Ibrance (Palbociclib)
Comments
-
Novagirl I was told because both make us tired and effect our immune system. Hopefully your. Numbers will be fine. I also started radiation while taking ibrance and I was speaking with one of the Rad nurses and mentioned ibrance and she told me to contact my Onc. They told me to stop Ibrance immediately and then did a CBC before resuming Ibrance.
Tanya
0 -
Novagirl
The radiation nurse questioned me still taking Ibrance while on radiation. Since both lower your immunity I guess that’s why.
I asked my ONC and he had me discontinue Ibrance until Radiation was complete. Also did a CBC before Ibrance resumed.
Tanya
0 -
Thank you all for you support and kind words about my recent progression. Seaway, it was good to hear about your experience with Taxol. It is helpful to know what I can expect.
Time-for-a-cure, Congratulation for continued good results. It is great to know that you have been on your current treatment for so long. I hope you see success for many more years.
Nell, Welcome to the thread. As you have probably already discovered, there are many special, supportive people here for you.
I had been away from this thread for several months, and I had forgotten what a wonderfully warm, kind, supportive community you have here. Although I am no longer on Ibrance, I will continue to read your posts. It reminds me that in this world full of turmoil and craziness, there are still many loving, giving people willing to provide help to those who need it.
Hugs and prayers from, Lynne
0 -
Hi 50sgirl. So..um..what?? Progressed on Xeloda so soon? I can't imagine how you are feeling, but I feel you will find "that one" drug that will give you a long run. Are you a candidate for targeted radio therapy for your liver mets..like y90? We are here for you- definitely not alone, okay?
0 -
Welcome Nell -
Radiation therapy works on rapidly dividing cells - cancer cells. Ibrance affects cancer cell growth. Therefore, Ibrance could reduce the radiation therapy effectiveness. That's why they should not be going on at the same time.
Gumdoctor
0 -
Well, I had my biopsy yesterday on my breast tumor to see if it's still H + P + . The doctors are stumped as to way anti-hormonals are not working for me. Ful/I are shrinking my breast and lumph nodes but are allowing my bone and lung mets to grow. So, now I'm in waiting mode again. But glad that the biopsy will give some clues on what treatments will actually work for me. So I'm content. Thanks for all your prayers getting me through this long month. Hugs to all of you.
0 -
Hi Neil. Welcome to this fantastic group of women. My SE's haven't been bad. I've been very lucky. My only one really is fatique. Hope that you do well on this treatment.
0 -
Thanks for the congratulations, I am delighted it has worked so well for me. My true hope is that it works just as well for all of you...or you find something else that doe. Take care and wishes for good health, few SEs and clean scans for all. Kitty
0 -
Hi Nell19;
I have SE's just like Muddlingthrough.....fatigue, slightly bloody nose. I am very near 70 and I think the younger girls have more energy and are more active from what I have observed although that could be from necessity with kids, working, etc. Having had chemo a few times this is so much better from a SE point of view and being able to take it at home without all the trips to the hospital is great.
I have just noticed that my original bc breast (the left one) is very red and weird. I've been noticing something about this breast for a few weeks but not really anything in particular. I am going to watch it tomorrow and if it is the same I will go to see my gp on Friday. She's terrific and a trip to see my onc is an hour's plus drive and we're having snow and ice rain tomorrow. I had a rash on it once before and am hoping its the same thing but of course I fear inflammatory bc. After 3 cancer journeys (bc, ovarian, mbc) could I be lucky now....of course.....after all I am on treatment so you'd think so....right!!
Cathy
0 -
KatyK, I had some awful burning and redness on my eyelids - they felt terrible and the MO told me to get some eye drops. 🙄 He didn’t think it was a side effect but dry weather. I got some eyelid scrubs (ocusoft lid scrub) and the individual eye drops (the bottles have preservatives) and it helped quite a bit. It happened a few times and it was awful! Hope you find some relief!
0 -
Hi Love from Philly,
As the only male in this thread, you'll probably remember me from the atheist pages. Also I'm the North Philly guy. Well circumstances have turned me around again since the Tamoxifen I was on stopped working. I found out in early Oct 2018 that I now had mets in the supraclavicular lymph nodes, in lymph nodes in the lung (1 on the R. side) and several in the hilum where the bronchi enter. I'm now in my third cycle of Ibrance/letrozole and am getting lupron injections every 3 months. My most recent scan a couple weeks ago showed that the lymph nodes in the thorax have returned to normal size, and the neck tumors have not grown. Still no bone mets, so this seems to be working for now. SE's have been the minor nose bleeds you and others have had ( though in the first round they were much worse, even forming clots...TMI?) as well as fatigue and sometimes dizziness & weakness. A caveat is that I also am having trouble with balancing my blood pressure meds and this could be caused by low BP.
