Ibrance (Palbociclib)
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Carolyn, I am somewhat confused have you tried Pfizer? Myra
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I just got a call from Pfizer today and I got approved for the Ibrance. Thank God! My onc said he was worried they might deny it because I am not menopausal yet. I did start my Arimidex and Lupron injections in the last week, so hoping that throws me into menopause soon.
Vivian- that is crazy how much we have in common. I have two weeks left and I will have my BSN....or at least that's the goal.
Thanks for the welcome ladies.
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Congrats on the approval and your BSN, hopeful34. That's wonderful. Good luck!
I'm feeling a bit down. I won't start the second cycle of Ibrance until my counts recover. How can I have low WBC on 75mg!?!?!?!
The back of my tongue is sore and I am really fatigued.
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Hi All : My Ibrance came today and I took it around 3:30. My next appointment with my Oncologist is on the 30th.if all goes well without any hitches, and I last until then, I'll have blood drawn and we'll know how my counts are. I'm starting out on 125mg. I can see me not being able to tolerate that high of a dosage. I have some magic mouth wash left from when I tried Affinitor. It was a bust after 1 week! My mouth,scalp and other places broke out with these terrible ulcers and I told my doctor no thank you sir .
Hopeful : I'm glad you were approved :
I hope that everyone else that's waiting will get approved soon !
And years added to the rest of us that's already taking it !
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okay, I am 12 days in. I have gotten blisters in my mouth and seem to have a cold, maybe? Sore throat at any rate. I haven't been around anyone who has been sick.Do you have any ideas what to do about the sores in my mouth?
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Raine-Wells- you should call your doctor's after hours number to see if they can call you in some magic mouthwash. I haven't started the Ibrance yet, but I am sure someone can chime in about your sore throat. If you have thrush, it could make your throat hurt as well. The magic mouthwash would help with that too. Hope you feel better soon.
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Raine,
I was told by my oncologist to make a mixture of 1 tablespoon of baking soda, 1 tablespoon of salt, mixed into water to wash my mouth. She suggested that I make up a large glass of this stuff and wash regularly. She was not specific about how often, but I imagined that she meant as needed. I plan to start tomorrow as I am on day 3 of cycle of 2.
Hope this helps a bit,
*susan*
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Hope, I was reading back posts and saw your results. I am so sorry. I don't know what to say. Raine
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thank you! I will start with the baking soda wash. What is magic mouthwash. That made me giggle. I go to the onc on Tuesday. I will let him know. I started out with stage 4 so I have been mostly lurking trying to figure out what all the techno speak is. I sort of feel like I'm learning another language!
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Raine: Magic mouthwash is a mixture that your pharmacist will make up for you ! Your Oncologist will give you a prescription for it . Mine wasn't covered by my insurance and it cost me $35 dollars ,but it was well worth it. I'm glad I have some left over from when I tried Affinitor.
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The Magic Mouthwash my onc nurse prescribed is equal parts Benadryl, Maalox, and lidocaine. It gave me temporary pain relief. Do call the weekend number and get the prescription going. Two days is a long time when your mouth hurts. The rinse recipe they gave me is 1/4 teaspoon baking soda, 1/8 teaspoon salt, 8 ounces warm water; use at least 3x per day. The nurse also said to get enough protein and vitamin E for healing. Also take care of your mouth: avoid food that is salty, spicy, acidic, hot temperature, or hard. I found if I cut up my food into small bites I was less likely to bite my swollen lip. Keep your mouth clean by brushing (very carefully) or rinsing after eating. After two cycles with sores, my dose was reduced from 125 to 100. No more sores so far. I am being careful and still using the rinse.
Hello and welcome to hopeful34, Raine-Wells, msCal02, and anyone I've missed.
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Welcome to all the new Ibrance users. I'm so sorry that some of you are getting mouth sores and other unpleasant side effects. I hope that your doctors will work with you and perhaps lower the dosage if it's appropriate.
I have a CT scan scheduled for Thursday. I'm on my third cycle and will be finished with my 21 days on Thursday, so wish me luck. He is just looking at the liver. I have mets all through my skeleton, but they have been pretty stable for awhile but the liver is the new area of concern. I really have no way of knowing if the meds are working, as I have no new pain but then I didn't have any before, either, while the mets were making a home in my liver. We shall see, I guess.
