Ibrance (Palbociclib)
Comments
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I received my first delivery of IBrance on July 3.It came in a big ol styroform box with ice packs. When I opened it the box had a bunch of first time things, water bottle, pill container that is the size of a tablet. It says during the warmer months the packages would come in ice. No refrigeration needed. Also do you have to call for your refill or is it automatic?
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Jaylea, I'm so sorry about the inconvenient new side effect. Now and then I'll have lung issues, usually short-lived. Bending over seems to be the common denominator. I'm going to be praying hard that you have a problem free trip with lots of laughter and good food.
Love from PatG
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Goincrzy8 - I have my Ibrance delivered to my MO's office because of the weather. The FedEx/UPS guy just dumped it in front of my apartment door the first time, and at $11,000.00 a bottle I prefer to pick it up at the docs office. The pharmacy person in the MO's office has an notification on her computer to remind her to order my refill each month, unless I notify her that I have stopped the Ibrance for an infection or low counts.
My experience with the G.I. issues have been intermittent diarrhea & constipation. If I have a bout of constipation I will take 3 tabs. of Senna and a dose of my probiotic/pre-biotic. This usually clears the pipes for me.
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Goincrzy8, I get the Ibrance delivered at home and I have to call the specialty mail-order pharmacy each month to refill. The first time, I called on the first day of my "off" week and they said my insurance wouldn't cover it until 28 days from my first order. So, now I call exactly every 28 days and they overnight it to stay on schedule. I've started asking the pharmacy to require a signature at delivery because if the package got delivered to the wrong place or if it were stolen before I got it, I certainly can't afford to pay for a replacement!
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Hi Lynnewood! Sounds like we are both in the Philly area! I did not make it to the Unite For Her gathering at the golf club/resort spot because, if I remember correctly, they had to change the date due to bad wintry weather and I was working on the day they switched to. I was planning on checking it out. FANTASTIC organization! I am so happy for you that you found a wonderful acupuncturist. I love my massage therapist. I am an acupuncturist and got my colleague to get on the list of providers. Now she is seeing a few folks thanks to Unite For Her, which is fabulous for all!
Joyner: Interesting about the puff incidents with the Ibrance. I have this weird thing where I can't physically burp for some strange reason so I don't burp things up, LOL! Don't ask!!! I have no clue why my body works this way. Very bizarre! I am jealous of people who can make the burps happen - must feel so good to get the air out!
Cathy - congratulations on your fantastic news! I hope you are able to have some room to breathe now. When my MO told me that my primary tumor was no longer palpable a few months ago - it was seriously some of the best news ever! My dad (75 years old this Feb) looked at me with tears in his eyes and said: "Now we (my parents) can die before you do! That is how it is supposed to be." A little intense and morbid but truth!!! We all thought I was goner there at initial time of diagnosis - but this gives so much promise to being able to live with this disease, not die from it.
Hugs to all,
Brenda
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I use a specialty pharmacy- Acreedo, but have my Ibrance delivered to the local UPS store. It costs $5 to pick up, but I dont need to worry about the weather, if I am traveling etc. They sign for it, I get an email when it arrives and I stop by and pick it up, Easy sage and secure. No worries.
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A friend of mine posted this on my FB wall and I thought it was funny, so I am sharing it here hoping it will make you laugh too.
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JunieB, love the cartoon! I see that your initial BC was in 1991. Mine was, too! What a shock to have it return in the bones in 2017. Was your onc shocked, too? Mine said that I was his patient furthest out from original diagnosis.
Jaylea....thank you!!
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Ahhh I’ve had the most painful huge mouth sore since Friday :-(
Just need to vent and whimper.
Doing everything - salt and baking soda mouth washes, Tylenol, ambesol, chloroseptic spray (which I don’t think I can stand due to the awful taste), rest, keeping mouth clean.
Had a few but this one is a doozy
right above left tonsil and hurting!!
