Ibrance (Palbociclib)
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Leapfrog- I thought I could use my posts as a record of all this stuff, but just realized that they are not kept, except for very recent ones! Ah well, when progression occurs, I'll use these boards to try to crowdsource the various options to take to my MO for consideration!
And ask Z, like everybody else!!! :- )
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Cure-ious, You should be able too see all your posts if you do a search rather than click on your name. Click on the Menu button, then choose Search. Enter your username in theSearch by Member Name field, hit search, and all your posts should come up for you.
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When I was first diagnosed, before we even knew I had bone mets, I had the tumor surgically removed. It never occurred to me to leave it there! My primary doc sent me to the general surgeon, and he did an excellent job - a lumpectomy, or partial mastectomy, as he called it. The tumor was attached to the underside of the skin on my upper breast, and he cut out the tumor as well as an inch "clear margin" on all sides, and three or four lymph nodes (one or two looked bad, so he took the next couple for testing). I have a curved scar that's fading nicely.
When I later went to Sloan Kettering, my new oncologist was surprised that I had had the tumor removed. She basically said, "We don't do that anymore..." Oh, well! For my peace of mind, I'm glad I had it done. I know it affects eligibility for clinical trials down the road, etc, but I can't change it now! I had one bone met - it was small, can't remember the size - and after six cycles of Ibrance, it was gone.
I, too, worried about the weight issue. I'm over 200 lbs, and my Onc started me at 100mg, like she does everyone. I asked if she thought I might need the higher dose, since I'm larger than the average cancer patient, and she said she's noticed no difference in efficacy based on weight. As she put it, her lightest patient weighed 92 lbs and her heaviest was 320 - all were given 100mg Ibrance. Some have done very well, some not as well - but with no correlation to their weight.
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Ciaci, a question: was it your Sloan-Kettering onc or your first one who prescribes 100 mg of Ibrance to all of her patients?
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Joyner, it's my Sloan-Kettering oncologist. My former oncologist never even mentioned Ibrance... which is why he's "former"
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Thanks, and wow....don't blame you! My first dropped the ball several times, so I changed, as well.
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Ciaci: I did not mean to scare you about primary tumor surgery. There are several pros and cons and I believe that even the docs are not sure about how to proceed best. My MO would even do the surgery if I insisted to have it for psychological reasons (there are several women who cannot stand to have this lump inside knowing it is cancer).
Thanks for your input about lack of weight correlation. I am a lot heavier than you (280 lbs at 5'10") but at least within your MO's frame. And I am on 125 mg.
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Netta, that's a good point regarding body size, I am also tall and could stand to lose a few pounds, which might be why my ANC levels can hang in there at the higher dose
Joyner, thanks for the link! They found yet another way the cancer can escape Ibrance-Femara, in this case by mutating (rather than amplifying) the HER2 gene. So they have to sequence the HER2 gene to find the mutation, rather than check for high level of expression (which happens in amplification). The reason why our particular cancer has progressed is important, because it should guide the next treatment. So how do we make sure the biopsy genetic analysis checks all these different possibilities? A good question for the MOs...
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Cure-ious. Another good question. Then how do we know MO will use the treatment indicated by the genomic analysis? They tend to only trust pathology. I hate cancer.
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Cure-ious....I copy and paste posts that I find useful and keep them in a file in my computer. But, yes, 50sgirl is right. I've done that to search for a particular post as well.
Two things I'll throw into the mix for no particular reason other than someone might find it useful. One, I'm small and slight and I'm on a trial so I was started at 125mg of Ibrance. My neutrophils always take two weeks to come back up to 1.0 or slightly above and it wasn't until the level was less than .5 after the first week's break that my MO was able to drop my dose to 100mg, according to the trial protocol.
The other is that I had immediate surgery, a BMX, because, although the primary tumour in my left breast was only 2cm, the one in my right breast, the one that caused the mets, was 10cm. At operation my BS found that 29 out of 29 lymph nodes were cancerous. I'm glad I had surgery. Interestingly, my husband and son said they could immediately see a difference in me post operatively. Despite having just had surgery and being filled up with analgesia, they said my skin colour had improved already. Where my complexion had been grey and waxy, apparently it looked clear and fresh again. I can't say I noticed anything!! And I'm not advocating surgery for everyone by any means, just commenting on how it was for me.
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Pat - I LOVE hearing your inspirational stories of mothers who have lived a long time with Mets!!! My anxiety around my daughter can feel unbearable at times so hearing positive stories about children growing up is very positive for me- thank you!
LaurenH - Regarding the antidepressants I was on, it was serzone which I guess is an older one and not used very much at all. I had a hard time finding an antidepressant that didn't make me feel worse so they tried the serzone with me. I have heard many people on effexor so I think you are good!
Thank you everyone for the positive feedback on being NEAD. I hope this for all of us for a very long time.
Sorry about my delay in response. I tend to only go on the boards sporadically as getting away from "cancer thinking" keeps me sane!