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I am based in India and my Oncologist in India has prescribed Ibrance which is only available in US & Puertico Rico drug self. Any thoughts of how can I get assistance in buying this drug from local chemist i.e walgreens.
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Sandilee, good luck with your scan. Welcome to all of the new Ibrance users. Just finished my third cycle with minimal side effects
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Sandilee, lots of good luck with your scans. Welcome to all the new users. Luckily I have never gotten mouth sores, so I am of no help. I definetly know nothing about India and Pharma.
Have a great nite all...Myra.
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Great news Hopeful!
Wishing you great scan results Sandilee!
And welcome to all the new Ibrance users! I've been pretty lucky. My only symptoms from the Ibrance are fatigue (but I also travel 1 1/2 hrs each way to work) and a runny nose.
Babs
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Good luck Sandilee!
My only SE so far, thank god, is fatigue, and its not horrible. I'm getting used to it.
Just ended my Ibrance second cycle. CBC (WBC) tomorrow. No scan until August after (or during) my fourth cycle.
Until then, my motto is... I'm not sick til I'm sick.
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It is good to know many of you just have fatigue. I wonder if that is the Ibrance or the hormone blockers. I haven't started my Ibrance yet, but I am exhausted all of the time. Could be nerves too, who knows?!
Sandilee- Hope everything goes well with your scan.
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Good Morning all.....
Sandilee....I'll be thinking of you on Thursday.
usha14 I spoke to my friend who used to work with the FDA. He suggested that your physician call the FDA Center for Drug Evaluation and Research and request approval for use under the compassionate care provisions. A general contact number is 1- 855-543-3784. They would connect your doctor to the correct department. Also your physician can call Pfizer, who is the pharmaceutical company that makes Ibrance. The number for Pfizer for professionals is 1-800-505-4426 I wish you luck in obtaining the drug. Best to you.
Linda
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Sandilee good luck with your scans. Hoping that no pain is an indication of regression. Will be praying for you.
Don't know about mouth sores as I've never had them, even while on Afinitor.
I do think however that the fatigue is from the Ibrance and not the Femara due to low blood counts. I was on Femara previously for four years and never had any fatiugue. Of course nerves must also play a big part. Navigating Stage 1V is definitely very exhausting.
Babs I think traveling 90 minutes to work can contribute to fatigue. I used to live in Orange County, NY and traveled that distance to work each day. Living so much closer now definitely helps.
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Hi ladies...so I am on day 19 of my first cycle. Bloodwork cameback normal. The only SE has been fatigue for me. I could tell that the lump in breast (which was never removed being diagnosed Stage IV from the beginning) does not feel as palpable as before. I take a once a month Zoladex shot to put me into chemopause since I am premenopausal... Headaches and night sweats are killer! I won't complain too much..it could be worse. Thanks to all who have welcomed me into the group and welcome to any newbies!!
Monika
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Pearlady
I move on Wednesday from Long Island into Manhattan ( where I work). I think that will make a huge difference. I've wanted to live in the city forever so in December I took s job here to push the issue on my DH. Little did I know that I'd have a recurrence late January and switch my care fromLI to MSKCC because in LI they didn't have many options for me. So excited about the move -the one negative is that we planned a vacation last year so we move on Monday and leave on our trip on Friday! Pretty crazy but these are good things which take my mind off this BC crapfor awhile! Waiting the 3 mos for my next scans will seem like forever!!!
Babs
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Lots of good stuff Babs. We need to move forward and the universe listened.
Monika so glad you are doing well on ibrance. Keep up the good work. Myra
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Monika, that's great that your blood work is still normal! My white count dropped right away and my dose was lowered to 100mg. My white count was 2.1 today but I took the last pill of my cycle last night so I expect it will go up again.
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Monika, So glad to hear that your blood work was good. First hurdle jumped!
Babs, how great to move into the city. Have you ever lived there before or is this your first foray into living there full time?
