Ibrance (Palbociclib)
Comments
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Michele - I have dropped from to 100mg from 125 even though my neutrophils are fine. I am pretty active and basically okay but I still felt the side effects at 125mg were too much. Starting my first full round on 100mg tomorrow. I saw some improvement just dropping my dose in the last half of the last round. Hoping for an even better result the coming months. My logic was this ...
Do the trials show any difference in efficacy between 100mg and 125mg ... no they did not.
MO's do not factor in how poor overall wellness effects outcome ... Anything that significantly interferes with your ability to maintain a basic exercise plan, eat well and generally engage with your family and world has a huge impact on outcomes. This is documented (See the stage V fitness thread header post) as well or better than the efficacy of any single drug much less a small dose change.
My MO had to be pushed a bit to prescribe 100mg, and doesn't want me to drop to 75mg. The trials sorta show some reduced efficacy at 75mg. I have a hard time attributing that to the dose, but we have agreed on 100mg. As you can imagine I am a bit of a pain of a patient since I challenge EVERYTHING and do things my own way. But deep down I know my MO loves me.
I will say that I am glad I stayed on the highest dose for a year. Ibrance/letrozol can significantly reduce tumor load in the beginning and you want to do that as much as you can. However, after a year to 18 months you will pretty much get all the reduction you are going to get.
As for the PET scan, the truth is that they simply do not distinguish cancer from inflammation. Doctors (and patients) are confused by this all the time. I would go with the radiologist. You seem to have a radiologist who grasps the limitations of his tool more than most and I would stick with him like glue. I would ask him whether a CT/Bone scan would be an interesting option for your next scan. It is a hot debate whether PET scans are always the best way to go because of the false positives. There are several major cancer centers that will not use them anymore, I believe MD Anderson is one of them, for this reason.
My strategy at the moment is to go with the PET scan because it is slightly more sensitive to teeny weeny remains of the mets in my liver, but I take the results with a grain of salt. There is alway some weird lymph node lit up in my lung or something lighting up in one scan, disappearing in the next. Leaves me a bit unnerved until it disappears. But that is what inflammation looks like on a PET scan.
Sorry for the ambiguous PET scan results because it will almost certainly mess with your head for the next 6 months. If the radiologist likes the CT/Bone scan idea, consider doing it in 3-4 months. I am confident it will show that Ibrance has dealt a major blow to your mets and that will leave you a little more at peace.
And peace is what I wish all of you this beautiful spring weekend. Go out and enjoy it!
>Z<
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Des the upset stomach in the morning get better
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>Z< thank you for your response. I do think there's not just one answer in treatment. I wish we had a naturopathic oncologist. We have a few doctors that deal with alternative medicine but they are self taught so it's hard to know what's best to do. Thanks for being so open with what you are doing. I need to remember it's my right to choose what I think will help me and listen to my body
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Dianarose, yes, the upset stomach does get better. I had a rough time getting started on these meds but most things have settled down except for the fatigue and muscle pain. I think they gave me Zofran for the upset stomach and I was also told that Pepto is okay to take. Hang in there it does get better. Praying this treatment works for you and all of us. I start Rd # 16 on Wednesday. May we all have long runs.
Hugs,Faith (in the future).
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Thanks Faith. I don't have any pain so I am lucky there. Just praying it works for tummy mets.
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Dear M and Z,
Thanks for letting me know your thoughts and your oncologist's thoughts. I will stay the course at 125 but I do believe I will keep searching and searching for something. I can not take Nsaids or ibuprofen due to allergies, I break out in hives, and have never thankfully had anything more than minor occasional inflammation.
Fingers crossed for you , Dianarose!
Thank you, I can always find answers and care on this site. I hope everyone has a good day
Michele0 -
Just happened to go online into my medical charts. It says there is cancer in the overlap of the right breast. MO never mentioned this. So d
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Dianarose, I was meant to check in here right now and read the fear in your words. Like you, I have gone back to read scan reports and found myself frightened by something I never took in before. What I've realized is that this medicine is reaching into every cell in my body, the ones I know have cancer and the ones I don't. Yours is doing the same....tiny little pills dissolving and doing their work. Please do some deep breathing exercises and think about other things you can do to take your mind off the fear while healing your body. In the meantime, I'm here praying for your peace, your healing and that your joy returns in a big way. God bless you, my friend.
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DianaRose -
Pat has pretty much said it all. I will only add that it takes 9-10 passes over a long period of time to really read these reports because they are so terrifying. For the same reason, doctors tend to focus on the few bits that build a story that supports the treatment option they have chosen for you. They have one overwhelmed person after another in front of them all day long. They are careful not to give people more information than they can process. Often that is very little.
I assure you if your doctor did not mention it, it doesn't effect your treatment plan. However, you should still add it to your list of things to discuss at the next meeting so you understand what it means and doesn't mean for your treatment. The more deeply you can understand these reports over time, the more pro-active you can be as a patient. And pro-active patients do well.
