Ibrance (Palbociclib)
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Yaaay Grannax! SO happy you are staying with us. :-
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Lucy......💕🐶
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Come on, everyone....the more the merrier! We'll dance on the terrace overlooking the water! Do si do's and all! Austin can work the music thing for us! Lord, I'm glad to be home!!
I love Lucy's stogie!!
Happy weekend, all....off to the TV and NCAA football-
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Joyner et al., count me in!
Grannax, so happy you can stay with us. Hang in there!
Happy Saturday everyone. We are praying for rain on Monday in San Diego. It has been months...
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Hi
A question does any one take Melantoni together with Ibrance and Faslodex. I have so difficult sleeping. Wakes up every second hour. I'm longing for a good night's sleep.
Thank's 😘
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Josalo, I'm on Ibrance and Letrozole. I take those right after breakfast. I often take a melatonin at bedtime to help me sleep. I use a 1.5 mg tab that dissolves, and can take one more during the night if I wake. You want to make sure you have at least three hours to sleep after the last dose. Some folks on these boards take a larger dose and I've seen a recommendation for time-released melatonin which I'm going to look into. My oncologist recommended melatonin, so check with yours to make sure it will work with the faslodex. I also take Tylenol PM occasionally but not with melatonin. The sleep ingredient is benadryl, so ask your doctor about that too, if you like that idea.
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I take 3 mg of Melatonin before I go to bed. (Also on Faslodex, Xgeva and Ibrance 100 mg). I have been taking Melatonin for quite some time (several years?). I also take one in the middle of the night if I cannot fall back asleep but I like to do that at least 3 hours before I need to get up. I have a really bad habit of obsessing after I go to bed - the subject changes. Wish I knew how to turn that off but so far I cannot. I usually don't obsess about my health but other things that have happened in my life.
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Hello again to all. I’m on my 3rd week of the Ibrance/Letrozole combination and the past few days I have definitely had dragging ass syndrome. I get a few bursts of energy and then I’m done for. I’m on night 2 of my 3 12 hour overnight weekend shifts and it’s just not the same as any other time. Seems like no matter how much sleep I get it’s just not enough. After Wed I will have my week off of the Ibrance and I’m hoping my energy levels will improve a bit. I am thankful to be going back to day rotation this week because I think I will handle that better. On a positive note I had bloodwok done the other day and it sounds like it all looked good as far as my counts and such so that is great!!! I hope you all are enjoying your weekend. It’s been pretty frigid here in MN. I finally broke down and turned on the heat
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Crazeejane, I'm amazed every time I read that someone on this protocol is working full time or even part time. Then I come here and see that you're working 12 hour shifts! I don't know how you do it and I hope you have the option of cutting back. I retired at 65 because Femara alone had beaten me into the ground. The bottoms of my feet hurt when they touched the floor and ligament problems made me fall. I stopped taking it and things got better in about 6 weeks. But that's neither here nor there. You're managing to keep working and I'm so impressed that you can. I know there are others here who do too.
Good for all of you!
Love from PatG
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hi I take 20mg of melatonin.
Good research backing backing higher doses for hormone positive related cancers. I’ll try and dig some up.
This high dosage was prescribed to me by my doctor who has been doing this for over 35 years and is heavily researched into which supplements support oncology care - so I completely trust her recommendations.
It def knocks me out. I still wake up with hot flashes though. The time released may be helpful for calming down waking up a lot? I started an MM tincture at night which is 2.5mgs of 8:1 THC:CBD. I have been sleeping better! This was also prescribed by the MM pharmacist.
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I recall previous posts regarding Ibrance and UTI infection. I seem to have one now
. It’s sunday, I guess I am heading to ER to get it check out? I have an infection strip which is used to rest urine. It shows a large amount of leukocyte.Anyone have an experience with this? Should I go on antibiotics right away?
Thanks
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thereishope, OK, y'all waiting for me to show up, right? I am the UTI queen. I've had many many UTI's. I have MS so that contributes. I also had atrophic vaginitis way before cancer drugs. But if you don't have any of that stuff, and are also taking an AI or Tamoxifen with Ibrance, that is most likely the culprit. These drugs dry out the urovaginal area and can lead to UTIs. Did your test strip also show nitrites or blood along with the leukocutes? That would indicate an infection. The ER would do the same test strip you have done but what you need is a culture. That takes a few days. With a culture, you will find out what antibiotics will work on the particular infection. If it were me, I would take a pain med like an Azo-type product and take a sample to a doctor tomorrow. I would have to decide among my urologist, my gyn and my PCP. All have drawbacks. None is ideal but that is a big mess you don;t need to hear about. Get a sample to (or leave one) for a doctor you trust and get a culture. Letrozole alone can cause UTI-type symptoms for me but I always get it checked out. This is probably more than info than you wanted but I have it so want to share it if I can help you out.
