Ibrance (Palbociclib)
Comments
-
Hi All,
First of all, congratulations to everyone (you especially Joyner) for having such a great response to Ibrance. It doesn't look like I'll be doing this Ibrance dance anymore. At least for now. I got my pathology results back and the good news is I don't have ovarian cancer as well as breast cancer. The new areas that lit up on my PET scan are progression of the breast cancer that they originally found in my liver. So, Ibrance is not working for me. I'm going to start Xeloda as soon as my insurance will approve it. It's another pill treatment, so that's nice. Supposedly, I won't lose my hair, which is REALLY nice. I also learned that I no longer have to have my lupron shots, so I will no longer be in chemical menopause. That will be different. I wish you all continued success with Ibrance, and I hope that it works for years and years. As for me, I'm going to keep trying new medications until I find the one that finally works for me.
Take care!
Missy
0 -
Good luck, Missy (Georgia!)....we'll miss you on the site. Stick around with us and let us know how you're doing!
0 -
Missy, I think I saw a couple of days ago you are at/have had a consult at Dana Farber? I wanted to tell you they are top notch -- my heart goes out to you but I'm glad you took that step and are putting yourself in such terrific hands.
Lauren, I had migrating burning in my scalp off and on for a couple of months this winter. It seemed to coincide with some hair thinning. But my hair has mostly (80%?) gotten back to normal and the burning stopped. Otherwise, one watery eye occasionally, and of course needing to deal with the ongoing fatigue. But all in all, very managable SEs and I'll take it!
Westiemom, my pain was out-of-this world unbearable for weeks in the fall of 2016, until they finally figured out what type of tumors I had pressing on my spine. (I'm de novo with no primary.) Just four or five days on the I/L combo and I was feeling miraculosulyt better. So these drugs *can* work fast!
Joyner, your posts sometimes cause me great (albeit happy) confusion -- because so much of it is exactly *my* story! I remember reading about your May scans right after I got my scan results in May and did a (happy!) double-take. And I met with my oncolgoist on Monday -- she's usually very careful andmeasured and that almost made her take on where I am right now, and what it looks like, even more thrilling. (I just don't want to jinx it!)
Cure-ious, last but far from least -- I was tickled that you find my research posts helpful and touched by what you shared. (Often I think I’m just repeating what PatMc or Jaycee or Joyner have already found.). I think that my family doesn't want me here either. At first I came on here because I was getting so much out of it, trying to unravel the mystery of this beast. And now it's as much about trying to give back to the wonderful women here who have helped me so much on this journey.
0 -
joynert. I'm so excited for your results! I so hope to hear the same results someday. Mine just keeps getting a little better each scan. I have my next one at the end of August.........maybe it will be my turn. Happy dance for you!!! 😂
0 -
p.s. to Joyner — my MO also warned me that the CT would always pick up the sclerotic mets even though they are healed. She put off my next scan until October. My radiology report no longer says Stage IV but rather “Concern for metastatic cancer.” I’ve been hesitant to even say all this for fear of somehow jinxing it — but as you say it’s SO important to give the newcomers hope.
Like that beautiful poem. :-)
0 -
Penny, it really does sound as though we're hearing the same thing! My onc never suggested that my MBC was gone (as in concern for, rather than existent), though, but rather than it was undetectable by the PET scan. So interesting that we're hearing the same results! Let's keep it up, and all in the right direction....:)
0 -
Initial breast cancer diagnosis in 1999, recurrence in bones Feb 2018. I'm in 6th cycle of Ibrance 125mg, also on Femara, and monthly injection of Xgeva. The Ibrance has really made a difference but having trouble with low white blood counts. I've been off for 2 weeks and after 2 injections of Neupogen, blood levels are ok for me to start Ibrance again. I get tired but not terribly, have had some diarrhea esp during week 3. My finger nails are terrible -- so thin and separating from nail beds in small areas. Nurse practitioner said she hadn't seen that many women with nail issues but since Ibrance is a relatively new drug, they are still seeing new side effects. I have noticed more hair loss, but my hair isn't looking thin yet. I'm wondering if side effects get worse or level off? My appetite has remained good and except for hot flashes, I sleep pretty well. Trying to eat healthy and would like to start walking and yoga again. I had a large blood clot after my bone marrow biopsy which I'm still dealing with. Any advise or comments appreciated. Or if I can answer a question, would be happy to.
