Ibrance (Palbociclib)
Comments
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Hi ! I just wanted to weigh in on jaw pain. I am two weeks into my first Ibrance and my jaw began to hurt last night and I developed a headache. Well, I just realized it's acid reflux. I always have trouble with acid reflux and one of my symptoms is jaw pain. Just a thought for you ladies.
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Thanks Jfv. I will double up on omeprazole.
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Had a bad ocular migraine today. The ones with all the flashing light show. Hadn't had one in 7 months. Not sure what triggered it but I am wiped out now. Have had them for 13 years now and each one always scares me.
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Hello everyone from somewhere on the road in Illinois back to home after attending the third graduation in three weeks in three different cities and I'm still surviving, as PatgMc said, never underestimate the power of a grandmother. I managed the Ibrance on a fairly regular schedule including lots of water and potty stops. We are both tired, but I'm so glad I pushed myself to do this. Makes me think I can actually take that trip to Italy in the fall instead of just dreaming about it.
Z, I'm glad I was a good reminder to take your pill and that you occasionally forget, I don't usually forget but I have skipped a day once in awhile if it just doesn't fit in my schedule. I like your idea that we can get hit by self driving truck at 103. :-)
Talking about implants, I had mysilicone one implanted in 1996, 5 years after the mastectomy because the week after my daughters wedding in 1992, the FDA banned silicone, then 5 years later it was ok.? So, the original PS never said anything about ""good for ten years" and I'm still here with it 21 years later. Although, they sure don't match anymore. :-). I did think I might be having a problem and mentioned it to my onc and he didn't even want to think or talk about surgery of any kind. My impression was, he felt it might just stir up some errant cancer cells. But I may be wrong about that. I hope I'm not scaring anyone here who needs surgery but I'd like to hear what other MO's are thinking.
Good luck to all having scans this week and to many more years of IBrance, the devil we know.
Faith (in the future)
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Diana, Sorry you had an ocular migraine. I get them daily now. Use to be once a month and slowly they have increased. Hate them. I've seen 2 top neurologists specializing in ocular/vascular migraines and both attribute them to estrogen deprivation and are hormonally triggered. Had brain MRI which was clear. Do you get the classic painful following the OM? I get those once a week. I haven taken Imitrex or Relpax or Maxalt but use those occasionally or I get rebound. I hope yours are fleeting and that you won't experience many more.
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Diana, Sorry you had an ocular migraine. I get them daily now. Use to be once a month and slowly they have increased. Hate them. I've seen 2 top neurologists specializing in ocular/vascular migraines and both attribute them to estrogen deprivation and are hormonally triggered. Had brain MRI which was clear. Do you get the classic painful following the OM? I get those once a week. I haven taken Imitrex or Relpax or Maxalt but use those occasionally or I get rebound. I hope yours are fleeting and that you won't experience many more.
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This is pretty exciting! I heard the early chatter about PARP inhibitors at a Facing Our Risk conference years ago soon after my daughter and I learned we were BRCA1 positive. My prayer has been that it would get through trials in time for us and especially before my granddaughter should need it. Woohoo!
This was announced at the ASCO conference this week:
"Olaparib slows the growth of BRCA-related metastatic breast cancer. Results from a phase III clinical trial show that a class of medications called PARP inhibitors may be effective at slowing the growth of metastatic breast cancer when there is a BRCA-related genetic mutation. PARP inhibitors block DNA repair in cancer cells, making it difficult for them to replicate and for the cancer to grow. The PARP inhibitor olaparib (Lynparza) is already approved by the U.S. Food and Drug Administration for use in women with BRCA-related ovarian cancer. The results of this study show that olaparib may deliver better results in treating BRCA-related breast cancer and also cause fewer side effects."
If my scans are less than wonderful, I may be knocking on someone's door for Lynparza!
Adding a link to an earlier article about the trial which explains a bit more:
http://www.medscape.com/viewarticle/875971
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Lindalou- I do get the pain after. Just swipes me out. I must say that since I have been on an antidepressant they are not as often. The last one was back in November just as they were going to start my first chemo. Had to wait 30 minutes till it past. I used to get them a lot. Couldn't handle them daily 😓. I contribute stress as a trigger
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I'm so sorry to hear about the migraines you ladies are having. I keep hearing that people have success with Botox for those. Is there a chance you could try that? I had headaches and nausea for about 8 months last year and worried that I had brain mets. Right before I went for an MRI I ran out of the Magnesium supplements I had been taking. Guess what? The headaches and vomiting stopped within days! Needless to say, I don't take magnesium any more!
