Ibrance (Palbociclib)
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Lovefromphilly, it's settled...I'm never again reading here while I eat dinner! Your Q-tip throat surgery details nearly did me in!! Ha!
Love from PatGMcQueasy
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42- what awesome scan news!! Woo hoo!
Someone else had a stable scan - yay! So happy to see those posts.
Pat - if you do go on lynparza, Genentech does have "help" similar to ibrance. I think you asked about it way long ago.
Sorry, I haven't posted and am doing a bad job of responding to everyone. I do read and love hearing/seeing how everyone is doing. I have been busy with work. School just started, but with me being President of our PTA, school has been in session for me for the past three weeks. I had my 3 month CT scan today. Nothing like Jaycee's roving scan. They scanned me twice for abdomen and chest w/o contrast and once with contrast. Then my neck once w/o co trace and once with. It was so fast. Hoping that this means good news. I believe the one they had to take twice was because I didn't hold my breath in time. Ha! I get results on Thursday with the doc.
Nicole- so sorry about your mouth sores. They are horrible.
Philly - omg! I agree with Pat.
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Holly, thank you for that good news about Lynparza! I remember when I first heard about it way back during the early trials for ovarian cancer and long before I had MBC. I just had this feeling it was going to be the drug for me. We shall see! I have scans at the end of the month.
I look forward to hearing about your scans and I pray for great things. How are you feeling?
I have to say I think PTA Presidents should be carried on our shoulders in a parade! What a difficult job! I remember just being a PTA peon and the difficulties involved. Good for you!
Love from an admiring PatGMc
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Thanks Airline, Philly, Tanya, & Holly.
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Cure-ious, thank you for thinking of me. We have evacuated, driving 6 hours to safer location.This is when I feel my cancer meds are kicking my butt; putting up hurricane shutters, removing screens, tying down porch furniture, packing for potential long term absence are no jobs for the already fatigued..
I sat with my last sea turtle nest Sept 1st under dangerous situations..dark sky (new moon), King tide, more high tide from offshore Hurricane Erin added to outerbands of Hurricane Dorian. We were pushed to the base of duneline due to wave action. My fears were mainly about rogue waves and unseen rips in the dark. The hatchlings are left to nature now.
This is my life and brings me happiness. I almost feel normal sitting on this barrier island beach caring for nature. It is paradise and I am grateful to be alive.
Please don't forget our Bahamian friends. Their suffering will be immense.
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Question for the collective wisdom: I am on my second cycle of Ibrance. Have had some tiredness, but the SE that is bothering me the most is congestion. I am having the "sort of" bloody nose on a daily basis (not huge amounts of blood, but definitely seeing some). At certain times during the day, and definitely at night, I am having horrible congestion despite taking loratadine on a daily basis. If I wake up during the night, I realize that I almost cannot breathe out of my nose.
Two questions: I am on the 125 dose. Do people on a lower dose still experience this?
For those of you who experience this SE, do you have any suggestions about how to help alleviate it? It's driving me crazy.
Thanks.
Bev
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SandiBeach you live in OBX? I am really happy for you, that is one of my favorite places on earth. DH and I try to make a trip there ever few years and we go allllll the way down to Ocracoke and stay at least a week. Thank you for taking care of the turtles! I hope Dorian takes a turn. I've just been seeing the films of the Bahamas and my heart is really hurting for them.
Philly I gagged just thinking about sticking a Q-tip in my throat but sometimes you do what you gotta do. I hope it stays quiet in your throat. I'm really sorry that mouth sores are bothering so many right now. It sounds awful. I expect to experience this sooner or later. Right now I just deal with tiredness.
42young I am so happy you are stable! What great news!
Nicole have you gotten settled in your new digs in spite of dealing with the mouth sores? You are really having a time of it with getting into your new place! Come on universe!!!!
Heart to everyone else!
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SORRY for my gross post everyone LOL!!!
I guess that was WTMI (as PatMcG says). I even grossed Pat out this time LOL! Sorry!!
Sandibeach - wow about your nighttime visit with the sea turtles! Thank you for watching over our planets inhabitants. I have been thinking the same things about the rouge waves and strong high tides and rip currents as I know people are visiting the beaches for one reason or another during this storm. I am glad you are safe! I can understand feeling the fatigue as you are batting down the hatches. Sounds like a lot of work, and stressful to boot.
I am munching on pastries and coffee and then hitting the gym today. Had a wonderful massage yesterday and I am feeling the aftereffects from it all (in a good way!)
