Ibrance (Palbociclib)
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Pednurse~I am also sorry you have to be here, but the ladies are wonderfully knowledgeable and so kind and helpful. I also as everyone else hates scans. I have also had two pet scans, for a baseline, but most insurances are getting really cranky about them constantly being ordered instead of a CT scan. My onc does order CT scans also, Unless other symptoms present themselves. Which is fine with me. I read an article last night that bone scans are slowing down anyway because the country we purchase the key ingredient to process the bone scans are no longer making it, so the US will have to find another place to get it. When we run out,I don't know what they'll do. Another is a crisis with generic drugs. They are starting to experience a shortage with them also. Which is quite concerning, because the number one problem noted was chemo therapy oral medicines, I am going to follow this one. Many of us take those daily (anastrazole) was one of them. I also have blood work once a month, prior to my new month starting as well, then scan when symptoms present (we will have none of that) or at six months. I am going to ask not to scan at 6 months. (Which isn't again until November) if things keep going the way they are. I really have hardly any pain, and what pain I do have is joint And muscle aches and pains. But other than that each month seems better. With the exception of the monthly crapgeva shot!(XGeva). That makes me sooo tired insleepy land! God bless you and may your treatment kick your cancer to the curb!! ~M~
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pedsnurse, I have a Pet/CT every three months. We waited until six months for the first one but now it's every three months. I don't mind them at all. I just assume it will be good news and go with that. The only problem I ever had with the scan was the first time when the tech didn't want to use my port (I still have it. Use it for monthly blood work and all contrast, etc.) for the radioactive stuff. He said, "We only use a port as a last resort." Everyone (doctors, other techs, nurses) I told about that said, "WHAT ?!?!?" I told him he was on his last resort so he should use it. He did. I've had a different tech every time since then. No, the first one wasn't fired. I asked.
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I don't see the point in constantly scanning us unless we are having symptoms. All that crap they inject into us can't be good. Scans take me out of denial. I love denial and want to visit as long as I can.
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Micmel, I had to laugh at your XGeva comment! I know the drug is doing good work but it gives me my worst few days. Last night I was in bed by 8:00 PM. I woke up at 10:30 and thought it was the next day....only really, really dark. I assumed there was quite a storm and laid there for an hour. I finally got up and asked my husband if it was day or night. So I had breakfast at midnight, then went back to bed until 1:30 PM! Oh, sweet XGeva!
jaycee, all this time I've been told they couldn't use my port for the PET/CT. At my last scan, I asked a new nurse about using it because I'm such a tough stick and she said they could only use a Power Port. When I asked how you could tell, she said by feeling the bumps around the edges. Duh! So she used my Power Port and now I won't have to dread the scans! When I think of all those necessary sticks!
pedsnurse, I had a scan at 3 months (super results!), then waited 5 months for the next (my choice & even better results!). I'm thinking I'll wait 6 months for the next unless I have some new symptoms. I'd like to keep spreading them out as the anxiety messes up the weeks preceding. I wish you well!
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Lynnwood, when I had the problems with Letrozole, I finally came to the conclusion that my problem was with inflammation of some tendons. I know so many people who had Trigger Finger while on letrozole and it only made sense that it was the sheath of the tendon. My worst discomfort came from the tendon in my leg and, of course, the feet. If I get those symptoms with the Arimidex I think I'll get my physical therapist to work on me. It would sure be worth a try.
One friend (Stage I) on letrozole ended up being diagnosed with rheumatoid arthritis. I felt confident she would get well if she stopped the letrozole but she was one who did exactly what the doctor said. She ended up dying from primary lung cancer and it always has made me sad to think how much her good years were diminished by letrozole.
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Dianarose,
Amen!