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Kind of off topic but thought I would ask...I just started Ibrance/Faslodex this month and after two weeks of Ibrance my neutrophils are 0.8 so have to take a week off before rechecking which makes me kinda nervous. I understand Neutropenia is a side effects as noted in the literature and reported by many on this site...so wondering if anyone knows why Neulasta or Neupogen aren’t an option? Sorry if this is covered somewhere in this thread .... I know that dose adjustments are made, etc ... but why when these other drugs are available
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Hi Ann,
the drop in neutrophil counts on Ibrance occurs for a very different reason that the from chemo, and with fewer consequences- Ibrance arrests the growth of the cells, whereas chemo kills them. So the effects of Ibrance on neutrophil function are rapidly reversible and noncumulative, and not associated with greater risks of catching disease. Neulasta pounds on the bone marrow to push out neutrophils, nothing so extreme is needed for Ibrance the cell numbers drop but does not risk your health. Also many of us noticed the fatigue in the early cycles goes away as the body adjusts and its a relatively easy drug regimen...
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Cure-ious - thanks so much for explaining the difference in the impact on white cells with Ibrance! That was new information for me.
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Thanks Cure-ious - I appreciate your explanation- makes more sense now
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Cure-ious, I had no idea the difference in impact on blood cells between Ibrance and chemo. Thanks so much!
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stable! What a beautiful word! My oncologist says my scans show no new tumors and no growth of old tumors so Ibrance is working! My tumor markers however are still up again this month for hire even then last month. Higher than they have been through this whole thing. But he doesn’t seem at all concerned. I had a CAT scan of her head and torso as well as a bone scan and an MRI of my neck and all of them show no new growth. So hoping and praying that this Ibrance gives me a good long time
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Gracie...hooray! Stable! It is what all of us strive for at this point. I celebrate this news with you. Go out and celebrate!!!
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YIPPEE, Gracie!!!
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That’s amazing news Gracie! Stable is a wonderful word!
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Stable is Stupendous news!! Wishing you continued stability (and to all of us MBC'ers)
I just finished my first week in my second Ibrance cycle, so far, so good! Trying to rest so that my neutrophils don't work 'overtime'...Have a great weekend everybody!0 -
Cure-ious I am a bit of a science nerd too!, Ph.D. in neuropsychology, worked for a cancer agency, etc. Can you send me some references to the finding that palbo (Ibrance) suppresses neutrophils rather than killing them off? I am not sure that my oncologist is aware of this. In addition, neulasta is not recommended for Canadian women on Ibrance and there is a fair amount of hostility to that limitation, not understanding that it is science based. Thanks
Jo
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Gracie, yay for stable! How long have you been on Ibrance? If it's only been a short time the markers could be flaring from tumors dying.
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I am on my week off of third cycle, Piggy. I hope you are right
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Hey Hobbes! My PhD is in biochemistry! Love science, but recently got involved in fighting gender discrimination at the top, now is a big time for change!
here is the abstract I was quoting, too busy/lazy to read the article...
https://www.ncbi.nlm.nih.gov/pubmed/28419480
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Wonderful news, Gracie. May you be doing the Ibrance dance for years to come! I'm starting cycle 9 and have scans next week. Hoping to hear that very same word.
Janky, glad to hear you're doing well. Have a restful, healing weekend.
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Hi Ladies!!!
Sorry like I said it’s been hectic here but I just started round 6 at 100 mg. My labs looked a lot better than a month ago. My neutrophils were at a 2 mine haven’t gone below a 1. I have been feeling kind of foggy but I think that might be from sleep.
Sleep I have terrible sleep issues my mo prescribed me ambien. It helps when I am dead tired and we discussed that this meeting and she told me to take two benedryl at night and that helps and she said I can do about 20 mg of melatonin.
I know someone mentioned the nosebleeds I had that but it was like dry my nostrils were dry and I tried everything I think it is an se. My mo said we could try adderall to help with the tiredness. She told me to think about that. I have experienced depression but I have been under a lot of stress but I am trying to get better at it.
Now se’s I have had this month my legs feel heavy and my right knee is bothering me. I actually felt nauseous late last night after I took my nighttime meds (gaba, letrozole, a muscle relaxer, and then I take my sleeping pill-hadn’t taken it yet). If that keeps up I am going to message my mo on Monday. Tonight after my fiancé and I ran errands and I cooked dinner; after eating and was helping out in the kitchen I got really weak and my fiancé got me downstairs and I got in bed for a few mins and got up to take my rings off and I almost passed out again I got really wobbly on my legs. I take iron and ate spinach tonight. So I dunno. My mo and I discussed about lowering me to 75 but since i am doing so well on 100 she feels right now I don’t be need to go down. I agree with her on that. I am keeping my symptoms in a journal for each week to discuss. That helps me. Especially since i have brain fog. Well going to go just wanted to say hi and hope everyone is doing well.
Chani
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Gracie - awesome news! I hope and pray you stay stable for along long time!
Janky - I am one week behind you. Starting Day 1 of Cycle 2 tonight. My Onc scheduled a Pet for May 8 to check (mostly to see if the rib met I had radiated is gone). When will you get your first scan?
Hobbes and Cure-ious - Love that we have 2 brilliant PhD scientists in this group! So cool
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Great news Gracie!
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