Hugs to all,
Philly
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BevJen, i had bloody nose for my first 2 cycles of 100mg. It slowly went away when i switched 75mg.
Thanks Moomala
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Sandi- We got stuck on Kauai during Hurrican Iniki, and after it passed through there were bits of glass, housing insulation, and vegetation and debris spread everywhere- the whole place got put through a blender. We abandoned our smashed-up rental car at the airport and took the first plane out to Honolulu, with no tickets at the closed airport but volunteer staff lined us up and put us on the first rescue plane that made it into the airport. The first plane down had some supplies and medical staff, plus a gaggle of reporters who jumped out from the plane and went down the line interviewing us, so they could file some immediate reports. The folks next to us in line were a backup film crew for the Jurrasic Park movie, they said they had been up in the mountains and went out during the storm to get some great footage for the movie.
I cannot envision what it would take to clear out and rebuild the Bahamas, hoping the hurricane makes a swift exit. Be safe.
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BevJen - I did go through a period of congestion and bloody noses (our dry winters is usually part of the culprit along with the Ibrance). I am a nose blower and seeing the bloody tissues was not exciting for me at all. I told my oncologist about it and they seemed unconcerned and felt it was normal. It did eventually go away. I think that our MO's are trying to keep us on whatever medication regimen that we can handle in terms of our QOL. If it gets too much, they will make changes. I started at 125mg of Ibrance and then went down to 100mg after the 1st month due to low neutrophils and WBCs. The bloody noses started way after that for me, once I was long into the 100mg.
Do you live in a dry climate? That could be part of it.
Edited to add: the bloody noses for me were more about weakened capillary cell tissue (due to dryness) within the nostril, not my sinuses. Some people use a gentle moisturizer applied to a q-tip and swipe inside the nostrils to try and help soothe the skin inside. I am not a huge fan of Vaseline but this could be a good time for it!
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Philly, q-tip again? Really? You are now banned from using that (hyphenated) word for two weeks. If you don't abide by this ban, the ban could be longer or there could be a fine.
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HAHAHAHAHAAAAAAAAAAAAAAAAAAAAAAAAAA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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Jaycee!!!!!!!!!!!!!!!!! You REALLY CRACK ME UP!!!
The funnier thing is, as I was writing about the nostrils, I was thinking, "hmm...is anyone gonna notice I am writing about Q-tips again? They are going to think I am a Q-tip freak!!"
HAHAHAHAHAAHAHAAAAAAAA!!!!!!!!!!!
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Thanks, Moomala and Philly,
I have my next onc appointment next week, so I'll discuss it, but I'm guessing this won't be a surprise to them. It is just very irritating to me especially because I have to talk a lot in my job and the congestion and the sometimes drippy nose doesn't work really well for me.
Philly, as gross as the q-tip stories are (!) that may be a solution. When I remember before I go to bed, I put a little bit of Vicks Vaporub under each nostril and that helps somewhat, but I haven't tried the vaseline. (My father always thought that Vicks Vaporub was the solution to all ills, like the guy in My Big Fat Greek Wedding who use windex on everything!) Perhaps the vaseline will help a bit too.
Bev
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Hi everyone, I’m still following along on the side and enjoying the free entertainment!
Love the censoring of laser Q-tips and the new coffee and jalapeño M&Ms!
I thought that you were kidding about the coffee M&M’s until I saw them yesterday! There were only 2 bags left so I guess they’ve become an overnight success !
Praying for you 42 and Holly! I look forward to hearing good news soon.
I’ll be going for the same on 9/12....praying we all have less scaniety!
Yes, praying too for all those in the Bahamas .....can’t even imagine all that they’re going through 😢
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42Young, hooray! Always happy to hear stable news!!!
BevJen, I use mentholatum at night under each nostril. It is a little milder than Vapor rub. I also put it on my lips. Works great. I buy mine on Amazon as I have trouble finding it in the stores.
Praying for all of you impacted by the hurricane and storms. I love the Bahamas and am greatly saddened by the news. This will hurt many people for years to come.
SandiBeach, I am enjoying the quiet of the "after Labor Day" exodus of tourists here in beach town San Diego (Pacific Beach). It is not quite the barrier island, but my slice of daily paradise. Instead of turtles, I live with nesting SeaGulls. Much noisier! but they leave our rooftop once the babies learn to fly away. They are also gone now.
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Question. Does anyone here have MBC to the lungs grade 3 ? And if so what has been your treatment history ?