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Pat~ I am right there with you. I always know that shot is like I am a wild animal being tranquilized. You just ssssllllloooowwww down. I am quite a great sleeper. It's all I can do, but I am good at it! I have already logged in two naps today. I might win an award! My fit bit is going wild!~M~
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I will finish cycle 4 tonight and since I've been on Ibrance I have not napped once. I napped every day while on Taxol and A/C. I refuse to give in to it. I don't sleep well as it is. You all know the routine of covers on then one leg out off and on all night. I'm constantly thirsty all night too.
My last shots were not bad at all. The nurse kept the shots on a heat pad while DH and I went and had lunch. Such a huge difference.
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When it comes to scans I am on the other side of the coin. I'm comfortable with having them done every 3 or 4 months to stay on top of any progression. I'm very asymptomatic and my blood work is always perfect so I can't rely on how I feel or what my labs show. At one point, after my first year of treatment, my first oncologist suggested every 6 months and that made me very nervous and I said no no I want them at least every 4 months. Now that I'm in a clinical trial I'm having them done every 2 months.
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Hi Ladies - checking in from my wonderful Baltic cruise. The 2 days in St. Petersburg were the best - I walked 4 miles at Hermitage along with Catherine's Palace, and 2 miles the next day at the Faberge museum housing many of the famed Romanov eggs. Got very tired last day in Germany, weather was rainy except for St. Petersburg. Flew BA biz class with miles, and breezed through customs in a wheelchair. I miss my 18 cycles on Ibrance.
Please don't wait too long for big trips - do them now.
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Thank you everyone for your input on scans. I guess my insurance is picky about the pet scans so CT it is. I have a few more weeks to go wish I could just put it out of mind, but I don't think that's likely😕. Headed back to work next weekend and that will probably help keep my mind busy. Hope my stamina will hold up and germs will stay away as I am a pediatric nurse. Will really have to use my isolation techniques for sure! Cheers to a great tomorrow everyone
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lalady, thanks for taking us on your trip! Keep having fun!
pedsnurse, I'll be praying for your stamina as you return to work. My oncologist says they don't worry as much about germs so much with Ibrance even when counts are low. I pray that you stay well!
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lalady cruise sounds amazing, love the photos. would love to do the Baltic one, amazing stop offs!
Pednurse i get a full body mri and ct scan from neck to hip. Don't have a PET scanner at my clinic but did get one a year ago to get a better picture of my mets. Hope all goes well back to work. I have managed to avoid a vomiting bug my son had recently which surprised me.
Had my xgeva shot yesterday, never realised side effects but have been awake since the early hours even though I was exhausted going to bed. It's 5am in UK and I've been awake since 3...grrr!
Waiting to hear before lunchtime if I can hop on a plane this weekend. Got bloods yesterday to see how I am mid cycle 3. Need some sun and a time out before the dreaded first 3 month scan on Ibrance on 17th.
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LAlady - amazing garden! Glad you are back. We need you on a treatment that gives you confidence and energy.
>Z<
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LALady welcome home. Hope the jet lag isn't too bad for you. The photographs are amazing. Sounds like you got quite the workout with all of the walking. Once well rested, send updates photographs of Mr Slim. I'm sure he is happy to have you home! My terrible miserable cold that lasted three weeks has turned into a gnarly sinus infection so on heavy duty antibiotics. Feeling better every day but it sure has zapped my strength. Again - welcome home.0
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Z-Keep us posted on your possible tapeworm situation. It kind of makes sense given the low energy you've been experiencing. Hope that the meds work quickly if that is the case. I have heard not to eat sushi while on treatment since our immune systems are fragile-no-sacrifice for me since I don't really like it. Thanks for sharing this-you are right that we often assume every health issue now is related to the cancer or the treatment where it may be something completely different and treatable. Hope it is cleared up soon.
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My wife has finished her first cycle of palbo and letrozole. Hasn't felt this great in years. Blood tests are resulting in her dose being reduced to 100 mg. She just had an MRI, so hopefully it shows that the xeloda she was previously on, did some continuing good.
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Great news Husband!! Smooth sailing from here.
