Ibrance (Palbociclib)
Comments
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Leapfrog: Congratulations on your new life. I did a similar thing (independence for the first time in my life) about 45 years ago. Never looked back only up. PS: A trip to Australia/New Zealand is on our bucket list.
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Great news Leapfrog!!
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Ok now I need to ask a question maybe someone has had experience with this.
I was put on ibrance in June 125mg. Had bloodwork after the 21 days was done. ONC said bloodcounts went dangerously too low. Had to wait 4 weeks before blood counts came back to normal. Then put on 75mg ibrance for the 21 days. Had bloodwork done again. Counts way too low again. Had to wait 4 weeks again before blood counts came back normal.
Now, ONC was going to try 1 ibrance pill every other day but he said he doesn't know if the ibrance will have any value taking a pill every other. ONC seems confused what to do with these pills now. So he said to wait and he will check the counts in 2 weeks and decide then. Anybody else had these problems/or suggestions?
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Leapfrog; Listened to that video and it really was good. I'm glad to know Ibrance is now available lol. I hate the thought of ever needing chemo again. Thanks for posting and wonderful to hear you are enjoying your life. Take care.
Joyner; That is a wicked sounding storm heading your way. I hope all are safe from it.
Cathy
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Neogirl,
Have your oncologist consider 5 days on 2 days off. It isn't proven yet, but there is a clinical trial testing this regimen that is theoretically better. It has certainly lowered the level of fatigue in someone that I know that is taking it that way..
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Joyner Thanks for the weather report. It's not looking good for my trip. Where are you in Virginia? Saturday does sound like a terrible day to fly. Does power ever go out in these situations? I could take a delayed or cancelled flight. But, if I got there and the power was out in the house we're supposed to stay in, that would be a deal breaker.
I had a tornado hit my neighborhood two years ago. The power was out for five days. We don't know how we'll even know because DD friend will be in the air to Paris while we are in the air to Baltimore.
I'm really considering not going. Of course our sail boating is cancelled. My mind is consumed by what the iR says tomorrow. I cannot seem to focus on the trip.
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I've been meaning to share this ... there is nothing really new here but I thought it is a terrific summary of recent developments. I also like how many times the word "cure" is used. :-)
https://www.onclive.com/insights/mbc-endocrine-par...
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Penny, thank you for that link.
Btw, Sara Hurvitz sounds like a great onc to have! I love when doctors make an informed decision instead of just going through the motions with protocols. Per my experience, it's not very common to come across that kind of attitude.
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Neogirl,
I have been on 75 mg 2 weeks on2 weeks off for over a year. My counts were way too low on any other schedule. I’m at 35 months and NEAD.
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Penny-78
Thank you! Very interesting and encouraging video.
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so much to catch up on! Congrats to all the good results. Leapfrog- special congratulations for coming on your own. I am sure the decreased stress will be very good for you. Joyner and all other east coasters - be careful and I second, you can replace things but not people. Stay safe. Kitt
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Joyner - just went through your tips pics. Looks like a wonderful trip, hope you beet back to it soon. What kind of burgee is that on your bow. Is that a club burgee. It almost looks Canadian. Safe travels! Kitt
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Grannax, I'll send you a PM on location and the storm.
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Kitt, the regular burgee is from Indian Creek Yacht and Country Club in Kilmarnock, VA. We swapped it out on the bow when we closed and started the trip in Wisconsin. We replaced it with the Canadian courtesy flag when we crossed into Canada and during the parts of the trip in Canada, as our mast has been lowered for the trip through the canals (low bridges), and thus we couldn't fly the courtesy flag there. SO...you may have seen either the ICYCC burgess OR the Canadian courtesy flag!
It's looking as though this blasted storm is likely to come ashore in NC late tomorrow and then head either south, of all things, or inland. VA is looking okay as of right this minute. All is so tenuous. Thinking of everyone anywhere near this storm. I do wonder what happens if you're scheduled for treatment and the onc's office has to close because of the storm.
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This is my week for tests. My neutrophils were good (for me) at 1.2, and my bone scan looked good but my ALP, a liver enzyme shot was way up. My oncologist isn't sure why. I feel fine and have no signs of illness. She will repeat in on Friday and I have a CT scan in the afternoon. My have had gallstones showing up for 8 years but they have never caused problems so I got quite fond of them. Any one have any thoughts? My only supplements are a multivitamin, calcium and magnesium as the pimidromate leaches the CA and MG out of your bones, and the cancer clinic pharmacist told me to take calcium and magnesium.
Hobbes
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Hobbes I think i’ve read that elevated ALP can be a sign of other issues totally unrelated to cancer. Seems like clean scans is the most important news
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So I dont post but I lurk, I have been on 2 cycle of Ibrance and start round 3 today. Saw MO yesterday my tumor markers have risen from 289 to 900. So now he is wanting to do a ct scan. I am so disappointed this isnt working.
