Ibrance (Palbociclib)
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I think a second opinion is a great idea, Myra. Your MO may be right on and a second opinion will confirm that. Otherwise, you may gain some insight that will help you change course. My MO reminds me that hormone positive treatments are a bit slower to show results. For me, stabilizing my tumor markers is a win, for now. I'd like to see them go down, but I don't expect that to happen in 2 cycles.
Ppap, happy you are taking some time off. After some rest and relaxing you will be able to decide better if its time to stop working. I'm sure there are options for keeping your insurance. Something to look in to.
Enjoy the weekend everyone. I was looking forward to a little gardening today. Not sure I will be able to. Back and hip pain isn't relenting with the Oxy, so far.
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My ANC has been around 1.2 / 1.1 for the last 2 cycles. The trial nurse thinks it will just hover around there for now. My dose is 125 mg and I doubt it will be lowered. I am coming to the end of cycle 3. The fatique has definitely lessened.I have a very physical seasonal job that I am back doing. the days are going well... Just nothing left at the end of the day. I was really worried I wouldn't have the stamina but so far so good.
My blood counts are not really changing on the off week. I did manage to get my red count up and I think I did it with diet. It is actually pretty normal.
I was trying to post a link about the Paloma 3 trial- which was ended this week because the results were so good. I will see if I can get ithe link up sometime today.
Welcome and good luck to everyone just starting the drug. After this cycle, I will go to having blood work every month instead of every 15 days. I have been getting an EKG every month but that will be going to every other month. I will also see my MO every other month instead of the every month I have been doing during the first four cycles.
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Romansma, I sent you a PM
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I read that too. Good results from the Paloma III trial. I will look for where I read it and post.
Edit. Found it!
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My MO told us this is for people who have not had previous AI. I've been on Tamoxifin and Arimidex. Is anyone on this who has had other AI treatment?
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I was on tamoxifen 10 years ago and femara. Myra.
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NorthTexas-Aromasin and Faslodex. While the drug was approved for first line, it is being prescribed for second and third line for many of us. It seems that insurance is covering it, too.
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Hi Ladies,
Thank you for sharing all the useful information in this thread. After my mets dx. I've had:
gemzar/carbo
femara/letrozole
abraxane
faslodex
abraxane
Is there a chance I will get to try Palbo? Sorry, I really did try to read through the whole thread and I don't think this one was addressed. It's just that I have heard so many good things about Palbo. A friend of mine who has been through many treatments said she had to buy 300 shares of Ibrance to get samples in the mail?!
Has anyone here been through as many treatments as I have yet got the opportunity to try Palbo without huge out of pocket expenses (which I can't afford)? Are most of you (or all of you) on the phase 3 clinical trial? I'm thinking no because some of you have written that this is not your first line of treatment.
Thanks for your time and take care!
Brenda
P.S. Arimidex, Femara/letrozole, and Faslodex did not work as single agents.
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Ladies, I am three pills away from finishing the second month of Ibrance/Femara. Blood counts are low but I feel fine...I cannot figure this out. I am due to go to a large family gathering in Norway in 4 weeks. Read: I am worried about international travel and long flights with lowered immunity..Does anyone have any ideas regarding being cooped up in these planes for a long international flight with lowered immunity...Otherwise I am pleased. Do not go to Oncologist until May 6. hope all of us have found our wonder medicine for the next few years. Carolyn from Music City
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Adnerb, I have had more then you as far as treatments go and my insurance ok'd the ibrance. I still had to get the copay card to be able to afford it, Just praying this is the answer for us all.
Redroan
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Hi Northtexas
Since my recurrence three years ago, I have been on a couple AIs; aromasin+affinitor and arimidex, as well as faslodex and chemo.I was just prescribed Ibrance and my insurance is covering it. Hope the same for you!
Margie
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Thanks for posting that link Romansma. I was trying to do it from an iPad and couldn't figure it out. All good news.
Carolyn, your trip sounds great. I really want to visit Norway! The Nurse at DF advised just washing your hands as much as possible and keeping your hands away from your mouth and nose. I am using saline nosespray as well. I always bring a small package of Lysol wipes on planes and wipe what I can. Don't touch anything if you can help it.
The feeling I get from the nurses/Dr.s on the trial is that they are not getting too hung up on the low counts and doing anything special about "germs". Pretty much old school common sense.
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Carolyn, I know how you feel about planes. There are a lot of coughs going around in MA right now, not sure if it's the weather changes or start of the allergy season. Some people say that Airborne helps (at least with colds) if you take it before going on the plane, might be worth a try if it agrees with your meds. Have fun in Norway, I hear it's beautiful !
Thanks Lenn13k and Romansma for the Paloma III info, good to hear that news.
Adnerb, it sounds like Ibrance might be an option for many - they are still figuring it out, and the insurance, but it's promising along with some other similar drugs (including a drug by Eli Lilly - not sure if I spelled it right) that could be approved soon.
