a cut on my finger on the same arm. My WBC was .8 and my ANC was also pathetically low which was why the long break. I'm currently on round 2 and while my WBC and ANC are low, they're no where near as low as last month. Good luck to you.
Btw, cellulitis presents itself rather quickly - my normal temp went to 102 in about 45 minutes. My arm swelled and became bright red so the symptoms were not hard to miss. I'm sure you'll be fine. One thing I was truly grateful about, I had planned on a 12 day tour of Israel through my church but at the last minute pulled out. I just wasn't sure I should be going. As it turned out, if I had gone, I would have ended up in the hospital there. This all occurred on the second day of the tour - when I told my Priest he said, God was watching and I was listening. Anyway, I could have really screwed up the tour for everyone else if I ended up in the hospital.
Good luck to you -
Amy
0 -
Stefanie, how nice to hear from you, and to hear that things are going well! Almost normal TMs is fantastic. And how you are out there living life! Kaption, Alissa, and Ellelou, so good to hear your good reports!
AnimalCrackers, my eye symptoms get worse during week 3 and the first half of my week off. I use Systane Ultra or Systane Balance eye drops several times a day and they do help. Systane also makes a heavy-duty gel you can use at night, that my optometrist recommended. Also, I put some lotion on the skin where the tears drip, as a sort of barrier. I imagine Lansinoh would be a stronger barrier.
Stefanie, Moissey and Kaption, your comments and discussion about how your onc decides when to change treatments caught my eye because of what I'm going through right now. My March PET-CT scan showed two suspicious areas in the liver, but the increase in uptake and size is subtle. Also my TMs are double what is normal for me, but still in normal range. I am also having some mild liver pains. My gut feeling is that it is progression, and I cried a lot yesterday when I read the reports. I talked to my onc today, and she said we will check the TMs again in two weeks. She actually takes my feeling about it seriously, but she doesn't want to give up on a treatment too soon. She said that a 25% increase would typically prompt a treatment change, and I think she meant in scan results, but maybe TMs also.
So, if this is progression, I will have gotten only a year from Ibrance + letrozole. Starting from NEAD, I had really hoped for more, at least the average 20 months. Sad face. If I need to switch, it will be to faslodex since it is a hormonal therapy that is not an aromatase inhibitor like letrozole is.
0 -
Shetland, cAn you take faslodex instead of letrizole, but stay on Ibrance? That might be something to try.
I'm sorry you are sad. It's so unfortunate that our disease has so much influence on our emotions. I had a rough year due to surgery and progression. But the last few months everything is turning around, and suddenly the dark cloud is gone and the cancer isn't hanging around my neck like a weight. I have more energy and am generally happier. Go figure. But I feel where you are right now. It'll be rough until your next PET, which will hopefully be good and will relieve some of your anxiety. But, I totally feel you.
Stefanie
0 -
Thanks, Stefanie. I was feeling quite happy and hopeful until this month. Wham! I will try to be patient and focus on other things while waiting to find out more. Hearing how things turned around for you is encouraging. So happy for you! I remember all the wondering about whether you should stay on Ibrance or not, waiting for it to work. Will I stay on Ibrance even if I switch to faslodex? That is a good question.
0 -
Amy I am so glad that God spoke to you and told you not to go. Hospital in Israel would have been a bit scary. I plan to let the ship doc know my situation. I also have two different types of antibiotics just in case. Hopefully all will go well. I will just wash my hands like a psycho hand washer and pray a lot. Also have to stay away from raw foods. No lime on the margarita. Lol
0 -
Excellent idea letting the ships doctor know. Btw, where are you going? I love cruising but my husband doesn't so it's pretty difficult to get him to agree.
How long will you be gone? Also, I'd recommend staying out of the hot tub onboard.
Have a great time and forget about cancer...live it up!
Amy
0
