Ibrance (Palbociclib)
Comments
-
Good morning ladies
Just mentioning the vaginal dryness thing. I tried a product “just like me” and it works for me. They have it on Amazon. I tried so many other ones but they burned so… I also watched a show about the vagina and gave my husband a few tips for our very different historical fiction love life.
I hope everyone is doing well today. So many decisions while we live through life with this disease.
Spookiesmom measuring your shorts 🩳 unbelievable like you were in high school or something.
I worked through stage 3 diagnosis for years but when I got the stage 4 memo I quit. Job was super stressful, high energy and demanding. I was sad for awhile and it took me some time to get over missing it especially being productive. Found many things replace it and I’m content.
Hope you talk up PatMg
Tanya
0 -
Katyblu , thanks ! I hope so too. Met with my MO today and as suspected she suggested the dose reduction to 75 mg which is what I wanted. I’m trying to avoid re-infection but they said they can’t guarantee it won’t happen, just that they hope the reduction won’t make me as neutropenic as the 100mg and the prophylactic antibiotics I’m on will do it’s job since it failed last cycle. I’m feeling a lot of pressure to have it work because if I’m becoming neutropenic on ibrance , they aren’t going to offer chemo. She already said today “we can treat at the dose reduction or not treat” and so I feel like this is my current only option. It’s frustrating because there are so many options available to me yet they’re too worried to use them because of this infection issue. So fingers crossed for a successful second cycle so I’m not back in the hospital.
I can definitely sympathize with the weight thing except I’m trying to gain because I had lost so much when I was in the hospital for 5 weeks. it’s hard to see my small frame and ascites filled belly. I used to be quite active too and now I’m set back. I definitely feel ya when you say you don’t want to spend your life eating chicken and broccoli. That’s exactly how I’m feeling. I ate super healthy for the last three years, and while I can’t say it didn’t help at all, I feel like it didn’t help enough to continue to deprive myself of the things I missed. So I try to do a healthy balance. The body changes are hard for me too. I don’t feel quite like myself and I want my body back to the way that it was.
0 -
Hello everyone and hope all is well. My question is directed for folks that obtain the flu shot. Last year I did not obtain the same, was working from home and didn't go out often except for appointments during flu season. I messaged my MO and she was ok with me having a flu shot. Since Covid I wear my mask everywhere when going out from home, except the occasional going to a restaurant. I'm debating to have a flu shot or not. Typically I come down with a cold afterwards from the flu shot (coincidence? so they say). Yes, this is when I was healthy (pre cancer). With WBC already compromised, just wondering how other folks have done after the flu shot?
0 -
Tinkerbell, I got my flu shot and my COVID booster on the same day (different arms). I had no issues at all other than a slightly sore arm. My MO strongly urged that I get both and wasn't particular as to the timing with my Ibrance cycle.
Carol
0 -
Sunshine99: Thanks for the reassurance. With covid vaccines and now this flu shot, I'm worn out with all these measures couple with the medications for cancer.. Just tired of medical appointments even for a less then 10 sec jab. I know you all get it!!!
0 -
I got mine about 2 weeks after booster. Was in PC office for labs. No problem, just slightly sore arm
0 -
I'll chime in again to say that I got mine at my local grocery store. Walked there and walked home. Didn't even have to drive anywhere! Yay!
0 -
Thanks ladies re the flu shot. Just to be on the safe side I'm going to schedule during my off week from Ibrance. I have a CVS near me that offers flu shots. I want to avoid the opt medical clinics as much as possible.
0 -
PatGMc- Please post!! What is the big art project of the moment?...
We are Missing: Love from PatGMc
0 -
Hello, my sweet friends,
I'm sorry to have been so scarce lately but I do think of you and pray for you every day.
I've been working at getting a new plan in place since the last PET/CT showed four spots in my liver. My granddaughter named them Larry, Curly, Mo & Shemp (that other Stooge you rarely heard of) (Nyuk-nyuk-nyuk!) and I'm moving toward the Y90 procedure with a CAT scan Monday followed by "mapping" at the hospital, then two sessions of inserting the radioactive stuff (so technical, I know). Transarterial Chemoembolization......quite a mouthful, isn't it?
Part 2 of the plan is beside me on the table.....a box of Talzenna capsules, Pfizer's new drug for people with BRCA mutations. It's good to know they still think I'm worth an $18,000 a month treatment! (The Y90 is also $18,000 so that seems to be the magic number.)
For those of you I haven't met, I had the better part of five years dancing with Ibrance. I'm 27+ years out from Stage II BC and 9+ years out from the first metastasis. Every time I had a new BC adventure there seemed to be a new and better treatment available and I thank God for that. I pray it's also true for you!
