Ibrance (Palbociclib)
Comments
-
Ciai: Thanks for the reply. My oncologist submits prescriptions via e-script so I don't see the actual prescriptions. The prescription is for 100 tablets 15mg each no refills. "Take 1 to 2 tabs by mouth every 2 hours as needed". None of this makes sense anyway.
0 -
Hi everyone, just checking in to say hello. I’ve been ghosting every few days and praying for you all as I read. I’m now on my 6th cycle of Ibrance 125 and learning how dance with different side effects monthly. It’s been so encouraging to see so many taking the IF for so long !
Praying we can all enjoy Thanksgiving. I’m thankful for this forum of wonderful strangers who become more like family members with each post and I hope to be here on Thanksgiving day for those who want to chat or keep company. I’ll bring dessert !0 -
RadagasRabbit - I have noticed hair thinning (more and more hair in the comb), but not itchiness or soreness. SEs which ones and how intense seem to vary a lot with individuals, Rxs etc. Hair thinning is listed in the SEs. I just finished cycle 2, and tomorrow starts the 7 days off. Nasal passages irritated, looking into a humidifier (looking at the AirInnovations MH-701), and possibly a saline spray. I think it is more than the cold I am getting over. Has anyone experienced increased mucus? Not sure if it is just the cold I had, the tumor and lymphedema, Ibrance, all of the above. I am amazed at how much mucus I still have.
0 -
Bluegirlred, I have what feels like post viral nasal drip which irritates my throat and makes me cough. I was very worried at first, as a cough was the sign I had when I got MBC. However, about 17 months on Ibrance 75 it is annoying but I am not concerned anymore. I also used to get mini nose bleeds, but those have stopped now. Sorry, no practical suggestions to help !
Next time you see your medical team remember to mention any SE's you have, they may be able to suggest medication/strategies that will help you.
0 -
I really really wish there was a quote option! It's so hard to respond to someone or multiple people. A 'like' option would also be welcomed. I think it's a good way to show support to someone.
Hi again Miss Rabbit...my hair never grew back fully after my chemo treatment back in 2009. What did come back was very thin also. Since taking Ibrance I have lost more again.
0 -
I found that the letrozole was MUCH harder on my hair than anything I've ever taken (but for the chemo that made it fall out!) I took biotin for a long time, but I'm not sure it helped much -- just made me feel like I was doing something to help. I will say that on vibrance and faslodex, while I may lose a little bit of hair, it's not much.
BlueGirl, I, too, had major nose issues. I am now in the middle of cycle 5. They began to subside in cycle 4, and now I only have to blow my nose a lot in the AM when I get up. I bought a humidifier and put it right next to me bed. That helped tons. Others on here advised using saline spray and a few other things. They also helped. I also started buying Puffs tissues with Vicks in them. Maybe it's in my head, but I think it helps. It's VERY annoying.
0 -
hello,
The scalp pain seemed to come and go for almost a year after starting i/f. Feels like someone ripped your hair out by the roots. This is when I had my biggest hair loss. However, it's not enough that people really notice. I went off the femera recently because of the horrible muscle, joint and bone pain. Started aromasin and started getting the scalp pain back. The body pain seems to have abated some. Now for my rant. My husband's insurance and my Medicare left me with almost no medical bills. Of course now his company is switching to bcbs. Now it seems I have to go through a mail order specialty pharmacy and pay a copay for the ibrance. It is the new insurance company that is messing with my benefits . For the first fill of any pain meds or benzodiazepines i can only have a 5 day fill then a 2 week fill then a month. After that you and your doctor have to give reasons why you need each med. For me it's a disaster. Don't I have enough to worry about? After all I'm dieing, I'm depressed, frustrated and angry. I just want to be left alone. I usually come to this site to hear your good stories and sometimes get a laugh or two. I'm on cycle 48 I think. When changes like this happen my first thought is usually to just give in. I got 4 years out of my 2 to 5 year sentence and I'm tired. However, to all of you out there doing well and staying positive I applaud you.
Melissa
0 -
Bluegirl, I'm no longer on Ibrance (on to Verzenio) but seemed to have phlegm or mucus more than normal for a number of months, i can't say if it started with Ibrance, but I know I had it way back earlier this year.
Here's what happened this weekend. I woke up sneezing a lot for two days in a row, so I took a 24 hour Claritin. My sneezing and runny nose cleared up. So did the mucus! It was a surprising and very noticeable benefit in taking the Claritin! I went on Amazon and ordered a bottle of loratidine 10mg, which is what Claritin is. 365 pills for about $13! So I'm set. Claritin comes in handy for a number of things, plus I will share with ds who gets sinus flair ups, too. Maybe try it. I truly believe it cleared my upper respiratory area. I will take again when needed.