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Goincrzy8 —. Hang in there, sometimes it takes awhile for the Ibrance to work, so don’t lose faith. The rise in tumor marker could be what they call a ‘flare’, meaning that ibrance is working and breaking up the cancer cells. Keep in touch and let us know how you are doing. Kitt
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Hey all, I’ve read a few dozen pages of this post and am touched by the positive energy here.
Question: my mom started Ibrance last week, and I noticed her oncologist gave her the 100mg version. Is this standard? She has extensive bone mets and so I’m confused why he wouldn’t start her on a higher dosage. I'm planning to ask him when we see him next month, but I wanted some other people's input. The impression I got is that people usually stay at a higher does unless SE dictate otherwise
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Goingcrzy8; I just saw my oncologist last week and my tumour marker (CA125 as I am an ovarian cancer survivor and my bc mets are in the pleura and lungs) is now down from almost 400 to 12 after 5 months. I asked him if I should do bc tumour markers in addition to these and he said that they are not reliable at all and even US MO's know this (lol) so no. I don't know where your mets are but this is what I know and have experienced. Perhaps give it more time plus scan results. Take care.
Cathy
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skyfly, don't worry for a minute about the 100mg. My oncologist (a former cancer researcher) prescribes 100mg for everyone. I also had extensive bone mets and after 3 months, I showed a remarkable response on a PET scan. After 6 more months all the bone mets showed that they were healed and had no uptake on the PET. I have one tiny place behind my sternum that shows a tiny bit of uptake and the radiologist wonders if it isn't just inflammation. I've now reduced my dose to 75mg with 3 weeks on and 2 weeks off. I have great hopes to take even less if the next scans are good. Give your mother a hug for me and tell her she is in my prayers. Looks like she's got a mighty good son!
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About BC tumor markers: I've said this before but it bears repeating. I ran a support center for almost 20 years and have been a BC survivor for almost 25. I've watched hundreds of people live through the agony of having their quality of life ruled by tumor marker tests. For some people they are just a roller coaster ride without any real meaning. If you can, just put that fear aside and live today. I stopped having them 24 years ago and have no regrets.
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All you East coast friends, be safe. I hope the storm turns into nothing but a squall. Anything is possible!
Love from PatG
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PatgMc,
Thanks for sharing that info! It all makes me feel so much better to read your success story. I hope she can get the same great results as you. I'm a big webmd dr.google fanatic so this last month has been pretty rough. I have high hopes for this treatment; it's such a tough thing having to wait months before you know if the treatment is working. Everyone here is a seriously tough cookie! thanks for your prayers and kind words :
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Skyfly, many of us have found that it takes 6-8 mo or even longer before Ibrance begins to flex its [very powerful] muscles and show positive results. Try to be patient and let it "do its thing". Good luck to your mom and to you. She's lucky to have you!
I've been on 125 mg for 21 mo and doing extremely well. Patg gives good advice.
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Skyfly, my oncologist at Sloan-Kettering starts everyone on 100mg. If she needs to go higher, she can, but her thought is, 100mg has been very effective (especially with bone mets), and has less side effects, so why not start there?
I've been on 100mg since Aug 1, 2017, and currently have no evidence of active disease - my scans were all clear, bone mets completely gone, bone lesions healed.
You and your mom have every reason to be optimistic! Oh, and that Dr. Google guy is a quack... don't listen to him
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SkyFly -- I'll just echo what's been said. I was started on 125mg but moved to 100mg after about 6 months. That was more than a year ago, I've been very fortunate to have had a terrific response as have many, many others. There is great reason for hope and optimism. Btw what's the Ibrance being paired with?
Goincarzy8, I repeat what has previously been said. There are sometimes big "flares" in the first couple of months. It can definitely be the result of healing! When were you diagnosed Stage 4?
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There's a chance I'll be going back on Ibrance. I'll know tomorrow. The IR shocked me by saying I had a negative MRI. For real the MRI did not show anything even in the area where the PET showed uptake. So the plan is to repeat the scans in three months. I'll find out tomorrow what my MO is thinking about in regard to changing to AA. I'm leaning toward staying on Ibrance while we wait for the next scans.
Also since the Hurricane turned it looks like our trip will be OK. So we're going to fly to Baltimore on Saturday. I'm looking forward to it.
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Grannax, I am glad to hear this, and hoping you will do well. I had a "subtle" change in 2 areas on my PET 2 weeks ago, but my MO doesn't want to remove me from Ibrance yet. She just wants to watch me closer. I am praying they are nothing...you give me hope!
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So encouraging, Grannax! Fingers crossed that you'll stay with us on Ibrance! And so happy that the trip is on. Very gray here in Tidewater VA, but no real rain or wind yet. We're on the very outer edges, thank goodness. Hang tight, you all closer!
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Grannax, wahoo! Girlfriend, we left your spot in this happy circle wide open. Hurry back!
Love from PatG
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Intolight, my oncologist says we won't make treatment changes for small things as the scans don't show things perfectly. Here's to only good things for you, my friend!
Love from PatG
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