>Z<
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Z....wise words!
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Thanks Pat and Zarovka-I am just so overwhelmed. I have mets in so many places, peritoneal, stomach, intestines spine, skull , vaginal area and now this. It just really freaked me out.
I am doing ok so far in Ibrance . Some nausea . Cold chills and decrease in appetite is about it. Will do labs on Thursday.
MO is going to do my tumor marker after first cycle. Should there be some improvement or is that too soon?
Thanks again for your support as I was totally freaking ou
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DianaRose - On this treatment plan tumor markers can rise BECAUSE the drug is working. In my case they rose for 3 months and then the scan at 4 months showed significant reduction of tumors. TM's are useful in certain context; however, only your next scan is really meaningful.
With all you have going on, stress will be your worst enemy. I not great at dealing with stress myself, so no advice from me. But if you have ideas of what will give you peace, go all in and do it.
>Z<
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Zarovka-good to know about the tumor markers so I don't freak out if they are higher. MO says my scans don't show much as lobular doesn't show well. After my last scan the radiologist said it looked like the same amount of cancer just less angry. Not sure what he meant
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Oh goodness. Lobular is so tricky. Not much to go on except tumor markers but it can be hard to tease good information out of tumor markers. In any case, do give this treatment time. It can take 6-9 months to get a response.
>Z<
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Dianarose, there are so many of us out here thinking about you, praying for you, and hoping for the very best for you. Hang in there. And follow Pat's good advice on deep breathing.
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Dianarose, and any others who might need this:
Cancer Support Community has psychologists on call to speak with you when you're anxious. They also have live chats available.
Just phone 1-888-793-9355. These are the people who operate The Wellness Community and Gilda's Clubs across the USA. The hours are Monday through Friday from 9 to 9 Eastern time.
I'm thinking of all of you survivors today and hoping you are feeling strong and happy but that you know reaching out for help is not a sign of weakness.
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Pat- thanks for the information.
When I got up this morning I checked My bankaccount to find it had been drained. There were two large purchases made with a pay pal account. I don't have a pay pal account!!! Took awhile to get Through to pay pal but they were able to trace it to some guy in Ohio. Had to go to the bank and shut down my debit cards and get new ones. I will get my money back but could take a couple of weeks. Put me right over the edge.
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Dianarose~ I know that is the LAST thing that you need right now. It happened to me with amazon two months ago. I got my money back also but it's just the point, like how much can one person take? I am sending prayers for peace your way Diana! I had my money back the very same day. I am so sorry that you're dealing with all of this. ~M~
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Dianarose, I'm so sorry this happened to you. I remember well how upset I was when it happened to me. I would contact Paypal and the bank and insist on getting the money back in your account immediately. It should not take weeks. It's their mistake, not yours.
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I have had some morning nausea and chills but tolerable . Do side effects come the longer you are on Ibrance or would I be getting them now. Fatigue isn't too bad as I just got off chemo not even two weeks ago and I took a nap every day. I haven't had to do that since I started Ibrance.
Pat and Micmel- it's my bank that is slow. Pay pal said they are ready to send the money back once they get the paperwork from the bank.
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Dianarose~ I am ending my fifth round of the ibrance and I really don't have any side effects at all. I am convinced that my side effects are from the anastrazole. When I first started, I had a great deal more pain. Now my pain is basically gone and I am running almost everyday. Today I hit 10K steps. For the first time. Hang in here and let the medicine work for you. I am praying that each day you willl feel better like I seem to be. But I guess it's all in the scans. Which for me s may. 😩Scanxiety. I am keeping you close in prayer! ~M
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Dear ones,
Haven't posted in a bit, but following along and feeling acutely everyone's victories and setbacks.
Good news! I am still an Ibrance gal! My tumor markers came down a bit this month and I am not having pain, so no need to go to Fulvestrant yet.
It's a mystery why I had pain and elevation of the markers December through February- something was stirred up, and has since resolved.
So, I asked my MO a question today about those with just bone mets having long survival times. I had bone/liver mets at diagnosis, but the liver mets were absent on last two scans. I asked would I be considered "just" a bone met type person now? Answer is "NO", because initial presentation was with liver mets.
Then, MO went on to say that though the mechanism of metastasis in not fully understood, they theorize that the cancer cells may have specific proteins that "match" with the organs they invade. It is an area of research getting significant attention in hopes that a means to block those attachments will be discovered. He said that the breast cancer that metastasizes to bone only is a very specific "subset". Interesting for sure and for those of you with "just" bone mets, may it be the sluggish subset that stays put.
Dianarose, i have thought of you so often these past weeks. Sooo glad you finally made it to Ibrance land- it is a great treatment and once you heal from all the big gun chemos you were getting, it is my fondest hope that you will feel so much better. Sorry you were the victim of that vulture cyber-thief. What is wrong with people?