I've been meaning to tell you guys this and this seem like the time. I have been taking the week off Ibrance to also take a week off Letrozole to try to deal with the above mentioned issues. I've been doing it for about 4-5 cycles. Seems to be working. (Knock on wood.)
edited to add: The ER or a doctor would probably start you on an antitbiotic but after a culture, the infection could end up being resistant to it and you'd have to switch. I've taken so many courses of antibiotics, I avoid that. I don't take one until I know it is the right one.
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Yep, Janet, waiting for you to show up! We hate it that you have to suffer with this s..t, but so glad that you have such good solid advice to provide to all of us on how to approach the problem. I recall that you also have good information on vaginal dryness and various potions to use!
xox
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By the way, has any of you figured out a way to mark particular posts so that you can find them later? Sometimes a post is full of guidance which is especially applicable to you own situation. I haven't figured it out, though.
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Joyner, I haven’t found a way to do exactly that within the website. My workaround if I see a particular post i really find valuable is to take a screenshot. Then I store them in an album I called BC forum. This works best for me when I browse on my phone. If you’re on a laptop or desktop, it’s still possible to screenshot stuff.0
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You showed up Janet! Thank you!
I called the hospital and spoke to the oncologist on call. He prescribed me antibiotics and ask me to take it right away. Also got an urine sample and waiing for the lab result. The strip shows no nitrite just leukocyes. No blood in urine either.
I was feeling okay but now, feeling the chills and bone ache as if I will get a fever soon. I guess I shouldn’t hold off Ibrance meds at any point? Just continue to the take it?
Thanks for your quick rescue and joyerL’s support too. I tend to freak out as soon as something goes wrong!
PatG and friends....thanks for your response in my previous post sharing my stage IV life. One day I will tell you the story about how I started painting...I call it a gift of a bird!
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JoynerL - What I do to save relevant posts for future reference is cut and paste them into a notepad text file. So far it is just one file, doesn't take long to skim through it for something that I am looking for.
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Thereishope, I have never been told to stop Ibrance when I had a UTI, (and I have had several) so I would continue to take it. Just pay attention to any fever. If it rises above 100.4. then I was told to go to the ER.
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You can also use the "Snipping Tool" on your computer to do a pic of just the post you want, rather than a screenshot of the entire page.
If you're not familiar with where it is on your computer, just type "snip" in the search box in the lower left corner of your screen. A menu will pop up and you can click on the Snipping Tool app.
Once you've snipped the post you want, you can paste it to a Word doc and then save as usual. You can then add more posts to the same Word doc as you find more posts.
I hope this is helpful.
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I am an avid user of the snipping tool (love it!) but I only access BCO from my phone (an app would be lovely!) So like others, I do a screen print and save that image to a folder. I have also found the search tool on this site is pretty useful if I can remember some of the exact wording or who posted.
Sorry to hear about the UTI infection, there is hope! Glad Janet jumped in to help
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Hi all, I started back at the page where my name was first mentioned and was diligently making notes of who I had to reply to and thank and who I thought I could help but after 3 pages of that I saw I still had 2 more pages to go before I caught up so I thought "Hmmm, can't get through all that" so here I am without having finished my homework. I suppose I'll get a detention but I'll do my best.
Welcome Josalo, you're in good hands on this thread.
PatGMcR......thank you darling. I've written the name of the LeShan book down and will buy it.
Thanks for your cheers Pat, Frenchhorn, Amica, Tanya Djamila and anyone I've left out. I'm sorry if I missed anyone. I just love the encouragement I get here.
Faith840....fantastic news.
Crazeejane...don't feel bad about feeling bad about being in this place. We all get like that and why wouldn't we?
Skyfly....ask as many questions as you like. There's always someone who can answer them and we haven't been through all this just to keep all the knowledge about it to ourselves! Oncologists go by the neutrophil count, as someone (sorry, I've forgotten who) said. Don't worry if your mother's is low. Mine takes two weeks to crawl back up to just over 1.0 and yes, it does more or less follow the cycle. I tend to lag though. I find I'm at my worst starting from 3 days into the first week of my break and I continue to feel jet lagged right up until I start the next cycle then I get about ten days to a fortnight where I feel ok. Xgeva doesn't have any side effects for me but I was told by my oncologist to bring back a clear report on my teeth before he would start me on Ibrance. I had to have two small molars removed so I'm toothless on the left side of my lower gums!
