Ibrance (Palbociclib)
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Just came from the oncologist. Starting Ibrance tonight. Received a 1-month supply from the Pfizer drug rep. Still waiting to hear the decision from PfizerRxPathways. Should be today or tomorrow. Will be taking 2 aspiring a day because of my prior blood clots in the lung from Tamoxifen. SO THRILLED not to have take chemo today. I can't tell you.
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Holly I was on Xeloda for a little over a year. It was not that difficult. The first month I had GI issues, but that resolved. When I developed the hand/foot issues my onc did not lower the dose, but changed it to every other week rather than two weeks on and one week off. That really relieved the hand/foot symdrome. I recall that they also gave me some cream to use. The main annoyance I had was what appeared to be paper cuts near my cuticles. I used neosporan and the covered with a bandaid. That usually relieved any discomfort. Overall not a difficult drug for me. Wishing you much success on Xeloda and hopefully NED.
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Florence, I am so happy for you! I think you will feel better and hopefully it will delay the progression for a long time. I like your doc's idea of taking 2 aspirins, that would certainly be better than these dam shots for the clots - maybe I will suggest that to the onc on friday. Good luck with Ibrance!
Pearlady, thank you for that info on your experience with the Xeloda. Hopefully I will get some of my questions answered at friday's appointment so that I can make a definite decision. I am very nervous about starting chemo again along with dealing with these shots for the clots - I have been refraining from wine for a long time since it dehydrates me, but I had 2 glasses tonight (needed it!), and started playing my music which helped to calm me down.
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Babs, did you go home today? I hope so. Nothing beats your own bed when you are not feeling well.
Florence, good luck on the Ibrance. I had a lot of fatigue the first two cycles (nothing like chemo though) but now on my fourth and I feel relatively normal.
Holly, sorry Ibrance didn't do it for you. I just finished my fourth cycle and my TMs went up again. Even though my last scan showed no further progression, most likely I'll be joining you on Xeloda in October. But first I have to take my son up to UC Santa Cruz for his first year of college, and then off to Cabo to celebrate 20 years with my DH. so I will be happy living in Denial land for the next 30 days. I like it there.
Pearlady, your words of wisdom are always appreciated.
Stefanie
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I am on my third cycle, dose has been reduced once and my tumor marker went from168 to 62! Now my insurance wants me to do 90 day mail order, but I am concerned if my dose changes how they will handle it. In addition, I live in Wisconsin and dont want 30K in drugs sitting in my door in freezing weather or blazing heat for 8 hours. Has anyone else dealth with this?
wishing you all the best!!
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Yay for lowering tumor markers, kmarq! I'm surprised the insurance would give you a three-month supply. Mine won't even do that with cheap drugs. As far as problem weather, would the pharmacy agree to ship it to their pharmacy near you? That's what I have them do.
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Night before I start Cycle 4 and just like last month, I feel like crap. My body knows that it is time to get that drug back into my system. Blood work is back for the most part. My white blood cells are up to 4.7!!! Red cells are having a harder time of this protocol. I will see my oncologist tomorrow, so it will be interesting to see if she is concerned. This cycle was easier overall. This low day was a surprise.
Still waiting for those all-important tumor markers to come back.
*susan*
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kmarq, I had the same concerns re. just getting Ibrance by mail from Cigna's specialty pharmacy, and I was told if your onc reduces the dose, they will just fill the new RX with the same co-pay. They told me it's just part of being an oncology pharmacy -- that oncs change doses all the time after meds are sent. As far as the heat/cold issue, that was also a big concern since I live near Palm Springs where temps are 110+ much of the summer, and I didn't not only want the meds left in my entry, I didn't want them in a hot truck all day. On that point, I was told they ship overnight (which they did), and then I authorized a signature needed, so that I could be here and be sure the package wasn't hot when I got it, which it wasn't. Can't say for sure your pharmacy source will be the same, but hopefully they will be.
I also should mention (and it's probably been mentioned earlier in the thread), my co-pay would have been $60 for a non-generic, but with Pzifer's co-pay savings program that the pharmacy registers you for, it brought it down just $10, which I really appreciated. I was also told you have to re-register for this program each year.