I'm in the 3rd week of Ibrance and SEs seem to be improving, so they may be an adjustment to the return after the one week break. It seems at times like chemo brain, which is not surprising as it is a chemo treatment of sorts, disrupting the reproduction of rapidly growing cells. It will be interesting to see how this plays out in the off week, and if they return after resuming. Now that I know what to look for, I'll be more vigilant.
It amazes me that between my initial DX and now, Ibrance was given the go ahead. I'm shooting for 2 years of remission, and hoping for 5. Hey, everyone, with all the work in immunotherapy, there may be a breakthrough for MBC (in my case, MMBC...hey, reads like a graduate degree, eh?) by then. At least I might qualify for trials. As a member of such an elite "gentlemen's club", I plan to take this abduction (I still refuse to call it a journey) as far as I can. If I gotta have this damn disease, I want to make it to count for something, and I'll never give up hope!! In the meantime I guess we guys must continue to ride on the ladies'-research coattails.
Go '63rs!!!!!
Barry0 -
Welcome Fiddleman. Sorry you now have need for this group but so glad you found us. We are here for you.
Gumdoctor
0 -
Thanks Gumdoctor. It's sad that anyone has to be in these types of discussions, but glad that, if we do, there is support! Looking at your Dx history, it seems you really got hit hard. Hope all goes as well with you as possible. There are a lot of options and I've heard of several people that have spent years surviving with stage IV. That's what keeps me going.
0 -
Yes I have had it very bad after 3.5+ years of the Army failing to diagnose bilateral stage 3 node-positive BC. Not 2 years after stage 3 tx did signs of MBC mets to spine show up.
But there are others here who have it much worse than me. And as you are learning or will learn, how we respond to this impossible challenge is what matters.
I mentally dug my grave and sat in it, waiting to die. Then I found these amazing survivors and role models here, full of caring and compassion and street smarts about how to survive and THRIVE. They saved me when I didn't even want to be rescued.
We are here for each other and you are most welcome into the fold.
Gumdoctor
0 -
Thanks for your service and I'm both sorry and ashamed that our government treated you with such indifference. At least this citizen holds all of our service people in high regard. Glad that your "grave" was one fox hole that did not cave in. And if it were to do so now, there are tons of people wielding shovels.
Fiddleman
0 -
Hi Barry, oh I am sorry that you are here with us - but yes, the Ibrance crew is a very loving and supportive group. I am glad you felt comfortable sharing and hope you continue to feel so moving forward.
I totally can relate to the brain fog from the combo of Ibrance and lupron. I am on those as well as Letrozole and Xygeva. I feel kinda dingy and spacey and I often forget what I am saying mid-sentence. So if that is what chemobrain is like, then I have it!
I often think about cancer like another lifeform (possibly alien!) that has taken over my body. The medications cause it to scurry away and hopefully stay away for a long long time (like dropping an anti-algae agent into the middle of a pond that has a layer of algae laying on the top).
Or like my friend April who started WildFire magazine says: cancer is like a wild fire burning out of control and what remains afterwards of our bodies is the aftermath - but with wildfires there is always new fresh young strong growth. The fires help us to grow and return from the ashes of the burn. An interesting metaphor.
0 -
Wandering - thanks for the advice on the eyelids,I may try that. The doc does think it is a SE as it can cause dry skin and seems to happen on my eyelids. I’ve tried a couple things that only made it worse. But it may be worse now due to dry winter weather.
Barry - abduction instead of “ journey” is good. I have used journey myself and never quite comfortable with it. Shouldn’t a journey be fun with travel and wine and scenery!😀
Gumdoctor- hope you’re having a good day. Can’t thank you enough for your service, I think anyone who serves deserves so much more support and help for the rest of their lives.
Philly- my cancer metaphor is from a dream I had a few weeks ago. In this dream there was a small orange snake - no eyes, no mouth, could not move by wiggling. He really wasn’t very scary at all. But others were scared and warned me to be careful as he was a poisonous snake. I told them the snake would not bother me and he would just stay on the sides of the room. So that’s how I think of my cancer now - maybe I can live with this thing and it will just stay on the sides. I hope so!