I took de-worming pill (woof) on Tuesday in Target in Aurora CO on my way to the rockies. A single pill is supposed to do it. Apparently the mature worms go into spasm after 30 seconds of contact with this stuff (Biltricide) that they cannot digest and die. Wonderful to think this horrible death is all going on in my gut...
>Z<
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hello ladies
I know I've read it somewhere here but on average how long do ladies last progression free on ibrance and letrozole and also what is the longest anyone currently has lasted without progression?
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average in trials for a first line treatment is ~24 months.
I read somewhere recently that it is performing better in actual patients.
its all about the population you look at. i see you are recently diagnosed with bone mets, grade 2. you are likely to do well.
longest ... there are people on it from the original trials, which is 6 years +. Not many, but they exist.
sorry you are dealing with this. the first 3 months are mentally very tough. how are you doing?
>Z<
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Hopefulgirl, 54 cycles is the longest I've seen online but I've heard there are people who have been on Ibrance since the trial. I have great hope for lots of us living into old age on this drug as I recently read about a new drug to keep the body from finding a way around it. That research is being done at MD Anderson and requires only one-fifth the current dose of Ibrance. Isn't that exciting? You can go back through my posts and find the link.
This is the link to the PubMed paper on the Phase 2 trial:
https://www.ncbi.nlm.nih.gov/pubmed/27959613
Everybody, wouldn't it be great if we all wrote to thank the doctors who did the MBC trial on Ibrance? One of the doctors' mother's death from MBC when he was a freshman in college caused him to go into medical research. Here's his address: (The other doctors' names are listed on the article.)
Richard S. Finn, MD
Hematology/Oncology
- UCLA Medical Group
- 2020 Santa Monica Blvd Ste 600
Santa Monica, CA 90404
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Z - Glad to hear that the deworming is simple. I know its a bit crass, but... I hope the next 24 hours are poop-a-rific for you!
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Hopeful - happy to weigh in and support Z - amazing with her research for BCO ladies, but worms - oh my! My UCLA onc (Dr. Glaspy) did the original palbo trials. Currently he has several patients at 2 years plus, and none over 3 years. I asked about the "originals", and was told there are just a few still here. Location of the tumor(s) is very important - as "bone only" has the best PFS. Other locations, not as long. FYI I managed 18 rounds of Ibrance + faslodex with lung and bone. Good news is I am still working and no longer have lung involvement. Bad news is I have bone progression with some uptake in liver. I'm struggling with 2 months on the BOLERO 4 (Afinitor + letrozale) and it's not working, but I did manage a trip to the Baltic and heading for Paris in 2 weeks. Plan is to move to low dose Xeloda after scans. There are lots of new meds on the horizon for which we can be hopeful.
However Ibrance is not the magic bullet. Cheryl - will send pictures of Mr Tiny soon. May need to change his name after watching him grow! Best wishes to all for a long run. ~(()) Claire
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hopeful girl - I have been on palbo/letrozole since June 2015 - so just over 2 years. My met was to a supraclavicular node on the opposite side. It shrunk to nothing on the combo, but I did have it surgically removed and had radiation to my neck and mammary nodes. Doing well- except fatigue. On 100 mg. Of palbo which did help with the fatigue. Tumor marker is normal and no evidence of anything on scans. Hope to be on it for a long time.
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LALady- welcome back, I am just back from 3 weeks in Paris & London, try the restaurant at Musee d'Orsay, it's wonderful!
Very sad news for us today, our beloved Shitzu-Cocker baby, Minxie, was diagnosed with an anal gland tumor. These are aggressive with poor prognosis and little in the way of treatment. I will post a pic of her soon as I figure out how. Just like when I was first diagnosed, it's a huge punch to the gut that takes your breath away, and doesn't leave much but a sinking desperate feeling every time you remember it. She's only nine and a half!! So now I am researching immunotherapy for dogs. They have isolated canine-specific PD-1/PDL-1 antibodies, but I don't even see any clinical trials. It's just heartbreaking...
