Ibrance (Palbociclib)
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Pat, thanks so much for your kind words I wish I’ve seen them sooner. With teary eyes I am writing this. My angel mother passed few months before I diagnosed. I feel I lost her absolutely-non-condition love and her prayers which protecting me from disease in my life. Yes I am on ibrance+letrozole and just recently my oncologist switch to xgeva. And you are absolutely right, the speed of response to ibrance is different which makes me to be hopeful for ibrance to work.
I wish you and everyone in this thread a relax long weekend.
Jul
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Started my new Ibrance today, the new brown tablet that comes in all that packaging.
Tablet is smaller than than the previous big red capsule, so that's good. But holy cow - Warning - don't let that thing touch your tongue for even a nanosecond. It tastes like bug spray. Like Raid.
Seriously, wash it back fast so that it misses your tongue and swallow it. I hate to even think what might be in there ...
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Cross post....
So I just signed off from my virtual MO visit. I wanted to post here how it went. Lasted about 10 minutes. MO said my scan "looks good" and no change in treatment. I told her I had not seen results yet and could she click for it to flow to patient portal. She said to give her till end of day to finish her in-box stuff. So I don't know specifics (size of liver met this time, etc). I will be looking for results so I can read them for myself- I read every word of the results and pick it to death, you all know what I mean. We discussed my upcoming dental appt and if I could have a cleaning. Yes to cleaning, but anything else would need to be off Xgeva for a period of time. No antibiotics before cleaning--doing on week off Ibrance. She did not say when I will "see" her next. So I need to verify next appt. I go to office this afternoon for blood draw, Lupron, and Port Flush.
Thanks for your prayers/thoughts. Started cycle 30 of Ibrance this week !!!!!!!!!!!
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candy-678 , congratulations on your results . No change in treatment , I would be very happy with that, definitely worth a little Ibrance dance.
It was monthly blood test day for me. There were changes in the procedure at the hospital. A special area for oncology patients to park. I had to phone to say I had arrived. They came out and collected me , took my temp ( with their ray gun) . Then escorted me to the correct room. All the staff wearing scrubs, face masks and using disposable gloves and aprons. I felt cared for, but missed the kind faces behind the masks!!
Keep well everyone, try and get some sun if you can, to boost vit D and help your immune response. Try and convince people to wear a mask when they cannot social distance. We need 80% of people to comply to protect each other at this scary time.
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Candy, great news with no change. Glad to hear it!
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PNW...yay, someone else that tastes a funky taste with these new tablets (mine is light green 100mg)! I was beginning to think I was imagining it. Do you also smell a nasty odor too?
Candy...again, great news!
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Regarding the nasty taste - I was taking a very nasty antibiotic last fall when I had pneumonia. I ended up coating it in butter to help it slip down "untasted". I will start my first dose of Ibrance after I see my MO on June 10. I have no idea if this is going to nasty, but I may resort to that if I need to. My PCP looked at me a little weirdly when I told her what I did to bypass the nastiness of the antibiotic. Oh well. We do what we have to do, right?
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Great news Candy! My doctor doesn’t check tumor markers for the reason that it will freak me out if there is even a slight elevation. With that being said...the scan next week is freaking me out as well. If all goes well, I will be starting cycle 31 in June.
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Candy, great news on your scan. So glad it turned out well. Thereishope4us, I'm right there with you. My PET is schedu!ed for Tuesday and is freaking me out as well. I will be starting cycle 18 if all goes well. I'm going to dig out my anxiety meds next week for sure.
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Candy,so glad to hear your report! I like to read the actual document too.
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My mom used to give me crushed penicillin covered in spoonful of chocolate syrup. No problems!
Tina
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Congrats Candy!
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Good news Candy! Virtual visit sounds ok the way you described it.
I’m in treatment room today a few patients coughing under masks. My blood works done, zometa and then faslodex shots. Someone rang the bell 🔔 today and a few nurses hugged her. I stood and clapped and did woohoos louder than anyone. I’ll be staying away from DH for at least a week. The germ potential is real.
Be vigilant
Tanya
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I have tried to look through this thread but I just can't seem to find what drug it was that they were testing as an additional drug to be added for treatment along with Ibrance/Faslodex that was showing that it was killing the cancer. I think it was posted in the last month or so. Does anyone remember what drug that was?
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I met my health insurance deductible this year so I am having cataract surgery this Friday and in two weeks for the other eye. But first I must "pass" the blood test tomorrow. Please send wishes for a high white blood cell count. Mine had dipped to 2.1 so I was pulled off of Ibrance for 9 days plus the seven days of normal wait time.
Next month will be my first 3 month bone scan. Scared. I have a very religious teacher friend, and I saw her singing with her kids a song called Way Maker. There are different versions, but this version has these lyrics which have been helping me:
Even when I don't see it, You're working
Even when I don't feel it, You're working
You never stop, You never stop working
The original woman who wrote this song is from South Africa. In her live version of the song, she sings:You are here, moving in our midst...