Hope everyone had a good day
0 -
My metaphor is “the bear in the room"....lately he has been sitting quietly in the corner and I'm not so scared.
Hey, maybe this could be a new thread?! What is your cancer metaphor?
0 -
Thanks for the welcomes, replies and wisdom:) so I wanted to share this interesting news with y’all, I went in for labs after 17 days on ibrance and my wbc went up a little! My whole medical team was very surprised at that! It’s still only 1100 but the fact that it didn’t go down further after taking it another week is interesting right? I believe in prayer for sure and the only other thing I did was using colloidal silver. I had been using it all week for mouth sores so maybe it helped with wbc? Also I may have found culprit or atleast contributor to the swelling (lymphedema) in my legs. A nurse friend told me that aleve can cause swelling, sure enough dr google agreed, so I quit taking it and swelling went down drastically. Not 💯 % yet but I did drop the 10 pounds I had suddenly gained with the swelling. Btw I was taking 5 aleve a day per my onc for tumor fevers, which they totally cured from day one! So if they come back I will take them again but for know I’m enjoying the non swelling. Also I totally forgot about taking Claritin with zometa this time and it was pretty horrible without it:/ so thankful for a place like this to learn and share little antidotes and tricks to get by! Blessings to you all!!0
-
Gumdoctor, I'm sure Nell can speak for herself, but I specifically remember noting that she had in her sig line that she was Stage IV with bone mets - as a bone mets patient myself, I notice those things
0 -
I love the idea of a new thread about what is your cancer metaphor!
I love the little orange snake and the bear sitting in the corner!
These are wonderfully significant images - if anyone enjoys Carl Jung or Jungian archetypes - this images are some of the meat and potatoes of his work!
0 -
I'm a little ticked off this morning. I keep seeing the Ibrance ad on tv.....my new normal lol. It features a bubbly woman and her family enjoy activities with no hair loss, lots of energy, etc. Her life looks so good. The problem is I'm totally exhausted most of the time, my hair is sooooo thinned out, bloody nose, dry skin, etc. but my family watches this ad and figures I'm just lazy and I'll live forever. It's so frustrating. Am I alone in this?
Have a great Friday,
Cathy
0 -
Seaway, your post made me laugh because I distinctly remember, when I first joined in May of 2017, there were LOTS of posts about how no one could stand "Julie" and HER "new normal", LOL. It's a pretty high bar, that's for sure, but I've come to realize the variation on that old saying is true: When you've met one MBC patient, you've met one MBC patient. There are so many different paths, so many different reactions, it's impossible to generalize, and it's sure impossible to live up to those idealized patients presented on TV.
That being said, I know I've been very fortunate, and most days, if I didn't know I had cancer, I wouldn't know I had cancer. My only side effect at this point is tiredness (doesn't even qualify as "fatigue", again, on most days). So I'm kind of on the other end of the spectrum; my kids look at these commercials and wonder why the women are walking so slowly, and being driven around by their husbands!
Hoping your side effects lessen as time goes on!!
0 -
Ciaci - Thank you for correcting my terrible oversight. I deleted my erroneous post.
Nell - Please accept my sincerest apology for missing your bone mets status. Shame on me. I blame it on chemobrain because I don't know what else to blame it on.
Gumdoctor
0 -
Hi all. I have been busy the last few days and now sitting down at the computer to get caught up with you all. Seaway- Your last post---Yes so true!!!!
So, a question for you all---- I am on Cycle 13 of I/L and Lupron. The last 2 months I have noticed my hair is thinning A LOT. I looked at a pic of myself from November and compared it to now, my hair is MUCH thinner. When I just slide my hand through my hair I come back with several strands in my hand. I have not changed shampoo, I condition routinely, I have not changed any meds. I called the pharmacy I get the Ibrance through and asked to speak with the pharmacist. I asked him if one could have side effects several months into the treatment ( I have not had hair thinning before now ). He said usually side effects are seen at the beginning of the treatment, but some people can have delayed side effects. He wanted me to mention this to my MO. I have appt next week. What do you all think??? Have you developed new side effects months into treatment?? What do you do for thinning hair?? At the rate my hair is falling out, I will be going bald. It is falling out faster than it is growing in!!!!! How about toxicity of Ibrance, or a build up in the body of the med?? My monthly lab work is not changing.
Welcome, Fiddleman. Glad you found us. Post anytime.
I am seeing my PCP today for my routine visit with him and I see my MO next week ( first appt since CT earlier this month ). Interested to hear what both docs have to say. I will keep you informed.