I know I just have to wait it out. This is bringing my spirit down a couple notches because it is such a vibrant reminder 0 -
Philly-Try yoghurt (h/t to Pat McG). I eat plain Greek yoghurt daily and that ended the mouthsore issue. I eat it for breakfast which is the same time I take my Ibrance. Hope your the pain eases soon!
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My Kaiser won't mail the Ibrance, so I have to go pick it up from any of their pharmacies. Fortunately the hospital is only 15 minutes away. I choose to pick it up from the hospital And get my labs done at the same time. My onc just has me hold the meds until the results are in. She has marked them stat so the results are usually ready by the time I get home.
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thank you Chicago!! I will pick some up today! So you haven’t had any mouth sores now that you eat Greek yogurt everyday? I have had about one each cycle give or take but this one takes the cake. I’m so grumpy from the pain!!!
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Lovefromphilly, have you tried magic mouthwash? I put it on a q tip and apply directly to the area. Your onc can get you a script for it.0
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I am about to start my 5th round of Ibrance and Faslodex. This site is so encouraging and informative .It helped me so much as I started on 125g of Ibrance and had the whole list of SE's ;sore scalp, hair loss, foggy brain, nose bleeds, sore mouth ,nausea, sickness, extreme fatigue and low neutrophils , two weeks break between treatments. I knew already knew from this site that the dose could be dropped.The last 2 rounds of 75g of Ibrance I anly have slight lethargy and a sore mouth in the third week ,completely bearable, though I will be trying the Greek yogurt trick.
dsodasso. I have had faslodex injections for 20 months and my buttocks have only been painful once ;enough to keep me awake at night and hurt when I moved . This happened when a nurse inexperienced in giving these injections did not respond to my frequent request to slow down injecting this very gelatinous mixture. I did complain to my usual cancer nurse next time i saw her and it resulted in the 'hurtful' nurse getting some more training. Apparently it also helps if the syringes are taken out of the cooler 'to warm' a little before they are used. Done properly the area only hurts when touched ,like a small bruise .
Thanks to all who participate in this life affirming site, keep surviving and thriving.
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thank you Lynnwood! I called MO and they’re putting me on antibiotic (?) in case it is strep (?!) going in tomorrow to have them check me out.
I’m leaving for two weeks in PNW on Monday so feeling relieved to have this being taken care of before I go.
Will ask about magic mouthwash and also gonna make sure to have Greek yogurt in my fridge!
Hugs to all ❤️0 -
Seaway, SOOOO happy to ready your news! 😃
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Penny; thank you so much. I'm very happy and relieved!
Everyone seems to have these shots of faslodex. They have never even been mentioned to me. What is the purpose? They don't sound very nice at all. My sympathies to all who get them.
Cathy
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Selborne - Well, the nurse was experienced, so she said. She gave it slowly, like over 15 seconds. I was also relaxed as I could be. It was also warmed for about 10 minutes or more until she gave it. I was sore for 3 nights and hard to sleep. I get my next one a week from Thursday and hope it is better. It has been six days since the injection and I can still tell I had a shot on each side.
Chicagoan - Thanks for the suggestion of the yogurt. I haven't had the side effect yet, but will know what to try. I am actually trying to follow a keto diet and dairy is a no, but we will see if I need it.
Seaway - The faslodex is the aromatase inhibitor given as a monthly injection. It replaces exemestane, arimidex, or any of the other oral AIs.
Day 6 of my first cycle of Ibrance. So far, so good.
Have experienced dry eye. I saw several posts on watery eyes and here is what I know. My eye doctor said that most chemotherapies cause dry eye. As the normal eye fluids are depleted, your body tries to compensate with more fluid, but it doesn't quite makeup for what the eye needs. So watery eyes are actually dry eyes and we should use lubricating drops during the day and preferably one of the ointments at night to help the eyes.
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LovefromPhilly/Brenda
Thank you so much for posting the podcasts on breast cancer!! They are fascinating and I have listened to several of them. They are meant for oncologists and do have a lot of abbreviations and short cuts- but, many of you know much more than your primary care doctor about breast cancer and can follow along.
