Ibrance (Palbociclib)
Comments
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Chris, great idea- since you have no new genetic data, just point out how well you've done on I/F and want to try to eke some more time out of treatment. Can combine it with Verzenio, if she is concerned about potential resistance to Ibrance,but most cases thats not the problem
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Jaycee, Congrats!
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Intolight, Sorry to hear your progression. Enjoy your break and family.
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Curious-Your explanations are always so helpful. I am filing this away. I love Ibrance and hope I can keep on it for a long time. Adding Faslodex would be something I'll lobby for if I need a change.
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Congratulations Jaycee- love the poem as well.
Cureious- I also worry about all the “crap” chemos after Xeloda- I was put on Xeloda during a crisis of severe hemolytic anemia that popped up after Or during (flu?). And it brought my TMs down 90% in 2 months and “cured” my hemolytic anemia- but, I worry where to go from here? I hope it works a good long while- and some other option comes up- in the meantime- it’s a cookbook and my MO told me a few years ago- you will be cycling through them all.
Seems like MOs have their comfort level about the sequence- not sure. My MO is rather conservative which has its good points- but, I am counting on some of the early adapters in her group to open the field a bit.
Good luck intothelight ! See you on the Zeloda Site.
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I love your Nifty Fifty ode, Jaycee! Congratulations and here's to fifty more.....and on and on and on!
Intolight, I'm all for you pushing to do what Cure-ious said. Since all oncologists know there is no clear path written for us, why not give this a shot before you try the Xeloda. I always suggest that you write the choices on a piece of paper, pray over each one and go with what you have peace about in the morning. That has always worked for me.
God bless all of you.
Love from PatGMc
Here's #4 of the Lockdown Fever Dreams series.
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Find all the Z references and Win a Pony......er......Zebra.
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Tylenol no help so far. I am thinking of refusing shot #2 tomorrow. This bone pain is rough. I actually started crying-- just the pain, tired tonight, and do I want to go thru this. I was hesitant to use this and now is the pain worth it? Will the 1 shot I took be enough to raise my levels? How important is shot #2? What about other side effects but the pain---read can cause kidney problems, ruptured spleen. Am I being a wuss? People take Neulasta all the time.
I am going back to bed. Maybe I can rest. I will see how I am in the morning. But I don't know if I want the next shot. Of course, the MO will be upset.
Thank you for being out there and reading this. I feel you all routing for me.
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Candy, I'll pray for better hours ahead. Sometimes when a patient's insurance requires that they first try the cheaper drug and they can't tolerate it or it doesn't work well, they get bumped up to the more expensive one. (Voice of experience speaking.) Make some noise, my friend!
Much love from PatGMc
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But NKB, the difference is you were already on Faslodex. And for sure there may be another reason we don't know about for moving to Xeloda now.
Its always a good idea to keep in mind what might come next, after secondline its all over the place what oncologists recommend. And a lot of clinical trials require you have had one or two chemos in metastatic setting, so there is not a lot of opportunity to even try immunotherapy early, for example.
Plus there are always stories of people going back successfully on endocrine therapy after chemo, we do what's best in the moment and move forward!
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cure- ious- all true. Mine was a rather urgent affair.
It seems like adding Faslodex is a good plan- esp since one can’t predict what’s going to work - it has as good of a chance as anything and many fewer side effects. I have noticed in the past that my MO is open to discussion about all of this- just hope the future will give us options to discuss.
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candy when they test you tomorrow your counts may bee high enough. After my shot my anc count was 4. I almost felt normal a few days later.
Jaycee excellent news cute poem
Tany
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Celebrating with you both! Wonderful news!!
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Candy, it’s 6am and I’m up praying for you ! Praying for comfort, peace and wisdom. Please keep us up on how you are doing .
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Ginny- It is 5am here. I am up searching my computer. Do I take shot #2 or not? Did shot #1 help enough? Could I cause more harm than do good by taking shot #2? Will I upset my MO?
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Jaycee, I too love your poem!! I’m thankful that the lung progression is slow, praying it will come to a halt. 50 ?! That’s real encouraging! Pray you’ll do it again! 😁
Candy, first let me say that you should never worry about what MO ( medical oncologist?) thinks. I can’t answer you as to if you should take the short or not but tell doc and see what she/he thinks. I can tell you that after my first 2 rounds of Fulvestrant, I had difficulty walking to my car but it wore off within a day or so. After the first 2 months and now 10 months later ....I still get a little stiff but I grab a grocery cart to lean on and do a bit of grocery shopping. after I leave the office and,I find that it helps. Also, like many have suggested, I massage the injection sites several times a day for a few days.
Keep in mind that I don’t have mets to the bone! Hopefully someone else who has bone mets will chime in here. I do feel somewhat helpless because I can’t relate to having bone pain and the shots....maybe there’s some type of correlation? I don’t know. What I’ll continue to do is pray that you’ll receive wisdom, comfort , peace of mind and someone to come along side of you to help with decision making. Please keep me up !0 -
Cure-ious, you are phenomenally helpful! I join so many others on this board in saying how grateful I am!
Hugs, Penn
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Pat, I am in awe of your talent!
Hugs, Penny
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Ok, so it is now 6:30am. The Tylenol cut the edge enough I could sleep from around 11p-4a. But this morning, the pain is still there. Tanya- My MO office is not planning on doing CBC this morning. Plan was shot #2 at 8:30am and continue to hold Ibrance until Saturday then resume. No plan for repeat CBC until regular scheduled one in a month. So the plan was 2 shots of Zarxio and holding Ibrance 1 additional week. This was supposed to increase my numbers. Then resume cycle.