Hugs.
0 -
Cathy, you are totally not alone. Ibrance stuff also shows up in my Facebook feed every day which makes me not even want to look at it. My pet peeve right now is the new Verzenio commercial. Those patients are "relentless" because they take it every day with no break. Does that mean we are not relentless because we take a week off? I think not.
0 -
Thanks KatyK. I can't agree with you more. My recent trip to the Galapagos was a journey. We'd planned it for over a year to celebrate our 25th wedding anniversary. It WAS also supposed to be a celebration of 21/2 years in remission, but the beast reared its head just before we left. Went anyway. As an ex-biology teacher I knew I'd be enthralled. My wife was skeptical, but she thoroughly enjoyed it as well. I don't know if I've shared this before, but we are now looking ahead only in 2 year chunks. We're planning to go to the balloon festival in Albuquerque this fall and who knows where from there. These are things to plan and look forward to. Cancer was NEVER on that list and never will be! My own cells have decided to revolt, and are holding their normal DNA control mechanisms hostage...consequently abducting ME. I'll fight to keep on journeying while fighting the abduction for as long as I can.
Candy, thanks to you also. I don't know if you have had mouth sores, but rinsing with baking soda and warm water 3-4 times a bay works for me and have reduced them when present (sometimes over night) and kept them at bay when they are absent. My ON nurse suggested it and it really helped. Anyone out there, if ya have mouth sores, try this before sending money down into the black hole of Big Pharma.
Segue to Seaway....Don't forget that these BigPharma advertisements are designed to sell drugs. Every time I see one of these ads, I note that at some point the patient, with an inevitable smile, pauses to wistfully gaze into the sky or at a gorgeous nature scene. Meanwhile the list of side effects drone on at lowered volume and with the speed of an AK47. Geez, I'm so happy to have diabetes/rheumatoid arthritis/dementia/IBS/CANCER etc., etc. (for you Sheldon fans out there, yes that is indeed sarcasm!). They sure as hell aren't going to show the real consequences of having these maladies. If they did, people might wonder if their product actually works (of course, that doesn't stop me from wondering anyway.) I used to get pissed about this, but then I realized that they were just sucking me into their game, so I mute them...better yet, stream NetFx!!!!!!!!! OK. Rant over...now just don't get me started on FaceBk
Be back soon. Fiddleman0 -
Thanks, Philly.
Yup, I've gotten the impression that you all don't really want anyone to enter this particular boat, but if they have to, you welcome them with comfort, care and advice. Glad to know that I'm not totally crazy for suspecting chemo brain. Sometimes it's hard to determine if the symptoms are a result of the cancer, of the treatment or just part of normal living. Then there's always the niggling presence of paranoia. Hey, as some of my old CHS buddies used to say, "Just because you're paranoid doesn't mean they aren't out to get ya." I just posted a little rant to KatyK a few minutes ago re her liking my "abduction" metaphor vs. "journey" You might be interested. Yup, I've always thought that if I don't die from cancer, I'll die with it. The beast never goes completely away, and even if they do manage to kill all the rogue cells, who's to say other normals won't mutate. Just as long as I can keep the beast asleep, maybe I'll last long enough to see immunotherapy for M-MBC. "Give my regards Broad St. Remember me to Rittenhouse Square...."
0 -
Fiddleman, what a wonderful journey to the Galapagos with your wife. I’m feeling a bit of cabin fever and ready for a fun journey. We have several to look forward to this spring. Since my skate skiing is going well maybe a nearby ski trip in February.
I would love to hear about others dreams or metaphors for their cancer. I’ve always had very vivid dreams and love trying to interpret them - they can mean whatever you want. I’m a retired school psychologist so somewhat familiar with Jung. Maybe a new thread for dreams, whether daydreams or asleep.
0 -
Hi all; After my first chemo I discovered I had chemo brain, I was working at an election and my job was to answer phones and give out polling addresses. People would call with their addresses......usually simple things like Maple Street or Apple Blvd. and I would look up where they voted. I found out very quickly that I couldn't remember how to spell Maple or Apple. It was the biggest shock and needless to say the job ended for me very quickly. Using computers with autocorrect you don't notice necessarily things other than forgetting where you left your keys, peoples names or your schedule for the day. I'm not sure if I have it again with Ibrance/Letrozole but I do know my memory never totally recovered from my chemo's so I don't worry about it.
Cathy
0
