Ibrance (Palbociclib)
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Jaycee49. Such an entertaining story, that was super helpful after my scan experience! I had a PET scan yesterday, and right after check-in, an alarm sounds in the hospital--Orange Alert!!! Along with, you guessed it, an amber strobe light. And I mean strobe. That thing was the most obnoxious light I have ever seen. And on we go with the scan prep......including dark room and rest.....while the amber strobe is flashing in my eyes. I had a headache from the light and it was anything but peaceful. Then into the scanner and YES Another strobe light right behind my head, blinking even into the scanner. Turned out that there was a chemical spill in the OR down the hall which required hazmat attention and multiple fire trucks.
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42- Thanks for posting the article. I wonder when we progress can we change to another CDK 4/6 inhibitor if they all work a little differently?? I will keep article for future reference for when I progress. I will ask MO then if that would be a possibility.
moving- Oh My Gosh definitely not peaceful for PET !!!!
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Jaycee I do drink the nasty drink for PET. Next month I get an MRI and they will inject the dye. I don’t know if they can inject the dye in my port. Oh well they usually just get the ladybwith the pic line camera thing and I squeeze my eyes shut take a few Valium and let the clanging begin.
My onc nurse told me to come into the office for a big bottle of mouthwash sample stuff. I used it once today and all the pain is gone! A miracle. I hope it heals the mouth sores too.
Movingsoccermom that sounded like a scan from hell.
Anna sorry you have to go through all of this. I asked about stage bc when I was stage 3 I took chemo for a year or so radiation and then arimidex for 5 years. Ibrance is something that stage 4 patients take forever or until it doesn’t work for us. After the treatments above I didn’t take anything for years until I had progression.
Tanya
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Oh my, you folks are entertaining me on a hard day!
I expect one of you any day now to be getting a scan in a van down by the river!
And I anticipate a report on the percentage of people who achieved NED with Fried Tofu Tacos.
Never a dull moment with you Dancers!
Love from PatGMc
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hahahaha Pat and Cure-ious about the fried tofu tacos LMBO!!!!!!!!!!!!!!!!!
Thank you for the crack up!
For the record - it was a vegan restaurant. It just missed the mark food-wise, unfortunately. Otherwise, it was a wonderful night. But I COMPLETELY agree that deep fried tofu should be reconsidered. This deep fried tofu taco was topped with some strange condiments such as
1) a slice of red bell pepper (not so bad)
2) some sort of avocado sauce (kinda like a lightly whipped guac? Also not too bad!)
3) slimy seaweed salad (this was what totally threw me for a loop; I am a textures gal and I couldn't get past the slimy - AND STINKY! - seaweed! I was truly worried I was going to get food poisoning!)
Pat -hope you are doing okay today?
Hugs!
Philly
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Interesting article 42young. I don't really hear too much about verzenio. So it sounds like verzenio will work for some women who progress on ibrance
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Thanks for that article, 42 young!!! It reminded me there have been other reports finding that Abemaciclib, but not the other CDK4,6 inhibitors, can also inhibit other kinases- one of those is CDK2, which is often up-regulated in Ibrance-resistant cells and replaces the CDK4,6 kinase activity to promote cancer cell growth...
IntoLight: This means you should also ask your onc tomorrow if you should consider switching to Abemaciclib from Ibrance, for three reasons: 1) Abemaciclib hits CDK4,6 enzymes about ten times harder than Ibrance does; and 2) has a different chemical makeup and inhibits some other CDKs, including CDK2, and 3) has been seen in some cases, and certainly in the lab, to inhibit cells that have become resistant to Ibrance.
Summary: 1) change to Abemaciclb?; 2) switch or add Faslodex to the mix?; and 3) add an NSAID to down-regulate any PI3K mutant cells that might be trying to grow? It feels good to have a list of actionable items one can bring up if the scans indicate slight progression, to eke out more time on these drugs..Of course it may turn out that your scans are really fine and no change is needed at this point.
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Hi all;
I have been having a lot of bruising lately which I have kind of ignored. I get one big bruise then by the time it fades I have another. Mostly my legs and stomach. Any thoughts? I'm sort of thinking this is just me bumping into things during the day or night. Hmmmm
Cathy
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Cathy, stop with the dancing! ; > )
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Jaycee - thoroughly enjoyed your pet scan story. :-). You should write a book of your scan memoirs!
Seaway - i get more than a usual amount of bruises too. I chalk it up to my blood values being less than optimal. I mentioned it to my MO who looked at my chart and then at a couple of sample bruises and said -“yeah, that’s to be expected.”
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Seaway, Ibrance greatly effects my platelets. My dose at 2 cycles was reduced because of low ANC and platelets. Please let your MO know. I get bruises, too, with slightest bumping.
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Me too with the bruising. I had a TON of them last month during cycle 4 and couldn't explain a one of them. But my platelets were in normal range. This month platelets fell a bit below normal but my oncologist said to stay on Ibrance 125 and not worry about it. It's definitely something to report to your team. I waited until my next visit but if you are concerned it's worth sending them a message about it.