So I am on day #27 of my first cycle, and all of my counts were very low. My granulocytes were at 0.9 (900) -- too low to start my next cycle. We'll retest on Tuesday. Also WBC was 3.1 and HCT was 32.6. Hoping everything bounces back. We'll see. TMs were done, but won't have those results for a day or two.
Babs, hope you are home by now and feeling better! Florence, so happy to hear Pfizer is taking care of you this month! What a relief!
Hi to everyone else who has been so helpful on this thread! By the way, I think I'm the first patient my local onc has had on Ibrance, and initially they recommended continuing w/cycle #2 and monitoring, in spite of my low counts. Thankfully, I was well-informed thanks to you all, and immediately contacted my UCLA onc who confirmed waiting and retesting in a few days. But without you ladies and this thread, I would never have questioned them. Deanna
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Kmarq, great that your tumor markers are dropping! Mine have also dropped from 203 to 64 after 4 cycles. Will have them done on Tuesday, will finish cycle 5 on Monday. Susan, I have had the occasional day where I feel like crap, just had one last week. Feel a little off some mornings when I first get up, but usually passes quickly. I get my Ibrance by mail, they will only send out one month at a time due to the expense of the medicine. Stephanie, enjoy your trip! There is nothing wrong with living in denial land sometimes, I have lived there myself.
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Just a quick update on Ibrance. I had my appointment today for the first visit after going down to 100 mg. Unfortunately, my neutrophils were .6 and too low for the med. I have to go back in one week, if the counts don't come up I may have to go off this med. I am disappointed but I do wonder: I still really want to stay on the Ibrance. Tomorrow is CT/PET and that will tell if Ibrance has been working...more update Friday. Carolyn from Music City
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Hi Florence,
I also had a ridiculously high co-pay for the Ibrance. The Pfizer $10 co-pay is not an option for those on Part D. But, there is a need based program that they run that has nothing to do with Part D. I don't remember the $ cut off for a couple-look back on this thread when I wrote the amount-think its about $78,000 They don't ask for proof of earnings so you don't have to collect reams of documentation. Good luck!!!! My SE's on Ibrance have been very tolerable!
I got out of the hospital yesterday afternoon and went right to my MO who said my blood levels looked fine-since I was on antibiotics she was worried they'd go down a lot and I'd have to hold off the Ibrance for awhile. My MO delayed my scans from mid September til the very end of September-afraid I'd get an uptick on my Pet scan due to the cellulitis. Seems waiting is part of BC-we really do wait a lot-for tests, results and drs appointments.
Babs
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So much happening in Ibranceland! My MO even asks me what I've learned here. When I mentioned my faint feeling, she asked if others have mentioned it.
I'm in the middle cycle 4. My SE effects have been less this time, with just an occasional weak day and faint feeling. I have gained 3 pounds this cycle 😕. My counts have rebounded well. ANC had been as low as 1.0 is now 2.3. WBC went from 2.3 to 4.3. CEA TM has dropped from 170.5 to 112.4 next is scan Sept. 21 to get the real information. Praying this is really working because it seems like a med I can really function on.
So grateful to all who are sharing your stories. It really helps to not feel so alone in this. Prayers for all.
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Hello ladies,
I hope this is the right place to join? I was dx with stage 4 bc on 06/08/15 with liver mets. I had my ovaries out last month, started on Femara 2 weeks ago and Ibrance last night. I am trying to stay as hopeful as possible. I was stage 4 from the start, so I am really trying to learn as much about bc as possible. I have no family history, BRCA negative and 34 years old!! I have been trying to look through all the threads and see where I fit in?
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Mama, Welcome! You belong anywhere you want! Certainly, you will want to be a member of this thread since we are all taking the Ibrance. Scan the thread titles as they become active, and chime in on any of them that strike a chord with you. And of course, you can start a thread to introduce yourself to other members. There is a thread for younger members which you might find particularly helpful.
Kaption, I too sometimes feel a bit faint, but I am not going to mention this to my oncologist unless I actually am forced to. I am attributing this "faintness" to letting myself get too dehydrated, along with the Ibrance.
The tumor marker that actually tells me what I want to know is still MIA. Argh.