0 -
lissalou, I loathe insurance hassles. They are the bane of my existence and this year has been hellacious. It causes me a lot of anxiety, people have no idea. I dread dealing with it, but I do it. So keep chugging away. Eventually the prescriptions will start to get smoother to order. Take it one step at a time. Since you have private insurance, you can get the copay card from the Ibrance company to pay your deductible. Best wishes to you. Hang in there. .
0 -
lissalou I totally hear you. This disease is exhausting psychologically. It takes a mental toll. The meds definitely take a physical toll.
Dealing insurance companies is the WORST. I see ALL my specialists (MO, oral surgeon, just went to a dermatologist, etc...) through the same medical system/teaching hospital. For some bizarre insurance reason, I can NOT see a PCP within the same system! I have tried again and again and they keep telling me the offices are in “a freeze” to accepting any new patients with my insurance. So I have to see a PCP COMPLETELY out of the system who knows nothing about me, and has nothing to do with this organization. Very weird IMO. Definitely one of the causes of medical mistakes made due to people having to see multiple doctors that are part of different health systems...so the care becomes completely scattered. Anywho - this was super annoying to me. I get it.
0 -
Hi.. if you need co pay Assistance for the IBRANCE the manufacturer offers assistance. Go to Pfizer website and search Ibrance assistance. Good luck.
0 -
ibrance/letrozole combined with radiation?
Hello sisters,
I had lumpectomy in 2010 with no radiation. Now stage 4. Met in back gone with sbrt. I still have axillary and chest nodes lighting up. I’d like to do general rad to my breast and axillary nodes ( not mediastinum chest nodes yet until they hopefully shrink with i/L and then I get sbrt). Has anyone done this? I’d like to keep taking I/L while doing 5 weeks of rads. Anyone do this?
Thanks,
Kitki
0 -
Thanks for sharing that tip, Sallyx72! Hopefully it can be of some assistance to others!
The Mods
0 -
I agree with Jack5ie, Mods it would be great having a quote option and a like, up arrow or star might be nice. To be able to support other posters, that when we don’t know how else we can support the person would know others understand or support what they are saying. I’ve wanted to do that many times myself. It is hard to address multiple people, making that easier would be great!
Hi Jack5ie
I’m sorry, I know I shouldn’t complain some people’s hair never comes back, just feels like I got some back only for it to give me signals it wants to pack up and leave again.Was hoping pain in spine and hips would be starting to go away by now or at least wanting to, nope. Dressing lower half of me while doable, really hurts especially in my hips. Ugh.
0 -
Miss Rabbit...no need to apologize! We all have felt or are feeling the exact same way, even if it is at different times. That's what I like about this site. We all know how the other feels.
I'm in pain all the time too. I have it in my back, hips, butt and down my leg to my foot. My MO gave me the name of a cancer rehabilitation doctor. I'm going to see if they can help at all. I kind of doubt it, but maybe.
0 -
Hi all, I am new to stage IV and took my first Ibrance today. Waiting to see what side effects come but more importantly am really relieved to have started this treatment (along with an injection of Fulvestrant last Friday). Looking forward to learning from all of you.
0 -
Aprilgirl, You've got this! Looks like it took that cancer nine years to mess with you again so it can't be all that powerful!
Do the Ibrance Dance and, like many here you may very well become NED! Side effects for most are minimal with fatigue being the most prevalent. The others seem to come and go.
I'll be praying for you as you begin this new journey.
Love from PatGMc
0 -
Aprilgirl,
I'm not that far ahead of you -- I am currently in cycle 5 of Ibrance/fulvestrant.
As Pat said, most prevalent side effect seems to be fatigue. For me, it tends to REALLY hit around days 13-15 of the cycle. I have found out that I need to pace myself around that point, or I am totally wiped. So keep that in mind -- when you feel the fatigue coming on, take care of yourself. For me, the other side effect at the beginning was nasal congestion that I couldn't clear up. That passed by cycle 3. And also, there's the constipation that is the side effect of so many of these drugs. Keep an eye on that, and there are lots of tips throughout the thread.
Good luck! Thinking of you.
0 -
Aprilgirl, welcome to our Ibrance thread although I am sorry you have to be here. I echo the others with fatigue being the worse se, but it varies. I tend the opposite of constipation so don't be surprised. Keep us informed how you are doing--we care.
