Ibrance (Palbociclib)
Comments
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MIca1- Oh I forgot. Thanks for posting the info. Good to know about this stuff we take.
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NettaGER
So happy for you! That is encouraging news that it is working so well for you!
Amica
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that would be me laurel I am HEr2+ and on ibrance and femera (letrozle). I was originally diagnosed as her2- off the biopsy but after surgery it came back her2+. Because of the way it was found I have to get extra approvals for herceptin but I am expecting the approval any day now. I am thankful for private insurance to help with the drug coverage (I live in canada)
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Hi Sparkles - good to meet a fellow her2+ Ibrancer! My Onc (US) got creative in that he ordered Ibrance before my Her2 results were back, since they take longer. He was pretty sure I would be positive again and he explained that we might have insurance issues if the Her2 piece is in my record when the insurance processes the Ibrance. It worked and they never questioned it but I do worry a bit about it getting discovered at some point.
Good luck getting the Herceptin approved and keep me posted on how you are doing
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Nettager: Great News! Happy to hear, may the good trend continur
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Fabulous, Nettager!! You got this!
Love from PatG
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great news nettagear!!! I go for my first scan since starting ibrance September 5th. I pray for at least srab
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Nettager---Happy Ibrance Dance !!!!!
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YAY NettaGer!!!!!!!!!!!!!!!!!
So happy for you!!!!!!!
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Netta, those are great results! Enjoy and celebrate now, and hopefully keep going like this for years and years!
I also go my second PET/CT results since starting Ibrance and just like yours, the breast tumor doesn't show up anymore and the bones have no abnormal FDG uptake by PET and look to be healing by CT. Organs still clear. Funnily enough, the only area still showing mild uptake is also in the axillary lymph nodes - biggest is unchanged from the last time at 1.3 x 1 cm and FDG 1.9, but greatly improved from initial scan at 2.4 x 2 cm and FDG 13.3.
Finishing cycle 7 and feeling beyond grateful.
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Piggy, I had similar results to you and Netta with the auxillary node taking the longest to clear. But it now no longer shows--just took longer. Hang in there!
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A stubborn little node! That's the only place I have a small uptake of FDG. The radiologist now even doubts that it's metastatic disease...thinks it could just be inflammation. I'm going with that for me and the rest of you! The only way we would know is to biopsy and who's got time for that?!
Way back when I first had the hot node in 2012 I had a "Name That Node" Contest. I'll try to find the entries as some were pretty funny. "Node to Nowhere" is the only one I can think of.
Love from PatG
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Nettager....WAY TO GO,! YIPPEE!!
Holmes, let us know about that scan. My money’s on you!
I’m popping in and out as we float along toward VA. So far, so good.....in Killarney, Canada for two days with “weather”.
Hugs to all
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Joyner, I am so jealous!! You enjoy every single minute of every single day!!i
Woohoo, Nettagear!!
Hugs and prayers,
Claudia
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Hello everyone: thanks for celebrating with me!
I had a very special treat for myself yesterday. I do not know who if anyone of you is familiar with opera, especially German opera from Richard Wagner. After 7 years of waiting for tickets, we finally went to the very famous Bayreuth Wagner festival to see the "Meistersinger von Nuernberg" yesterday. It was an indeed grande, once-in-a-tifetime experience. Simply wonderful.
Wrt the enlarged axillary node, I have the impression that my immune system is very active. When the tumor was shrinking significantly, I could literally feel my immune system working on it. It was a mild itchy pain. I keep on having a similar pain in my axillary nodes, therefore I believe that my immune system is working there as well. Maybe this is the reason why I had such a goid response to I/L.
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Congratulations, NettaGER! Love hearing good news, and I agree that your immune system is still working hard in that node!!
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Haven't checked in for awhile, but love hearing all the good news! I'm on my 5th month of I/L and still tolerating the 125 mg. I will most likely have scans soon. I hope this combo hasn't failed me this second time around. After finishing my 15 Taxol infusions, I have neuropathy that has me walking (very slowly) with a cane. I'm going to PT twice a week which has helped a lot. But, I still have that "compression sock" feeling in my feet/ankles. And, I can't drive. If anyone has neuropathy, to this extent, I'd love some feedback on how you are handling this.
Again, congrats to all those with good reports!
Hope
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Although I am still undergoing tests, my oncologist has mentioned Ibrance/letrozole to me for treatment.
I was wondering, how do they monitor if it is working? I have at least two large lymph node tumors below the collarbone under my pectoral muscle (probably inoperable) , about 30 X 40 mm each.
Do they do PET or CT or MRI? or tumor markers?
thanks in advance
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Amica; I also live in Ontario and am on Ibrance/Letrozole. I had bloodwork done before I began treatment then once a month during the week off Ibrance. After 3 months I had a CT scan to see what effect the drugs were having (all good!). I don't do TM for bc but do one for ovarian cancer as there was concern it had spread. I asked about TM's and was told perhaps they could be useful if I have a full response. I assume I will have another CT scan every three months. And that's it so far. Easy peasy......as long as it works. I was told I would not be taken off treatment regardless of results as long as they were working.....even if I was NEAD. The oncologists office arranges with the government for payment and the prescription for Ibrance was sent to my drugstore by them. I received a prescription to take there myself for the Letrozole.