*susan*
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Susan,
It's interesting that you mentioned drinking water related to feeling faint. I think I was actually drinking too much water. I was fighting UTIs for several months and was drinking lots of water. My sodium level fell below normal for a few weeks. Back to drinking a normal amount now. Still had a faint spell yesterday. But, brief. MO suggested taking my blood pressure when it happens, but that hasn't shown anything unusual so far. Just part of the SE I think.
Welcome Mama. It's a very helpful, supportive group.
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Kaption, I think it could be the sodium level, although dehydration can also be a cause of fainting. A couple of others here mentioned they fainted, and one had low sodium - Sandilee, I think? A friend's son fainted at the high school due to low sodium also (she cooks low sodium for her husband, but the kid needs more sodium, maybe because he's a runner). You should ask the doc to check on it since you don't want to fall and get hurt. Glad to hear your TM's are improving, hopefully the Ibrance is working!
Welcome, Mama, and good luck with Ibrance!
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Welcome Mama! This is a great place to be for much valuable information as we all navigate this new drug. There are many threads for a variety of topics related to your diagnosis. I tend to hang here and the bone mets thread. Don't forget to check out the thread Life does not end with a stage 4 diagnosis, can be very uplifting on a bad day.
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Thanks for the warm welcome, and I appreciate the thread ideas! I have to admit I need a bit of uplifting lately. I am sure things and emotions will settle once I adjust to the meds and side effects for sure!
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Thank you, Holly. I did increase my sodium. Started carrying "emergency" potato chips. Especially went I walked for exercise. Lol. But, that's probably why I've gained 3 pounds. Need to reduce the sugar now! Thanks for the info.0
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Emergency Potato Chips!!!! I just love this.
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I know. My friends are all jealous!0
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Hi Ibrance ladies,
Thought I'd chime in about the fainting. I had a couple of episodes that were deemed low blood pressure. The heat and dehydration can push a low blood pressure into dangerous territory, especially after eating or drinking alcohol. The sodium recommendation is to help keep the blood pressure up a bit. But drinking plenty of fluids and staying hydrated is really key. Good luck all of you.
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thanks, Sandilee
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CA 27.29 is down 37 points!!!!! That is a cool 30%. Yea Ibrance.... now I need to buy some potato chip snack packs. :-)
*susan*
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Hi Ladies,
Patient Access Network for Medicare D patients, select Metastatic Breast Cancer- Medicare
https://www.panapply.org/0 -
wonderful, Susan!! Celebrate
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F$CK. My WBCs are still low. I'm only on day 3 of Ibrance. The nurse has to call the doctor and they may make me hold for a few days. I told the nurse, I'm finally feeling better being on it even just a few days, don't pull me off, but she's saying we have to do what's best for your health. I'm tempted to stay on it and lie. If I don't get the Ibrance my tumors grow. I can feel them grow. I am so frustrated. I asked for a shot to bring up my WBCs. Ladies, just tell me what to eat or take to bring them up. What is the chinese medicine someone took? I will buy it. Thanks! This is an EMERGENCY to me.
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Cristina, why did they check your counts after just 3 days, and how low are they?
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Susan, I'm so glad you got good news on the tumor markers after that nerve-wracking wait.
Stefajoy, happy to know you are here to see your son off to college and to celebrate your 20th anniversary. Every time one of us gets to do something like that, I am so thankful.
Welcome, Florence, Mama2twinsplus2, and all the other new members. I can hardly keep up with this thread now. It's good that so many are getting approved for Ibrance now.
Finally, about emergency potato chips. I love them as a treat (olive oil ones), but when my mouth feels iffy and I don't want to risk chewing anything sharp, my go-to is a pack of Seasnax. They are sheets of roasted, salted seaweed (also made with olive oil) and they are yummy and they count as a vegetable!
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Susan, great drop in your tumor markers! Mine has also responded to Ibrance. cjanet what dose are you on? I was only able to tolerate 125mg for one cycle, was lowered to 100mg and having no problems. WBCs not normal but good enough to continue. All other numbers are good. Shetland pony, I am also happy to see so many people approved for Ibrance, we are seeing new people all the time. The more the merrier, we can all share tips and information
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