0 -
Hi all - wanted to wish my US friends a very happy thanksgiving and let all of you know how thankful I am for having you in my world. I get so much comfort from reading about others with similar experiences as me. I was thrilled to see good news from Candy, IntoLight and Husband11, but wow I was sad to read about Muddling passing. :-(. My heart aches for her family.
For those just joining us (Welcome Aprilgirl) or early in your Ibrance dance, side effects are really inconsistent- at least for me so don't assume something you have one cycle will become the norm. I think I'm on cycle 23 and I've had most of what you read here but some only one or two cycles and then it didn't return. For example, I had a bad rash in cycle 2, but then not again until cycle 19 or 20. I also have excess mucus from Ibrance, which causes a cough and a raspy voice. Painful scalp is another of my recurring side effects but it's not every month, it varies in the level of pain and it's usually gone in a day or two. I have lost hair, but not where others will notice. The strange thing is that it falls out all the time but then grows back all over with a curly texture, so I have varying lengths and texture of my once all one length straight hair, which makes styling it a chore. But it's better than bald. Fatigue is the most persistent SE, but some months (like this month) I feel full of energy. I have not found any patterns in the way this all works but my scans in late Oct were again NEAD, so onward I shall go!
Wandering - I'm so sad to read about the horrible pain from ONJ - I know so many of us worry about that. I hope you are able to get some relief soon and that it doesn't take a year to get there.
Penny, I can't believe what all you've been dealing with but I am sooo happy you are finally on the mend.Love to all,
Lauren
0 -
Hi everyone. My main SE is fatigue and canker sores. I was able to get a script to help with the canker sores and haven't had any for a couple of months.
One thing to keep in mind it takes a few months for ibrance to work. It took 8 months for me to get to NED. So be patient.
Wishing everyone in the US a Happy Thanksgiving!
0 -
0
-
Happy Thanksgiving to all who celebrate it.
Welcome Aprilgirl. Ibrance has different SE’s for many of us at various times. Whatever you’re taking with it letrizole faslodex etc also comes with SEs.
I am with all of you with back pain, hip pain and sometimes sciatica. This month my acupuncture doctor insisted that I start taking spirulina again for energy and immunity. It’s the only thing I did different and I had energy to walk several times this week and last week. I still have the fatigue at times and insomnia. I take ambien at night and still stay awake for hours my mind won’t shut down and also the hot flashes contribute.My scalp is sore to the touch sometimes but not today.
Take care all
Tanya
0 -
Simone80,
I had forgotten that it took you 8 months to get to NED on Ibrance. What was your situation in those 8 months? Were you scanned? And what happened? Stable, less visible, etc.?
Thanks for any information you can provide.
Bev
0 -
Hi BevJen,
I get scanned every 4 months. All my bone mets were resolved along with one of my lymph nodes by the month 4 PET. The remaining lymph nodes were resolved by the next scan. I am still on the 125 dose of ibrance.
I wanted to add, my TMs continued to increase during that time and now are starting to decrease each month.
0 -
Welcome Aprilgirl! I hope all the input has been valuable.....this is certainly the place to come to for support and to ask gain insight from those who have been dancing with Ibrance.
I can’t add anything to what others have shared. I seem to be riding in the same lane as most.
Looking forward to hearing more from you.
Hope everyone had a peaceful day filled with thanks.
Ginny
0 -
thank you Mrs M., My husband said basically the same thing. He just said "dont get excited we will get it figured out". He is a very calm person and im at the other end of the spectrum. You have helped me and so many others with your patients, wisdom and humour. I would just like to say thank you and i hope you had a wonderful thanksgiving.
Melissa
0 -
hi thriving mama,
I had something similar happen with scans. They did a PET SCAN which didn't show too much besides a small met on one vertebrae. Next they did an MRI and found several cancerous spots on my spine. Enough that I had to have radiation. So which is better for finding Mets? MRI OR PET scans. I'm hoping to be able to ask at my appointment on Monday. I have been on ibrance 125mg for around 48 cycles. I recently switched from femera to aromasin. If you have questions just ask and I'm sure someone will respond. We are all in this together.
Best wishes,
Melissa
0 -
hi and thanks love from Philly
It always helps to have someone understand what your going through and how you feel. I'm trying to keep up on this board more because you all are so kind and helpful.
I appreciate you,
Melissa
0 -
Cycle 18 started. Scan report this week and still NED. Very relieved...
0
