Ibrance (Palbociclib)
Comments
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Missy;
I'm so sorry you're going through this. I have had ovarian cancer along with my bc and am just waiting to find out if it's returned. I expect to get a lots of information in the next weeks from scans, genetics etc. My onc told me too that if it has returned I will have to focus on either the bc or the ovarian for a while depending on which poses the most immediate danger but he was also encouraging. He said he would have to get creative lol. If I get any additional information on this I will post it for sure. I'm thinking of you and wishing you all the best.
Cathy
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Georgiabirdgirl, your post encourages us all to stay on the side of hope and advocate for ourselves. I am so glad you found a specialist who can help you.
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Georgia, I'm so glad to hear of that wonderful onc at Dana Farber. And good for you for heading there!
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jaycee49 - Love the poem, thank you!
georgiabird - Hang in there while your 'new' team focus on keeping you well - best of luck!!!
Have a great weekend everyone OOOOOOOOO janice
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Missy;
I forgot to mention that in trying to decide whether my ovarian cancer had returned my onc's have been having my CA125 taken. It has been going up since last summer and before my lung mets were found. This was the focus and efforts were to find an ovarian spread not a breast cancer spread. In my case once on Ibrance this ovarian TM CA125 dropped from 365 or so to 20 (within the normal range) as of a few weeks ago which is certainly confusing my onc's. Have you taken the CA125? I have also heard that ovarian cancers can be ER/PR+ so it makes sense to me that Ibrance could work for us for both breast and ovarian. Also some of my original pathology is confusing to me as it seems very ovarian vs breast type stuff. For instance it is positive for WD1 which is predominately ovarian and not breast cancer but upon review three pathologists decided my lung mets were from breast cancer. I'm trying to say that to me nothing is totally clear with this bugger cancer and getting a biopsy makes so much sense. My oncologist is very positive and tells me that there are many new options for treatment. I hope this is of some interest to you.
Take care,
Cathy
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Good afternoon all
Jaycee49 thanks for the poem. I need hope with wings in my mind at all times
Leapfrog I pray your pain stays stabilized. We all hate the hospital stays. I remember making a crying pleading deal that I would come back tomorrow but just could stay tonight and they let me go.
Liwi I have this cold like infection thing going on and wondering if it’s SE. I have a surgery biopsy scheduled for Thursday and hope this doesn’t prevent it from happening.
Lots of great research on the oasis please Lord make the researchers scientists and doctors smarter.
Tanya
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MountainLady
I have peritoneal, omental, and colon mets (and had ovarian and Fallopian tube mets) discovered at the time of my ovary removal in July 2015. I also have VERY EXTENSIVE bone mets that were discovered at the time of my de novo stage 4 ILC (pleomorphic, Luminal
in May 2015. So far I have no symptoms of any sort from these abdominal mets....0 -
Tanya I’ve had cold symptoms at the times of several procedures including my liver biopsy last year and they were able to proceed.
GailMary digestive enzymes worked really well for me for reflux and constipation for the past 2 years until recently. I am definitely a fan of trying them.
I saw a new gastroenterologist Friday and he is setting up a series of tests to try to get to the root cause my current problems which have deteriorated to the point where even drinking water causes acid reflux. He suspects something may be blocking/backing up my digestion system somewhere. In the meantime I am on a liquid diet and have an upper endoscopy tomorrow.0 -
Liwi thanks for the info about the cold symptoms. I will look for the gailmary digestive enzymes.
Good luck on your upcoming endoscopy. I hope they find the cause and cure it
Take care
Tanya
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Jaycee, thank you for Emily's Hope poem. I think the best thing we can all do for each other is stir up hope.
About those sinus and ear things, I do believe those are Ibrance side effects. I'm thankful to say I've had none of those since I switched to 75mg. Even the popping in my ear has stopped and the hearing loss is gradually improving. I found that loss so stressful and I thank God it can be reversed. I thought a hearing aid was in my future but now I don't think so. Wahoo!
For those of you who have both breast cancer and ovarian cancer, have you been tested for the BRCA genes? (I'm sorry if you wrote that already and I missed it.) I was thinking that Lynparza (a PARP inhibitor) might be a possible treatment for you since it has now been approved for BC and OC. I have a very distinct BRCA1 gene and have this drug tucked in my back pocket!
https://www.cancer.gov/news-events/cancer-currents...
