Ibrance (Palbociclib)
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Congratulations, Karen!! Dance, Dance, Dance!!
Love from PatGMc
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airlinegal and Karen- Woohoo on the good results. We need to hear good news.
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Karen - Nothing to see here. WooHoo! That's great! So encouraging for those others with lung mets.
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airlinegirl and karen congratulations!! woo hoo!! Great, great news!!
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We know how to do Social Distancing down South!
From my neck of the woods to yours, much love from PatGMc
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Congrats airlinegirl and Karen!
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Congrats Airlinegal and Karen! So happy for your news.
Pat, that lovely purple dress reminds me crochet projects where they crochet a dress like that in doll size, dress a Barbie, and stick a roll of TP under it. One could hoard a lot of TP under that fine dress lo
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Jensgotthis, you are right.....and a shoplifter's dream!
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Airlinegal, Great news!! I bet you’re floating on air!
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Airlinegal and Karen...wonderful news! So happy for you both!
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CONGRATULATIONS Karen and Airlinegal!!!!!!!!!!!! Such great news!!!!!!!!!!!!!!!!!
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Blood work, neutrophils, imagery. Yesterday blood work showed WBC, RBC, Lymph# etc low as usual, but DR (not my regular one) said that neutrophils Gran#, had dropped lower than previous, to 0.9, putting me at higher risk for infection from bacteria and fungal. Stay away from digging ( just as gardening starting up), and the cat box (but the dog won't clean it), wash hads after petting furry friends. Do others see counts go up/down month to month? One person mentioned counts >= 1000 as low risk, 500-1000 medium risk, and <500 as high risk. So how does 0.9 compare to those numbers?
She also said that because of the coronavirus, radiologist were considering who gets/does not get imagery. For example, routine mamos would probably not be done, but diagnostic would be done. She did not know if periodic imagery to evaluate cancer treatment would be excluded. Oncologists were arguing that it was critical to evaluating treatments, whether they were working or not, such as Ibrance. Start cycle 7 tomorrow.
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BlueGirlRedState -- When folks discuss neutrophil levels some discuss parts per liter and some parts per micoliter. My wife's MO has a minimum neutrophil level of greater than 1.0 per liter (or 1000 per microliter) for her to continue the next cycle of Ibrance. After having a couple months of neutrophil at 0.9 (or 900), her MO lowered her dose to 75mg.
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Thanks BLMike - one less question for the DR. But I never run out of questions.
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Blue Girl, I believe .9 is equivalent to 900, so that would put you at medium risk on that breakdown. Some use the target number of 1,000 to restart Ibrance but it’s sometimes expressed as 1.
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I'm waiting for my refill and they are having supply issues with letrozole, not the palbo. The brand I usually get comes out of Spain so I wonder if that is part of the issues and/or reduced flights. The pharmacist is in the back now trying to find me a single tablet to tide me over until tomorrow when they are expecting a shipment.
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Sondra,
Oh, wow. If he can't find any, I think that letrozole has a decent half life or whatever they call it, so you should still be protected for a bit. I would research that when you get home, because there may be other tie ups beyond this one, especially if the meds are coming on a plane.
Good luck.
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Just finished my first cycle of Ibrance, a sample supply generously given to me by my doctor. So far, so good. My next bottle is scheduled to arrive soon from the specialty pharmacy. Guess I'll know it's here when an armored truck pulls up in front of the house.
Tina
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CONGRATULATIONS Karen and Airlinegal
I have just come back from my monthly appointment for Faslodex and Ibrance. I drove into the car park of the hospital ,it looked like the management team were square dancing in the distance, standing 6 feet apart, but no, they were just having their daily meeting.
I had my temperature taken before entering the hospital, where only patients are permitted , drivers, friends and family have to stay in their car in the car park. All the staff; reception, medics to cleaners were wearing gloves, some with face masks. My review with the onc. nurse was done at a distance. We then donned our masks and she checked my blood pressure and oxygen levels, all test equipment cleaned more thoroughly than usual, before and after use. The onc. pharmacist came and stood at a safe distance and chatted about any side effects from the Ibrance. We agreed she could throw the pack to me - to try and keep each other safe. I then had my injections.
I am booked in for another appointment in a months time. The hospital I attend is private but has now been seconded by the NHS, so who knows what will happen by then.
The medical staff were all in agreement the next 2 -3 weeks will be crucial in the fight to keep ourselves safe from covid-19. Here are the suggestions I have gathered if someone in your household becomes infected.
Keep direct contact to a minimum: use separate bedrooms / bathrooms if possible. Isolate the patient in one room. Keep the door closed. Deliver food and drinks to outside the door and walk away. Crockery and cutlery should soak in a bleach solution before being washed with detergent. Dirty/soiled clothes and linen should be put in a plastic bag and tied up and left for 72 hours before being washed at a high temperature as possible. Rubbish from the patient should be collected in a plastic bag then tied securely before going directly to the trash outside. Obviously frequently washing your hands for 20 seconds is good , as for gloves and masks there is conflicting advice here , but I would wear them even if only to stop myself from touching my face.