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Good afternoon, everyone. I'll be taking my first Palbo pill this evening with dinner. This is second-line treatment for me, but my insurance approved it, for those of you who are wondering about getting it after other AIs and hormonal treatments.
Carolyn and others getting on planes: I have a friend who is a consultant to the healthcare industries and she talks to a lot of specialists in the field. The word from her is that the germs on the plane are transmitted primarily through surfaces, not so much the air. The planes are not sanitized after people get off- seats and armrests, and drop-down trays are all really contaminated, especially if the plane has had a quick turn-around time. What was suggested to her is to wear cotton gloves. I asked why cotton and she didn't know but said that cotton was specified as somehow being better protection.
I'll be flying to Chicago in two weeks- just about the time I expect my counts to drop- so I found a source of cotton gloves online and ordered some. They were cheap- $17 for 12 pairs, and half of that was shipping- so what's to lose. I may look a little strange on the plane, but it's better than wearing a mask. ;-) I haven't received them yet, but I don't really care about the quality. As long as they get me through the trip it will be worth it.
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Do you all take your Letrozole at the same time that you take the Ibrance? I took my Ibrance with my dinner, but prefer waiting until bedtime to take the Letrozole. Does anyone know of a problem with this? I won't see my onc for awhile and I was just wondering. I'm assuming it's ok, as the drug stays with us.
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Sandilee, I'd like some feedback on the timing too. I've been taking both pills together - but I wonder if they're more effective if you take them at separate times.
And thanks for the cotton gloves tip. I'll be on a cross country trip next month and am concerned about my really low white cell count. I also plan on increasing the amount of protein I eat. It's been hard to meet my daily intake goals since I cut out a lot of meat.
Lenn13ka - may I ask what diet changes you made that you think helped boost your counts?
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kaydeesmile and sandilee, I take them both at the same time after dinner. I was never told anything about it just make sureyou take with food. I take vit c, ashwanga(?), 1200 mg calcium with D, astralagusand pain meds. I don't think I have any more time in a day for more pills!! LOL. Pearlady gave me the vit. Supplement suggestions and they worked like a charm for the platelets. WBC did somewhat better this round too. Platelets never got low.
Finally have an appt with an Interventionalist MD on the 30th. Will let you all know what he says.
Enjoy your day all. Exceptionally warm here this week in Florida. Did someone say Global Warming? Myra.
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Kaydeesmiles, I take both pills at lunchtime since I have needed an antacid at night ever since my first radiation 6 or 7 years ago, and you are not supposed to take the antacid near the Ibrance/letrozole to make sure it's absorbed (found this out after 2 weeks of taking it wrong).
Myra, glad to hear it is warm down there in Florida, for those folks on april vacation - kind of chilly here in MA still - a lot of colds going around. My son came home from his CapeCod baseball game sick - might be strep, I think I will take the advice on the gloves when visiting the pediatrician!
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This is a 4th line of treatment for me. No problem with insurance approval.
I'm on my week off between 2nd and 3rd cycle. I was doing ok until Saturday. Lots of bone pain, especially in my lower back, pelvic area, and hips. Very fatigued. Headache. This will be day4 of feeling this way. Not sure why. Wondering if it has anything to do with my body trying to recover blood counts. Kinda stabbing in the wind here. Not feeling well at all. A little worried about starting a new cycle tomorrow night.
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Hope same for me in same areas iof pain. Spoke to RN. think it's femara SEs. Feel better. Still lucky no fatigue. Myra.
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Romansma, I'm really sorry to hear about your latest bone pain. Did you take anything for it? Sometimes my bone mets act up- never know why- and a couple of Advil help. You may already be on other pain meds, though. I really hope it clears up soon. Will you be going in for blood draws before your next cycle?
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Romansma, I'm sorry you're having trouble. Are the SE getting worse each week? I thought the week off was supposed to bounce you back? Praying for you!
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Romansma,
Sorry to hear about your bone pain. I had a couple of weeks radiation to the pelvic/hip area a year ago, and it did wonders - got rid of the pain - did you already have radiation to that area (I guess you can only have it to the same area once)? Hope you get some relief soon.
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Thanks everyone. I had radiation to my hip and cervical spine last year, but not my lumbar spine. I've had quite a bit of progression since then, but when I saw rad oncologist, they decided it was too much to treat with rads and I should go systemic instead. That's when I went on Xeloda and hated it. I took 3 cycles and quit. I take Oxy around the clock for pain and Celebrex for inflammation. I needed break through dilaudid this weekend. Weird after the previous week of having a few days of needing less pain meds.
I was supposed to redo my labs last week but I've been dragging my feet. Too tired, don't want to go. I am going here in a few and we will see how my counts recovered with a week off. I feel like they must still be low because I'm so darn tired!