Gerogiabird, my friend who has MBC in her stomach has been on a trial at UAB for two years and is doing remarkably well, perhaps is almost at NEAD. She is taking Ibrance and something unnamed as of yet. You might consider having your doctor see what trials are there. If it's available in Birmingham, I'm sure it's also offered someplace in Atlanta. If not, that's just a two hour drive for a consult. I can get the name of my friend's doctor for you if you're interested. I'm praying for your future good health, my friend! Hope is a beautiful thing.
Love from PatG
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Pat- You took the words right outta my mouth- with dual ovarian and breast, one would want to test for BRCA mutation (and I am sure they have!), but if possible, try to get a trial (probably not out quite yet) combining Olaparib with a CDK7 inhibitor or eventually a CDK12 inhibitor especially (there is some cross-reactivity)-
In the meantime, for those responding to Ibrance, I wonder if the ovarian can let you argue to mix in some immunotherapy? We can't get it yet for breast cancer but the preclinical data say Ibrance makes Immunotherapy work a lot better (for breast and anything else), so it could be that you guys would respond well to the combo, just a suggestion for the MOs...
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mica1 -- thanks for responding. Sorry to hear that you have such extensive bone mets. I hope the Ibrance is helping with that. My original mets were on the ovaries and fallopian tubes. Then 6+ years later its in the peritoneum.
Good news though....my cancer marker this month dropped from 89 to 71. Happy about that!
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I am being tested again for BRCA as I was VUS on BRCA a few years ago and apparently there are many new things to test now, In fact my geneticist has sent my blood to the US for testing. Just waiting. My onc did say that there were lots of treatments for BRCA but didn't mention which. If it turns out I have both bc and ovarian mets I will be discussing your very helpful information. Thank you so much Pat and Cure-ious. So much hope and in this case I could be having treatments for both at the same time.
Thank you so much for the lovely poem on Hope too. I have found over the years that that is really all I need to face this bugger.
Cathy
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Seaway, I remember hearing at the FORCE Conference many years ago that researchers expect to identify as many as 60 cancer genes eventually. My daughter and I both have a BRCA1 mutation so specific they think all who have it may be related. We were both diagnosed before menopause. Both my sisters have had breast cancer but they test negative for BRCA so far. My two maternal cousins have had BC, one with MBC but they have not been tested for the gene (weird, I know).
Just another interesting aside about my breast cancer. I started with ER & PR negative (probably Triple Negative but they didn't know about HER2 then). My second primary was ER, PR & HER2 positive. When the BC metastasized it was ER & PR positive and HER2 negative which is what it has remained. My daughter is 10 years out from Triple Negative. She was given the drug, Avastin, with TAC and has not had a recurrence. Our oncologist gave her the Avastin even though he wasn't reimbursed by her insurance because he believed in it.
That's my rambling for today! Have a good week everybody. I turned in my pieces for the Elvis show and one may have been chosen for the invitation which makes me really happy. I don't think the half million dollars invested in my cancer treatment these past two years has done as much for me as making art! (Sorry if I said that already but it's true.)
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Hi all. I read some posts but wanted to get something posted myself. Bone (spine and hip) metastasis found in April so getting ready to start Ibrance and Faslodex later this week. I will go back and read experiences with side effects. Sending my best hopes for all of you in this situation
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dsodasso, welcome to our Ibrance corner of the world although we are sorry you have to be here. Feel free to ask questions. We all care and will support you any way that we can.
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dsodasso, welcome! We can't wait to hear how well you do! I remember when I first posted about my widespread bone mets on this thread in October of 2016, I was so uplifted by the good results people were reporting. When I had a PET/CT three months later, it showed a remarkable response. By the time 6 more months passed, I had hardly any uptake on the scan and that has remained the same. I first had mets in March of 2012 for which I had chemo and first had breast cancer (Stage II) in 1994. This time I've had Ibrance (100mg and then switched to 75mg), Arimidex and XGeva. You're going to meet amazing people here who have been dancing this Ibrance Dance far longer than me. So join us for a big do-si-do! (Your name sounds kinda' like that!)
Love from PatG in Memphis
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dsadasso - ask as many questions as you need to help you through this period. We have all been there.
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Dsadasso, welcome! You will find knowledge, experience, and great kindness here. Fire away!
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Question for all--
Clarify for me. When you have PET done how should it be ordered? PET with CT or PET/CT ? Isn't one CT guided and the other a combo of CT and PET?
I have only had 1 PET since diagnosis---last Sept 2017. Since then I have had CT every 3 months and we compare from one CT to the next. My old MO didn't want another PET at all but my new MO said she usually does PET every 6 months.