My whole circle of doctors has declared Y90 a perfect choice to slap down these Stooges so I'm 100% in! We'll give the Talzenna a solid try since what we thought were Lynparza side effects last year were most likely caused by Covid-19.
My liver biopsy and blood were sent off for genomic testing and my cells have done the big shift away from Estrogen. In fact I'm now HER(2)+1. My newest oncologist (the most recent one retired this week) is a BC researcher and was involved with the Enhertu trials. He thinks I might be a candidate for that next year. (He mentioned perhaps having another liver biopsy at that time. I obviously wasn't listening carefully but that could mean I'd need to bump up to a +2 to qualify. Maybe Cure-ious can answer that?)
I did go ahead and have radiation on my sacrum last month. The discomfort decreased but diahrrea (sp?) made me nuts for three weeks! It finally stopped but I have even greater sympathy for you friends who suffer constantly with that. Yikes!
The Stooges and I will keep dancing with you until they've been voted off the island (No Christmas for them) and it won't surprise me if I end up back on Ibrance someday!
Love from PatGMcNyuk
(I'm way behind on the art projects, Cure-ious. Thanks for the shout-out!)
0 -
Great update Pat (despite the progression bit...) Please keep us posted on that new PARP (this thread or the Lynparza one, perhaps we need that PARPi thread after all!) and obviously when you get back to making art and want to put up a new piece for us all to enjoy
0 -
Pat ,
Thanks for the update. I’ve never seen your posts before but I’ve only started ibrance. It’s wonderful your 9 years from your first metastatic experience. I can only hope I can get 5 years out of ibrance. My first cycle didn’t go that great but I’m starting cycle 2 today at a lower dose and hoping that’ll be the magic ticket.
Thanks for the update
0 -
PatgMc- Good to finally hear from you. But I hate you are having progression. I got 4 years from Ibrance, and you said you got 5 years. I have 4 lesions in my liver. My MO wants me to do Y90, but with my sister's illness and death I opted not to do it at the time. (But may be rethinking that direction) Also, I am on a PARP, mine is Lynparza. So we are following the same path. LOL.
Keep posting here, or the Lynparza Thread, though that is not a very active Thread right now. I will be looking for your updates.
0 -
Pat, it's great to see you post here again. I'm sorry, too, about the progression. But, I'm also glad that your doctors seem hopeful about a new treatment.
Regarding the spelling of diarrhea, (it didn't give me the red underline, so I guess I spelled it correctly) do any of the rest of you ever hop over to Google to check the spelling of something or ask a quick grammar question? I do think it's interesting that our drugs, including Ibrance come up as a misspelled word. Pretty funny, right?
Carol
0 -
Huzzah, Pat!!!
Sorry to hear you've had to move over to cancer-fighter mode, but it sounds like you already have a really great plan! Talazoparib (Talzenna) hits two enzymes, PARP1 and PARP16, and because of that it is about 100x stronger than the earlier PARPi..In the trials, about 62% saw tumors shrink, and 5.5% saw complete response (fully shrunk all of them). And for future, the cancer is now headed towards the Her2 track, which is great news. I think the trials do accept Her2-low at the +1 level, but your MO may be thinking that with time on the new PARPi, the cancer may get pushed to become even more strongly Her2-dependent, and therefore respond even better to Enhertu as well as the other Her2 therapies in development..
So, maybe it's time to start thinking of a new art project for the new year?! Something big and over the top!!!!
0 -
For those of you who have had bouts of diarrhea, I started taking Imodeum. It took about 4 weeks for it to kick in but so far so good. 24 pills is around $15. I found some anti-diarrhea pills at Costco for $.89 for 24. (Must be picked up at the pharmacy counter - not in with general pharmacy stuff.
0 -
Love the Pooh cartoon, Cure-ious. I just can't decide which character fits me the best.
0 -
Pat, great to hear from you, I hope new treatments kick Larry, Curly, Mo & Shemp out from your liver, no Christmas party for those 4 unwanted guests. I hope you back on ibrance sooooon. Best of luck and big hugsss
I have a question for those who migrated from capsule to tablet, do you have new se with tablet? any tips appreciated. My pharmacist mentioned that because lack of inventory in near future, he prefers tablet over capsule-starting now. He fought for me over last year to get me capsule.April thanks for thinking of me, I hope I’ll keep continuing with ibrance for so longer years, I stand on my ground for now, it was second time that my MO opened discussion in changing my treatment when I said NO- with capital letter! Thankfully my next appointment is next year! She will hopefully forget what she said by that time.
Rabbit I hope you feel better.
Tanya thanks for the suggestion.
Candy how are you doing? When is your first scan after starting new medication?
I wish a calm and peaceful weekend for all of us
0 -
Snow-drop---Thanks for thinking of me. We lowered my Lynparza dose from 600mg a day to 500mg due to nausea. I still have some nausea, but it is not constant like it was. Thank God.