I do get frustrated by the fatigue. I've been shuffling instead of walking the last few days. I finally got to the grocery store this morning after my youngest asking me to for the last few days. He's 11. I got home and threw the refrigerator things in and left the rest on the counters. Too tired to put it away! I wish there was an answer to the fatigue. My brain wants to do all these things and my body can't keep up! I still haven't unpacked from vacation and it's been over a week!
All in all, I want my cake and to eat it too! I want a medicine that kicks cancers butt but allows me to lead the active life I want to with no side effects. What's so hard about that? All in all, though, I'm happy with the Ibrance so far. Most of us know the side effects could be tons worse!
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Hope, so sorry to hear this. I know how difficult this is for you especially having small children still around. Kids are so sensitive to us and we try so hard to act as normal as possible. At least you are going to the supermarket alone. I make my DH go with me on weekends. I would be thrilled to be normal again too.
Have you spoken to your MO about this horrible fatigue? Perhaps one type of pain killer would stop the fatigue. I have heard fentnyl patches deliver relief through your skin continuously.
Good luck with your counts today. Just remember we can only do what we can. As women, it is so difficult to put ourselves first and as moms we just want our kids to live as normal a life as their friends.
Please accept my hugs! Myra.
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I'm glad to hear it is not just for first line treatment anymore!
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Romansma,
I hope you can get the pain under control. I had lower back pain that made it difficult to walk a year ago (I was thinking I had a bad back, but discovered the cancer had spread to the bone) - they radiated the pelvic area, and spine (not sure if it was the lumbar or cervical spine, might have been lumbar) and I have been able to go without pain meds for - so far - a year (don't want to jinx myself, keeping my fingers crossed). So the radiation was very effective, and I can now go walking without pain. I wonder if you should get another opinion - maybe there is a way to control the pain without being wiped out, since the low blood counts are exhausting enough (I know how you feel, I was "done in" yesterday after food shopping)!
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I know you guys all know how it feels, so I dump my frustrations here instead of on my family. I do think pain control is still an issue for me. I think radiation will be an option again once the progression is stabilized. I haven't had anymore scans since end of last year, so I should be due for one soon. If things look like they are evening out, I think I'll ask for another consult with RO. I didn't have a great experience with the last rounds of radiation on my spine. It caused horrible pain in my arms, probably from a nerve being affected. I also got the most horrible sore throat and couldn't eat for a couple of weeks. I was told that wasn't the norm to get the awful nerve pain, but still! Anyway, thanks for the suggestions. It would be good to get some rads and be able to cut back on the pain meds at some point. Or, maybe Ibrance could do its magic and wipe out all those nasty vertebrae tumors! I found myself worrying about my future mobility this past weekend. Scary.
I am going to email my MO now to get lab results before I start on 3rd cycle tonight. Hang in there everyone. So glad we have BCO to come to for info and support!
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Romansma,
Sorry that you had a bad experience with the radiation. You may have just had back luck with it, but I also think it makes a big difference who you go to for the radiation - If you get radiation again, make sure you get the best doctor, and maybe a couple of opinions on what should be radiated, and possible side effects given that yours were such tough side effects the last time. When I was first diagnosed, I wanted to go nearby for convenience, but I was glad my sister convinced me to go to Dana Farber for my first radiation treatments since they were great even though it was tough driving in there. I was unable to get Dana Farber for the radiation treatments I had again a year ago, but I must have been lucky again since the radiation I got locally actually cured the pinched nerve in my back and enabled me to walk without pain again. Even though the cancer has progressed over the last year, the pinched nerve hasn't returned so far, which has made a huge difference. The treatment was every day (15 min) for 2 weeks.
Some people also swear by acupuncture for pain relief for back pain - never tried it, but I know someone who had great success with it. My mother said they offered it to her at Mass General for her cancer, and I imagine it is available many other hospitals.
I hope the Ibrance helps, and try to get some rest although it is not easy with kids - even a short 1/2 hr nap helps when things seem overwhelming. I tell myself and my kids not to think about everything they need to accomplish (too overwhelming) but just keep constantly chipping away at the to-do list, or the math problems, one by one… I compare it to the Red Sox winning the World Series despite being down all those games - they did it by forgetting the score and just focusing on each pitch - Pitch by pitch is not as exhausting and gets the job done.
Praying you will get relief soon.
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Femera SE might be causing a lot of your discomfort. I just came off femera 2 months ago fm risingand could not believe the difference I can walk down stairs now like normal person was going 1stair at a time. I also was shuffling and legs so weak. Now on tamoxifen and no joint pain. Dexamethazone 1mg daily. Only now I notice a change in mental state I seem blue not as comfy and relaxed as I was. Sure it's the tamoxifen. Faslodex is also used with Ibrance
Wonder if that would work easier on you. Good luck
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