Ibrance (Palbociclib)
Comments
-
Jen - It is funny that your mind immediately assumes that you are being taken off ibrance because it is not working. He could see, in your diagnostics, someone who can stay stable without all these drugs. You may have an iconoclast doctor who thinks we don't need to be on Ibrance forever. It's a balsy move, not the standard protocol, but we don't know whether you have to stay on it once you are stable. Personally I don't see staying on this for 7 years if it "continues to work".
Not the norm, so pull this string. But not unreasonable to consider.
>Z<
0 -
Dear jensgotthis, Congratulations on this fantastic report from your oncologist! You are the very picture of who we want to be!
I remember when 2 of my friends were diagnosed with Chronic Myeloid Leukemia many years ago. There was no effective treatment and doctors tended to write off those diagnosed. But one friend got on a clinical trial at MD Anderson for what turned out to be called Gleevec. Since almost everyone on the trial responded to treatment, the drug was released for compassionate use and my other friend received it. They have both thrived and lived good lives. The one who got it off-trial had to mortgage his house and stack up credit card debt to pay for it in the beginning but, of course, has no regrets. The reason I tell this story is that, even though it was thought Gleevec would need to be taken forever, that has not proven to be so and many have successfully stopped it with no recurrence!
It makes sense to me that you and many of the rest of us will be able to stop Ibrance someday and get routine scans to be sure we remain "in remission", "NED", "cured"...whatever we decide to call it!
As I begin Magic Bottle #7 next week, I'll hang onto this thought and continue to pray for you and our other Ibrance Dancers who pave the way for future MBC Survivors! It's a whole new world!
0 -
Thanks all for you advice re my watery eyes. I wondered if it was Ibrance. I get confused what is sideeffects and what's my other meds and what's just normal.
0 -
hello. I haven't posted here in a while. I joined BCO exactly two years ago, when I started Ibrance. My first post was in response to Hope, who is no longer with us. ❤️ Rest peacefully, friend.
In September my CEA started creeping up, PET was clear. Every month the CEA went up, three more months PET still clear. Finally, last month, after doubling CEA markers, a little shadow in the liver. Had CT, had MRI...having biopsy soon. I don't know yet what my next protocol will be. I would like to say I had two years on Ibrance, but it probably stopped working six months ago. 18 mos. isn't quite as good.
Good luck to everyone here. Stefanie
0 -
Thanks Stephanie. Can you be more specific about your CEA numbers? I am trying to understand what a significant change in TM's looks like. Someday I will post a graph of mine. We track 3 and they are all over the map.
Please stop by and walk us through the decision making process for your next treatment. We all wonder how that will go if Ibrance stops working. I note that you have had a very long run with MBC, no reason you can't beat this for many many more years.
>Z<
0 -
hi Z.
My numbers fall on the low side. My CEA is the only one that moves. When I was diagnosed in 2011, with two hefty tumors in my breast and one bone lesion, my CEA was in the low 30s (normal is under 3, I think). After chemo, surgery and rads, that marker fell back to 2. It remained there, on faslodex and exemestane for over three years. Two years ago, when I had some bone progression , the marker rose to about 15. On ibrance and letrozole , and after CyberKnife rad, it continued to rise for three months, until it started to fall, landing at about 5, where it stayed until this past September. It Climbed a few points a month and this past month was 26. Even with the PEt not really showing anything, my ONC,who has 40 years of experience , knowing that most ONCS don't even look at these markers, was pretty sure there had to be progression. A recent MRI Confirms something on my liver. I'll be having a biopsy next week.
Thank you for asking. I read your very informative posts all the time. Glad to give back.
0 -
Oh, Stephanie, it's hard to face progression, and I'm sorry you are in that spot right now!! Of course you'll have many good options (it seems haven't even had Ibrance yet?) so please let us know the various suggestions from your onc. My doctor is one of those who does not like to scan, and when I asked why she said unless they see something in the bloodwork or I come in with a new pain, they don't worry about it because the studies show that it doesn't matter for overall survival - yikes! Well because it matters to me I will be scanned shortly, and of course may have to join you in considering what's next on the road ahead..
0 -
Stefanie, I'm praying that your liver biopsy will be negative and that what shows up is just some sort of inflammation. I've known so many people through the years who have had "things"/shadows show up on scans that turned out not to be cancer. I hope so much that is true for you.