About implants: I had a traditional silicone implant after my second mastectomy. After four years, it became encapsulated and I had it replaced with a cohesive gel implant. Since I was in the midst of an ovarian cancer scare and needed a hysterectomy, I had both surgeries done back-to-back. The plastic surgeon used a "sling" made from cadaver tissue to hold the new implant and it was a piece of cake...no discomfort. That was 12 years ago. A few years ago I noticed a tiny bubble/raised spot on the implant which the PS said was caused by friction from an interior stitch. It's still there but nothing has changed. In my 20 years at the support center, I've only known two women whose implants have ruptured. One was silicone and happened in a traffic accident. The other was saline and she just woke up flat one day. Both were replaced in outpatient surgery with no problems.
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Sorry to hear that others suffered from migraines today. Mine is not easing up as fast as I would like. I have never had the ocular ones, they sound scary.
To everyone having scans tomorrow, I wish you nothing but great news.
Hugs and prayers
C
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had written a response on Saturday which somehow I lost which was very annoying!! My day was about to get worse. Long story short, my bag was stolen and my ibrance was in it...all of it. Rang my onc on his emergency number. He couldn't get me any over weekend so will try in the morning. I also have to tell the insurance company. Ibrance is soooooo expensive. Just spent most of the weekend sick to my stomach thinking about it and the 2 days I don't have any and how i have to tell my insurance company. I was only 8 days in and made it only 13 days on cycle 1. I feel like a complete fool!
Anyway on the positives I was inspired by the woman who were doing really well and jojo and Nina and their ned status. Pat loved the book pics, made me laugh. I want to know how the stamp worked for your eyebrows. Very interesting about the parp inhibitors and abemac. Good luck with scans tomorrow ladies.
Hopefully I can get back in track after a disastrous weekend!!!
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I have just started my 19th round of Ibrance. Has anyone here experienced a worsening of their asthma or other respiratory issues?
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Lilly- that's terrible! I have three extra 125's but your so far away. Sorry this happened to you
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Z, thanks for the clarification on abemaciclib. Faith, well done on your graduation trips! You go, girl!
And Pat, I'm betting that your scans will be fine again. However...if you run off with olaparib (and thank goodness for the new news about it), you ARE NOT allowed to leave this group!!
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I have a whole prescription of 100mg if someway it would help. JunieB I have had upper respiratory lately. Can't seem to shake it. My Onc says Ibrance can cause these problems. Will not see her again until the 13th. Someone mentioned in an earlier post about Zicam. Planning on trying it. I am on my 13th round. Counts down so she has me on 75mg which I just started about 14 days ago. Still tired!!0
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airlinegal, If no one else needs it, I'd love to have your 100mg prescription. My email address is patgmcree@comcast.net.
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You're sweet, Joyner. I'm not letting go of this circle of hope and encouragement unless somebody kicks me out! My hope would be to continue on Ibrance and be able to add olaparib to it someday. Won't that be great when they have a whole cocktail for us like they did with AIDS? I believe that day is coming. In the meantime, we continue being pioneers!
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I am taking Ibrance, femara, and xgeva shots. I have been realty tired, have sores in my mouth, and a rash on my arms that itches terribly. Is anyone else experiencing these side effects? What do you do for the radish and mouth sores?
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The wheels are in motion to get me ibrance today. Insurance company were very helpful. No extra stock in hospital so some will be courriered in hopefully by end of day or tomorrow morning. Spoke to my breast care nurse this morning. One of our very prominent oncologists, a leading light in the fight against cancer with an impressive body of work died suddenly at the weekend. Very sad news coupled with the horrendous terror attacks in London. This crazy world we live in.
Grandmanet7. I have no side effects from xgeva so I'd imagine ibrance is the main culprit. I had a rash for 24hrs on my feet after first round. I always use an aqueous cream. There have been many people with mouth sores. If you scroll back a few pages you will see some remedies the other ladies use. As always keep in touch with your oncologist or nurse about your symptoms so they can keep an eye on you. Hope the resolve quickly
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Grandmanet7. I am rinsing with baking soda and salt and warm water. Not using harsh mint toothpaste or alcohol containing mouthwash. Good luck.
Ladies good luck with your scans today. Praying for ned.