They did mention topics that were controversial at the time of my initial diagnosis in 2012- I decided to do the more aggressive choice at the time (preferred by my MO as well) and one of the researchers mentioned that outcomes for ILC were better with my choices. Which felt great.
One other interesting observation mentioned was while CDK4/6 drugs do not kill cancer- simply stop it from reproducing- they are hoping the cells will eventually come out of hibernation ( waiting to have what they need to reproduce)and commit suicide. (apoptosis) which would be quite lovely.
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Hello again to my Ibrance friends, after a longish break. I decided to take a break since I've been off Ibrance for almost a year now and didn't feel I had much to add to the conversation and I needed to think about cancer less if that's possible. I'm hear to say there is good news and to give encouragement to the newbies. I just happened to open this thread on a post from Piggy discussing using letrozole alone from May 30th. I didn't read much further because I wanted to give my input. I've been on letrozole alone since July 31st, 2017.
My MO said I could stop Ibrance to give my body a break for a trip we were taking in October. I fully expected to go back on when we returned in October but he said just use the letrozole for now. Well, my cancer has been stable all this time. Blood work and tumor markers are good!He's sure it will probably work for awhile since my cancer seems to be so slow growing, taking 25 years to return. I pray he's right.
The downside is the side effects I'm having from the lack of estrogen in my body. Since chemo put me into menopause back in 1991, I've been drying up everywhere. The worst is my lady parts. I'm not concerned with having sex since my DH had a mild stoke a few years ago, that's been off the table. However, my vaginal area is so dry that I have cracks in my labia now that really burn. My MO's office prescribed the Estring as the only possible estrogen like product that's safe. Well, long story but that didn't help as I actually made things worse trying to insert it. ( posted on the Estring thread and also some on the femara thread if you're interested) My PCP just said to keep it clean and dry, that's not helping much
So, I'm here to ask for any help or advice anyone might have. I'm getting really upset about this whole thing. Any supplements or lubricants anyone has used that might help? Thank you so much for any help you might have.
Love and prayers,
Faith (in the future).
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Faith, I'm sorry about your current problems but so happy you've been stable on just the letrozole. Have you considered taking a break from it as well?
Love from PatG
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Faith I have a huge problem with vaginal dryness from Letrozole. There is a Letrozole thread that is helpful, a UTI thread that is helpful (that is the main result of my vaginal dryness), and a thread called "I want my mojo back" that is very helpful. Even though you and I are not looking to improve our sex lives, the information there is good and the posters have a sense of humor about it all. But I'm not just sending you to other threads for info. I use a bunch of vaginal moisturizers that work well. I actually have a whole big spreadsheet with information about all these products including stuff like price, supplier, ingredients and how the product is applied. This spreadsheet, unfortunately, is not postable (the speller says that is not a word but you know that I mean) on BCO in its wonderfully organized form. The forum turns it into a jumble upon posting. If you want to PM me your email address, I can send it to you. I do best with a coconut oil suppository called Key-E from Amazon. It is also the cheapest of these products. Some of them can be very expensive. Some of them include an acid to balance pH. I used to do well with those, too, but lately, they bother me some. I have taken whole months off Letrozole after 3-4 consecutive UTI's. That really helps but ... well, you know. Then what is stopping the cancer? This past month (new idea, Pat), I took the week off Letrozole when I was in my week off of Ibrance. I have gotten good help from my gyn and my urologist. MO, not so much. They will deny that vaginal dryness is caused by the drug.
Nkb, I have a picture in my mind now of my cancer cells committing suicide. Lovely, is right.
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Seaway, I believe that Falsodex is an "estrogen receptor downregulator" (ERD) -- I actually think that's different from an arometase inhibitor such as letrozole or anastrole? I do know it's an alternative that is often prescribed with Ibrance. I'm not sure what drives this decision (that is AI or ERD), but some MBC women are started with Falsodex, and for others it's saved for a second line treatment. In nay case, I'm very glad it's in our arsenal!