Hope this helps,
Cathy
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Hi dancers! Just back from a lovely, lengthy trip to the Netherlands and British Isles, and catching up on news.
Netta and Pat, it's especially heartwarming to come home to good news-so happy for you.
Lauren, had to comment on the picture of your son in full-pitch mode, hair flying. What a beautiful sight.
Leapfrog, you are in my prayers always.
Anyone else lose their voice? Mine has been gone for about a month, along with cough, lung issues, and SOB. Literally, I feel like I've lost my voice in the world. And I have a lot to say! I have scans coming up and a note in to MO, but wondered if anyone experienced this.
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Thanks Seaway/ Cathy. Thanks for replying, that is helpful info for me. Is it chest CT only? Did they ever do PET-CT?
I am glad you are having a good response so far, and hope that continues!
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amica I have PET to follow the activity of my mets. It is much more expensive but I am severely allergic to iodine, the Contrast for CT. Even after 20 months, I'm still seeing improvement.
I have sinus issues, numerous infections, from Ibrance. I went to the PCP today and she's sending me to ENT. We'll see what he says. My PCP said you can't just keep taking antibiotics all the time. I agree.
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hello lovely ladies..it's been a while.. I'm the one with the mega low ANC counts. I'm posting today as we all like to hear real experiences instead of the dreaded googling. In Dec I found I had extensive bone mets and did radiothen started treatment of Faslodex/Zoladex/Xgeva/Ibrance. I started 125 for a week and my white wells couldn't cope, then tried 100 after they'd recovered, still didn't manage, then 75 and I was doing one week on two weeks off as that was all I could manage (white counts - I was fine). PET scan 3 months after starting showed significant improvement on my 'extensive' bone mets even though I had never managed a full cycle. In July I did however manage my first full cycle of 75 and this would have been the second. I had a PET scan earlier in the week and it showed many active spots again with a large area to sacrum (have had right hip zapped with radio in Jan which sorted it out pain and issues walking). So I feel my Ibrance journey has been quite short - I'm quite disappointed especially after so much improvement in the beginning.. I'm now onto the next chapter whilst they decide on the right treatment of with Xeloda or Halvalen plus Keytruda... I also signed up to a trial which sounds interesting , it's like a Genetic GPS mapping (Aurora Big 14-01). So.. that's my experience for then moment. It's a bumpy road, hang in there
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JoT - are you sure it's not just a flare ? There was one lady that the doctor wanted to take her off but she stayed on and it helped. It seems funny how it was working with lower dose and now it's not. I would check into that.
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Had my latest scan results today. Can be a bit confusing on bone scan. So the CT scans for chest/ pelvis looked stable but bone scan had places lighting up more. The doctor called the radiologist and was told that bone scan are really for detecting new spots and not really very reliable on telling if old spots have progressed. For that they compare to your last CT and that looked stable for me. So it could be inflammation of bone regeneration. Not an exact science. I wish the same radiologist would read the scans. Honestly, I’m not always sure how carefully they ready the scans. But will continue with same treatment of 125 and letrozole. Has been a year for me.
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Amica; I have never had a PET scan and have had a bone scan recently. Years ago I had a few MRI's mostly to look for brain mets. I have CT's of the abdomen and chest as I am also an ovarian cancer patient. But otherwise I would expect just the chest.
FYI, as you live in Ontario, there is a program called the Octane Program which I am doing. They took biopsies of my ovarian and lung tumours and sent them for genetic testing. If/when Ibrance/Letrozole stops working for me they will use the genetic mutations on my tumours to decide the next treatment and any new treatments which targets these mutations will be sent to my oncologist on an ongoing basis. Perhaps you could inquire about this for yourself.
Cathy
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Amica and Seaway, I have only had PET-CT scans plus one initial MRI upon original diagnosis. I get them every 6 months starting my second year and since I am NEAD, quarterly before that. I live in the US so I don't know if that makes a difference. My onc is content with the info she gets from them. I get one next week so we shall see how I do.
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thanks Seaway, Grannax2, and IntoLight
thanks Kathy for the info on the OCTANE registry.
In Ontario PET-CT is not approved for breast cancer imaging believe it or not. An oncologist needs to put in a "special access" application, which my oncologist is doing. Ontario is an outlier in terms of PET-CT imaging for breast cancer---in the rest of Canada, and the rest of the world, it is standard imaging for advanced breast cancer.
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JoT, I'm with Holmes. Might this be flare? So often Ibrance takes a while to really make a difference. Might you talk further to your onc before making a change so quickly?
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congrats netager
Hope you’re having fun Joyner
Tanya
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