0 -
TnQuilter, initial dx May 2017 and I have been on Ibrance/Letrozole and Zometa ever since with no primary identified, stage IV de novo and no surgeries. I have been NEAD for over a year. I have always been on 125mg Ibrance and my white blood counts are low but still over the minimum, and I have never had a break. Fatigue is my biggest se of course. My hair has thinned a lot, but I can still wear it without a wig and even do a non-aluminum rinse on it every other month to brighten it. I went without a color for a year but it made no difference in my scalp or the thinning. I used to have occasional diarrhea but it is rare now. I can walk about a half mile if it is flat then rest a few minutes and then finish the mile, and grocery shopping is just fine. Stairs are agony... If I get any nausea, usually my week off, I can control it with crackers. So I manage and rejoice that I am still here after 2 years. This is my Ibrance dance...
0 -
Joyner happy to see your post I start Ibrance tonite. Was on Anastrozole since Feb 2017. My tumor markers are rising so since I have not had any chemo before (long Story) he is putting me on Ibrance. I hope it works fast I also get fasoldex once a month. Hoping for no side effects. When do you ladies take your pill?
0 -
Hi All,
Joyner - I am so happy to hear your great news! This gives so many of us hope and for me personally, keeps me inspired to keep on when I feel frusterated with this disease. Congrats and I wish to see many, many more posts like this
Just and update for me - I took my last pill for my first cycle today, Overall, I feel okay, just a little tired. It's certainly NOT chemo and for that I am very thankful. I saw my MO on Monday, got a shot to suppress the estrogen from my ovaries. I wasn't bad at all. My WBC is low but nothing alarming and I totally expected that.
I cannot thank you ladies enough for the responses to my first post. I go back and read the responses frequently - it was and still is comforting and great advice. I remember being so scared and looking for someone who understood how I was feeling. As a newbie, there's so much fear of the unknown, and I imagine that we all experienced this at some point. Out of all the ways I searched to find answers and something to ease the anxiety, it was the information and support that I found here that made these first 21 days doable.
Many hugs and much love - not going to stop believing,
Kelli
0 -
TnQuilter, I noticed that it took a long time for your cancer to rear its little head again. My doctor reminds me that we can certainly handle something that took that long to show back up! We ain't skeert!! Do you live in Tennessee? I'm just outside Memphis in Germantown. Happy to meet you. About the low counts, why not insist that your doctor switch you to 100mg. Mine thinks it makes sense to take a lower dose consistently. He's also a Quality-of-Life guy.
Goincrzy8, welcome to our happy band of pioneers! Picture us all cheering you on as you take each pill.
Joyner, Intolight and Penny, it's always exciting to see how well you're doing. The radiologist hasn't used NEAD on a report for me but my reports are similar to yours with healed bones and just one tiny bit of FDG in a node. I can totally live with that though I feel a nudge now and then to biopsy that node and see if it's just inflammation as some radiologists hint. As you all know I have many friends who have survived MBC for decades, some in treatment and some just living their cancer-free lives. I don't doubt that some of us will one day fall in those ranks! Won't that be fun?!
Georgiabird, we expect to hear from you often. Just because this drug wasn't the one for you doesn't mean you won't find the perfect one. My friends who have long survived MBC were treated before Ibrance existed! I have a friend who is thriving on Halaven right now. We expect great things for you.
God bless all of you, my friends.
PatG
0 -
That’s great news Joyner I’m happy to hear about the great results.
Chrissy I have liver Mets and my MO follows up with MRI’s every 3-4 months. My insurance originally denied a PET scan. My onc said that was OK because abdominal MRIs are in her opinion best way to follow up on the liver mets. I think it may depend on the doctors preference and my impress is that insurance approvals also factor in.
0 -
TnQuilter, you may want to add your diagnosis and treatment to the site. It helps those who are more knowledgeable (which would not include me) respond to your questions. Re hair and nails: My nails have gotten thin, and they tend to split from front to back. I've given up on any sort of polish and just keep them short and tidy. So far, that works. Oh, well, for vanity.... I thought that my hair was thinning some months into the I/F/X treatment but it seems to have slowed and perhaps stopped now (cycle 19).
Kelli, is your estrogen suppressing shot Faslodex or something else?
Goincrzy8, do try to be patient with Ibrance. We have found that it can take 6-8 months before real results begin to become evident. It has been a real miracle drug for some, and it's new! Who knows what it can do?! Give it time.
And last, thank God for Pat!!