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Oh Z I hope you are rid of those wormy suckers soon!! I've stayed away from sushi since my diagnosis and your story will cement my decision! Hope you are feeling better and full of energy by the weekend.
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Cure-ious - first of all welcome back to both of us. My Paris/Normandy trip is a one week epicurean cruise. Tres yum. About your sweet Minxie, that is awful news. I don't have words, but you are an amazing font of knowledge and skilled researcher. Wishing you the best results, and kind thoughts for your fur baby. I lost my dear Mr. Slim after 17 years in March, so glad I found Mr. Tiny, who now is not so tiny. And mais oui to the Musee d'Orsay. Also to Louis Vuitton.
(())
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Great news Husband AND Z!!
Cure-ious, I'm so sad about Minxie...our precious pets are truly a part of the family. Still mourning my 13-yr-old perfect German Shepherd, Max. He was a cross between another child and a best friend. So hard to have them be sick. Thinking about you and best luck with her treatments. Please post a photo.
Pat, great idea. I'll write to Richard Finn right now-
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Hello everyone, I'm back after a short break from my iPad meltdown the other night. Very frustrating but maybe it was a good thing b/c we all need a break from cancerland once in a while. I've been busy with life the last couple of days and it feels good. Shopped the 4th sales, had a clip and dip (aka cut & color) and my stylist agrees my hair is getting a little thicker after all the shedding that happened in the beginning months of Ibrance. Also enjoyed a book club meeting with old friends w/o much book discussion. "The best kind of book club" for me right now. No serious stuff allowed.
Welcome back LaLady, glad to see you back after your wonderful Baltic cruise, I've been thinking about you. As Z says, we need to get you on a treatment that will help a lot and give you confidence and more energy. The pictures are beautiful, looking forward to lots more. Paris sounds wonderful especially the epicurean part. Enjoy!
Cure-iOS, welcome back to you also. I'm so happy to hear you ladies are still traveling. We are also going to take a trip in the fall. Going back to our beloved Italy one more time in the fall. That trip is getting closer all the time and I'm excited and nervous all at the same time. We got the air tickets in March and that seems forever ago. Now it feels like it's next week. Time is going so fast!
When I last left off, we were discussing the pros and cons of changing from letrozole to aramidex to see if it helps the foot pain. I'm at least going to bring up the subject with my MO and see if he'll agree. He does go by the book sometimes but my feet and legs hurt so I think I need to try something else if I'm in this for the long haul. I'm planning on years and years on this treatment. Contrary to stats, I plan to be on this a lot longer than 24 months, on rd. # 19 right now. As Z says, denial, denial, denial! And, prayer lots of prayer, I believe in it with all my heart.
Pat, nice idea about writing to the first doctor who did the trial of Ibrance.
Wouldn't it be great if one fifth a dose of Ibrance actually worked. I imagine we'd feel no side effects at all. And the research to find a new drug to block the way around it, we can only pray we are beginning to see the beginning of the end of this dreadful disease.
Z, hope the tapeworm is GONE! I'd be interested in what supplements you are using now and which ones were/are giving you side effects. Sleep is effected by so many things, it's hard to know what's what. I started taking melatonin and it worked wonders for awhile and then I started waking up after just a few hours. So, I stopped for a couple of weeks and then tried it again and that seems to jump start it again. I think we need a break from it once in awhile, even though it supposed to help fight cancer.
Husband11, that was an interesting comment you made about your wife being on xeloda b/4 starting Ibrance. I thought Ibrance was only used as a first line treatment.
Hope the weekend is good for everyone! Love and prayers.
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Husband 11- I had to do Taxol and A/C to get my cancer under control before I could start Ibrance so maybe that's what they are doing for your wife.
When will the study be completed about only taking 1/5 of the dose of Ibrance
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