I don't want the pains, but I am also concerned about other side effects---spleen issues, other lab value issues, etc. If we don't really need to use Neupogen-type drugs with CDK 4/6 inhibitors because the cells are "asleep" and not killed, I fear the shots could be causing more harm. Benefit versus risk.
I am going to refuse shot #2 this morning. I don't want to upset MO, but I don't want to blindly take this drug. Of course, today and tomorrow are my MO's days off.
I dread telling the nurse I refuse.
Maybe I am overthinking all this. Minimal risk of spleen issues. Pains will go away in a day or 2. Important to get ANC numbers up and resume Ibrance.
I feel like crap--no sleep and hurting.
Thanks for letting me vent on here.
Edited 1 hour later to add- - I am going to ask for a CBC for either today or tomorrow to check levels. If still low, I will then do shot #2. Sounds like a compromise to me. I didn't want shots. Doc wanted 2. We do 1 and check levels. Do #2 if needed. I am trying to hit all bases--- keep doc happy, increase my levels, and restart Ibrance.
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Intolight..Hello long time Ibrance user, welcome to Xeloda. I lasted 3+ years on I/L. Think my FGFR1 amp mutation stopped it from working
You will see familiar names! Ask us anything to help you. I am new to Xeloda, but there are others who have used this drug a long time and will keep us encouraged.
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Cure-ious: I have a Pik3ca mutation. I’m unable to take nsaids. You mentioned i3c supplement? Do you mind me asking brand and dose? I need to start blockingthis pathway. Thanks
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Ok, plan for now is to continue to hold Ibrance until Monday and do CBC. So... I had normal week off Ibrance, then 3 days on, now 10 days off --- so in 20 days had 3 doses Ibrance total, otherwise off med. Plus I had the 1 dose Zarxio. That CBC on Monday should be wwwaaayyy better. Cycle 30 turned out to be a dud. I pray that this bump in the road will be over soon. I guess messing up a cycle, or taking off a cycle, is ok???? Kind of like a vacation from the med. I still took Lupron and Letrozole, so I was not totally off treatment.
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Candy,
that sounds like a plan. Hopefully the CBC on Monday will be better. I haven't taken a complete cycle off, but I did take about a week off when I was traveling, with my MO's blessing. People have said they've taken "medication vacations" for longer. So I think this sounds fine.
Hope you get some sleep today.
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Thanks BevJen. Yeah I am thinking some have posted taking a "med vacation" and still doing ok.
When discussing all this with MO nurse today, he commented that my MO adheres to NCCN Guidelines for treatments used now (Neupogen plan) and also for progression plan when we have to do that. So I guess I need to read up on NCCN Guidelines as this is my MO's "bible", so to speak. I don't think my MO likes to deviate from the Guidelines that have been set forth. Will be kind of interesting going forward. I wonder what NCCN says about Neupogen use with CDK 4/6 inhibitors?????
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Candy - that is a good plan. I am so sorry the neupogen was so painful. Hope you feel better every day and Monday your bloodwork is great.
Jaycee - congratulations and I love your poem! 50!
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Faith, you were writing about curcumin possibly re-sensitizing the cancer to estrogen deprivation therapy. There was some preliminary research suggesting high doses of melatonin, like around 30 mg daily for several weeks, would re-sensitize breast cancer to anti-estrogen therapies. I wouldn't hang my hat on it, but melatonin is relatively harmless.
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Candy...I hope you feel better soon. Totally sucks that you have to go through this. Take a long nap today if you can.
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Candy, your plan sounds fine to me. Taking a med break until Monday should be fine. My MO suggested a med break a couple of times to let my numbers improve. Praying for peace and good results from your decision.
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Pat-your paintings are amazing! i’m sitting at my MOs waiting for my first shot at Faslodex. Just got my Ibrance in the mail today. Got a whole list of questions for the nurse about side effects. So glad I’m reading this thread as I wait. It makes me so much less nervous.
Candy I took Neulasta frequently with my AC Taxol regimen. I experienced bone pain as well. Weirdly, and you probably know this already, they told me to take Claritin because for some reason it helps with the bone pain. Sometimes I nearly dreaded that injection more than AC-not the taxol it was the worst. It seems that I would have a really good first day and then get the injection and which would exacerbate theside effects from the chemo. could be speculation on my part. I had that on board Doohickey that they just stick on you and Injects you the following day. All that being said after 24 to 36 hours it seemed the pain faded. Can’t they give you something more powerful for the pain? I’m a big fan of tramadol. good luck with your labs.
I’ve got my fingers crossed that I have a side effect free weekend.
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Tinkerbell, I think that is reasonable, one of the stories fom this Science paper mentioned combining i3C with PI3K inhibitor in a trial. I take Ultra-i-3-c from Douglass Laboratories (link below)
its stinky stuff but in capsule its OK; I could not stomach it as a free powder
I take 1 capsule daily, which is 200 mg-do not know if I have PI3K mutant cells, but I am hoping to ward them off
Luce said she's taken twice that amount for about a year with no problem; she does have PI3k mutation but is currently on verzenio
https://www.amazon.com/s?k=i-3-c&ref=nb_sb_noss_2
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IntoLight wishing you the best. My Onc said Fasoledex ? when I have progression. Just like Curious said. Jaycee great news. Candy hang in there0