Hugs-
0 -
HI everyone, I was thrownoff the Ibrance/Faslodex train last month. After 23 wonderful months of what I considered incredible response, I once again had progression in my liver. I still think about all of you here and have become a lurker on this thread. I had to post when I saw the great news - Joyner and Penny, congratulations on the wonderful scan results. I am doing the happy dance and just can't stop. WOOHOO! WOOHOO! I hope and expect to see that same kind of news for many more of you in the future.
Hugs and prayers from, Lynne
0 -
Stay strong Lynne. You will enjoy many more months of another incredible response. There are all kinds of new and exciting treatments out there. Don't give up hope. There is one out there for you.
Great news for JOyner and Penny - Lynn one day you could be doing the happy dance too.
Hugs to all - Chrissy
0 -
I posted a question on July 16th but never really got an answer. My insurance ok's me to have a CT with contrast every 3 months. My previous MO preferred CT's with contrast vs PET. I have only had 1 PET ( at diagnosis ), but I would think the insurance company would pay for at least 1 a year ( my "year" will be in Sept. ). I know each MO has there own preferences. My question is when you have a PET do they do a combo of PET and CT to monitor measurements of tumor AND activity with the glucose substance? That way if the tumor grows in size we will not miss seeing that. I thought I read here before that PET/CT only uses CT to GUIDE PET and not diagnostic. Which is the best way to monitor possible progression?? My MO --old and new---has never even brought up MRI possibility.
0 -
Candy-678, not sure if this answers your question, but I initially had an MRI which showed abnormal lymph nodes, to determine “cancer” activity using the glucose substance, oncologist prescribed a PET/CT combo scan to determine said activity. My guess; is once they’ve determined that the PET/CT combo determined that the activity is indicative of cancer, perhaps a CT w/contrast scan is sufficient moving forward. Today will begin my 2nd cycle of Ibrance/Letrozole, after 2nd or 3rd cycle, Oncologist will request another PET/CT scan to determine if the meds are working, not sure what the plan is moving forward after that. Ugh, Candy, so sorry, not the best response, this is just based on how my Onc is recommending the scans. Your questions are great; found that I need to educate myself on what/how each scan is used; from diagnosis, progression, remission and prognosis.
0 -
Candy, my MBC was diagnosed by a chest CT scan for something entirely unrelated and was thus found by accident. Thereafter, my onc did a couple of immediate CT scans (chest and abdomen areas) in conjunction with a full body bone scan. I was told that the bone scan was more to create a base line and wouldn't really give them much additional information. I have had CTs every 3-4 months since, and then my onc ordered a PET scan rather than CTs last May, since I'd never had one to that point. During this last visit this week, he noted that he would do another PET scan in 3 mo (6 mo from the first PET and with no further CTs in between) since it would allow him to look for any "activity" in either bones or soft tissue. He seems to like the PET scans but said that the insurance company might understandably balk at doing them regularly, since the one in May showed no signs of disease and since they are so expensive.
I hope that this helps. I didn't really know the answer to your question before and thus didn't reply.
Best to you...
0 -
Candy, I am not the expert of the group, but I will share my experience. My MO ordered a PET/CT every 3 months for 18 months, but since I became stable, I now have one only every 6 months. I had an initial PET/CT plus MRI at dx, but have not had an MRI since because my tumors are not located in my breast. My guess is it is a combination insurance, individual situation and MO preference decision. I have Kaiser so all of my medical is contained within their own facilities. I have been very happy with my care.
0 -
Thanks to all you wonderful ladies for your responses. I need to do more research to clarify my question--which is, does the PET see change in size AND increased activity. I know insurance companies do not want to pay for unnecessary tests and also I don't want to subject my body to more tests than necessary, but I want the most information with the tests I do have. I don't want something missed because we chose one type of test over another. What is weird is that every doc has a different opinion. Shouldn't there be a "standard of care" of monitoring our MBC. And then insurance companies would have that "standard of care" in their plans for covering MBC patients. With my every 3 month CT's we see size, but not activity-----I guess. AHHHHHH !!!!!
0 -
Candy, a PET scan is measuring the "activity" of the cancer and the CT is measuring the size and position of the tumor. It depends on what your MO wants and needs and what the insurance will cover. A CT alone is quick and a lot cheaper. My MO does a combo.
0 -
50sgirl, 23 months is a good run. May you get at least that much on this next treatment.