We have enough anxiety to live with , I have not intended to make things worse, just keep us safe whatever our neutrophil levels. Mine rarely reach the dizzying heights of one, usually hovering about .9. I hope we and all our loved ones survive this extraordinary time. Keep dancing Ibrancers. I need you here!
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Denny10 thanks for such useful info. My number hovers about 1 and I am on 100 mg.
Great news Karen and airlenegal.
Thanks Pat for the southern belle pic. As a child I wore a crinoline slip. Tells how old I am.
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they were itchy but all the rage!
Stay back 6 ft
Tanya
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So is everyone still going for blood work? I started Xeloda this month and was instructed to get bloodwork every two weeks. I go to an express care three minutes from my house. It’s never busy and I’m often in and out in 15 minutes. I plan to go tomorrow early for bloodwork. I hope I am not being reckless.
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Divine I did bloodwork Tuesday. The office was very empty. People are staying home if they just have follow up appts. They had many more precautions in place. A nurse outside office taking temp. No visitors allowed in only patients etc.
Tanya
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I have blood work and MO check-in appt scheduled for next Tues. Haven't heard from office yet on if I am to go. I could skip the office visit this time, as things are ok--no scan report to discuss, etc. But I really would like blood work. If they cancel, I plan on starting next cycle of Ibrance as scheduled, assuming the labs would be like usual.
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I had bloodwork last friday in office that was ok with MO, as was only one there, office was empty for me like Tanya. However next blood draw she might just have me go to the lab, blood draw morning of my afternoon appt and then she teleconference with me the results to keep me out of the office as much as possible if things worsen. She said the most important thing she needs from me right now is blood, so I plan on going to the lab 15 mins from me in network to the center I go to instead of treking up to MO's office if i don't need to. I will say when I went in for blood they had ALOT of precautions in place, was screened twice before I could even get to the oncology floor, so if you need to go in for blood, it looks like they are looking out for the vulnerable like us.
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Alright - they found me 8 tabs of letrozole and will call when they get the next lot in next week. So despite all the desire to keep us out of the hospital I now have to make an extra trip???! Also, for next month I still have to go to the H to do blood, get injected, and pick up meds, yet my MO/registrar/nurse appt is by phone four days before. Some days you just have to marvel at the lack of joined up thinking in this country.
Denny - Are you a private patient? I have been thinking of switching to private from NHS after this because I want a smoother and more personalized, dare I say, actual medical approach, to dealing with this. Right now I waste close to a full working day a month having to do everything over two days and shuttled between departments. I have insurance, but was waiting to complete our move to a new area in April (ha!) to see if I end up in a better NHS situation anyway. Was just wondering if you had pros/cons.
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Sondra, what a mess and I agree. I'm glad they were able to find you some tabs. Is it possible to have your MO switch your script for the AI from a 30 to a 60 or 90 day supply? So when the supply comes back you have a good amount on hand to keep you from needing to refill less frequently? I apologize for my earlier comment on "diet coke of terminal" in regards to "terminal but not that terminal" comment you had made in a post previously, i edited my post that contained that phrase. It was meant to be a jest to the Blasé attitude given to our diagnosis by others including medical professionals sometimes, I didnt mean it harmfully and after rethinking it it might of been bad timing on jesting for my part. Hoping your refill comes for you soon!
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Radagast...I totally understand what you were saying. My family also has that attitude. Since I have been on Ibrance for so long they tend to forget that I still am having side effects and feel crappy all the time even though I cook all the meals, do laundry, etc. Part of it is my fault since I continue to push through. Don't feel bad--this site is great for allowing us to vent and someone always understands.
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Hey RR - oh no, wasn't offended at all! I guess it was a bit of gallows humor that at least for this situation its not as bad as it could be. Gotta take those wins where you can get them because these hits just keep on coming. A highly contagious, possibly fatal new virus sweeps the globe not three months after I was diagnosed with terminal cancer? Like COME ON. Had you told me a year ago I would be facing one or the other of those, let alone at the same time, I would have told you to stop joking!
I know that if my bloods and tolerance for the treatment continue they said I would be moved to three monthly scripts, but there was never a timeline offered. Given how ugly I imagine the situation will be in four weeks, however, I think I will ask about moving to that early. Its all government controlled so you get what you are given, based on established parameters. I don't pay a dime (well, I do, through my taxes) but I dont have much flexibility either. And the I/L combo is almost too easy to where its frustrating to have to tap dance at the end of the month and get flung back into Cancerland.
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I went to the cancer center for my monthly and it was similar to everyone else's experience. The NP said they are talking about doing virtual appointments if it gets worse for next month. I had bloodwork done and my WBC and platelets were too low again. That makes two months in a row that I needed to delay starting ibrance. Looks like I'll be dropping down to 100 which is okay with me. I know a lot of you are doing great on 100.
Sondra, Rabbit had a good suggestion on getting a 3 month supply of letrozole. I do that not only to have extra on hand but also saves me money. My copay is only $5 more for 3 months vrs. 1.
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