I rescan (first scan on Lynparza) Monday-- Nov 22. I will post here on what is seen. I see my MO right after, so I will get results Monday too.
0 -
Spoke to my MO today for the first time after mets diagnosis -- she wants me on letrozole, Ibrance and Xgeva. I have Medicare + Medigap + PartD drug coverage. How does anyone afford this ??
Any suggestions ??
0 -
Lauri I am on the same regiment currently. My insurance is crazy expensive (more than rent!) but is covering everything so far, with a big detectable. My family in bay area are all in kaiser which seems to cover most treatments.
I think that you can contact drug companies directly to get the meds. Letrozol isn't so expensive on insurance. Ibranance has contact info on the website to get the meds you need. The Xgeva is the crazy expensive one, but so far it has been covered. I am guessing they must have contact info too.
I started ibrance M
ay 2021. Each cycle I took extra time off and went down to a lower dose after. I've been on 75mg now since summer. I am now always at .9 anc at my monthly check- always on my 4th day off ibrance. I cross my fingers that the snotty, beautiful preschoolers I work with won't make me sicksnow-drop: I have only ever had tablets and it goes well. The blister packaging is clearly marked so I know which day to take. I definitely am tired towards the end of each cycle, but I hope I can continue with this for a long time. I echo your wishes for a calm and peaceful weeekend!
Just got my masectomy date, yay(?)
This is certainly a Rollercoaster!
0 -
Snow-drop, I didn’t feel anything different on the tablets when I switched. I liked the fact that you didn’t have to have food first.
Lauri, Pfizer has a program. Look on their website and see if you qualify. It’s based on income. I was going to do that once I got on Medicare, but I switched to Xeloda, which has a generic.
0 -
Lauri,
Basically, drugs are covered either by Part D or by Medicare Part B.(In other words, your Medigap or Part A won't come into play at all with the drugs.) Drugs that are given in a hospital setting, for the most part, or that could be given in that setting (e.g., a drug that could be infused or that could be given by pill) are covered by Medicare Part B. I think that will cover your Xgeva. Letrozole has generics, so those will go under your Part D, and will not be expensive. The big ticket item is the Ibrance. You should work with your MO's office about this. Generally they have someone who can help you out with Pfizer to get the drug for a cheaper price, if you qualify from a financial standpoint.
0 -
I have Anthem Blue Cross insurance. My co-pay for Ibrance is $75.00 a cycle, but I've never paid a dime for it. Pfizer and the specialty pharmacy have that covered. There was never a question of income. I don't know how long that will continue. I have the option of getting my Ibrance refills on line, but I prefer to call them, just to make sure my co-pay is covered.
I started the 125 mg tablet in June, 2020, then dropped to the 100 mg dose in October of 2020. Just started cycle 19.
Carol
0 -
I just started Medicare Advantage last month. I was quite shocked at how much Ibrance is going to cost me now, ~ $2400 for the next month then ~$750 after that. I can no longer can get the copay assistance from Pfizer since I am on Medicare. For those of you who get SSD, you will have to sign up for Medicare after 2 years. I called Pfizer and they do have another program which would cover the entire cost of Ibrance. That program eligibility is based on income. There is another program, PAN, which offers grants. My pharmacy is helping me.
0 -
My MO got me approved with PAN. I have 0 copay. I have a Medicare advantage plan, PAN bypasses that
0 -
Re: vaginal dryness...."A Women's Touch" Sexuality Resource Center sells a lot of One Oasis Silk lubricant. On their website (sexualityresources.com) they have a good description of the product. It can be used daily, any time. I'm long past menopause and found the product very helpful. It comes in an 8 oz bottle or 2 oz travel size. The product did not come up for me on Amazon, but it's available at Walmart, Costco, and at onecondoms.com.
0 -
Hair thinning and nail changes.....I know these are minor problems given the other more serious possible side effects, but....I experienced considerable hair thinning while on Verzenio....then it seems to stabilize, I figured out how to style with less hair and got used to my "new" look......same for my nails...splitting, chipping, thinning and I have one nail that's spoon shaped....after awhile my nails seem to stabilize and I just maintained by keeping them very short. But now on Ibrance after the first cycle I seem to be thinning even more and my nails are splitting and cracking back even shorter. What experiece have others had? Does dose matter when it comes to hair loss and nail changes?
0 -
Candy, best wishes for Monday, I will keep you in my thoughts. Great news that with lower dose you feel better, hope it will continue to work.
KBL, thanks for your response, yes taking without food is a plus. I hope xeloda does the trick and you will continue to feel better.
Dancemom, I link your screen name! Good luck with mastectomy, please do update us, we are here support each other.
Waving to all 👋
0 -
Bev, good to see your post. I hope you are feeling much better.
0