0 -
Stephanie, good luck with the biopsy. I know that this is a frightening time for you and your family. I'm with Pat...hoping that it's inflammation or something else other than a progression. Will say a prayer. Let us know about you-
-Lynn
0 -
Steph~ my onc is one of those once that use blood work as a major tool, he has never been wrong so far through this awful ride I can't seem to get off of. I haven't scanned in 6months and he calls me very stable because my blood work unchanges each cycle. He also said he doesn't want to scan where there Is no need. If I have a new pain or my blood work shows concerns then he said he would act. I only see my onc once every two months and blood work once a month with xgevea shots. I am keeping you close in prayer, I have read many many articles in inflammation as well, a lot of times it interferes with them reading the results and some women have even opted to scan again but with a different method. I am getting CT scan on may 5th. He said some ins companies have limits on how many lifetime PET scans they will approve. Cancer or not. My first thought was. Awful insurance companies. Just making their buck. I pray your biopsy is negative! I have had one in my liver also. The procedure isn't too bad the interventional radiologist will perform it and it doesn't last long at all. The kicker is you will have to lay on your back and not move for 4 hours straight. They don't take chances with the liver, because of possible bleeding issues. But I had no problems other, than that tiny bed pan they wanted me to use lol that was a sight. I asked if this was a children's floor. My arse isn't that tiny!! Geeze. Help me out here.
Hang in there Steph honey! For me, it was positive, but the amazing part was... they took mine out. Ba bye! Maybe they will for you if it's isolated! And if it's a shadow , also means they caught whatever it is way early because it really isn't fully formed to be just a shadow. Same exact thing for me a small marble sized shadow! There are things they can do. Ablation , resection. Let's pray your surgical onc, will think outside the box like mine did! Sending endless prayers and strength. But don't give up. They can deal with it!!! ~M~
0 -
Z, My MO talked Havalan and Zeloda as next step when we discussed my crazy 1700 to 3000 rise in tumor markers. His thought was a return to Ibrance and Faslodex once my TMs came down. I chose to wait another month and see what happens on your theory of sloughing off of dead cancer cells.
0 -
Cive - Courageous choice, but as long as you monitor closely with scans, you are making a reasonable bet. No clear choices anymore, go with your hunches.
>Z<
0 -
Yes, my MO did schedule me for scans at the end of May! Fingers crossed my white count is up enough I can start cycle 2 of Ibrance.
0 -
is this the Pallas trial? I've just enrolled in that trial. I'm vurrently taking Xeloda but will stop if I start the trial.
Apparently Xeloda is not the right drug for ER plus breast cancer .
0 -
Interesting comment Miamimi. What makes you say that Xeloda is not the right drug for ER positive. I ask as I was on Taxol and was not responding. My onc originally thought I should switch to Xeloda but we decided on Arimidex and, hopefully, Ibrance for now.
0 -
hi! Just popping in. I have been following along but trying to not be on here as much to maintain a life balance. I truly enjoy reading all the posts and helps me in my journey. I Just started my 3rd round of ibrance 125mg and getting the hang of it. I have decided to try taking the pills at lunch time now to see if there is any difference in sleep/nausea etc.
also just had a PET/CT scan and no progression! Still just in my bones (ribs, spine, legs, arms, sternum, clavicle, etc) Doctor seemed a little more excited, telling me that things look like they are healing in some areas. No lytic lesions.
however there was mention of 3 lymph nodes in my neck that lit up.but were "barely above the background" I was told this could have been inflammation, maybe from a cold? Has anyone had lymph nodes appear on PET scan and then disappear on the next?
0 -
Has anyone had swelling and rash on their face with ibrance? I've been battling a stomach bug all week and last night besides getting sick/nausea, I also got this crazy rash and swelling. Had my regular 3 month dr visit for cholesterol and other regular meds, and she conferred with my oncologist's office. They gave me steroids and told me to put Ibrance on hold until I talk to them again. I really don't think it is a side effect of the drug; I think it is probably some type of bug that I've gotten that I'm just struggling to get rid of. My tumor markers in 3 months have gone lower than they were when the cancer was found; so, it really scares me to think of not taking it for a few days. I picture my cancer cells having a little orgy and multiplying inside me. I understand the need for caution intellectually, but my heart doesn't like it at all, lol.
0 -
Casun~ i have heard of inflammation indeed several different times. It can happen. Try not to panic!! Congrats on other good news!! Keep it up!!
~M~
Nbn~ totally understand not wanting to stop! I worry about being ten mins late. I have heard many times of people having to stop because of sickness! Just get well and you'll be back on it in no time. My first thought of rash goes to allergic combos with medications. Add any different supplements lately? Hope youre feeling better soon!