Today is day 5 of cycle 2. Just like last time, on day 4 I had a reaction to the IBrance, suddenly feeling ill about 6 minutes later. And hour later? I was just fine. The feet are tingling again, but now I know to wear shoes more often and always when I am outside. My comfort zone temp-wise has gotten really small again. Very hot and then when the air cools down in the evening, really cold. I am carrying a sweater everywhere with me, and I am playing sweater-roulette as I bounce from one extreme to the other.
The "blisters" aren't really blisters. They are little holes in my outer skin layer created by opening a textured bottle top or turning a key that has a sharper edge. At this point, they have merged so it looks like a peeling sunburn without the red. Very odd, but since they aren't oozing I am not that concerned. To be honest, I don't really have any complaints about how my body is responding, but I do like to report them to myself and my medical team.
*susan*
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Me too on the temperature thing. I'm alternating hot flashes with chills where I used to only have hot flashes. Covers on and off all night, jacket on and off all day. That's ok, but the "just fatigue" is really getting me down. But there's nothing I can do. I have to take this stuff and I am glad I can get it.
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Hi ladies. I have been creeping on here for a few months and finally am jumping into the conversation with you. I have to tell you that you gals are so helpful for us "newbies." I have found so much comfort and knowledge in your posts. I had the joy of an initial diagnosis in February followed by diagnosis of MBC two weeks later when my scans came back. I have a few spots on spine, hip, one rib, etc. (So I am following the bone mets thread,too.) I have finished my 3rd cycle of Ibrance and I am on my 4th cycle of Femara. I also get a monthly injection of Zoladex and an infusion of Zometa. My experience with the Ibrance/Femara combo has been similar to many of yours - fatigue, fatigue, fatigue, (did I mention fatigue?) achy joints, infrequent insomnia, and white counts that tank. When my white counts tank, I typically have mouth sores (using the baking soda/salt rinse and Magic Mouthwash when needed). It took 14 days for my counts to recover after my first cycle of Ibrance, but the last cycle was only 10 days. I am still on the 125 mg prescription and my MO will not reduce the mg because my counts eventually recover. We will re-scan in another month to see what's happening. I am fortunate right now that I have no pain, other than little flares every now and then. I am a wife, mother of an 11 year old daughter, and I work full time. It is hard at times, mainly because of the fatigue, but I know things could be much worse. This was overwhelming at first, but I am finally to the point where cancer isn't the last thing I think about before I go to bed and the first thing I think of when I wake up in the morning. I am living life differently now, but I guess that is to be expected when you have cancer. I am hopeful for all of us on Ibrance and for what the future holds for us with the promise of new treatments. Prayers for all of us as we take it one day at a time! Thanks again for all of the info shared here!
KKs Mom
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Welcome KKsMom. I'm happy you joined us but sorry for the circumstance.
The fatigue thing is really hard. I've been reading about how to deal with it and exercise seems to be the one thing that is for sure helpful. I do about 30-40 minutes of yoga every day but obviously that is not enough. I've also read that massage and acupuncture are helpful. So I'm on an anti-fatigue mission. I got a massage today and took the dog on an extra long walk. Later this week I'll get out for a hike. This fatigue is just too much!
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A lot of new people here, welcome! I'm taking it as a good sign that insurers are becoming better at approving this, I hope so and I hope it does great things for everyone!
I found out on Friday that my ANC is too low again, aarg! I had 1 full cycle of the 125mgs before having to stop for 3 weeks in the middle of the next cycle and back on at the 100mgs. Now I've gotten almost through 1 cycle of the 100mgs and I need to wait for the bloodwork so I can start on the 75mgs.
On the other hand, my tumor markers are down 20 over the last month after rising steadily on Letrozole/Ibrance till now, so that gives me hope.
Scans next month and I'm anxious to see what they say.
I haven't dealt with much fatigure on this, knock on wood. Hoping those of you dealing with it will find it getting better as your body adapts to the new drugs.
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Welcome KKsMom! I was another lurker before I finally joined the conversation! I have learned so much from the ladies here! I hope we can find a solution to the fatigue that many of us are dealing with. Other then that, I am feeling well. I am also following the bone mets thread. I have widespread mets in my ribs, spine, humerous, femurs, and oddly one bone in my face. I am not yet at the point where Cancer is not on my mind as I start and end my days. Still in shock hat it came back after 7 years
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