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Grandma~ Biotine mouthwash!! Use it as much as you need, very soothing. Over the counter at any pharmacy or grocery store even! Feel better! ~M~
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Called Prime Care to schedule delivery for my Ibrance. Got passed around and put on hold for over 25 minutes 😖. Was then told because they were bought out by Walgreens's that I need a new prescription. This kind of crap frustrates me. Must be getting old lol.
Hope everyone's scans go smoothly with no progression 💕
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Lillymillie, My heart goes out to the people in London and throughout the UK. It is so sad and shocking to see such violence, especially against innocent people. The victims, survivors, and their families are in my prayers. I am sorry to hear about the passing of such an important figure in the treatment and research of breast cancer. I hope your Ibrance arrives soon.
Dianarose, I would have expected that any existing prescriptions with Prime Care would have been automatically transferred to Walgreens during the buyout. Foolish me! There must be a lot of frustrated people if new prescriptions are required.
Lynne
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Liliemae - One pharm executive explained the price of these drugs this way ... it's not the pill its the research you are paying for. Well he said "ideas" or something like that. Anyways the value of these meds is in something abstract that can't be stolen. I completely agree with the pharm exec. I may be one of the few people who does not think these drugs are wildly overpriced. I have worked in the research field and it simply costs money to get these compounds into the clinics. I have a whole different set of beefs about pricing effects access to these drugs ... but the drugs are going to be expensive or the research won't happen.
In any case, make the insurance company replace the pills and don't feel bad. The pills themselves cost very little. The ultimate effect of this mishap is that a little more money goes back into pfizers pocket and they are actually do use it to get more drugs out.
Another option is to get a sample bottle from your onc. Many do have them.
The economics of drugs is not the economics of your home. But I did gasp when I read your post.
I put my pills in individual pill cases, one for each day, and never carry more than 2 at a time. Amazingly I haven't lost one ... but I can't explain why. I buy reading glasses in 12packs and that last me about 6 months.
And of course I totally forgot that I haven't set up my pills for this week ... I do it a week at a time. Thank god for you guys for reminding to keep my routine. The most frustrating side effect for me is my memory and reduced executive function. I've become the kind of person that used to enfuriate me (how could you space that out?!?!?)
>Z<
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Lilly, I am so sorry to hear your frustrating news. My pharm won't mail Ibrance so I have to pick it up in person. I just plan it for the same day as my labs to save me a trip in.
Gramdma, I also use baking soda a couple times a week. My mouth sores are minimal. I don't get a rash, but I do have itchy skin especially around my neck. Drives me crazy!
Praying for all of your scans today!
Chris
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Scan prayers going out to all getting scans this week .... you know who you are .... let us know how it goes.
>Z<
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DianaRose thats who I get my ibrance from. I have to call and set up next shipment. Thanks for the heads up.
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Mel- be prepared to be on hold. I found out today to ask for the oncology department when you call. If you say you need to refill your Ibrance you get passed around to clueless people.
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Thanks ladies, I got my pills this evening. I had to pick them up in person and had to have an official handover from my nurse! They cannot be left to pick up or posted. I was so thrilled and gobbled it down as i went out the door! Let's hope my insurance company don't kick up a fuss when they realise the cost...ah well it's in my belly now!
Hope everyone's scans went well today and fingers crossed and prayers for positive results.
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Last Fall I sent a message to friends that I was ready to travel with my new band, "Widespread Mets & the Fractured Femurs"?
Looks like the band could retire into obscurity. My oncologist gave me fabulous PET/CT scan results today and if I get any better, I could have to start cooking and vacuuming again!
Here's the short version of today's results:
No new bony metastatic lesions.
All but 2 of the old ones, including those on the femurs, are most likely scar tissue. They're sclerotic.
No new abnormal FDG uptake.
The 2 places that have ANY FDG uptake at all are down from 11 in September to a maximum of 2.3!
(My favorite comment from Dr. Smith about that was, "You can get a 2.3 FDG from a stumped toe!" I love that man.)So my Sacrum and Sternum ("Isn't that a law firm?") are the only places with any active cancer
and their days are numbered.
Tiny-baby low-FDG stumped-toe cancer. I ain't skeered!I still have a fat place on my liver.
Most people do.
We call that, "one too many Whoppers".
The discomfort in my leg isn't even from cancer.
Darned arthritis.
The irony of it all is that the most uncomfortable place on me is a sore spot from an allergic reaction to those 3 Second Eyebrows!
Is that even fair?All kidding aside, I thank God for all this good news, for a loving family and friends, including you guys. Your prayers and good wishes were so needed. I couldn't be more blessed. I continue to pray for good scan results for all of you.
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