Keeping you all in prayer! ~M~
0 -
Casun - I have lymph nodes that light up on one scan and disappear on the next, only to be replaced by some other lymph node lighting up somewhere else. Its inflammation. Enjoy your awesome scan. Thanks for stopping in with good news. Keep in touch, but your scan gives you license to get back to your life so go all in. We'll know where you are if we don't hear from you!
>Z<
0 -
thanks ladies! I this settles my mind a little. My doctor can be very calm,which is a good thing! But un-nerving at the same time.
Will check back in soon. I have been busy getting my daughter registered for preschool in the fall 😬, planting some veggies in the garden, and now I am off to get my first haircut since my last chemo last November.
Keeping you all in my thoughts.
0 -
Michael -- I didn't think there were any new meds, but then remembered they had me restart taking B12 b/c that was low. I had taken it for a week before the rash ever started, but that could be it. I've taken it before but it is a slight reformulation from the same company and never taken it with this set of cancer drugs. I guess I should stay off of it as well to be sure.
0 -
nbnotes~ I would bring this to your doctors attention, a week sounds about right for the on set of additional symptoms if it is a mild reaction. Itsalways better to be safe. I also take B12. Mine is sublingual. That is the difference I was told. I do believe that might be your red herring! I hope you're feeling better! As if we don't have anything else to deal with right ? Sending prayer to all you strong ladies!
~M~
0 -
nbnotes - i do get weird rashes on ibrance and my scalp has become painful. i put it all in the same skin side effects from ibrance box. it's one of the reasons i lowered my dose from 125mg to 100mg. skin issues mostly gone with lower dose.
However, I want to ask if, by any chance, you put sunscreen on your face, or any other product. One of the major issues during the Year of Weird Health Symptoms that preceded my diagnosis was that I developed an allergy to sunscreen. I put sunscreen on my face and my face blew up like a balloon. Never happened before in my life. I wasn't on any treatment at the time, so it is not a drug side effect. It's more likely the liver freaking out or the immune system in a hyperactive state due to the cancer.
I am a bit paranoid about sun so it was hard to convince me not to use sunscreen. Took two doctors and a lot of suffering before I finally stopped using sunscreen, and the issue promptly resolved.
>Z<
0 -
micmel - I'm supposed to get back in touch with them on Tuesday, and I will definitely mention it. Mine was sublingual too made by Vitamin Shoppe but a different formulation than what I'd bought from them in years past. I am leaving it off to be on the safe side.
zarovka - I haven't worn any sunscreen, but I do have issues with those as well. The only brand that I can wear that doesn't break out my face and/or kill my eyes is banana boat baby sunscreen. You'd think it would be one of the fancy, more expensive brands but they caused me problems too. This time though, I know that isn't the culprit as I haven't worn anything yet this season, but I did have to stop and think about that to be sure. Thanks or mentioning it!
0 -
In reading about the sunscreen, I am curious of the amount of people who use natural skin and hair products? I try to stay as natural as possible, but have not yet found a skin care product that I think is very effective. I also have drove myself a little crazy trying to find hair coloring as well. Does anyone have any recommendations?
Happy Easter to all that celebrate!
0 -
Singlemom1- I make my own lotions and stuff. There are tons of recipes online. I made some lip balm with coconut oil, beeswax and shea butter. I made some for my granddaughter who licks her lips until they are so chapped it looks like she has two sets of lips. I am lucky that I can get local beeswax just down the street. The balm works great.
0 -
Singlemom1....I found hair color at Earth Fare which is an all natural health store.
Hope you can find a store.0 -
Z~ I also have sensitive skin to sunscreen as well. What do you use if you're out in the sun? I am sure the sun is quite powerful out in NM! I know how active you are, so I was just wondering if you had found something that doesn't bother you as much. Usually my eyes puff some what and around my lip area sometimes. Interesting you brought that up!! I was thinking it was my pigment changing because of aging and all the changes in my body's chemistry! Hope you had a nice weekend. Always keep you all close in prayer!
~M~
0 -
Micmel - the only solution i have right now is floppy hats and long sleeves.
This will only be my second summer dealing with this. No great solutions yet. Got completely fried last weekend watching my daughters soccer.
It's possible I am over the allergy, as several have speculated it had to do with my stressed liver. Now that mets are gone I may try a little sunscreen this year.
>Z<
0 -
Well ladies, I am officially joining the Ibrance club. I received word this morning that my extended health insurer has approved me for coverage with a lifetime limit in funding of $500,000. Not sure what that will mean in terms of how long I can receive the drug and if it will impact future cancer drug funding but this is great news never the less. They will make arrangements to ship the drugs to me soon.
Now, hopefully I will tolerate it well.
Hope everyone had a good Easter
0