Getting antsy with my first 3 month scans coming up.
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My bone scan yesterday came back showing progression in another vertebrae after 5 months on Ibrance/Aromasin. I’m hugely disappointed. It’s pretty much a kick on the gut, The onc is keeping me on the Aromasin and switching me to Verzenio. I asked her about getting the two vertebrae radiated and she doesn’t want to do it now since I’m not having pain. It’s been a trying day coping with these latest results.
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BevJen, I feel like I'm blowing my nose all the time from drippiness. I have had a few bloody kleenexes and a few bloody noses. In the middle of my 3 weeks I also feel kind of mucosy when I swallow. I've read others mention this too (not sure if it was here) so I kind of accept it. So far, the bloody noses haven't happened in public but that could be a bigger issue. Glad you'll be seeing your onc soon to discuss it. I'm on cycle 8 and still on 125 mg. I hope you get some relief! Edited to add: I’m just realizing that all of that has been gone with my extra week off due to low ANC! Labs today showed quite a rebound, in the 2,000 range.
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Divine, what a bummer. When does the V start? Is there a thread here for it? I hope you stay here and keep us posted on the new drug. And how YOU are doing. My MO told me she starts everyone on Verzenio now. For some reason, she likes it better. Just take a big breath and try to calm down. Must be so difficult. I haven't called yet to get Pet results because I don't want them. Well, I left a message when MO was on vacation last week but that produced no response. I could call again but can't convince myself to do it.
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Please check out latest research on radiating spine mets. They do not wait for pain anymore and have found that SBRT to spine mets before the pain starts prolongs progression. If your MO wants you to have pain before radiation you need to get a second opinion. Just my thoughts...but I had my T6 radiated with one met, had to fight with Anthem Blue Cross, but UCLA docs said this is now the standard of care.
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Divine, sorry for this news. My MO also said we would probably move to Verzenio with progression but I don't need to switch yet. I am anxious to read how you do on it.
You all are so helpful. Thank you for taking the time to respond.
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Divine, I’m so sorry to hear of your changes. I’m praying that the medication change is for the best and that you’ll look into Kitkit’s information. I want to echo the words of others on saying to please stay my in touch with us here. We still care and want to hear how you are doing
Jaycee, hope your results are more positive. We’ll be looking to hear about your results as well. 🙏
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Hi,
I'm sorry to disturb your conversation but I'm wondering if anyone uses particular shampoo/products to help with hair thinning/loss.
My wife has been on Palbociclib for 8 months and her hair is noticeably thinner and she is really worried about hair thinning/loss.
Any input on this would be great!
Thank you!
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jhj, I had complete hair loss when on chemo, and as the hair grew back, I used the Nioxin products. A quick google of the name will let you read up on what they offer. Whether it had an effect on my hair or not, I felt I was being proactive trying to get my hair back, so that helped.
Kitkit, can you please direct me a little further towards the info on the current standard of treating spinal mets with radiation? I know others have had it done, thats why I asked my onc who said not at this time. But I want it if its going to help.
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Divine- If you claim pain, they will radiate, its your call about that. Of course, the next scan could show a bunch of new spots, its such a crapshoot. Thankfully, Versenio is a 10x stronger inhibitor of CDK4,6.
Jhj- My hair is fine and about 100% straw at this point. I can see through to scalp in many places. Truly wrecked by the I-F combo. So I'm also interested if anyone has found anything miraculous for that!
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Thanks Ginny & IntoLight. My MO confirmed the scan result: stable & stay on 75mg.
Pat, you are right. My MO is not concerned about fat uptake & small SUV uptake on the node.
Devine, sorry about the news. Hope V will work well for you.
Jaycee, praying for your good scan result
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hi jhj0112
I had significant hair loss when I was on 125 and 100 ibrance. It is thinner now I am on 75, but the loss of hair has slowed. I also use baby products that are free from dyes, parabens and sulphates that are gentle on my hair. I hope she finds something that helps, I remember how it knocked my confidence when I lost all my hair during chemotherapy.
Has your doctor checked your wifes vitamin D levels ; low levels have an impact on hair and nails. My oncologist now has all her patients checked regularly as part of their ongoing care.
Divine, sorry to hear the ibrance dance has ended for you but wish you well on versenio, please keep posting.
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Lovefromphilly,
Just for you!
Love from PatGMc (who actually can't get grossed out by anything.....well, except stepping barefoot in warm dog poo))
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