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👍🏽 I get bruising too. My acupuncture Dr told me it’s due to blood counts.
Tanya
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Hi All: An update on my onc appt. My onc is convinced things are pretty stable and switching drugs would either not work as well as Ibrance still is or create worse side effects since I am handling the Ibrance so well. Any new areas that lit up on the scans are still too small to measure or biopsy so she would like to wait so she can make the right switch when needed. My growth is so slow, or the Ibrance takes care of it by the next scan so she is not too concerned. Of course, she said she would do whatever I want, but I agreed with her to wait 3 more months. She is aware of the advantages of the next drugs (mainly Abemaciclib or Afinitor or others) with hitting different inhibitors but again would like to make an educated change. My appt is 20 minutes long but I never feel rushed or like she would not give me more. We were early and she took me early so we had plenty of time. She is great with arranging things around my trip in October to visit my new grandson, and listens to my many aches and needs. Thanks for your suggestions, prayers, and help. You have become my friend circle when I am now more isolated and alone since my retirement and physical limits. Thanks you for caring. Chris
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IntoLight- Happy you had a good onc visit. So "stable" for now with scan in 3 months to check on things, right? Hope you have a great visit in Oct with grandson and family. Thanks for giving us the update.
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Chris (Intothelight) I am so glad you are stable. Keep up the positive thoughts and we can keep up the positive prayers!
Chris btw...what grade is your cancer??
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That's great, Chris, if that's what you were looking for. That is exactly what I want to happen, although my lung nodule grows by about 1 mm every four months. I have no "too small to see" stuff and they never report anything new. I guess that's good. I may have trouble trusting this recent scan with all the issues. And then when she finally says what do you want to do, whenever that happens, I have NO idea.
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IntoLight;
It sounds like your oncologist is very well informed and watching your care closely. Happy for you that you are stable and doing well with se's. You'll have to post pictures of your new grandson.
I have cut and pasted the information you, Cureious and Simone80 posted as I will never remember it. I have a huge file now under cancer info lol.
Thank you everyone for posting about the bruising. That's what I thought but you are the only ones I can ask other than the hospital staff. As IntoLight said you are also my friend group as I do not know others in my small community with MBC and I'm not out too much.
Have a wonderful weekend everyone.
Cathy
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Hi Intolight,
So glad to hear that you are stable. It's amazing you've been on I\L for over 3 years. I hope to also have a long run on the combo.
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Yeah, Chris!! Stable is lovely, don't mess with success, and now you get to go have fun!!
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Nicole, I was dxd grade IV de novo. I had many mets to bones and liver.
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Chris (intothelight) I had asked about the grade 1,2 or 3 not the stage.:)
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Good news IntoLight.....sounds like you have a good Onc.0
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hugs and love to you Chris aka IntoLight. This does sound like a wise MO. I'm so glad you have them, us, and we have you!!!!!!!! 💜💜💜💜
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I think I am having low blood pressure and I am wondering if it is from the Ibrance?? I have been having dizzy spells like 3 or 4 times today. Does Ibrance cause that?
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Nicole,
Scroll back a few pages where I raised this same thing. Several people said that they had experienced this. When I raised it with my MO, she said that that was not a known side effect of Ibrance. However, I have a BP monitor at home and my BP was doing VERY weird things. I usually run, even with meds, at least 130/82, and my first week with Ibrance (still on my BP meds) I was running as low as 95/65 or thereabouts. My internist told me to cut my BP pills in half and try that. My BP has gotten better and I am not having "weak" spells multiple times a day, but still experiencing this once or twice a day.
Somebody suggested eating either potato chips or peanuts -- presumably the salt can raise the BP?
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Bev..I remember you saying that but I didn't realize by Weak spells you meant dizzy like want to pass out spells...lol my bad. I know that I use to before Ibrance always run a little tiny bit high (never needed meds though) but since I am on ibrance I run low...not low like the number you mentioned. I am going to go to cvs tomorrow morning and get a cuff or test it there on their machine. Im scared. scared it's really low and my meds might need to be reduced to 75 mg.
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If it's worth anything, I did not get a dose reduction and I'm now on cycle 2 (I know you are ahead of me). As I said, it has subsided quite a bit. As everyone says here, though, the SEs can be different each and every cycle, I guess.
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nicolerod - I had been on BP meds for many years, then Ibrance (or chemo prior to Ibrance) seems to have caused low PB. I cut my bp pills in half, then just cut them out totally 2 and a half months ago with monthly bp checks - so far so good, so we are thinking no more meds for me. This has also happened with my crestor for high cholestrol - I am going off it for for 1 month, then will do bloodwork to check those levels. My GP and I feel it is from the Ibrance but, as stated above, it is not listed as a SE -
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Thanks Ladies. I just got really nervous also because I read on line that Low Blood Pressure can cause risk of a stroke....
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