You are here, rearranging destinies...
You are here, turning lives around...You are here, you are working miracles...
I sing the two versions on YouTube before I go to bed. I am looking for a miracle. Small bone mets in 6 places.
Sending my love and hope for miracles to all of us!
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Candy,
Fantastic news. Yay! Like you, though, I like to read the report and digest it. Hoping you get to do that soon.
Phew!
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candy - Great news! Thanks for sharing.
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Aw Candy so very happy to hear your news. :-)
Big hug,
Penn
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Cowgal, I think it might be Avelumab If you find it’s something different please let me know
Hugs, Penny
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Candy, doin' a little dance for you! Congratulations on #30!
Love from PatGMc
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Great news Candy0
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Thanks Penny! I think that is the right drug. I really need to keep a notebook and write some of these promising treatments down so I can ask my MO about them.
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OH MY GOSH !!!! Switching from capsules to tablets is a nightmare with my pharmacy !!!!
First the pharmacy needed a new script from the MO for the tablets. Then they needed a new prior auth with the insurance since new script. So I am late on getting this months refill. I had some capsules left-- I order next bottle when I still have some in old bottle. Good that I am OCD and organized. I don't wait to order meds until I am completely out.
Last bottle shipped on April 18. Today is May 27 and still don't have new bottle. I have called pharmacy multiple times and spoke to MO nurse. MO office is busy (I have posted that before) and now they have to jump thru more hoops with the pharmacy making them spend more time they don't have.
Good Grief !!!!!!!!!!!!!!!!!! I don't care if capsules or tablets I just want my Ibrance.
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Here is a “your morning laugh at my expense" story. I feel like the only people who need to hear it are complete strangers who I'll never meet lol
So yesterday was bloodwork day and also a urinalysis. I went to the lab with a full bladder, gave blood and then armed with specimen cup, after assuring everyone there would be no problem filling the cup I went to the washroom.
I carefully prepared everything, washed my hands, removed the lid and placed the cup within easy reach. Sat down on the porcelain throne and proceeded to empty my bladder into the toilet, somehow forgetting the whole reason I was there. Once done I looked up saw the cup and had a wtf is wrong with you moment. I pretended I had a shy bladder, received a new cup and went home In shame to refill the tankI'm blaming the meds, it's affecting my brain lol.
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Candy, that must be pretty standard. I had to do the same thing switching over to the tablets. I order before mine are all gone as well. The pharmacy that ships them was very nice about making sure that they would be able to get them shipped before I ran out. BTW, congrats on your results from your last MO visit.
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Mls1, oh, no, bummer. I have actually put the cup in what I thought was the appropriate location and completely MISSED. No pee in the cup. Good excuse with the shy bladder. I never thought of that.
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Candy,
Interesting you should say that. I have a few capsules left, and I called the pharmacy at Hopkins the other day asking them to refill. They told me they will, but then they said that I couldn't get the "new" tablets because I wasn't "set up" for them yet and that they would have to get approval. I'm assuming it's the same thing -- both sign off by the doc and also sign off by the insurance.
This makes me wonder -- are the new pills more expensive? Why else would the insurance companies care so much if it's just a different version of the old med? Maybe I just don't understand insurance.
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Start tablets at end of June, a little anxious, hearing that it stinks and tastes bad. Concerned what all changed since food (and fat) no longer required and is very important with the capsules. So far it is working for me. Started capsules in Sept 2019. Tumor shrank since then from 2.3 cm to 7 mm. Ibrance is mailed to me. My insurance has a "preferred pharmacy" I'm required to use for specialty drugs, and there was no requirement to consult DR, get a note as one person mentioned for the change from capsules to tablet.
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BlueGirl- I have to use a "specialty pharmacy" too with my insurance. I get all my other meds thru a local pharmacy, but the Ibrance has to come from a pharmacy States away and by Fedex.
To Group--- So my ANC came back at 0.8 (800) after my week off --- 75mg dose. Doc says to resume next cycle of Ibrance as scheduled, but wants me to have Neopogen/ Neulasta. Yuck. I heard that med can cause you to hurt and feel yucky. I don't want it, but MO is concerned about low numbers in the COVID era. Any of you had to have Neopogen/Neulasta with Ibrance use????
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Not with ibrance, did with a/c. Didn't make me feel icky, but TIREDHad about an hour after the shot, then I needed a nap. May not be a shot now, may be a disposable time release pod on your arm. This is similar to what is used you can see the tiny cannula that is automatically inserted to release the med Feels like a rubber band snap
This is my insulin delivery system
Some say NON drowsy Claritin taken before and after injection helps.
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