I hope everyone is feeling reasonably well both mentally and physically. I love you all my MBC sisters, may the force be with...MJH
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MJH - Thank you for sharing your doctor's perspective. My MO is tolerably competent but has very little insight into cancer research. It seems odd to learn more from you guys than my doctor, but that's how things go in the middle of nowhere. (Northern NM)
>Z<
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Dianarose, I'm so sorry for that screw up with PayPal, it really is just not fair. You certainly don't need that. As for the side effects, everyone seems to be different. Some have none and others have several.
I just received my next dose a few days ago and was reading the insert when I noticed one of the side effects they mentioned was stuffy nose and cold like symptoms with sore throat. I wake everyday with a very stuffy head and a big mucus clog in my throat. I saw my MO today and mentioned it and he said he never heard that. Saw three other women on Ibrance today and nobody complains about it. So we are all different.
I also asked him what he thought about the new drug Kisquali. He said he actually had a women on it in the trial. She was on it for about a year before it failed and she is now on IBrance. I said that I'd read that the SE's were a little easier and he said that they don't know that yet or if it's any more effective than Ibrance.
So my tumor markers are bouncing around a bit again. My CA 27--29 keeps going a little higher than normal but he's not concerned yet. I'm having the next Pet/CT in a couple of weeks and if all is stable, I can reduce my Ibrance to the 100mg dose to see if my fatigue gets better even though my neutrophils are fine. He said it would take about a month to see if its better and if not then I would go back on the 125 mg. So let's hope it's lots better. Z, you're leading the way, I'll be anxious to hear if you notice much change.
Have a goodnight' sleep everyone.
Faith (in the future)
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Prayers for a new treatment plan that is effective and long-lasting.
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I got my PET scan results yesterday. My MO said I had mixed results. Most of the
Tumors in my lung, chest and liver show a modest amount of improvement. But one stubborn guy in my liver is worse. Its not bigger but more active. It's taking in more of the glucose? So off I go today to see the Interventional Radiology doc to talk about Y 90. Also, yesterday I had a brain MRI, because of some dizzy spells I had last week. It was a lot to take in.
Has anyone here had a Y 90? I was surprised to find out I might be a candidate for this. I have numerous tumors in my liver. As far as I can tell there is
Only this one in one lobe, but a cluster in other lobe (that are about 6 cm by ?). I'll find out more today and share with you later. I read about how they do it and talked to a friend who recently finished hers. It doesn't sound too bad except you have to stay awake. Yuck. I'm going to beg for conscious sedation. My son is an . Anesthesiologist, maybe he can speak on my behalf. Or better yet, come and be my anesthesiologist. Ha
They have to do the mapping procedure first, to see if the vein goes to the tumor. If not they can't do it. And I'm sure that if it will help me, I will say "Do it".
My doc also indicated that if she didn't see more improvement in the next PET we would move on to, a different therapy. I didn't ask what, don't want to know yet.
Faith, one of my SE has been a constant cold/congested feeling since I started Ibrance on Jan 5. Sometimes it's bloody, too. I did not know it was listed as an se, my doc keeps saying it's just dry or allergy related. I've had no fever.
I'll write more tonight.
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I got an email today for a Pfizer-Ibrance research study. Says at completion they pay you 400.00. Has anyone else gotten this
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I'm in my sixth cycle of Ibrance-I've been lurking on the board for some months and have found the information from all of you so helpful. I appreciate having this place to come to where others understand what we are going through. I've had relatively minor SE's-I do have a constant sinus/runny nose issues, some hair loss, dry skin, cracked finger nails and fatigue but nothing serious. The tips on eating yoghurt every day eliminated my mouth sores. Grateful to have this community.
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Dear Chicagoan,
Welcome to the BCO community. We are so glad that you reached out and that the information that you have been reading has been helpful. We hope that you will stay connected here and keep posting. The Mods
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Hello. I had to reduce my Ibrance dose from 125 to 100 today. I have been on 3 cycles. I thought everything was going smoothly, just the typical tiredness (but walking REALLY helps with that). My platelets and ANC (absolute neutrophil count) did not recover on my week off and it was becoming a monthly pattern and getting worse. My med onc said the efficacy will not be different. Just a little scared.
I started Ibrance 125mg three weeks after my 4th and last A/C chemo. My med onc said it would take a few months just to recover from the A/C so have patience. I am SO much better since recovering from that A/C torture- it does take time. Have patience. Ibrance is a good drug if it works for you.
The good thing is the A/C knocked out the micromets in lung arterioles and the Ibrance/Letrozole reduced my widespread liver tumors by 60%. The Ca 15-3 has decreased from 423 (Oct 2016) to 67 (March 2017). Liver enzymes are normal. Will find out soon if liver MRI versus PET scan is in my future to confirm active versus dead liver lesions. Brain and bone are clear so far.
Hugs to all - and thank you for all the support from my met friends on BCO. We live in a different dimension.
Sandi
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