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Friends, the below (from Onclive.com) is nothing really new, but I thought a nice summing up of some of our recent discuss. Apologies -- I tried a few times to post just the link but it wouldn't work!
CDK4/6 Inhibitors Continue to Offer Hope in Breast Cancer
Although, there is a very interesting trial that is looking at giving a CDK4/6 inhibitor to patients on an AI who are starting to progress. These are very well-selected patients who have responded for a long time. I find that fascinating and, even though it is early, these questions need to be answered.
What are your thoughts on combinations with CDK4/6 inhibitors?
We participated in a combination of ribociclib, everolimus (Afinitor), and exemestane. When you look at the pathways for activation of the CDK4/6 inhibitors, one of the pathways is activated through estrogen and ER, but one of the other pathways is HER2/neu through the PI3K and mTOR pathways. It actually makes some sense to decrease the dose of the mTOR inhibitor—at least in our patients, it was really well tolerated. There are other triplet combinations that may overcome endocrine resistance and it is pretty fascinating.What about the potential with abemaciclib plus pembrolizumab (Keytruda)?
Lilly Oncology has some information on that preclinical data, as well as the neoMONARCH trial, which is the neoadjuvant abemaciclib trial where they looked at abemaciclib as a way to prime tumor cells for immune recognition. There is a phase I trial with pembrolizumab and abemaciclib that I believe is actively accruing.
In the HER2/neu space, there is abemaciclib plus trastuzumab (Herceptin), as well.Do you have any advice for physicians deciding between agents?
First, I would ask the question of whether the patient needs combination therapy versus AI therapy. We know that there is a subgroup of patients with a good prognosis who might do well with an aromatase inhibitor alone. Patients who have poor prognostic features, such as liver metastases or a short time from adjuvant endocrine therapy to relapse, might do better with combination therapy. That is the first question they have to ask: "Is it combination or single-agent therapy?"
The second thing to do is look at the toxicities; if a patient is on an antiarrhythmic I would not give ribociclib. I do think there are some clinical judgements to make.0 -
Nothing brand new here but a good summing up of recent research. I’m particularly excited to read more about the “triplet” combo to push back against resistance. So much reason for hope
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jaycee49
I was in fla. a couple of years ago. Had dryness and itch. The GYN said to use OTC 10% cortisone ointment
Not creme, it did the trick I continue to use it....try it. We ladies have so many issues, but there's always a
Med to resolve the ailment..I gave this to another friend and she said it works.rub it all over
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just started acupuncture I am a skeptic but I'm giving it a try. Hope it helps. Ladies keep me posted
On your success. I don't understand how it works, I sometimes think it's a placebo reaction. I love the
Massages though. I always feel stressed, so they help
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kaycee 49
I have had many any UTIs had a cysto this week...neg
I have had kidney stones that may be the issue, I'm on cipro now, I'm very tired of all this, I'm going to try
The cranberry gel caps twice a day on Amazon.
I have a cluster of stones in my kidney, not blocking the ureter, he thinks I should have them blasted, I 've
Had that done twice I could not tolerate the stents, it was awful. I know I need the stents so I won't
Irritate the ureter wall with the stone fragments coming down.. I don't know if the inf. Are due to lack of hydration, stones or what, but I'm very careful about wiping front to back. After BM using wipes.bacteriafrom
Stool not good in bladder. I'm looking for answers, have any??"
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Jessica, wish I had a suggestion for you — hopefully others will. :-
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Penny; Thank you so much for all your information and comments. Maybe because I've had my ovaries etc. removed I just get the letrozole and they're keeping the other big guns for later.
Brixton; I'm so so sorry you have kidney stones. My brother gets them and they're totally awful and very painful. They blast his and put in the stent just like you. I don't know of anything that helps. Thinking of you.
Cathy
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