Am I correct in thinking CT shows measurements better but PET shows activity?? I want to monitor the measurements of the lesions but should I watch for activity also? Can PET see something CT might not pick up? Or is CT more accurate? And if I get PET one time and CT the next will lesions grow and we not see growth for 6 months vs 3 months.
Help. I am confused. And probably confusing you all too.
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Yeah Candy I'm confused. Glad you posted that question(s). Very interested in the replies. Pardon my ignorance but I don't think I;ve ever had a CT scan(?) Is that the one they use after 3-4 months after your treatments start to see if the treatment is working? I've only had a PET scan. Do they consider a month a treatment period. Like I take Faslodex/Ibrance. I will be starting 3rd round next week. So anxious to find out if "it" is working.
hugs to all - chrissy
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Chrissy50, my oncologist has always preferred PET/CT scans. He ordered a scan at 3 months (3 Ibrance cycles) and I have chosen to now only have them every 6 months. I promised to tell him if I had new pain which would move up the scan date. New pain also helps make the pre-certification case to an insurer that a scan is necessary.
The simple explanation to me about what the scans show is that a simple CT shows the shape of "something" but the PET has uptake of radioactive glucose which would indicate that the "something" most likely (though not always) is malignant. Cancer tends to make a blood supply for itself and the glucose migrates there. Hopefully, our resident scientists will jump in and correct my errors here!
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More news released today.....
On another note, I am hoping that the information below will be encouraging to our newer members of the Ibrance Dance Club: I was diagnosed in Feb of 2017 with extensive sclerotic bone mets throughout my skeleton, after 27 years in remission. I am about to start round 19 of Ibrance/Faslodex. I had my regular meeting with my onc yesterday (I meet with his nurse practitioner monthly for bloodwork and shots and with him every three months). After very gradual improvement over the months of treatment, my PET scan in May showed "no evidence of disease". Onc told me yesterday that unless I had issues come up, my next scan will be in October. He further said with a beaming smile that if a radiologist who didn't know my history looked at the May PET scan, he'd have no idea that I even had stage 4 BC. HOORAY for Ibrance and Faslodex!
Hugs to all...
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JoynerL, HOORAY!!! That's terrific news! Congratulations - and may you still be doing the Ibrance Dance for a long time to come! I'm on round 3, will have scans next month, and am praying for good results. Thanks for sharing your encouraging news!
Kathy
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Joyner, hooray for great news! I too have wondered whether the medical world would recognize my dx as Stage IV since I have been NEAD for a year now. If I walked in "new" I wonder what an oncologist would say or do?
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I suspect that it depends on the type of scan you do. My onc went on further to say that a CT scan would continue to "see"/ pick up the sclerotic mets, even if they weren't active, because they are "healed" spots on the bone.
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Great news Joyner. So glad it’s working. Also just read the article. I sure hope it speeds up new treatments
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Very happy for you JoynerL.
I am starting Cycle 22 Ibrance/Letrozole. I am NEAD, but you can see the healing in my liver, bone on CT and bone scans. The latest VQ scan showed no perfusion defects in my lung arterioles. I know microcancer cells are still in hiding, but the drugs are keeping them quiet. I live a good life..even with the minor side effects.
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Great news, JoynerL! Happy for you!! I just finished 4 rounds of Ibrance & L and had scans Mon. Saw onc today and bone news was mostly good, some "significant" improvement and some unchanged with a possible (not certain) compression fracture in previously involved vertebra that we will watch. Liver and lungs all improved so I'm pleased. Thanks for your post to remind me that Ibrance takes some time. Onc says he's not changing a thing.
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Wow, Joyner! That's incredible. So happy for you.
Chrissy, I'm sorry more people didn't respond to your question. I didn't because I just don't know the answer. I can tell you what my MO does, though. I get Pet/CT every 3-4 months with my new MO and the time period between scans varied quite a lot with my former MO. He didn't do anything for the first six months on Ibrance then did a scan every 3, 4, or 5 months. I think it depended on his mood, thus former MO. My new MO wants to do every three months (seems to be the standard) but I can talk her into four. I've never had a plain CT since stage IV dx. One reader complained on my Pet/CT report that there was no contrast and he couldn't see things well enough. That didn't seem to change anything. You have to get used to just letting the time pass (which is a good thing) and relaxing. I know. Easier said than done.
I did have a new thing happen at my regular MO appointment this morning. She said I could not have my Xgeva shot because my phosphorus was too low. She is calling in a script for something to supplement it and then check it again next time in four weeks. Anyone ever had that happen? It seems Xgeva and that kind of drug suppress phosphorus.
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