MuddlingThrough....fingernails! Mine are total rubbish because of Ibrance. They have ridges down them that break open, they crack at the sides, they want to lift off the nail bed and they catch on everything. I'm constantly filing rough edges off them as soon as they reach the end of my fingertips.
Thereishope4us.....I started having UTIs 3 or 4 months ago and would take a course of antibiotics, finish it and 48 hours later the UTI would be back. That kept up through 3 courses of antibiotics so I'm now on a prophylactic dose of Macrodantin, one every day and it's keeping it under control.
On the subject of books, PatGMc I picked up my worn out, written on, highlighted, dog ear cornered copy with book marks stuck in almost every page, saying "This is it!" of Deepak Chopra's book, "Power, Freedom and Grace", opened it up at a random page as I do nowadays knowing the answer I want will be on that page and there it was! Similar to your feelings about LeShan's book, I think. He refers to the body-mind and says that every thought is transferred from the mind to the body-mind so right then and there I gave myself a lecture about the way I was allowing myself to think dismal thoughts because I just knew I was transforming those thoughts into nasty little feelings about my tumours and feeding them by doing that. So I'm starving those little devils to death now, not feeding them. They can go hungry because I'm not about to keep up that morose mood I allowed in. Sure, we all feel down at times and I have to say I've had a number of blows lately that I could do without.....like someone still trying to worm her way in between my husband and me. Even though we're living apart it doesn't mean anyone can have him. We still love each other despite our difficulties.
On Wednesday I'll start my 19th cycle of Ibrance and I wish I'd written down who asked the question do the side effects accumulate. Was it SkyFly? They don't, not unless your bone marrow stops responding. I have fewer side effects now than I used to. Either that or I'm so used to them now that they don't worry me as much as they used to....apart from the fatigue. That has hit me like the sky falling in this cycle! I've hardly been out of my pyjamas! Despite that I've been able to turn my apartment into a jungle. A fake jungle but a jungle nevertheless, with plants everywhere, and I love it. Some plants are real but there isn't enough light to have it all real and fake ones are lot easier to maintain.
I lost a friend I'd become very close to as a Facebook friend last week and it really shattered me. We used to talk online only, with one phone call courtesy of the Messenger thingy and I came to love her so, so much. Unfortunately she had inflammatory breast cancer so she didn't stand a chance of fighting it off. Through my friendship with her, I've become friends with her sisters and some of her other friends which is nice but mornings are just not the same without our chat. She lived in Texas and I'm in Australia so we were at opposite ends of the time zone.
I sure can babble on! I've talked so much I need a nap now
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I’m so sorry for your loss, Leapfrog. 🙏
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I'm glad I found this forum.
First I would like to like to say thanks for the warm welcoming. The tone in here fits me well :-). Not the "feel sorry" even if you needs that as well sometimes but not all the time. You ladies are inspiring.
Thank's LoveFromPhilly. I googled and found a lot of interesting articles on the subject. I took 6 mg yesterday and that did not help, woke up a lot of times anyway.
MuddlingThrough you are right that I need to see how it works with Faslodex. I will talk with my onc but I dont think she will support me. I'm Swedish and here Melantoni is a prescribed medicine so I have to buy this through the net. If someone recommend a special label to look in to I would appreciate that .I'm trying to eat well adding some complements as turmeric and Beet Kvass etc. I also take a Desloratedin every day, it might do some good and it wont harm me :-).
Tomorrow i will get my second shoot of Faslodex
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Josalo, read up on the tumeric. Might not be the best idea depending on your hormone type. I hope others more knowledgeable about it will post. I'm avoiding it for now based on what I've read on the boards.
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Hi all; Its been a while since I posted but I have enjoyed catching up to all the news and discussions. What I do if I want to remember a discussion or tag a link is cut and paste it then send myself an email with description which I save to a cancer info thread. It makes it easy for me to read later. In fact here is one I saved from my old her2support.org site on marijuana which might interest some. I am thinking of taking CBD oils but no the THC because of this. Sorry I just realized that I have to post the whole message vs just a link. I will do it though in case it interests anyone.
Cannabis anyone?
I have hesitated to log in and post this....because frankly it goes against everything I have believed for years and years! But? Here is my experience and I can't explain it. I had HER2+ hormone negative disease two years ago and surgery 20 months ago. I was told that my chances of recurrence were off the charts (the ONCO test) where I scored a 79 on that stupid test. It was predicted I had 20% chance of invasive recurrence and 20% chance of DCIS recurrence. ...all within 5 years. I did whatt I always do with medical things and researched like crazy. I ran across a study and then contacted the researcher. She was an oncologist hospice nurse doing research on the side. In the course of our conversation she shared what she was seeing with her breast cancer patients who used cannabis. Those with HER2+ disease hadf better responses to cannabis than those who were HER2-. I was intrigued but it went against everything I believed about cannabis. however, two months later I decided to give it a whirl. I was put on 125 mg of CBD and 20-25 mg of THC in a 24 hours period.