Joyner and Penny (and any others I might have missed), celebrating your good news with you!
Welcome to the newcomers, may you stay on this thread for years and experience the low side-effects that most of us here enjoy.
Today is my 32nd anniversary and we're going to a lovely Napa restaurant for a cold martini and sizzling steak. Hoping to celebrate with you all for many, many years to come!
0 -
Candy; I have never had a PET scan. I just had a CT with contrast and that was how my MBC was found. I have had MRI's but mostly brain MRI's and another couple of chest ones but that was long ago. It's really hard to remember all the tests actually but my impression from my onc is that I will be getting CT's with contrast every three months....he might decide to go out to 6 months if Ibrane is proven to be working, I'm not sure.
Congratulations on your results Joyner and Penny. I am sooooo happy for you. It is amazing the hope you bring to the rest of us. You must feel wonderful!!
Lynne; I've been following all the posts here for a while and will really miss yours. Please do stop in to let us know how you're doing and what the next treatment is like. You and Pat are always so positive and supportive. What a wonderful group.
Cathy
0 -
50sgirl..what is next treatment for you? I am sad you are leaving Ibrance Faslodex.
0 -
I just came from my MO appt and I wanted to post while it was fresh in my head. I hope my info is correct, I would not want to share information to the group if I misunderstood. My MO prefers CT's -every 3 months- over PET. She said yes that PET measures activity and CT measures size. Our town machine is PET only, not PET/ CT combo. Te CT will show areas smaller than PET would pick up. She said area must be greater than 1 cm for PET to catch, while CT can pick up smaller than 1 cm. She said she could/would order plain PET if after seeing CT she feels the need. Thoughts from our scientific sisters???
Also, after discussing test results, labs, etc she sat down and asked how I was doing. I told her "ok" but sometimes I get depressed with the diagnosis. She responded by saying to keep on working. She knows I cannot work at my job I had before diagnosis ( long story ), but that I am working a full time job doing something else. I did not bring up the subject of stopping work; she just said working and keeping busy helps when fighting this disease. I have posted here before about the topic of applying for disability, continuing to work full time, etc. I had come to the conclusion that I am to continue to work as long as I can. I found it interesting that she reinterated the point.
This is my 2nd visit with this MO and she seems very knowledgeable. But I am, of course, going to continue to follow you wonderful ladies and pick your brains on our disease. We have a very smart group here and we can share information. KNOWLEDGE IS POWER !!!!!
0 -
Happy Anniversary, Jaylea!
0 -
candy-678, thanks, you clarified a few things for me, which makes sense why there is a PET/CT scan as well. I’m glad you like your oncologist, that is so important.
Jaylea, Happy Anniversary!!
0 -
This is one of the many studies comparing the use of CT alone and the use of FDG PET/CT. If you read to the end, the conclusion seems to be that decisions about MBC treatment continuation or change for bone metastasis may be more reliable with the FDG. This is, of course, more expensive and there are people within insurance companies whose reason-to-be is denying expensive tests. It seems that new pain helps make the case for a PET so you sure want to report any to your oncologist. I'm sure there are others here with more complete information on all of this.
https://appliedradiology.com/articles/pet-ct-prefe...
Just a little side story about insurance companies: I once had a man in the Flying Colors Center whose wife had cancer so he came in for information/support. He told me he was CFO of a health insurance company and since reimbursement for my mastectomy had recently been declined while the reconstruction was covered, I asked him to explain how that could be. He laughed and said they paid out only the dollars they had earned on investments for each payment period. All claims that showed up after that were just marked "declined" until the funds were replenished. I asked him how they decided which code to use for declining something and he said that was just random. They knew by the time someone refiled, they would pay the bill without explanation. Doesn't that just make you crazy?! I'm sure it's not true with every company but it did turn out to be so for mine.
Love from PatG
0 -
Lynne, I am sorry your ride on Ibrance-Faslodex is over, and am hopeful you get something else just as powerful and effective. What are your options? Lots of us are wondering what's around the corner...
0 -
So many of us are watching the Abemaciclib-Keytruda JPCE trial, here is a mention of it on onc-live. They are still reporting at such an early state in a trial that lacks a direct control (arrgh!) but it looks like it is working(!), and if so, it would be the first time immunotherapy has had any effect on ER-positive breast cancer- can't we just add immuno to Ibrance-Femara?!
https://www.onclive.com/onclive-tv/dr-tolaney-on-a...
0