I never dreamed there would be any way to determine if it helped keep my cancer at bay or not. However, in December during my yearly MRI, a suspicious lump was noticed in my breast right in the tumor bed. I clearly knew what was coming but tried to have some hope. The biopsy was December 12th and it was found to be a very rare form of cells that is usually only found in younger women, and even then it is rare. But it wasn't cancer so I was elated! The researcher I had been working with, asked if she could share my pathology report with Dr. Sanchez from Spain who is doing cannabis research. I gave my consent as long as my name was removed. Dr. Sanchez said that my cells are exactly what she sees when she treats HER2+ BC cells with cannabis. I was (and am) still chewing on that. I was told that Dr. Sanchez was quite excited by my pathology report because it is the first indication that cannabis "might" be helpful in preventing relapse. At least for some types of Breast cancer. Apparently (and I didn't know this) HER2+ Breast cancer is about 80% likely to have overexpression of CB2 receptors which is why the THC shuts it down. However in the other 20% THC can actually INCREASE the rate of growth! This is because THC compromises the immune system and if the tumor does not have overexpression of CB2 receptors then the suppressed immune system allows for greater growth. However if the tumor does have overexpression of CB2, then THC shuts it down and quite well! Given that my tumor was HER2+ and hormone negative there was less concern for growth but even so, I decided to treat it as if I was hormone positive which is why I took 125 of the CBD and only 20-25 of the THC.
But I am still chewing on it. I had those rare cells that aren't usually found in a woman my age, AND it is the same kind of cells that Dr. Sanchez sees when treating HER2+ Breast cancer with cannabis.
Honestly, I think my cancer DID come back but the cannabis shut it down. I can't prove it. It could just be a very fluky coincidence. but it would be one in a million if it is.
Adding to my consternation is my oncologists comments when I met with her in April for my six month check up. She admitted she hasn't expected me to remain cancer free for so long. She expected my cancer to come back within the first year. She said she was puzzled but that my surgeon must have done an exceptional job! I haven't told her about the cannabis because my employer has a "0" tolerance for cannabis and I love my job! I don't want to lose it! (I teach college chemistry)
Any way, I just finally decided I should share. Becuse? Who knows? Maybe it could help someone...?
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Also, Joyner.....I have LOVED the photos and everything about your long boat trip home...and I also love your photo of your home as well. Pat, thank you so much for all of your advice and positive comments. I have really needed them lately. Lucy is a lovely dog, Lauren. So glad you're doing so well. I go for my second CT later this month and try not to think about it due to the old scanxiety. I know I'm forgetting lots of messages I noted as I reviewed the site but I can't seem to remember them. I blame all my former chemo for this poor memory! Take care all.
Cathy
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Good afternoon to all and I hope this lovely Monday finds you all well. I have two more days left in my first cycle of Ibrance and then I have my off week. So far so good, just a little more tired than usual but nothing that I can’t handle. I see my MO next week for follow up and to talk about how things are going. Since I am lucky enough to have Lynch Syndrome I also scheduled my annual Colonoscopy for the middle of December and will be glad to have that behind me for another year. Sounds like that is when I will also be having my next PET Scan to see if this medication is starting to do the trick. Hopefully I will get some good news for a change. That’s would be great!
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Crazeejane, I will be praying for great results from your upcoming scans and tests.
Leapfrog, sorry for your loss. It feels like a piece of us when this happens.
Enjoy a great week everyone whether you are testing, scanning, resting, sitting, or running!
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Thanks IntoLight for your help! I survived the night without having to go to the ER. Now, feeling much better! I just hate these non-cancer related scares.
Sorry for your loss leapfrog. I can't stand the news of anyone losing the battle to this disease.
On a happier note...thinking about getting a maltipoo puppy to keep my daughter company. Maybe it will help me to get more exercise too
Take care all....
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After coming back from a weekend at my brother's, I am trying to catch up with all your latest posts.
One question to the ones taking Melatonin: I had a discussion with my MO a few days ago, if there are any interactions between Ibrance and Melatonin. He told me that the SmPC (like a PIL for doctors with more information) says that in vitro trials (in the test tube) have shown that Melatonin is a light CYP3A4 inducer, which means that it could weaken the effect from Ibrance. It is not said if it will also apply in vivo (in the body), but he told me there would be a certain risk. I should make the decision if I am willing to take the risk for the sake of being able to sleep.
What do your MOs say? Is there really a risk or not?
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